The Paradox Syndrome

Vulnerble

2012-01-26T22:56:00.000-07:00

   Today I had my liver clinic appointment. This happens every few months to check on my health, diet, moods and basically my physical and mental status. As we were ready to wrap things up I confided that I have been a bit overwhelmed with all that has happened in the last month or so. I suddenly found myself choking back tears and realized just how much of an emotional roller coaster I have been on. As we talked, tears started to fall. I had no idea how much I have been holding in. I was reminded that it has almost been 4 years since this began. The fact that I was still holding it together and still working was by their standards pretty amazing and the transplant team recognized this. They ask me this question at every clinic, "Are you still working?" I tell them yes and they always give me a wow. "That's great."
   I left clinic feeling a bit spent. I was somewhat moved by the experience I had just had and I realized how easy it is to ignore some of the things in life when maybe we should be embracing them. I think I have a lot to work through, but I am grateful that I recognize it.
   Sleep well, everybody.

Happy Birthday to Me

2012-01-24T19:48:00.000-07:00

No cancer! The doctor wasn't able to take a biopsy though because he couldn't reach it. He did feel comfortable enough to say he didn't think it was anything. I was out for quite a while and was very groggy waking up. Lois and I celebrated by going home and taking a nap. We decided to hit the local rec center later and went to soak our tired bodies in the hot tub. I started feeling really sick after about 15 minutes. I don't know if it was the hot water or what, but I was very nauseous.
I am happy with the news.

Pins and Needles

2012-01-23T22:36:00.000-07:00

I have my Endoscopic Ultrasound tomorrow. Hopefully I will learn what I need to know before I go home. I understand that if it doesn't look threatening, than the doctor will be able to tell me right then. But, if they have to do a biopsy I may have to wait another week.
This past week has moved by slowly. Once again we have been on pins and needles. Waiting to have this test done kept us on edge for three weeks and when it was cancelled I still felt it wasn't over. That nagging feeling proved right when my coordinator called later in the week only to tell us that there had been an awful mistake and that we would have to take the test after all. We have had to wait another 11 days and I have allowed myself to feel disconnected. I am certain that it has been some protective mechanism to keep me from going insane. The test results teeter between devastating and miraculous news. I will know when I see the expression on Lois' face. I am looking forward to seeing a bright smile.

Looks like we're going to have to do this thing after all.

2012-01-13T20:27:00.000-07:00

The cancelled test is back on the calendar. Cancel the all-clear on the pancreatic question.
Oh, that's right. The hospital cancelled the all-clear.
I was never very comfortable with this EUS (Endoscopic Ultra Sound) cancellation. I had even pressed my transplant coordinator as to what the deal was. For instance, there was a conversation between the EUS specialist and one of my other transplant doctors discussing my CT scans and they agreed that the findings didn't warrant any further testing. But the transplant doctor I usually see was sure we should be certain. I found myself wanting a definitive answer, but Lois was just happy it wasn't pancreatic cancer. And after we discussed it, we decided we'd feel blessed and move on.
Not so fast. The transplant coordinator called yesterday, but we were out getting Jeni a kitten. Today, she finally reached me with the news: The radiologist who decided we didn't need the specialized test we waited three weeks for had not actually seen the right CT report. The decision was based on incomplete information. When the coordinator tried to track down how the entire thing came about, the original transplant doctor who wanted the scan done had a Eureka! moment and suggested they weren't considering the complete report.
He nailed it.
So, this time, we only wait 11 more days because they decided to get us in "right away."
It's slated for my birthday. I'll either get a really great present -- a cancer all clear -- or it will be a birthday I never forget. For all the wrong reasons.
Lois cried. I'm actually kind of relieved. Not that she cried, but because now we'll know.

1/11/2012

2012-01-11T22:06:00.001-07:00

After three weeks of worrying about this spot on my CT scan, I was informed that the procedure had been cancelled. The specialist reviewed my scans and said he didn't see any need to do it because it would be a waste of time and money. They are all but certain it's not cancerous. I was a bit shocked, but I'll take it. I only wish the doctor would have reviewed these scans earlier and saved me some grief. Needless to say, we are all excited about this recent development. I also learned yesterday that my MELD score went back up the night I spent in the hospital. It is now 22.

Today I looked at the UNOS website and found out that I am now among the top ten people listed at my transplant center. There are 2 people in the highest category and 8 in mine. This brought me chills. It is both exciting and frightening. Suddenly everything seems surreal.

The Calm Before The Storm

2012-01-04T23:19:00.001-07:00

   Yesterday I experienced one of the worst days of my life. I pray that it never happens again:
   I am looking through my family's eyes and I shrink in abhorrence. I see fear and sadness. There is also forgiveness and even a few laughs. Nonetheless, my yesterday resulted in a ride to the hospital in the back of an ambulance that has forever changed my perspective of hepatic encephalopathy. The ambulance crew had to rehydrate me on the way to the hospital and I spent the night drinking Lactulose. As some may remember, Lactulose is the medicine that expels the ammonia from the body by diarrhea. When the liver can no longer do it on its own, the ammonia finds its way to the brain and you experience certain mood swings. There can be hallucination and disorientation and perhaps the worst one is being argumentative. I get that way. I had slipped beyond the sane to the insane.
   I had turned argumentative and yelled at Lois as she tried to get me to drink some Lactulose. She could see what was happening to me. I was lashing out and sweeping things off the shelves. Later, as I tossed and turned throughout the night at the hospital, recollection came back in bits and pieces. At on point I had a sort of tunnel vision of my oldest standing far away with a look of panic. Last night I learned what real fear looked like. It saddened my heart when I thought of what my family had to endure. I started to cry, but then the night nurse showed up, taking my vitals and seeing if I'd gone to the bathroom yet. They were giving me Lactulose every couple hours. Sometime during the wee hours, I had come around, but it wasn't until 7 in the morning before I finally started to use the bathroom and the fog truly cleared.
   I am still taking the Lactulose and I am back at home. Hopefully I will remain here until transplant. Hopefully things will return to normal. For all our sakes.

Really?

2011-12-20T01:59:00.000-07:00

I've had a few people ask me about my test results from my CT scan. I apologize for my delay. The truth of the matter is we received news last Tuesday that my CT scan showed no occlusion in the portal vein or TIPS. But on Friday one of my doctors called and said that after reviewing the CT scan again, they found what appears to be a cyst on my pancreas. I asked him about treatment and he said that they would have to go in and drain it to see if it was cancerous. He also told me that most pancreatic cysts are benign and that he didn't feel like there was anything to worry about. Of course it is hard not to worry about; so I have been dealing with this in my own head.
When I asked him what would happen if there was cancer, he said that they would have to remove part of the pancreas and that in the worst case scenario I would be removed from the transplant list. The procedure is called an EUS and my appointment is scheduled for the 10th of January. That gives me a whole lot of time to worry. Sigh.

New MELD (Kind of)

2011-12-08T00:06:00.000-07:00

I had my labs done yesterday. My MELD dropped 2 points. It was a bit discouraging in the midst of everything else that was going on. I also managed to get my ultrasound scheduled for this morning. I figured that since it was scheduled for 7:15 in the morning, it would go fast and I'd be out in less than hour. While the technician performed her task, I told her about my blood clot in the portal vein and asked if she could look at it. I was curious about its size. When the test was nearly done she had trouble looking at the whole area. She excused herself and went and got her boss hoping he would have better luck. He seemed a bit bewildered and asked, "You've had a TIPS procedure?" We told him yes and let him know it was at the beginning of the year. He explained that he couldn't see any blood moving through the portal vein and it looked like the TIPs procedure wasn't doing its job.
Some of you might remember the TIPs was put in to help me with my ascites and to re-route the blood flow that was alarming the doctors because the varice in my stomach were dangerously close to bursting. The tech didn't like what he was seeing and admitted that the equipment they were using wasn't picking up the images the way it was supposed to because it was old. He took his readings to the radiologist and the radiologist called one of my doctors to tell him what was going on. Unfortunately it was still early and we had to wait around for a couple hours. Lois headed back to work so I decided to go to my transplant clinic and wait to hear from my doctor. I figured if I was there and he showed up then he could come out and talk to me. Meanwhile Lois had decided to turn around and come back and wait with me. I felt bad because she had taken so much time off yesterday. Eventually my doctor called and my nurse set up a CT scan that he wanted. Now we have to wait for the results. They told me it it would be 24 to 48 hours. I am hoping to hear something on Friday, but I'm guessing it won't be until Monday. This has really been a lousy couple weeks. I have 10 days off, three days have already passed. I am going to vegetate for the next 7 days. Maybe. I don't know yet. I'm going to be housebreaking a puppy. More on that later.

Eye's Up Here

2011-11-29T14:25:00.000-07:00

   There was a time a couple years ago when I noticed my nipples had become very sensitive. And when I say sensitive, I mean all it took was drying off with a bath towel and I was all but screaming. I mentioned this problem to my transplant coordinator and she said that it was probably one of the medications I was taking and she arranged to have one of my doctors prescribe something different. If memory serves right, it was a steroid medication. I read somewhere several months later that it was also prescribed for transgender patients. "What the ***!" I thought. Why had I not been told this earlier? I was also aware that a new symptom had developed that I had not noticed before. My breast had become larger due to something called gynecomastia which immediately made me self-conscious. Whether this had anything to do with the medication or not doesn't really matter. What mattered was that everyone I spoke to seemed to be scrutinizing my chest and I was all like, "Eye's up here Missy." Since then I've taken more time to review all my new medications.
   So anyways, the other day Lois reached across me brushing my nipple and I about screamed. That familiar pain had returned but it is only bothering one nipple. That it was limited to only one area seemed odd to me so I'm going to go see my regular doctor and see what he has to say. I'd feel a lot better if the sensitivity wasn't just limited to one area. I've also realized that I'm no longer uncomfortable with the whole big breast issue. It is what it is and I'll live with it. In the meantime I have new labs coming up and another ultra sound. They check me for liver cancer every six months and look for tumors and any other weird out of the ordinary spots. Hopefully they don't find anything.
   I get mixed feelings from time to time when I think about what the past 3 1/2 years have brought our way. I have had a lot of time to reflect on things in my life. Most people may find themselves reviewing their lives over a matter of time measured in days, weeks or months. I find I do it daily. As the world fly's by I seem to clutch at thin air. Uncertain of the future. Wanting. Waiting.

Current MELD

2011-11-16T21:41:00.000-07:00

   The other day I woke up feeling pretty sick. It lingered all day long. Luckily they make nausea pills. It got me thinking about my transplant region and how my wife read that they normally don't start transplanting until you've reached a MELD of 28. That usually means you're probably sick enough to be in the hospital.
   I am still a long ways off according to those figures. Right now there are only 3 people listed in the highest category and 9 in mine. I try not to think about this, but with transplant getting closer and my MELD rising, it is hard to put aside. Plus having these aches and pains are a constant reminder. I continue to get the shakes and I'm constantly tired. The encephalopathy is happening more often and I fear the worst. Losing my mind sucks. I'm beginning to wonder how much I got left in me. It is starting to show in my work.
   In any regard, just around the corner there's a rainbow in the sky. Hopefully I can maintain my current MELD of 22 or at least keep it rising.
   That is all.

What a Week

2011-11-10T21:51:00.000-07:00

   Today I was overwhelmed with all that has been happening. I have been doing very well keeping depression on the back burner, but once in a while things get to me. I think time is starting to take its toll. I want so much for this to be over with and yet I know it is going to take however long it's going to take. It doesn't help knowing that my region has one of the longest waiting periods, or that my numbers have held steady at 22 for the last three months. Anyhow, I'm feeling much better now.
   I have been without my computer for the past few days. My battery died some time back and I have been running of my power cord alone. Last week my cord started shorting out and I had to order another one because I was tired of holding it in the same position so I could use it. And when I say I had to order it I mean Lois had to order it. When I finally got the cord it decided it wanted a new battery because it kept turning itself off. So I had to order another one. And again, I mean Lois had to order me another. It finally came today and so far it seems to be running okay. Except when I first put the battery in it fell right out. And then it did it again when I put it in the second time. (You have got to be kidding me) I thought. So I literally slapped it in on the third time and it stayed. (Oh, thank you!) I smiled. Now the brightness keeps dimming out and I have to go back and adjust it every 15 minutes. I think I have finally got it figured out.
   Lois is slowly healing. She is still very sore, but she has had no problem with swallowing or reflux. Hopefully everything is going to get better. We just need to get her through the next 6 months without sneezing.
   Well, it is late and I need to get to sleep. Many thanks to all my friends that keep sending me notes and a warm welcome to the some new followers on each of my blogs. I'll try to get out and get some pictures this coming week. Peace be with you.

Thank You All

2011-10-29T23:26:00.000-06:00

   The operation went fine. Lois is still in the hospital and experiencing a fair amount of pain. The anesthesiologist was able to keep the nausea at bay. Last night I stayed at the hospital to make sure she was doing well and that she didn't get sick. She slept right through the night until 4:00 in the morning when her I.V. bag ran out and the machine started chirping. I slept for a little while longer and then took the train into work. It was a pretty brisk morning and I had about a twenty minute walk.
   Lois ate a little food tonight and then started feeling nauseated. They took some time before giving her some medicine and the pharmacist showed up and told everyone that she was absolutely not to reach the stage where she was throwing up. At least everyone is on the same page now. They may let her come home tomorrow, but I'm thinking it won't be until Monday.
   I received a lot of phone calls and e-mails from people today checking in on us. Thanks so much for your prayers and support. Hopefully this surgery will work out like it was supposed to.
   Peace be with you.

Keeping On

2011-10-25T22:30:00.000-06:00

   Lois has her surgery on Friday. The doctor said that it will be difficult and has arranged to have another surgeon there. He doesn't feel like he'll need anyone, but wants to take all the precautions he can. In the meanwhile Lois is dying from pain and can't wait for it to be over. She is slamming vitamin C because she thinks she may have a cold coming on.
   I have been having a lot of knee pains. I think it is my psoriatic arthritis. Sometimes it is extremely painful and I can hardly stand it, I also had another encephalopathy spell at work on Saturday. I was able to recognize it and turn it around it real quick, and by real quick I mean it took a couple of hours. I feel like I'm getting sicker. I am having more bloody noses these days. This past week I even went home early because I wasn't feeling good and I was nauseous, something that I haven't felt for a while. My pain trumps everything else I have going on, but I feel the other symptoms right there beneath the surface. Suddenly I find myself saying, "Hold on."
   My biggest worry right now is Lois and the girls. The next few days will be kind of hectic at our household. Keep us in your thoughts and prayers.
   Wishing everyone well.

So This Happened...

2011-10-12T02:56:00.002-06:00

   I fell several feet off a ladder today. I don't know what hurt worse, the landing on my back, the two by four that kicked me in the stomach or my pride. I was cutting down the neighbors cottonwood tree that is hanging over our fence. For over a year now it has been rubbing across the top of our roof and the siding. About two months ago I told my neighbor that he needed to do something about his tree and that we were worried about roof damage. He said that it was fine with him if we cut down the tree and basically threw it back in to my hands. I had even explained to him that I had some health issues and he seemed very sympathetic. How it ended up that it was up to me to chop his tree down is beyond me. The day I talked to him I was just happy that he was okay with the whole thing, it didn't occur me until a week or two later that he wanted me to take care of the tree myself.
   Yesterday I trimmed some of the branches off the tree so I could rig a line and pull it over with a come-along because it was leaning in the opposite direction. Things didn't go as well as I had planned and it fell a short distance and landed on the corner of the roof. I figured that if Lois tightened the come-along while I pushed up on the tree with a two by four then it would fall quite easily. It did. I just didn't see myself going down with it. I'm not exactly sure what happened, but as near as I can tell the weight of the tree shoved the two by four back at me as I was prying up on it when it cleared the edge of the roof and we all came down. I feel a little sore, but I think fright probably got the best of me.
   Today I had my clinic appointment and the doctor thinks I'm holding up pretty well. He juggled some meds and we spoke about my blood clot. If you recall, I have a blood clot in the portal vein. My question was whether or not the clot would ever break up and leave. He explained to us that it wasn't something they wanted to risk doing right now. Maybe never. The clot is most likely as hard as a cement boulder and they who have to go directly into the site to do anything about it. What usually happens is that blood vessels start forming around it to pump the blood. In the meantime they wanted me on coumadin to help prevent the clot from growing larger and moving into the splenic vein. If the clot moves into the splenic vein then it's game over. They won't transplant. This was some startling news for Lois and I. Something we had never heard before. After the initial shock went away I realized that there was probably no worry at all. They have me on the right medicine and if all goes well I might be transplanted in the next few months anyway.

Photo by wikipedia commons

My liver doctor is also the doctor who's did Lois' endoscopy. He talked to her about her CT scan and couldn't understand why everything has been moving so slow. He recommended that we set up an appointment with the doctor who did the surgery and see about getting this taken care of. We stopped on our way out of the hospital and Lois made an appointment for Thursday. Hopefully they will schedule a surgery soon.
Well, it's late and I should get some sleep. I'm curious how I'll feel in the morning and if I'm going to be licking any wounds. Stay healthy.

In the Past Week

2011-10-05T21:41:00.001-06:00

This really isn't worthy of being called a post but, I am feeling guilty that I haven't had anything to write lately.

Not a lot happening these days. I had new labs and everything dropped slightly, but my MELD score stayed the same. I am still holding at 22. My muscles really hurt.

Lois had an esophagram (barrium swallow) and a CT scan. They were able to confirm that the fundoplication had slipped up above the diaphragm. Lois says she can feel everything she eats or drinks in her ribcage. She is still miserable and we are waiting to hear back from the doctor on what to do next.

In the past two months my hair color has gone from black to blue to purple and now I'm green. Lois refuses to dye it red.

That is all. I need some cake.

Worry and Stuff

2011-09-23T22:43:00.000-06:00

   Back in January, Lois had to have an endoscopy to see why her acid reflux was giving her so much aggravation. She found out that she had Barrett's esophagus. The condition is when the lining at the bottom of the esophagus starts to replicate that of the stomach lining. It is usually found when people are in their 50s and men get it twice as often as women. We also found out that she had a hernia and ulcers. The trifecta. The doctor schedule a surgery to fix the hernia and esophagus. They fixed the esophagus by creating a sphincter muscle between the stomach and the lower part of the esophagus by wrapping part of the stomach around the joining of the two. The only problem was that Lois becomes violently ill when she has anesthesia.
   That first night while Lois was retching repeatedly, she kept telling the nurse that she needed something for nausea. The nurse would disappear for an obscene amount of time and couldn't be found. This went on throughout the night and often she was denied meds because the nurse kept saying it was too soon. In the morning when the doctors finally made their rounds, they prescribed a patch for her and the vomiting stopped. But apparently a little too late; when Lois was finally released she was having a difficult time swallowing and they assured her it would eventually go away. It never did.
   Over the months it has steadily gotten worse and Lois had another endoscopy done the other day. The doctor said that the place that was tied off has slipped further up into the esophagus and the esophagus tube was 14 millimeters around instead of the 20 that it should normally be. This caused a smaller hole and has made her life unbearable because swallowing food is too hard. So now, she has another hernia and more acid reflux. All of this should have been fixed the first time, but we believe all the retching that happened in those first days probably led to the problem because it never did really heal right. Now we are waiting for the doctor to talk to Lois' doctor and they will probably have to set up another operation.
   I have mentioned the hardship our loved ones go through while taking care of us before. My Lois has endured a lot of her own. In the past couple of years our lives have been trying. Her work load has increased and friends and coworkers have been laid off due to the recession. This alone has brought her a fair amount of grief. She is physically exhausted all the time and I worry about her. Now it looks as though she'll have to go through the same surgery again. A surgery, we are told, that is generally harder the second time around. I wish she didn't have to do this again. We will know more in the following week and I'll keep you posted.

New MELD score

2011-09-12T22:50:00.000-06:00

   I have been itching a lot and it is starting to drive me crazy. It's right in the middle of my back where I can't quite reach it. If I wasn't already on Enbrel, I would think that it was my psoriasis. Now I am wondering if it could be my bilirubin. I just had my labs done and my MELD score went up from 20 to 22. My bilirubin is a little high at 3.3, the normal range is between 0.2 - 1.3. My creatinine was perfect and my INR was also in average range. I seem to be doing pretty good, but I have been awfully sore lately. I am also grinding my teeth. That bites.
   My score hasn't been this high for nearly a year. After adjusting my coumadin dosage my INR went down and I have maintained an average score of 19 to 20. I really won't be able to tell if this new score is indicative of things to come until my next labs are drawn. One thing I do know is that the higher my score goes, the more real it all feels. Your mind swims with wonder. I have to admit I worry about my kidneys, but so far my numbers are doing well. I pray that they remain healthy through this.
   Well this is it, wishing everyone good health and happiness.

Of Late

2011-08-29T15:14:00.000-06:00

   It has been a few months now and I still have trouble with my Bells Palsy. I still dribble at night when I sleep. Liquid still spills out of my mouth when I drink, or brush my teeth and gargle, or just talk. Eating is difficult. I have to mush my face up like a contortionist does with their body. I've never actually sat down with a mirror and watched myself chew, but I imagine it looks very scary. Kind of like a dog eating peanut butter. Kids might run. My kids just laugh.
   On Saturday I celebrated my three year anniversary being on the transplant list. When I first went to clinic they gave me 18 months without treatment. I am happy to say that I have doubled that figure and still hold on to a quality of life. While it is true that there are difficult days, my good days still out weigh the bad. Unfortunately each of these days is accompanied with some sort of pain. I am not in agony, I'm just sore. Losing your muscle mass is hard when it is all you have to support the 185 lbs. you carry around. The weight gain doesn't help either. I must have 10 pair of pants I can't wear because I no longer weigh 135 pounds. I have however had some very hard times in the past couple of months. My edema and psoriasis got way out of hand and 3 bouts with encephalopathy have left me confused and mentally unbalanced. I think we have all of these under control now.
   It is hard to believe that it has been over three years now; that time has taken hold like a doomsday clock. There are no numbers counting down to zero, just the knowledge that the body can only go on so far. We still have a couple of years to get through this. I think in a way it is the waiting that drives you mad.
   My family continues to remain strong. The kids are doing alright. It is Lois who seems to carry the brunt of it all. She is exhausted and worried and physically ill. I can only pray that I can give back what I've taken from her.
   I am doing alright. I am happy. I have a sense of humor. And I'm alive. What more can I guy ask for.

Sleep

2011-08-05T04:27:00.000-06:00

This is different. What I'd give for a drop of sleep each day. And here I am since 4 am this morning wide awake, alarms will ring in another hour. I will curse later today wishing I had this sleep time back. I will stumble through the day drowsy looking for a place to nap. Instead my work will keep me busy and I will go home exhausted. Probably fall into a a deep slumber early on and then rest once my head hits the pillow. I can hardly wait.

I'm alive

2011-07-22T20:17:00.000-06:00

I experienced my first serious spell of encephalopathy this week. I'm pretty sure I managed to scare my youngest. I was incoherent and nothing I was saying was making any sense at all. I had to have Aly call Lois at work and she came home to babysit. We almost went to the E.R. but I drank some lactulose, ate some food and took a nap. Eventually I started feeling better. This was the second time I had a big scare like this. The first was back in the beginning when I was terrified of throwing up, thinking that my varices would start bleeding again. I've had a couple hard weeks this month. My health seems to be changing a lot. I am tired all the time and I hope that I can hang in there at work.
I am thankful for the emails and the comments I've received lately. But I am not always up to the task of writing and getting back to everyone when they stop by. My sincere thanks to all my visitors

Latest MELD

2011-07-11T21:26:00.000-06:00

   I had my MELD done today. My score dropped from 20 to 19. As I've said before, Lois and I can pretty much tell whether my score has gone up or down by looking at the numbers. I usually take the train to the hospital, have my blood drawn and then go downtown and catch a movie. I later call the lab and get my numbers and call Lois so that she can run them through the MELD calculator. We both knew that it had dropped.
   I may have gone down a point, but I am still in the second category from the top. We are still waiting for my score to rise, but it is getting harder to get through each day. Some days are worse than others. I am holding up though and next month I will be listed for three years. It is hard to believe so much time has passed by since we found out that I was sick. The good thing is that I am still able to work.
   I don't have much else to say. After we returned from vacation I had a pretty hard time. I was extremely exhausted and the swelling in my feet was killing me. I wear a size 9 1/2 to 10 tennis shoe and I had to go and buy a size 13 just so that I could get something on my feet. Tomorrow I go back into clinic and once again the swelling has gone down and I won't have much to show the doctor. That's just funny. Kind of like them bringing Dallas back to air. Well...that is all.

The Kindness of Strangers

2011-06-26T23:13:00.000-06:00

Aly has become obsessed with riding horses, which hasn't brought her any closer to her goal because we've been short on opportunity.
On Friday, things changed and the girls got to go horseback riding. We were on the last leg of our vacation and visiting our friends, Ron and Tina, who live in Idaho. We were laughing a little about her fixation with the concept. The next day, they surprised us and said we were taking the girls riding.
   It turned out that Ron's cousin was getting ready for a memorial rodeo that his family started a few years ago after their 19-year-son, Daniel, died in a terrible bull accident. Not long after this, the Dopps family organized the rodeo and they raise money each year for different illnesses such as leukemia and cancer research. I didn't realize any of this until after the girls had gone riding. We met Dave and Ramona Dopps just briefly as many family members and friends ran in and out of their house getting ready for the two-day rodeo event and others loaded horse trailers. From this tragedy, they've created a family reunion and a loving memorial.
   You could really feel the warmth of family kinship as the kids all traded off riding the tamest horses and the adults busied themselves with all the other tasks at hand. If you would like to visit their website click here:
Daniel Dopps Memorial Rodeo
   Lois and I were both a bit overwhelmed with the kind hospitality the Dopps had to offer during this obvious busy time. They stopped to welcome complete strangers into their house so our girls could go riding and they were some of the kindest people I have met.

Aly

Jeni

Lois

Update

2011-06-09T22:37:00.002-06:00

   I went to see my dermatologist and we are going to do the Enbrel treatments again. I'm not really looking forward to this, but if it gets rid of the psoriasis, then I guess that's what I need to do. This time they are going to have me take the shots twice a week instead of once, and there is a pill I will be taking that has some awful side effects. One of them is severely dried chapped lips. If this happens I have to wing myself off the pills one by one until it stops. The second one is that I may have bad headaches that won't go away. I get rid of the headaches the same way.
   The swelling in my feet came back again and now it is in both feet. My clinic seems to feel that the edema and the psoriasis are aggravating each other and causing the swelling. My ankles are very swollen and I am wearing my house slippers to work. My dermatologist looked at my latest outbreak and agreed with what the doctors at the clinic had to say. He said that what is probably happening is the blood is only flowing so far down my legs and then backing up and the water is accumulating in my lower legs. All I know is that it's uncomfortable.
   In other news, the Bells Palsy is starting to get a little better. I notice it mostly when I sleep because I drool. Plus when I talk I still slur my speech. It is the weirdest thing ever to feel your face all scrunched up like this.

   The girls just got out of school this week. The oldest got honorable mentions in the Kiwanis Club's terrific kid award, a Presidential certificate and medal for Academic Excellence, A certificate in Language Arts and received another certificate for highest GPA average between 3.8 and 4.0. along with 9 others. She had straight A's this last quarter. Pretty darn awesome.
   Aly's school didn't have all the awards because she just graduated from 7th grade, but she also received A's and one A minus. I am very proud of the two of them.

   That is all.

Sherwood Forest

2011-05-25T16:10:00.000-06:00

   Today I have felt nothing but utter exhaustion. Everything hurts. My skins aches from the psoriasis and I am so tired. Even though I have increased the medicine I use for encephalopathy, it doesn't seem to do a lot for me anymore. I am going to have to talk to my coordinator about this.
   Lois and I have arranged to take some time off. We decided we are going to the Redwoods this Summer. It is a little far from home, but my score is only 17 and I suspect it will be a while before it goes back up to where it once was. I get it checked in the second week of June, perhaps there will be a slight increase. I'm guessing it will be safe enough for me to travel in the meanwhile.
   I think the Redwoods will be nice to see this time of year. I have never been there and don't even know where to start. We've decided Eureka will be as good a place as any, and the ocean is close by. The girls will enjoy that. I know that Lois and I are ready for a break. Maybe some fresh air and some time off will do us all some good.

Friday the 13th

2011-05-13T22:47:00.001-06:00

   I called the lab on Tuesday and asked for the three test that determine my MELD score. As I copied down the numbers I could tell that it was unlikely my score had changed very much, something both Lois and I have become pretty familiar with. When I entered the new numbers into the UNOS calculator, I found that my score only went up one point. At first I was a little sad, but taking it all in, it is what it is. My numbers will go back up again. Hard to believe at one point I was at 23 and have now dropped to 17.
   My coordinator finally got me in to see one of my doctors today about my foot. Not a lot of news there. The thought is that my psoriasis and edema combined are exasperating the swelling. Now that I am back on a diuretic the swelling seems to have gone down. The doctor wants me to continue monitoring it and contact them if it gets worse. It still hurts and dealing with the Bells Palsy, swollen joints and my psoriasis has really been somewhat painful, and that isn't even touching what else I am going through with the liver disease. Right now there is just a lot of creaking and groaning and fatigue. My energy level has been really low so I haven't even bothered to post until now, and I was waiting to see what I learned at the doctors.
   The one positive thing that I keep getting is that the clinic seems pretty surprised that I am still working and holding my own. This makes me feel hopeful that I can maintain a certain amount of strength leading up to transplant. I'm hoping to walk into the hospital when I finally get the call and not already be hospitalized as many patients are.
   Be well.

Today

2011-05-02T23:16:00.001-06:00

   Lois has me using epson salt in foot baths and ice packs on my foot. It has helped a lot. Today I over-extended myself trying to get around. I took the train to the hospital and walked the short distance to get my labs done. I did a fair amount of walking, but not as much as I do when I'm at work. The skin around my foot has dried out where it rubs against the rim of my tennis shoes. It has become very painful combined with the foot swelling. Plus, I think it is developing psoriasis.
   I called the lab toward the end of the day and got my new results. Sadly, my numbers fell again. I went from 20 points down to 16. I was walking through Union Station when Lois called after running the numbers I had given her and I half expected my score had dropped after seeing how low some of the numbers were. "Well?" I asked.
   She quietly said, "16."
   We talked for a moment and then I sat down in the empty station. I rested my head in my hands and stared at the tiled floor. My eyes followed the cracks that ran across the floor to where they abruptly ended; wondering how they got there. Was it from an earthquake long ago? I went outside and looked at the flowers for a moment, happy that it was warming up. I watched as a fire truck pulled up to the curb and the firemen piled out to look for the 911 they were called out for, only to be told by a UTA employee that the person they were looking for was still on the train - the train that had already moved on to the next station. Everything seemed crystal clear to me.

Today, with sharp focus, it occurred to me that I still have a long way to go. I wonder sometimes if this will ever happen. My body is quite tired. It groans and creaks and has done so for a while. I really need a vacation.

Swell

2011-04-25T21:13:00.000-06:00

   Today I had to get an ultrasound of my left leg. In the past week it has swelled up like crazy and it is very sore. I thought that perhaps I had edema that was going crazy and my coordinator put me back on water pills and potassium. The weird thing is that it is just in my left leg.
   My family doctor was worried that maybe I had a blood clot so he sent me to get an ultrasound and labs. The ultrasound turned out to be fine and my labs were off a little, but there was nothing seriously wrong other than my INR was a little low for the coumadin I am taking. My left leg is covered with psoriasis and it could be related to the swelling. We just don't know. Tomorrow I have an appointment with a rheumatologist because I also have psoriatic arthritis that has been causing me to limp in my right knee. We will see how this appointment goes and see if this swelling could have anything to do with my psoriasis. Right now my family physician is a little stumped and if the rheumatologist can't come up with anything, I will schedule an appointment with my liver clinic. In the meantime, it hurts to walk and after working a 12 hour shift it gets enormous. I simply must stop saying, "What next?"
   Thank you all for checking in with me since my last post. I appreciate everybody's support and prayers.

I Need Ice Cream.

2011-04-13T21:43:00.000-06:00

   The palsy is doing better. I still have trouble with my eye and my face sagging, plus I have trouble eating and drinking. My condition changes everyday. Some days seem worse than others. Today was actually a good day.
   I had my labs drawn on Friday and my score went back up. I have a score of 20 now. My coordinator told Lois that they transplanted someone last week with that score, but I am willing to bet that it wasn't my blood type. I looked at the UNOS website last night and there are a couple dozen people with my blood type on the list.
   I am tired a lot and ache all over. My muscle cramps havc returned and the Gabapentin doesn't really help. This past month or so has been trying on all of us. Lois and I have both been in the hospital and recuperating hasn't been easy. Lois' surgery doesn't seem to have helped now that we are a month or so out. I continue to try to stay healthy and each day is a little different.
   I mentioned in a previous post that I was hoping to take some pictures in American Fork, but that didn't happen. The photos I wanted are no longer there. I was kind of bummed about that. I guess I just need to get out and take a walk around the block and take some pictures. Lately Aly has been taking my camera to school for her photography class. I am happy about this. When I get better she can help teach me how to use it. She seems to really love the class and is excited about using photoshop for some of their assignments. Jenifer, on the other hand, is happy with her drama class. They just did "Suessical the Musical" and she played Jojo. She was absolutely stunning on stage and her songs were beauitiful. I am so proud of both of them.
   That is all.

Eva Markvoort - 65 Red Roses

2011-03-29T22:54:00.000-06:00

It has been a year now since Eva Markvoort lost her life to Cystic Fibrosis. In the days that followed I wanted to write a post, but I found it difficult to write about Eva because of the profound effect it had on me, especially in a time when thousands of others were feeling much like I was. An overwhelming grief and loss had touched so many lives and I couldn't focus on what it was that I wanted to write after reading so many other comments and posts. My words and feelings had somehow blended with everyone else's, and so I chose not to write anything. I wrote for myself and how I was feeling.

During this time, my illness had me looking at my own mortality. Because of this I found myself reading many blogs and becoming fast friends with some wonderful people. Sadly, this online network also made it possible to see the rapid deterioration of some of these people I had made friends with, and over time I found myself reading their blogs written by family members announcing their loved ones were in the hospital and their days were ending.

The first time this happened I cried for days. It was a friend of mine who had passed away from breast cancer only two weeks before Eva. Both of these women had touched my heart in many ways because of the remarkable outlook they had in dealing with their illness. The strength they carried was phenomenally bright in such a dark time. I was moved that they could both reach out and offer hope and give wonderful advice to so many people during a time when they were faced with so much of their own.

The thing about Eva was her desire to educate people about cystic fibrosis and promote organ donation. It was in a sense a passion that drove her, along with her deep love for her family, friends and network community. Eva's legacy continues today. In the last year, fund-raising projects have raised over $200,000 in her behalf toward cystic fibrosis and donation awareness.

I think of this young lady quite often and still read the updates that her family post on her Livejournal blog: 65RedRoses.
Over a year ago Eva brought great inspiration to me. As I struggled with the thoughts of my own mortality, Eva's advocacy for donor awareness helped me understand more about my own disease. I also realized that family and friends and love and God meant more to me than I knew. When you see things slipping away you start to understand the things you sometimes take for granted. It could be the simple act of saying, "I love you," in the morning when you say goodbye to your wife or husband on their way to work, or your children as they go off to school. It may be a "Thank you," to a friend or coworker or stranger.

Eva's post helped me understand how amazing people can become when faced with life-altering events. Thank you for this, Eva, for teaching me to see how much life could have stolen from me if I wasn't looking.

MARKVOORT, Eva Dien Brine

March 31, 1984 - March 27, 2010

What Now?

2011-03-25T23:18:00.000-06:00

   Yesterday I found myself having difficulty drinking and eating without having some dribbling problems. I figured that it was related to my cold and I just had some swelling going on. This morning I woke up and it was more pronounced and I told Lois about it. She said, "I wonder if maybe you had a stroke?"
   Not ever having a stroke before, I replied, "How would I know? I've never had one."
   After I got to work I was talking to a co-worker and he said, "Maybe you had a stroke or something." This freaked me out so I called Lo and told her I was worried and she said call your doctor and see if you can get in today. After explaining to the nurse some of the symptoms that I was feeling, she told me to get to the ER because it sounded like it could be a stroke.
   So off I went with Lois and the first thing the RN said was, "Just looking at you, I'm thinking that you have Bells Palsy." She explained that it can often be triggered by a respiratory viral infection. That made sense, since I was coming out of a really bad cold. The doctor came in moments later and confirmed it. They did a CT scan of my brain to make sure I wasn't bleeding and found a sinus infection, too. I am on prednisone for the next 11 days and some other anti viral stuff. Plus at night I have to tape my eyelid closed because it doesn't want to close on its own.
   Just when I think things are settling down, wouldn't you know it. Ugh.

3/24/2011

2011-03-24T22:14:00.000-06:00

   I have been sick since my last post. I left work on my first day back to work and went home and slept for three days. I finally made it out of bed and downstairs where I took up residence for another two days on the couch before I had to return to work yesterday. I am still dragging my heels and this cold has gone around our shop for the past two weeks. Some people have even caught pneumonia.
   Besides wanting to just die I have been okay. Although my psoriasis has taken a turn and the Enbrel quit working. Since then I have flared out and I am miserable. I also have psoriatic arthritis and it has affected my right knee and I am limping a lot and using a leg brace at work to walk around. Everything is a little uncomfortable. I was using the gabapentin to help with my muscle tension, but it just turns me into a zombie come morning. It would be nice to just feel well every so often rather than have one thing hit me after another.
   Not much else happening. When I feel better after this week I am planning on taking some pictures. I heard of a pretty cool place in American Fork that I want to visit. Hopefully I'll have some pictures to post real soon. Take care and thank you all for the great advice and comments last week. I am feeling much better this week.

3/16/2011

2011-03-16T21:26:00.000-06:00

   I think I am going through a bout of depression. The past few weeks have been difficult. My body aches all the time and since my TIPS procedure I have had heart problems. I keep getting sharp pains in my chest and a throbbing that comes and go. After an E.K.G. and a stress test the doctor was unable to find anything wrong with me. I have also had some severe knee pain which has bothered me a great deal. I am wearing a knee brace but that doesn't seem to help very much.
   With all these things happening, emotion is building. The knowledge of how real this is makes me weep, mostly because of the pain I am feeling.
   I went to see my doctor last week. We discussed my general health and the fact that my MELD dropped down to 18 and a lower category. I was in the top 11 and now I am in the top 34. This was a bit hard to take. When the doctor left he said, "Don't worry, you'll get your liver. It might be this year, or the next, but you'll get one."
   This past week I just came up on my three year anniversary since I was diagnosed with liver disease. To hear the news that I may have to go through this for another year or so is frustrating. It feels like I am starting all over again and that hurts my heart. In the past week or two I have tried to sit and write. Nothing seems to work. I can't even sleep without waking up all throughout the night. I am so tired.
   I go back for labs in a month. Hopefully my numbers will change by then.
   That is all.

Hanging in There

2011-03-02T22:47:00.000-07:00

   I'm sorry for not posting lately, but my life has been somewhat hectic. Ever since I had my procedure done, my health has changed considerably. My body aches all the time and I have been extremely tired. I think part of this is due to medicine change.
   I have my MELD checked later next week and soon after that I will be seeing my doctor. Hopefully we can figure out what's going on with me. I have had a lot of swelling happening so perhaps it's time we put the water pills back on the table.
   Thanks to all who have emailed me to see how I've been doing. I'm hanging in there and hope for positive results with my next appointment.
   Wishing everyone well.

Long Week

2011-02-05T20:13:00.000-07:00

   This has been a long week. I went in for surgery on Monday and got out of the hospital on Wednesday. I decided not to work Thursday because I was pretty beat. On Friday, Lois had her surgery and that went well. All except for all the throwing up and getting sick stuff. I spent the night with her on Friday and she groaned and whimpered all night long. I felt really bad for her. She has not had anything to eat or drink since Thursday evening so she is pretty miserable. Hopefully that will change tomorrow (Sun).
   Just hearing about what they have to do to fix a herniated stomach is unbelievable. It sounds awful and I am constantly amazed with the human body and just how much it can endure. Too bad we haven't figured out how to heal it without crossings those thresholds of pain. Lois usually has a pretty high tolerance when it comes to pain, but this surgery got the best of her. She will probably spend another night or two before they let her go home.
   I had to get some labs drawn regarding the medication I am on and my MELD was 16. Now that they've fixed me up and the blood is moving around differently, that really changed things. I am guessing when I get my new monthly labs for my UNOS update, I will have dropped down the list a bit. It is kind of a bummer, but I am okay with it. They took care of something that needed to be dealt with and could have potentially been life threatening. Wherever that places me in the transplant world, that is where I need to be. As long as I can keep on top of the encephalopathy and keep a clear head then all is well.
   Once again, thanks to everyone for all there thoughts, emails and cards. We are very blessed.

Hospital Food Sucks

2011-02-03T11:45:00.001-07:00

My TIPS turned out well. The recovery has sucked tremendously. I have been extremely tired, sore and nauseated. Plus my bed was a little small so I was kind of scrunched up most of the time. This was quite the experience. After I was able to move around and get out of bed I scrolled the hallways. There are a lot of sick people waiting for transplants. Hearing some of their complaints and listening to the patients who had hepatic encephalopathy was very sad. I feel miserable right now, but there is no way I could endure what these people are going through.
Anyhow, I am home again. I will probably write later after my work week. Take good care.

Thanks for all the notes and emails.

Monday, Monday

2011-01-28T21:38:00.000-07:00

   My coordinator called and left a phone message saying that they are going to do the TIPS procedure on Monday afternoon. I am both excited and apprehensive about it. Waiting for a time bomb to go off inside of me scares me to death, so I'm happy that they are doing it. But then there is my nervousness of the procedure itself. I've only read a little on the surgery and risks; I haven't had a doctor review this with me yet. I guess that will all happen on Monday morning. I think the fact that they have taken all these steps to get this done so fast really speaks for itself. I think they are generally concerned.
   There was also mention of the possibility of staying overnight even though it is considered an out-patient procedure. That's okay with me. I'd rather have someone monitoring me after I get a tube shoved through my vein.
   So...I'm very happy. Plus I'll get another nap.

Today's Update

2011-01-26T22:41:00.001-07:00

   Well I heard from my coordinator and my CT scan shows that there has been no change in the blood clot in my portal vein. It remains the same after months of being on coumadin. Her understanding is that it is probably unlikely that they can do a TIPS procedure with a partially blocked vein. They can't afford the risk of moving it. Tomorrow they are having a board meeting with the doctors and they'll discuss my options. The good news is that there was no sign of anything else. No spots indicating tumors or cancer stuff.
   It is still a lousy situation though. Somehow we are going to have to resolve this before I have a blood vessel burst. The beta blocker will only help for a while. Lois is thinking that they might end up hospitalizing me and treating me with heparin in order to get rid of it. I guess we'll just have to wait and see. In the meantime I think we should have a pool on the call. That might be fun.
   Good night all.

(Wipes sweat from his brow)

2011-01-21T22:25:00.000-07:00

No cancer!!!

Lois will have to continue getting checked every year to keep an eye on things and they will do another biopsy the next time she is checked. We are all feeling better about things right now and very happy.

I had a contrast CT scan today and the doctor will have to look at the results and determine what they want to do about the TIPS procedure. They are looking to see if the blood clot that I've had is still there. It is in the portal vein, which is the vein that they would be connecting one of the hepatic veins to. If it is still there, it could play a big role in whether this procedure is going to be possible. Another waiting game, but I'm not so worried about it. They raised my beta blockers again to help the blood flow. Two years ago I was taking 20mg., now I'm up to 120mg. The bad thing about that is, if you aren't careful standing up you can take a head dive. I've gotten a little dizzy before, but never had a tailspin.

Wishing everyone a great weekend.

Epic Fail!

2011-01-18T20:01:00.002-07:00

   It is never a good sign when you wake up from your endoscopy and the doctor greets you with: "You're starting to worry me."
   After Lois mumbled something like, "That doesn't sound good," The doctor went on to say that he didn't like what he was seeing and followed that with, "We need to get you transplanted."
   The doctor told us that I had a tiny leak in my esophagus and that he wasn't worried about it, what worried him was the varices in my stomach that looked like they were swelled up and and ready to burst. He explained that he wanted a CT scan and that I probably needed to get a Transjugular intrahepatic portosystemic shunt (TIPS) procedure done as soon as we can do it.
   The procedure is done by connecting two blood vessels in the liver. A radiologist will insert a catheter into a vein in my neck that has a balloon and metal mesh stent attached to it. Using X-ray equipment, the catheter is guided to a vein in the liver to where the balloon is blown up to place the stent and then they connect the portal vein to one of the hepatic veins. Once this is done the blood should flow better and take pressure off the stomach, esophagus, liver and intestines. In the meanwhile he told me to watch for any bleeding and to get to the hospital immediately if I had any problems. "If you start throwing up blood, have black stools, you call 911," he said. "Don't screw around."
   I'm not very worried about the varices bleeding, but I am more concerned about the procedure itself. There are a number of risks such as bleeding, infections, damaging blood vessels and soreness in the neck. All of that sounds awful to me. Plus, we were told, that even though this procedure was something I needed it could also increase my encephalopathy. This is a whole new monster of its own.
   I guess they feel it is serious, though, because by the time we got home the clinic called to schedule my CT scan for this Friday. I imagine they'll want to set up the TIPS soon after that.
   I am somewhat spooked. I'd be lying if I said any different. So much is happening all at once and we have still not heard anything on Lois' biopsy. That just makes me mad. Big breaths ... big, big breaths.
Maybe we can set it up for my 50th birthday, which is Monday.

Update

2011-01-17T20:56:00.000-07:00

   I have my endoscopy tomorrow. I've gotten rather used to them. In fact, I look forward to them. I enjoy the sleep.
   The bleeding in my esophagus hasn't happened for over two years, and the only place they have seen any leakage is in my stomach. That - they say - is a whole new ball game, and we're not going there unless we have to. I do have worries about it though, having been on coumadin for the past several months. I am hoping that everything looks alright.
   In other news, we are still waiting for Lois' biopsy results. We should get them tomorrow. The holiday kind of through a monkey wrench into that. I will let everyone know as soon as we find out anything. It has certainly been a very long week.
   I did however get my labs drawn and my new MELD came out to be 19 again. For right now I guess this is my magic number.
   Take care.

1/11/11

2011-01-11T22:50:00.000-07:00

Lois and I return to the hospital on Thursday. I will be doing new labs for my MELD score and Lo will be taking a necessary motility test to check muscle pressure in her esophagus. It sounds extremely uncomfortable. They will be feeding a tube up her nose, down her throat and into the esophagus. This is a preliminary procedure that needs to be done before they can start working on fixing her other problems.
We are still waiting to hear from the hospital about her biopsy. As you can probably imagine, this has been a strenuous time. The girls are a bit unsettled. Hopefully we will hear something soon. Waiting is always agonizing. I sincerely thank everyone for their comments and e-mails. It means so much to Lois and I.
My friends and family are sick right now, and many blogger buddies I know have their own illnesses happening in their lives. Some are very sick. It is hard to think about all those suffering without feeling like an emotional sponge. I am thinking of you all tonight. And I hope this new year brings you peace and health and happiness.

The Endoscopy

2011-01-07T19:34:00.001-07:00

Imagine your stomach sliding up into your esophagus as you move or sit or lie down. It sounds pretty awful huh? It sits there bunched up making it difficult to breath and causes heartburn. It is also brutally painful at times. This is what the endoscopy exam discovered.
The pictures that were taken also revealed striation marks in a couple of different places confirming stomach ulcers. It does not surprise me that there would be ulcers; after 2-1/2 years of worry and stress, why wouldn't there be? I can see it in the eyes and hear it with every groan.
There is also the acid reflux. The thing that led us here. At the bottom of the esophagus where this whole mess takes place, the stomach acid splashes up into the esophagus and has done some damage to the tissue. A biopsy is taken to check for cancer. We will now have to wait for almost a week for the results.
My doctor explains these things to us and draws diagrams. He looks me over and says, "You look real good."
Lois looks up from the hospital bed she is in and says, "He's doing all right." Only today he isn't my doctor and I am not his patient; Lois is.

-January 6, 2011

One of Those Days

2010-12-29T21:57:00.001-07:00

It has been a heavy week and it is only Wednesday.
On Monday I found out that my new labs for my MELD score in December were never updated with UNOS (United Network for Organ Sharing). That disheartened me and caused me some grief for a couple of days while I processed it.
Today I learned that a good friends wife has cancer. I have trouble with that one. I lost both of my parents to cancer.
Five minutes later I was told that one of my best friends has colon cancer. This I didn't take so well and had to find a place to shed some tears. Sometimes I just don't get it, and I wonder why things happen the way they do.
And then, on the horizon, I am thinking about Lois' endoscopy coming up real soon and the worry gnaws at me.
Too much. Too damn much to think about.
So...my score dropped because of an error. My friends are faced with sad and disturbing news that may most likely be life altering and worry is scratching on the inside of my skull that keeps me up at night. Never mind all the other stuff. The stuff that has already become part of the scenery. The kids not doing anything to help out because...they are kids. The freezer going out for the second time in a row and losing all the frozen groceries because I can't figure out what's causing the GFI to trip. Never mind the mountain of insane that keeps happening. Too much. Too damn much to think about.
I say a prayer for this and prayer for that, and in between I offer a kiss or a hug for comfort. It is heavier today, but I still manage to laugh and smile about the other things there in life. The things that are funny. The fact that my oldest dresses like Helena Bonham Carter. Or that the animals in my house always make me smile. And I realize that these things are not too much; they are not enough.

Just Breathe

2010-12-15T04:22:00.001-07:00

I woke up early in the morning. An hour has passed by now; it is 3:30 in the morning. Something is bothering me and I can't sleep. I finally make my way out of bed and move downstairs. It seems exceptionally bright. The storm has moved in and the snow has covered the back yard. The wind blows flakes left and right and up. The only thing I don't see is the snow coming down.
My wife has been feeling painfully miserable. I've told her over and over again to go to the doctor. "I can't. I will. No time. Next week. I'll see." The words come out in different ways. I tell her, "You have to stop. Your going to get sicker."
She calls me and says, "I've made an appointment."
Finally. Hopefully. Maybe. She'll get better.
She comes home from the doctor and say's, "My allergies are killing me. The doctors said that my (insert names here) levels are through the roof. They are 1,400. Way too High. Stress levels that can cause heart attacks. He gave me pills."
I whimper inside. I've know that the stress levels have been way too high. I've told her that she needs to try and relax and quit taking things so serious.
"What like illness? And money? And death?"
"Yes, like all those things. Just breathe."
"Can't breathe. It's choking the life out of me."
I am happy about the doctor appointment.
Finally. Hopefully. Maybe. Things will change.
One of the first things I learned as a person with a chronic illness was that it is just as hard on the caregivers. We've gone to parent/teacher conference meetings and said, "Here's our story. Please watch our kids. Let us know if you see any changes."
I think it is different with a spouse. You can't stop the worry and the stress. It is part of the normal reaction.
I am praying that this gets better. I know that the allergens have long since been aggravating. We've been working on them. But I know that we are not saying goodbye to the dogs and the cats and the guinea pigs and the hamsters and those other tiny rodents any time soon. All we can do is minimize the damage and work on the stress. Just breathe.

I love you, Lo.

The Paradox

2010-12-08T15:26:00.000-07:00

I had my labs drawn yesterday prior to my three month doctor appointment. My score went back up 4 points and my MELD is now 23. The doctor told me that I was getting pretty sick. He also said that while my score was still somewhat low, I could still be transplanted at any time. Oddly enough, I feel a little apathetic. Somewhere along the line I seemed to have crossed a threshold that's changed my outlook on things. For over two years now I have waited for this, thinking what a joyous moment it would be when it finally happened. Now all I seem to be able to think about is that someone is going to die.
I know that none of this has anything to do with me, but the thought of it has me shaken. It is in my sleep. Knowing that someone must die so that I may live weighs heavy on me. Up until recently when my numbers were still low, I had not given it much thought. Everything was still so far away. I had no time to think about what happens next, everything was about today and this moment. I was focused on how I felt and the changes I went through each day. But now that I am closer things have changed. My focus rests on everyone involved and all that comes with it. It is hard for me to look forward to something while knowing what fate will bring to another family. I was never blinded by it; it just seemed so far away. I've always known that time would not change it. It is a paradox.

Happy Thanksgiving.

2010-11-25T02:29:00.001-07:00

Recently my words have been few and far between. Over the past couple of weeks I have been feeling quite ill and it was all I could do to get through the day, but I am feeling much better these days and I want to thank everyone who continues to leave comments and send emails. It amazes me how such a simple act of kindness can help brighten my day.
These past couple of years have been tough and chaotic and I am often moved by the spirit of gestures handed our way. It is hard to put into words what only tears can describe.
This year I have a lot to be thankful for. The presence of each day, my family and friends. Each moment in time is significantly different, and yet somehow connected to the bigger picture. I have had a lot to reflect on, and while it has been hard we seem to roll with the punches. I have kind of adopted the attitude of not taking things too serious.
I would like to take the time to apologize to all those I still owe an email. I'm not ignoring you. Sometimes some days are just difficult and hopefully I will get a chance to respond to everyone before too long.
I hope everyone has a wonderful holiday and a lovely Thanksgiving, and that you all enjoy time with your friends and your family.

~beaux

Deep Breaths

2010-11-11T21:45:00.001-07:00

My MELD dropped one more point. I feel guilty for being frustrated. Perhaps it is time I learned about patience.

Nothing Much Happened Today

2010-10-27T13:36:00.003-06:00

There's not a lot going on. I seem to be really tired all the time. Every day this past week I have slept more than usual. One day I slept for almost 13 hours, plus I still took cat naps after I woke up. I have also had stomach aches in the mornings that usually last for a while. Sometimes all day. I am really getting tired of that.
I don't know if I mentioned it, but my coordinator called me after I got my last results and said that even though I dropped 3 points on my score last time, I am still somewhere at the top of the list. I take that to be good news. I will get new labs on Nov 10, when they have me come in again. I am worried about my score dropping though, it makes me nervous.
(taps fingers...)
I did manage to get my bathroom all sparkling clean and disinfected the way I wanted it. It makes me smile. I don't even want to go in there anymore. And I keep trying to stay current on house projects we have going on. Nothing big.

Today I have been on the waiting list for two years and two months.
Well, that is all.

Sick and Tired

2010-10-11T13:17:00.003-06:00

So, pretty much every fiber in my body hurts these days. Ever since I took the beating from the hardwood floor, I have slowly slipped backwards. My muscles ache and my calves seem to be wrestling with edema. On top of this, I've been fighting a cold which I finally gave into yesterday. Every time I blow my nose I get a pounding headache and there is blood from the damn coumadin I am taking. Not just the watery kind that I sometimes get, but the very thick gloppy blood. It is bright red.
Lois and I worked on the molding yesterday and I probably have a couple hours left today, thank goodness. It should actually go pretty fast now that I have the bay window out of the way. The living room will look really nice when we're finished.

In other news, my MELD score changed considerably. I went in Friday morning and had my standard order taken. Around 4:30 that afternoon I decided I couldn't make it through the weekend without knowing my score. I was able to call the lab and one of the techs looked up my name and asked me what I wanted to know. I told him I needed my bilirubin, my INR and my serum creatine. After that I called Lois and had her get on my blog and call up the MELD/PELD calculator. As Lois typed in the empty fields, I already had a feeling that my score had dropped just by reading the numbers.
"Your MELD is 20." She said.
I'm sure my silence spoke for itself and that she would have wrapped her arms around me and gave me a big hug if she had been there.

Later on Lois told me, "It will be all right. It just means somebody else needs a liver a lot more than you do right now."

This perspective was all that I needed, even though it was hard to think about a 3 point drop. I was happy to see that my creatine level was still in normal range. The one thing that I pay close attention to is how my kidney functions are taking this assault.
The next thing I had going through my head was how far I had dropped. Did I fall out of the range I was now in?
No. I was still in the same range. 19 through 24.
"That's a good thing." I told myself.
While all of this was a little disheartening, it made me realize that the score can change at any time. It will bounce around and you will never be certain of anything until the final moment. It also made me realize that the weakness to my body has gained momentum; what once was is clearly a thing of the past. I am physically exhausted. It is certain that things will change again over the next four weeks.

Tick-Tock

2010-09-16T21:43:00.001-06:00

I had my labs drawn on Monday and received my new MELD score today. I have moved up from a score of 21 to 23. Although this seems like a slight jump, it is actually pretty significant. This has put me in that obscure range where anything can happen. I am now with that handful of people who wait and bide their time. I am suddenly thinking in terms that I need to pack a bag to throw in the car. I am thinking that I should clean my bathroom from top to bottom and disinfect it. Maybe I should sterilize my house? I wonder how far from home I can actually venture? I have a two hour river rafting trip on Saturday and I'm half afraid to go.

For two years I have waited for this moment and now I'm just confused. Tick-Tock.

New MELD Score

2010-08-18T11:58:00.004-06:00

I had new labs drawn on Monday. Ever since my MELD score went up three months ago I have anxiously been waiting for my next doctor appointment. For three months I have been walking around on pins and needles waiting for this appointment. Actually it isn't so much about the doctor visit as it is having my MELD score checked again. I usually have my labs sent to me by mail and I use the UNOS MELD calculator to check my new labs so as not to bother my coordinator. If I don't, then I am on the phone 3 days later and I quickly become a nuisance until I track down someone who can help me.
Anyhow, I just received my labs in the mail and I am now at 21. I definitely am moving up the ladder.
Here is the MELD range:

Lab Test Frequency

* MELD score greater than or equal to 25; Labs needed every 7 days

* MELD score 24-19; Labs needed every 30 days

* MELD score 18-11; Labs needed every 90 days

* MELD score less than or equal to 10; Labs needed every year

Meanwhile I am very tired. I find myself falling asleep more often during my days off. I have also noticed that I am running out of breath a lot faster than I used to. I think I am just physically weak.
Posting has also been hard to do. I don't seem to have it in me anymore. I have been trying to keep the photo journal going though, but I haven't had anything to post for the past couple of days because I've been sleeping. It's kind of hard to take pictures with your head buried in a pillow.
So there it is. Good news depending on how you look at it. I am happy about it.

Lately I have been following some blogs in the liver community of some people who are not doing as well as I am. They are a lot sicker than I am and I count my blessings that I am doing so well. I hope these people don't have to wait much longer and that they all receive their transplants soon. My thoughts and prayers go out to each of them.

Update

2010-07-28T22:43:00.000-06:00

It seems as though it wasn't very long ago when I lay curled up on my bed writhing in pain. Somehow I managed to endure the agony while eluding death; never knowing how sick I really was. And then a visit to one of my doctors revealed that something else was wrong, and I was admitted to the hospital late one evening. In the morning during a routine EGD I would have a bleed out. Not long after this my family and I discovered that I was terminally ill. Compounded -- all these things and more started to weigh in and our lives began to change. We were in unfamiliar territory. That was more than two years ago.
This week I am re-living some of the past not because I am nearing a two year mark on the waiting list, but because some of the old pain is slowly creeping back. Moments of sharp stomach cramps and nausea occasionally give me spasms, and that relentless battle with sleep has returned. I am exhausted all the time. There are also newer symptoms that I didn't have back then. I am stiff and sore from muscle degeneration. My strength is more mental these days. Even here that is not my biggest strength. I am losing focus in simple conversations. I will be talking to Lois about something and I will lose my train of thought. I find myself reaching for other words to draw me back.
Despite all of this I remain wary. I take my medicine and try my best to keep strong. The words, "I am dying." or "You are dying." They seem to be spoken more often. Once, when this was all new, the words seldom came up. Now they are descriptive. Defining. They hold context. Something I never really thought about. And yet the thoughts have always been there.
The one thing that has always remained a constant is, "You have two to two and half years before transplant."
As that window narrows and my body gets sicker, I become more and more aware of this. Aware that the clock keeps ticking. There are no hands keeping track of time. There is no faceplate to look at. There is only an invisible clock measuring anxiety and frustration and the onset of new symptoms.

I Have a Hole in My Side

2010-07-01T21:20:00.000-06:00

I had an appointment today with my dermatologist. The enbrel seems to be working like it's supposed to. I also had a large lump on my side that I've been waiting to get checked. In the past two weeks it about doubled or tripled in size and has been hurting like hell. It turned out to be a big cyst. I figured the doctor would probably drain it and maybe send a piece of it away to be checked. That is exactly what he did. Now I have to wait until next week until I hear something. I hate waiting. He seemed pretty confident that there wasn't anything unusual about it, but he wanted to be sure.

There isn't much else happening. I don't have my next transplant appointment or labs for another month. I am starting to get anxious about that.

I have had a lot of bloody noses happening lately. The good thing is that they don't last. And I am having a lot of bathroom issues which tend to give me stomach aches. That is the downfall of taking so many diuretics. Plus I am still having trouble with losing my breath and my voice. It doesn't take much for me to get winded.

Some days I feel like I'm spiraling and I feel like I am getting worse. I just need to remind myself that I need to be patient and continue to wait. I just wish I didn't have this big hole in my side while I do it.

Dear Abby...

2010-06-21T22:38:00.002-06:00

We have dogs and cats and guinea pigs and birds. Lately I have heard stories that after transplant some of these animals could be harmful to my health because of my immune system. This is alarming because I actually love some of these guys and spend a fair amount of time holding and petting them. Some rumors are that I might just have to get rid of them. Does anyone know if this is true?

Signed, Help!

Ragnar Relay Wasatch Back 2010: The Way I Remember It.

2010-06-20T01:02:00.003-06:00

Have you ever had the perfect day? I haven't had one of those for a while. Usually I get halfway through the day and I start feeling tired. I wrestle with sore muscles and body cramps. Mostly it is all internal digestive stuff and I have to focus on holding all the pieces of my body together so it doesn't come apart.

Today I started out with a stomach ache and I thought I was going to roll myself into a ball and cry. I kept telling myself, "Not today, not today." After a bran muffin I started feeling better. Things got much better.
We drove up to Park City to the Canyon Ski Resort to meet the team, "Dude, Where's My Van?" What should have been a twenty-five minute ride turned into an hour or so. With 13,000 relay racers on the hill and who knows how many spectators and friends cheering them on, the place was packed. We wandered around the resort while we waited for the team to get there so we could cheer them across the finish line. When we first got there organizers had everyone park at the bottom of the hill and take the tram up the mountain. My discomforts had long since passed and being outdoors in the clean fresh air riding over the grassy terrain was awesome. Looking at the cars parked below us gave me an idea of how many people were waiting up above. I was feeling anxious, knowing that when the team came in I would join them for the last part of the race as we all ran in together to cross the finish line.
We had been waiting for the better part of an hour when the team finally showed up. Sadly some of them had to leave earlier and there were only six of them. Amy D. informed us that the last runner that we were waiting for was her sister, Dani. Twenty minutes later Dani came around the corner and we all gathered on the sidelines so that we could join her.
A couple of days ago I didn't know anything about this race. But I was learning. I had read the history of how the race was conceived and got started and how those men who had put it together had turned it into the biggest relay race in the world. I had learned about the man called Ragnar and who and what he represented. The attributes of his character were now a part of all these racers. Endurance and strength. A conqueror and explorer. A free spirit and wild man. And although I didn't run this race, for a moment I was going to step in line with those who did. It was invigorating and humbling.
As Dani approached I hooted and hollered. She asked Amy, "Is this Beaux?"

Winded and tired, she ran next to me and said, "I just kept saying your name!"

Today was a perfect day. And see that medal around my neck? That belongs to Amy.

Amy and me.

Dude, Where's My Van?

2010-06-18T00:25:00.007-06:00

It takes very little to take my breath away. The simple act of leaning over to tie my shoes is enough to keep me panting for a good minute or so. I used to climb the stairs at work and in my house two steps at a time. It has been several months now since I stopped doing that. There are other things I used to do that are just too laborious for my body. I quit riding my bike last year when the first snow fell. I just didn't know it yet. Twice this year I pumped up the tires on my bike and I had to sit down before I could get on it to ride a block to the store. I miss the active me.

Last night:

"Oh yeah, I forgot to tell you, " Lois said. "Amy D. is running a race this weekend. They are running from Logan, Utah, to Park City. Every year they run for someone. This year they are running for you."

"What?"

"They are running in your honor, and to raise awareness for organ donation."

I thought about this and it made me gulp. I even had the start of tears forming in my eye. And for a moment I am back in my garage pumping up my tires and I feel like I'm finally going for a ride. "This sounds way cool," I am thinking to myself.

"That sounds way cool," I say out loud.

"Their team is all having a barbecue tomorrow and they would like it if we could stop by."

Tonight:

I feel a little shy and apprehensive as we enter the house. The team is laughing and joking and it sounds like they are all having fun. Amy introduces our family to the the team members that are there and we sit down and have burgers. I am unfamiliar with the race and I ask Amy how long it is.

"It's 188 miles."

"Oh my gosh!" I say.

"Yeah, it's a long ways," Amy laughs.

The run is called the Ragnar Relay's Wasatch Back and their team is called, 'Dude, Where's My Van?' Amy has been running this race from the very beginning. This is its seventh year. The team consists of 12 people and there are 3 legs. Each runner does a particular leg and then another team member takes over. They do this three times. This year there are 13,000 participants.

As Lois and I asked how they all got together and started doing this, they began reminiscing about their past events and told us stories that had us rolling on the floor. The apprehension that I had earlier was long forgotten. This group of people -- this team -- had left me smiling.

I am moved by the kindness that these strangers have extended. They are running because they love it. But that I am to be part of it has me running along beside them.

Also visit this link:

http://www.deseretnews.com/blog/68/10009307/Reasons-to-Run-Dude-Were-running-for-Beaux-and-organ-donation.html

Happiness is...

2010-06-09T17:00:00.001-06:00

I have been getting a lot of muscle cramps in my legs lately. The cramps generally hit my calves in my legs and they hurt like hell, sometimes causing me to cramp up in my hands or feet when I start tightening up. Our little trek to Tanner park the other day really made me sore and I cramped up the following day while I was watching a movie at the theater.
I usually end up screaming out in pain, but because I was in the theater I had to endure it while my body slowly did its contortionist thing and made me look all weird and scary. I'm sure the people sitting up in the rows above me were quite amused by all the body movement I was doing. They were probably thinking: "Okay, that guy is just creepy. Honey, I think we should move."
I had been taking a muscle relaxer that the doctors gave me, but they had me stop taking it because they didn't want me feeling so tired and they wanted me to stay more clear headed. But the problem with discontinuing the drug only made things worse when the cramps returned. Eventually after a couple of months I asked the doctors if there was something else I could take and they told me I could go back on the muscle relaxer. That was good, except I just started back on the pills and they haven't really done a lot to help yet. I have been limping since our park excursion and the theater fiasco.
Yesterday we went to Thanksgiving Point to see the flower gardens and as we started out Lois joking asked if I wanted a wheel chair they had for rent. I told her, "Yes!" But the truth was I was joking and I wouldn't have used one anyway. Not yet, anyways. We also noticed that they had Segways and golf carts for rent and decided that we didn't want to walk through three miles of trails when they had golf carts available. That was the coolest thing we could have done.
We started out with Lois driving and a half a mile later Aly was just dying to drive the cart. Naturally we had to let her drive for a while. I think she kind of got spooked and then I took over. We did this for about two or three hours and drove all the trails and took lots and lots of pictures. The place was beautiful and we had never been there before. We visited the dinosaur museum years ago when they first opened the place but, we had not been back since.
I don't have much else to share. I don't go back to the doctor until August and I will have my MELD score checked again sometime before my appointment. I am still getting awfully tired and there are noticeable changes that I see on a daily basis. I do my best to deal with them and that is about all I can do. Right now my focus is just to stay healthy and spend time with my family. There is a certain love and bliss that comes with all that. Falling in love all over again. Having children again. Every moment seems new to me sometimes. I suppose it is like holding on to not letting go. I am happy.

Nine

2010-05-20T22:44:00.000-06:00

For two years now I have been slowly getting sick. In those earlier days before they started bombarding me with medicine, I would get awfully sick. Sometimes I would curl up on my bed in a ball and cry out in pain. I had no idea what was happening to me. The pain would come and go and I just assumed I was sick. As it turned out I was sick. Very sick.

Lately I have felt a small change. Yesterday I woke up nauseated, thinking I was going to be ill. That is a symptom I haven't had for a very long time. I have also been very tired lately. That symptom is nothing new. I have been tired all along. But this has been a new kind of tired. It carries a different weight to it and it has been relentless.

I had new labs drawn on Monday. We are still checking my INR for the coumadin. This week we also checked my MELD score. The last time we checked it -- three months ago -- my score was 11. My new coordinator decided that we would wait until January before we checked it again, but then Lois talked to her about how often it changed and my coordinator agreed to let me get it checked again. Today she called to tell me that the coumadin is looking good and that my MELD had risen considerably. It was 18.

As I thought about the number, knowing that 23 to 25 can be a good average range for a transplant in this region, my heart started doing pitter-patters. And then my coordinator said something that I could barely comprehend. "Your placement on the list puts you at number nine, or thereabouts."

I understood what she meant by "thereabouts" because thereabouts implies all the factors involved in a MELD score. It is the derivative of every other person involved. It is weight and size, it is a score of someone who is at 40 and someone who is at 20. It is everything that happens between now and then. Illness. Infection. Death and dying. The list goes on.

Listening to my coordinator I suddenly realized that I was crying. Time seemed to be catching up. My thought was, "I am closer. This is happening."

I found Lois and told her everything.

Hugging each other, Lois asked, "Does this make it seem more real now?"

With my heart breaking, I could only nod yes.

Plus ca change, plus ce le meme chose

2010-05-11T22:21:00.000-06:00

A lot has been happening and yet nothing at all.
Last week I celebrated 2 years of not smoking. I have also been on the waiting list for 20 months. It's hard to believe so much time has passed by.
I started taking Enbrel again and I wouldn't let Lois give me a shot for 2 days because I'm a big baby and I hate needles. Now that we've picked a day I have to do it every Thursday. I'm sure that once the psoriasis starts getting better I'll be happy about it. In the meantime, I will probably whine for the next several months. The last time I was on it, I steadily got worse from week to week and dreaded being stuck. I would almost cry every time Lois gave me an injection.
(Taps fingers)
My coumadin labs were all berserk and I am getting labs drawn once a week as they adjust the dosage. I've had a few bloody noses, so something is happening. One day I had a bruise on my hand about the size of a nickel and then it disappeared a couple of days later. I wonder what it does if you have already had varices? My last endoscopy showed varices in the stomach. That kind of makes me nervous.
My muscle cramps have returned. I wondered what would happen when they took the medicine away that was helping. It really is a bummer. They usually come when I stretch and it can be a rude awakening while lying in bed.
The sky, however, was fabulous tonight. And the cat with the really good fur is letting me rub my bare feet on him, so life could be worse.

Whatever Happened with that Interferon/Ribavirin Treatment?

2010-04-13T20:06:00.000-06:00

I went to see the doctor today for my clinic appointment and we talked about me doing the interferon/ribavirin treatment for the HCV. The doctor decided that it would be in my best interest to pursue treatment after transplant. In the meanwhile I was urged to work on treating my psoriasis which has really started to get out of hand. I am generally feeling miserable with it right now. Plus, the doctor decided to put me on coumadin because of the blood clot they found this past January in my portal vein. I will do the coumadin for a month and then I suppose they'll do another CT scan. Most of this is good news and I will benefit from it in the long run. The only thing I don't like is that once I go back to see my dermatologist, I will most likely go back on Embrel and I hate the injections. But I guess that's a small price to pay if it will bring me some comfort and get rid of the psoriasis again.

I have also been having some hearing issue problems that we are looking at. I keep getting a ringing in my ears and sometimes things sound muffled and then come back on. Kind of like the elevation thing when you have to yawn to correct it. Anyhow, we cut back the dosage of the neomycin I have been on and we will watch it. The last thing I want to do is lose my hearing because of all the meds I am on.

Well, not much more to add to this.

Zombie

2010-04-10T03:37:00.007-06:00

I wonder if George A. Romero knew someone who was sick when he directed Night of the Living Dead?

My wife was looking at me the other day and she said, "Your eyes are starting to turn yellow."
I don't see it, but evidently she does. And having dark skin makes it kind of hard to tell if I am getting jaundice. I suppose it probably leaves me looking a little discolored. I have dark rings under my eyes, the result of leaky capillaries. Gravity causes the blood to fall downward and deposits below my eyes making me look tired and sick. They say 8 hours of sleep will fix this but, it is hard when sleeping is a difficult thing to do with this disease. I also have this whole blood clotting factor going on and a simple bump will bruise me. These things combined with my psoriasis have me looking pretty scary these days. I look bruised with lesions peppered across my body from the psoriasis and the scratching and I feel a little self conscious about it at times. Not always; just sometimes. I realize I am sick and there isn't much I can do about the way I look. I didn't realize I was being so vain until I read another blogger's post earlier today.

Today I was reminded that it has been two years since I was diagnosed with liver disease. I was told back then that I had 18 months before I might see another bleed out from varices. My last endoscopy showed that I have stopped bleeding in my esophagus and that the varices has moved to my stomach. I guess all the medicine I am taking is working. The doctors don't seem to be worried about what's happening in my stomach, and I suppose unless I start leaking a lot of blood then I am somewhat safe. In the meantime I remain wary.

I still find this all hard to talk about at times when I think of everything involved. The Call. Another person dying. My family. Myself.

Lois asked me the other day, "Are you getting scared?"

I said, "I don't know?"

It all seems unreal. I don't think I'll know until I get real sick.

Update

2010-03-09T18:13:00.001-07:00

Not much is happening. Ever since my med's got changed I have been doing better. The cramps are still noticeable, but they have subsided somewhat. I feel good in general though, if you don't count all the bathroom trips and the getting tired. Even the tiredness is a little better. It usually catches up to me over the weekend.

The one thing that hasn't changed is my breathing. It takes very little to lose my breath. I walked about a block the other day and I was huffing and puffing. I still don't understand what is causing this and I don't understand why I keep losing my voice while I'm talking. It frustrates me that my doctors don't know why. It seems like at least one of the doctors would be familiar with such a symptom as this. Maybe it's time I see my family doctor and see what he has to say.

I am also going to start back on the pegylated interferon and ribavirin program that I did a few years ago. I am kind of anxious and nervous, but mostly I would just like to get started on it. The doctors are working on new protocols for the Hep-C treatment and then they will schedule an appointment for me.

That is all.

Down for the Count

2010-02-21T10:50:00.001-07:00

On Friday I had been at work for no more than an hour when I suddenly realized that I had a cold. I looked at the clock and noted the date and time because I'm sure that this will play an intricate roll in my being sick as a dog. For instance, three weeks from now I can look back and say: "I've been sick for three weeks." Or it might be that in 5 days the cold will disappear and I will say to myself, "That was the shortest cold ever." In any regard, it is intricate. At least that is what my OCD was telling me at the time.

Anyhow, I waited for 9 a.m. to roll around so I could cancel my Monday dentist appointment, because that would have just been rude showing up all snotty and sneezing and blech. All though I'm pretty sure I would have called and canceled Monday anyways, on the account I feel like crap. Plus we had a dinner engagement for tonight that I was looking forward to and we had to push that back.

This morning I woke up and my head feels like it wants to explode. I can push on my eyelids and feel a squishy feeling behind them. Mucus. A hot wash cloth seems to help with that, but I'm not going to stand in the bathroom applying warm compresses over my eyes every 30 seconds for an hour if all I'm doing is getting wet. Maybe I'll just rub on some more Vicks and go back to bed. After I have some mojo Theraflu.

I can't remember the last time I had a cold that felt this bad. But I do remember making a mental note of it because I thought it might be important.

65 Red Roses

2010-02-14T22:05:00.008-07:00

Over the past several months I have taken a personal interest in organ donation. I am not talking about pounding the pavement and meeting and greeting people who will get the wheels rolling, but more of self-interest because I think organ donation is important worldwide. I will write a post every so often that reflects this, or I will post a banner on my sidebar to remind people they can sign up if they haven't already. I actually do very little when it comes to donor awareness, but I still try to get the message out there whenever I can.
A few months ago after I started having breathing issues, I found myself exploring the internet looking for answers as to why I had trouble breathing and losing my voice when I talked. Unfortunately I didn't find out anything, but I discovered some sites that had to do with Cystic Fibrosis. I soon discovered one site called
65 Red Roses and I watched a video about a young girl -- 25 year old Canadian Eva Markvoort -- who's been struggling with this awful disease all of her life. Despite all of her hardships, she continually maintains a beautiful, kind and spirited sense of self that is uplifting for all who meet her. She has been a powerful inspiration to me and for many others.
In 2007, the idea for a documentary about Eva's life and the journey she's been on was just in the making. Eva had been told by doctors that she probably only had a couple of years left before she would need a transplant. The clock was ticking.
On Monday, Nov. 16, 2009 65_Red Roses, a documentary aired in Canada on the CBC News Network's The Passionate Eye and since then has won several awards. I was sad to miss the premiere but unfortunately it has not yet come to the United States. From what I understand it is waiting for someone who can sponsor the program before it can be brought here for viewing.
The two filmmakers, Philip Lyall and Nimisha Mukerji, had hoped that their documentary would inspire people to sign up to be organ donors. I can only pray that it worked.

The other day I was visiting Eva's LiveJournal website and there was a video post titled "I love you all". I was on a computer that didn't have a media player hooked up on it so I couldn't watch the video. Looking at the comment section I noticed that there were over 900 comments on her post. I took a short breath and let it out with a prayer. Something was happening; her page had gone viral.
I was wondering if this was it. Was she getting another transplant? I read a few comments and as usual they offered her comfort and prayers. But they did not seem like the kind of comments you would get before going into a transplant. They seemed sad and I could only surmise that something was wrong.
A few hours later when I got home I turned on my computer and I learned that Eva's health had changed for the worst. She has been sick for some time now where she has been facing chronic rejection and has been staying at Vancouver General Hospital in Vancouver, British Columbia, Canada. The province has the lowest donor rate in that country.

On February 11, Eva posted a goodbye video telling all her friends that she didn't have very long to live. Her mom and dad and sister are gathered around her thanking everyone for all their support. They are biding time. Sharing memories. Hanging out with close friends and family.
I quietly cry and once again find myself praying for a miracle. It is very hard for me to comprehend this. The situation is hard to fathom; someone must die so another can live. Everything must be perfect. As if a double lung transplant wasn't already enough.

There isn't a lot that I can do. But while I keep a journal documenting my own transplant experience, I can occasionally remind people that there is something they can do. Consider being a donor. Consider what you might have to offer. Consider the fact that you might save someone from dying and that you might bring some family the gift of life and happiness.

Eva, you are in my prayers...

(On a side note, I'd like to say that there are literally tens of thousands of people worldwide who have Cystic Fibrosis. And while this post was written with Eva in mind, and it was meant to drum home the necessity of organ donating, I in no means wish to take away from all those who live and suffer from CF on a daily basis. There are approximately 1,000 new cases of CF diagnosed each year.
Each year thousands of people are waiting for vital organs and tissues so that they might have a fighting chance at life.)

Why I Haven't Been Writing...

2010-02-13T11:07:00.006-07:00

Angry
Confused
Got the saddies
Tired

All of the above.

These past few days have been hard for me. I've been angry. I've been sad. I've been hopelessly fighting a battle within myself.
The doctor broke it down to me in no uncertain terms: "You are sick and your liver is getting worse."
Again I heard the story about the liver being a big processing plant that filters out all the poisons and produces nutrients for the body. When the liver isn't working the poison looks for other places to go. You get nauseated. There are aches and pains. There is the unyielding desire to sleep. You get confused. All of these are signs of encephalopathy. Untreated you may slip into a coma. The last stage is death.
"We need to clear your head." He says.
We go over all of my medication and he tells me what he wants me to do. First we are increasing the dosage of the beta blocker, and the Neomycin and the Omeprazole and the Lactulose. We are getting rid of the muscle relaxer and the anti-nausea medicine and the Ambien.
Fortunately I wasn't counting on any of the drugs he took away. The nausea medicine rarely worked. The Ambien I didn't use very often and the muscle relaxer was for muscle cramps and those pills haven't been helping out that much lately.
The doctor explains to me again about the importance of staying on the Lactulose. "It is your friend and it will save your life. The alternative is that oneday, Lois, will have to call an ambulance and they will load me up and bring me to the hospital and they will shove a tube down my throat and deliver the lactulose this way on the hour every hour until I come back around."
So I guess there's that.
Anyhow, Lactulose is this thick syrup that you drink so that the ammonia that is stuck in your body can hitch a ride out while you are sitting on the toilet having diarrhea. I don't like to talk about it, but that is its purpose; to get the poison out of the body so it doesn't go to the brain and kill you.
Now my problem is that I don't take the medicine on my work days because who the hell wants to have diarrhea all day long during a 12 hour shift? Me...I don't like to. But that's all a thing of the past now and I'm taking the shit 3 times a day every day (Yeah, I did a swear there) and I want to cry. I don't mind it so much at home when I'm off of work, but this work thing really sucks. But hey, I'm alive and not in a coma. So I guess I got that going for me as well.
In conclusion: doctors suck. But they are saving my life so I guess I will listen to them.
I'm still mad.

"We're going to need you to get a little more sicker."

2010-01-25T10:35:00.000-07:00

My MELD score has dropped 3 points. This is supposed to be a good thing. It means I have a while yet until transplant.
This little bit of information has brought me some disappointment. It feels like such a step backwards. I suppose I am just tired of it all.
As I've mentioned before, because the transplant surgery is so high risk, doctors don't like to do one until it is absolutely necessary. Most often this happens when the patient is very, very ill. Another reason they wait so long is because the organs are just not available and they really have no choice. Hence the long waiting list.
After I had my endoscopy/colonoscopy on Tuesday, the doctor informed me that everything looked good. No polyps. No lesions. No tumors. The varices in my esophagus stopped bleeding a year ago and I don't appear to have a problem there any more but the varices are now in my stomach and they will have to continue to monitor them.
My transplant coordinator (from now on let's just call her the TC) called me on Thursday and said that my heart and lungs and all that stuff looked relatively normal. The only thing they saw in the bubble echo was that I had a little heart murmur which we were already aware of. She was going to run that by the doctor to see if that was something they wanted to fix.
So basically all these tests came up with nothing to explain away how I've been feeling. I still have awful stomach aches and the shortness of breath doesn't seem to raise any flags. They don't feel that ascites is a factor — which I find boggling. Especially since ascites can put pressure on the diaphragm and make it difficult to breathe. According to the contrast CT scan I had two weeks ago, they didn't see any ascites around the abdomen. The doctor’s diagnosis was that there was maybe a little ascites. Perhaps I am having sympathy ascites.
I also learned that I am starting to get jaundice. Up until now the yellow has been hard to detect because of my skin color. He saw it under my tongue and in my eyes.
And so, after my endoscopy the doctor said that with my new MELD score, it was likely I was good for another year or so before transplant. That seems like a long time considering it has almost been two years since this all started. The way the doctor talked to me seemed a little disconnected. I felt like a man who just brought his car into the service station for a tune up. "Everything looks good Mr. Kyle, bring her back in about 6 months."
"Okay Bob, see you in 6 months."

(Tick tock, tick tock, tick tock)

Meanwhile my thoughts have started running random. I'm thinking about my talk with the TC last week.
"Oh that's a good score. There's nothing wrong with that. You want to hold on as long as you can and they don't want to do transplants too early because of all the risks involved."
She's offered me some encouragement and then she drops the ball when she brings mortality figures into the picture.

"What the Ef!" I'm thinking to myself. "And yes, I know the figures. I've known since March 15, 2008. It was a Saturday. The day I got out of the hospital and went home and got on the internet."

Maybe I just need a long vacation. I think I've got a little time now that I have this new window to look through.

The Shape of Things to Come

2010-01-10T11:39:00.002-07:00

We had some good news Friday, more or less. My CT scan revealed no lumps or tumors and, amazingly, no ascites -- the excess fluid that I believed all along was sloshing around my stomach. Evidently I just got fat on my own. I suppose having a degrading liver has something to do with that. But the scan did reveal a blood clot located in my hepatic portal vein. More on this in a second.
We first met with the pharmacist who did a run down on all the drugs I am taking. She then informed us that my transplant coordinator wasn't in because she had the day off. I was very disappointed to hear that, because up until now, we have still not had a chance to meet her. My last coordinator left the clinic almost 4 months ago. I was really looking forward to meeting the new nurse who is in charge of my care. That transition has left me feeling a little lost, especially since I had such a good rapport with my last coordinator and now I feel a little lost in the shuffle. And even though I understand that her jumping into a new job and learning the ropes and dealing with the patients who are far sicker than I am, I had at least expected to have some sort of meet and greet in there somewhere.
We later met with a P.A. who seemed rather nice. Lois and I voiced some of our concerns and told her about some of the problems I've been having. After a minute or so she told us about the blood clot. She told us that a clot like this was not uncommon with people who were going through liver failure and that it most likely posed no threat, but that we would have to continue to monitor it and treat it if it started to look like it was going to be a problem. We were also told that this particular clot was unlikely to displace itself and that it would probably just harden and stay where it was.
When the doctor came in we first started talking about my stomach pains and the whole issue of the blood clot kind of got lost on us. Once I started talking about some of the pains I was having and the difficult time I had catching my breath and losing my voice when I talked, that became more of a concern to my doctor than anything else. After I described an area where I got deep chest pains, he decided that I needed another echo bubble cardio-thingamajig. We never talked about the clot. Later I wanted to kick myself, especially after doing a little research on blood clots in the portal vein. Some of the symptoms I read about online described exactly what I was feeling. Elevated liver enzymes, sharp pains beneath the rib cage (exactly what I am feeling) and stomach pains.
I had labs drawn on Friday, so I am anxious to see where my new levels are and see if my MELD score has changed.
But back to the blood clot, the P.A. said that the thing wasn't the type to displace itself, and it shouldn't block the pipe the blood was flowing through. And it's a pretty damn big pipe, it’s as big as the esophagus or the aorta. I’m not sure how she knows it won’t block it.
What makes me madder than hell is that we kind of got lost in all the other topics, when the doctor finally showed up we never went back and talked about the one thing that seemed most important of all, and that was the damned clot.
After it was all said and done, the doctor left us with a series of tests that they are going to run. Another endoscopy, a colonoscopy and the heart thingy. We will see what they find there and they will check my new labs to see if the MELD has changed or if there is anything else that looks out of the ordinary that they might want to think about addressing. When I get my endoscopy I will talk to the surgeon about the blood clot and I am planning to talk with my coordinator later in the week.
The funny thing about it all was that the clot seemed to be the least of anybody’s worries and the P.A. kind of frightened me when her voice started cracking and her face got all flushed at the possibility of admitting me right then and there to see what was going on. But then the doctor came in and said, "Oh, we'll run some test and see where we are."
I preferred his approach a little bit better, even though he did seem a little more concerned with what was happening in my chest than in my stomach. I will get my new MELD score sometime this week. I am hoping for at least a higher number.

Update

2010-01-06T12:47:00.001-07:00

I haven't been feeling very well these past few weeks. Lois finally convinced me to call the transplant center and see if I could get my February appointment moved up to an earlier date, but the best they could do was to get me in four days sooner. Not a lot of help. Anyway, my coordinator is going to try to get me in sooner if an appointment cancels.
I am kind of nervous; she mentioned the possibility of doing a Paracentesis procedure. I am not wild about the idea of having a long thin needle stuck into my stomach so that they can drain fluid from me, but the good thing about this procedure is that they can tell if there is an infection. They can also check for liver cancer -- not uncommon with advanced hep cirrhosis -- and remove enough fluid that could be causing some of my breathing and stomach problems. I guess if it takes away my stomach problems then it would be worth it. I will have to wait and see, though.
In the meantime, they are going to schedule another CT scan and look for anything abnormal. If it looks as though I need to have a paracentesis then they will do one I suppose.
I am also curious about my last endoscopy. While the bleeding has stopped in my esophagus, it did show that the varices had moved into my stomach. I don't see this being my immediate problem. I'm pretty sure that if I were bleeding then I would know it. But maybe the stomach varices could be part of what's causing me so much pain? I'll have to ask the doctor about this.
Other than having all these stomach aches, I am doing pretty good. The nausea pills don't seem to be doing anything at all to help, so maybe it is just ascites. Trying to explain this over the phone to my coordinator was kind of hard because I have yet to meet her since my last transplant coordinator left the clinic. She doesn't really know anything about me except for what she's read in my file. It has also been a while since I've seen one of the doctors. I would imagine it is also kind of difficult for them to physically place me, seeing how they probably don't remember me very well. I have only been seen by the surgeons twice in the last year and a half.
I hope that my next visit helps determine some of what is happening to me. As my wife pointed out to me, they supposedly can fix just about anything with the right medications. And this is my worry, I am already taking 18 - 20 pills a day. I worry a lot about my kidneys.
I am hoping for a good year. There is a good chance that I'll get my transplant this year. This is hard for me to wrap my head around sometimes.
Well, the transplant clinic just called and there is an opening on Friday to meet with the doctor. I was also scheduled for a CT scan in the morning. Weehaw! I guess I'll no more on Friday.
Be back soon.

A Couple of Things

2009-12-13T21:24:00.011-07:00

Today wasn't a very good day. I woke up a little before 6 am and spent all morning retching with dry heaves until I finally got sick. After 3 ½ hours of this I made my way back to bed exhausted and was extremely sore all over. I think I am clear of whatever it was. Lois seems to feel that it was the chicken we ate last night. I'm not very sure. It is hard to say what brought it on and whether or not it has to do with my health issues. I'm leaning toward the latter.

I was just thinking, I haven't been this sick in a long time. It is nice to think of it in this way. Despite all of my ailments, most of them have been minor considering the circumstance. I have not had to be rushed to the hospital in ambulance or had to be admitted to a hospital for any length of time. Looking back I would say that I've been very fortunate. My MELD score is still very low and I am still able to work. So I guess I got that going for me.

*****************

This journal is a year old this month. I want to take a moment to say Thank You to everyone who has been kind enough to stop by and visit and to all those who have taken the time to become friends during the past year. Your friendship means a lot to me and I am grateful to have met all of you. Some of you have found your way here through my other blog and others through the transplant network. There are also many of you who have been writing to me through e-mails and offering your support. Most of you have already been through the transplant experience or have had a spouse that has gone through it. Your encouragement and kindness to reach out and share with me your own experience has been a true gift to me and I thank each and every one of you for this. There is no way for me to describe how this makes me feel. I appreciate your kindness and all the well wishes.

In a Nutshell

2009-12-09T12:12:00.005-07:00

Lately I've been feeling sore. I never know when the pain will come. Sometimes I have bouts of it. Sometimes it is like jolts of electricity shooting through my body. It may be in my back or in my stomach. It may travel through my shoulders or my legs. They are usually brief, like they are subtle reminders of what comes next, screaming this is that. Sometimes there is no pain. Sometimes it is just an unrelenting tiredness that has no boundary. I must just sleep. Sometimes it is a persistent nauseating feeling in my stomach.
My muscle mass is slowly wasting. That means my strength is leaving. I am going to have to work on this. If I can do anything for myself right now then this is it. I need more exercise.
I haven't been writing very much because I keep losing my train of thought. I don't think it's terribly bad, but it is certainly more difficult. Sometimes I will be talking to Lois and I'll lose the words. I have to stop and think about what it is I'm saying. She'll ask me repeatedly what it is I'm trying to say and then I will get frustrated and tell her to hang on a second. This is a big worry for me. I don't want to lose my mental faculties.
My psoriasis has returned. I was hoping that I'd have my transplant before this happened. I'm not sure what to do about this new development because it takes a lot of time to treat it and it is uncomfortable. I was actually thinking about asking my doctor about trying the interferon treatment again to see if we could fight the HCV. I figured that if I was going to be miserable for the next few months then maybe I could give it a shot and see what happens. But the interferon has a nasty way of making the psoriasis flare up so maybe that won't work right now.
I realize that this post probably sounds kind of depressing. I think I'm a bit overwhelmed these days. Up until recently I've tried to keep my head on straight. And in all honesty I think I've been doing a pretty good job of it.
I hope to be feeling better by the next time I post again.
Peace.

Day 5

2009-11-26T10:18:00.000-07:00

Well my oldest is still a little sick but doing much better. Lois and I are trying to avoid it.
Today we are heading to Paradise for Thanksgiving. It will be a nice drive.
I just wanted to say Happy Thanksgiving to everybody and may you all have a wonderful new year.

Day 2

2009-11-23T11:17:00.001-07:00

It snowed last night. At 4:30 in the evening the clouds hung over the valley like a thick blanket and the mountain tops of the Wasatch front were all but buried in them. It looked so beautiful. I wanted to go for a drive in the mountains.

**************

I took the girls to see New Moon and it really is nothing more than a love story in every sense. Oddly enough I never have cared for vampire movies. I am a science-fiction/horror flick nut, but I have always passed on the old Dracula movies. I remember seeing all the b/w Bela Lugosi movies and I think they kind of creeped me out. And I never did care for Anne Rampling.

I liked New Moon, although this Pattinson guy and Stewart aren't very good actors. I'm pretty sure Stewart plays that same role in everything she does. And just when I thought Pattinson couldn't get any weirder he goes and pulls his shirt off. I think she should have stuck with the wolfman.

I actually like the Cullen's clan. The blonde not so much. I think Ashley Greene steals the movie just by being in it.

**************

I am off work for the next 10 days. This is day 2 and I have a sick daughter with a temperature of 101. I'm almost afraid to go near her for fear of catching something. I guess I could use some long handled prongs to slide her water and toast and stuff. I should get me some masks for times like these.

**************

...hmm?...

That is all.

Prime Time Shows Organ Transplants

2009-11-15T15:07:00.000-07:00

I've been watching the new TV series called Three Rivers since the show first aired. It is a medical drama that centers around a fictional organ transplant clinic in Pittsburgh, Penn. I think my excitement about the show is that I hope its focus will shine some light on the subject of medical transplants and increase donor awareness.
For a brief moment on Sunday nights, the cameras will allow people to glimpse characters who are in need of a heart transplant. Or maybe it will be a lung, or a liver. Maybe one night the story will raise opinions about the moral and ethical debates of giving an organ to a reformed drug addict. Maybe it's about 'who is getting an organ first' when there is a slip up in the system and one Transplant Center thinks it's theirs when it's already been offered to another. Or maybe it's just about a clock counting backwards and a life running out of time.
The stories for the most part remain true to nature. They capture the end result of the horrific accident that sends an ambulance screaming towards Three Rivers emergency room. There is the girl who keels over at her gymnastic meet because she's too sick to stand from a damaged liver and the innocent little boy who gets crushed at the fair. There are also the friends and families involved and you get a sense of how it must be to have your loved ones hanging on to dear life while dear life is being ripped away from them.
I suppose in a way it doesn't really matter how they got there. It's really about what comes next and how they're going to get out of it. Will they make it out?

Carol Barbee is the producer/writer for this new series and she spent time researching for Three Rivers at The Cleveland Clinic with Dr. Gonzalo Gonzalez-Stawinski. His professional career as a surgeon carries a list of credits that include cardiac surgery, heart transplants and coronary artery bypass graft surgery, to name a few. Dr. Robert Kormos, who is co-director of heart transplantation at University of Pittsburgh Medical Center (UPMC), also provided input for the writers of the show. And perhaps one of the coolest things I thought that happened at the Three Rivers set was a visit by Thomas E. Starzl. Starzl has been called "the father of modern transplantation." He performed the first human liver transplants and is considered one of the pioneers of transplants.

I like the show because it offers a certain view into something I'm trying to understand. While I'm sure a big part of it is my connection to the transplant world, I am also hoping to be educated. Maybe a show like this will raise awareness for organ donations.
In July of this year there were more than 102,000 men, women and children waiting for an organ transplant, according to the United Network for Organ Sharing (UNOS). On average there are about 18 people who die each day waiting for an organ transplant. This isn't a very large number, considering that there about 100 more who die each day in auto accidents. But it is a death toll just the same, and when added to another and another, one begins to realize lives can be saved.

keeping up

2009-11-08T11:15:00.001-07:00

I am starting to wear thin. My good days are slowly being overtaken by my bad.
DeCoster was right (Deliver My Liver) when he wrote back to me almost a year ago and said, "I hope you are able to keep your wit and perspective through the times coming."

Even before I understood exactly what he was talking about, I had an idea that my life was going to change immensely. I just didn't know how much until months later.

I didn't know that walking from over there to here would be so much of a chore, or that bending down to pick up something would be so demanding. I didn't know that my legs would go numb from sitting too long if I didn't move or that I would experience a tingling sensation in my circulation as it traveled from one limb to another stretching all the way out into my fingertips. I didn't know that a pounding heart and gasping breath would leave me immobile on those rare occasions when I wanted to run, play, swing.

Later when my body began to change I would quietly turn and study the mirror. That's new. That's new. and, What the hell is that? Those things became my new mantra.

Now I just take cursory looks and tell myself that one day this will all be over. One day I will see my waistline without having to look in the mirror. I will be able to bend and tie my shoes. One day I will be able to take a flight of stairs without stopping for a breather. One day maybe I won't need promethazine or zolpidem or beta blockers. One day I might sleep normally and wake up with the rest of the world.

For now all I can do is imagine what comes next. Will I get confused? Tangled? Distraught? Most assuredly. Already I am.

My friends say, "Hang in there, buddy."

I say, "I am."

It is strange to be in this place. Watching it all fall apart. Once in a while I have to absorb it. Process it. Dwell on what comes next.
And that is okay.
That is okay.

Three Post on Organ Donation and Awareness

2009-10-28T08:32:00.002-06:00

Here are three post that I have read over the past few months that touch on organ donation. I thought they were all well written and informative. Each of them offer a different outlook on organ failure, organ donation
and organ awareness.

Over the last year I have run across a lot of material that I find useful as a transplant patient. Most of it comes from people who have already undergone a transplant or who are about to. As a person going through chronic liver failure and who has been on the waiting list for over a year now, I know that life can often be very complicated and challenging. The depth of emotions and the physical aspects of the disease can be very taxing and overwhelming for any individual and on their families.

One thing that I've noticed that seems to be a constant; is that the need for tissue and organ donation awareness remains very high. Often people do not recognize this until someone they know has been affected or they themselves are in need of an organ transplant. Many people do not understand that people who are on a transplant waiting list are usually on it for many months and even years; their body functions often failing as time goes on.

Okay Fine Dammit

What The Doc Didn't Tell Me

Suburb Sanity

High Risk

2009-10-15T21:53:00.005-06:00

(Click on photo for closer view)

Today one of my co-workers didn't come to work because he's got Swine Flu. I figured since I have a compromised immune system I'd better see if I could get in some place and see if I could get the H1N1 vaccine.

I called my transplant center and they referred me to the Health Department. They said they were out and didn't expect any until November 1st.
I then called my doctor's office on the off chance their clinic had some on hand and struck out. It appears it is unavailable everywhere and if there is any around you have to call all over the city and hope that somebody tells you they have some.

I have not really given Swine Flu much thought because I have honestly been more worried about West Nile disease. Especially because I live in a neighborhood with a million mosquitoes. But now that the flu has made a stop in our shop I'm kind of weary. Suddenly two weeks seems like a long ways away.

On Working...

2009-10-11T23:29:00.003-06:00

Yesterday I was supposed to go see a lecture with Daniel Schorr and Roxana Saberi; I had really been looking forward to seeing this with Lois. Instead I felt nauseated all day long and I had to work a 12 hour shift. When I came home I rolled myself into a ball and curled up on the couch.
I am starting to feel worse these days. I don't share this for sympathy, but more for fact. But mostly because this is really some what of a journal. It is like my log so that I have something to look back on. I'm not sure why I started this, but it has been like therapy. For some reason it seems important that I document all this. And then there is also the friendships that I have developed. They have become both dear and important to me at the same time.

So I come home and I curl up into a ball and there is a movie on T.V. called: Life as a House. I have no idea what it is about and I am too tired to change the channel. So I watch.
Dude, this movie sucks of bittersweet. This man (Kevin Kline) is dying from terminal cancer. And in the meantime nobody knows that he is dying. He has an ex-wife played by Kristin Scott Thomas, who is disheartened because she has a mixed-up teenage son who takes drugs and just wants to die or be left alone. He doesn't seem to know what he wants. So Kristin sends her son to live with his father (Kline) for the summer.
I was getting ready to change the channel because there was all this yelling and screaming going on by basically everyone and then I guess my morbid curiousity got the better of me because I didn't. So Kevin Kline is tearing down this house in southern California and he is going to rebuild it. He is trying to get his son involved by helping him, but the kid just hates everything in life and refuses to budge. Eventually all these other things start to happen in the film and the kid starts helping his dad build this house. That is really the storyline, that and the fact that the whole family grows closer and they eventually find out that dad is dying.
So, I'm lying there wiping tears off my face and I can't help but think about my own personal stuff. I'm getting sicker day by day, but I can't and don't, share some of the things I am going through. I mean, when Lois picks me up at the end of the day and she asks me how my day went, sometimes it just doesn't seem necessary to say I was miserable all day long. What good does it do. And unless I come home and crawl into bed for a 2-hour nap I think she's pretty good at assessing whether I am feeling all right. Plus, if I am feeling awful I will be the first to tell her.

It is clear to me now that I am getting sicker.
Earlier when my body started changing my heart sank. There were bloody noses, and weight gain. There were skin lesions and the gynecomastia. My appearance hit me hard, but I managed to keep myself from going insane. It was what it was. The stuff that I couldn't see also hurt. The internal physical stuff. Now all these things are finally ganging up on me.
I am really sick. My biggest worry now is being able to keep working. I think this scares me the most.

The Gift of Strangers

2009-10-06T19:35:00.004-06:00

I received a gift the other day that is very unique in many ways. Perhaps you've already read about it on my wife's blog last week over at Miscellany. I was given a Gift of Love and oddly enough it came to me from strangers.

My wife Lois was befriended by a woman from California through an email correspondence a while back. They started e-mailing each other and Lois conveyed to the woman that I was on a transplant waiting list. As some things have a way of leading to another, this is what began to happen. The woman asked Lois if she could say a prayer. Lois of course said yes, and told me about it later. The next thing that happened was we were asked if her church could make me a prayer quilt. I thought it was a beautiful gesture of goodwill and I said yes. A few days later I received this from Fed-ex.

I read the brochure that came with the Prayer Quilt I received and this is what it said.

What is a: Prayer Quilt?

A Prayer Quilt is a lap-sized cover, hand tied with square knots.

As each knot is tied, a prayer is offered for the person to receive the quilt.

When fully tied, the quilt is given as a gift of love and prayer.

A Prayer Quilt is a statement of our faith in God

and our belief in His power to comfort, strengthen and heal.

This label was also attached to the quilt. Now being a creature of habit and perhaps being a little OCD, I immediately started counting the knots. The first time I counted the knots I came up with 37 knots. But then the OCD kicked in and I decided to count them again. I came up with 38, and then 39, and then 41. Every time it was different. The last time I counted the knots there were 42. I thought that it was interesting that each time the count kept changing, and so therefore the prayers. This gift is absolutely awesome. But I'm kind of torn about what to do with it. Should I hang it on the wall? Put it someplace safe? Or wrap it around myself when I'm laying on the couch?

(Click on the photo's for a closer look)

On Being Tired

2009-09-19T11:57:00.002-06:00

I get asked from time to time regarding my health, "How are you feeling?"

It is not always the easiest question to answer. For one, it depends on who is asking. Some people generally want to know, while others seem to ask the question out of courtesy, as though some unwritten code suggests they have to. It is somewhat peculiar, to say the least, and I find it quite odd when I realize that they actually didn't want to know; they were just making light conversation.

It is a fine line and I've come to recognize the sincerity of the question when I hear it. I wish I could tell people everything that is happening with me in five sentences or less. That would be nice. But it isn't possible.

I was thinking about this the other day when somebody asked me that very question and all I could say was, "Pretty damn lousy."

It is direct and to the point, and very descriptive. But my response was a little too forward and I'm afraid I left them feeling a little uncomfortable as they walked away.

When I first started this blog I went looking for other blogs that had to do with liver transplants and I found quite a few of them. One of them was The Real Life - My Journey Living with Cirrhosis to Transplant by Nancy White Real. At the time Nancy had just had her transplant and she was starting her journey to recovery.

I spent a great deal of time reading through her post and found that I identified with a lot of the symptoms she described. There were a number of post in particular that caught my eye and that I could relate to. Two of them had to do with tiredness. Tiredness is perhaps one of the hardest things I have struggled with since all of this started. I am constantly in a state of exhaustion.

Today I was reminded of this as I finally had to surrender to it and come home. I was also nursing a bad stomach ache on top of it. While I was at work I wanted nothing more than to find a place to curl up and take a nap, and if I could have found a place I would have logged in on break and done just that. As it was, I finally went home and slept for three hours. I am feeling much better now.

The following is a post that I read on Nancy's blog. It is a description of how we people going through liver failure begin to feel after our health begins to fade. I thought that its message was one worth revisiting because it says a lot about the transplant patient and his/her symptoms, and it provides remarkable insight into how a person going through chronic liver failure often feels. This is an excerpt from a book she found. I am not really sure what the name of the book is, but the name of her post was called:
Extreme Tiredness in Liver Disease

(open letter to my transplant coordinator)

2009-09-16T11:23:00.003-06:00

Dear T.C.,

After having you for my transplant coordinator for the past year I was really disheartened to hear that you are leaving the transplant team. I understand the need for change, and I certainly understand your desire to do something different and something that you've wanted to do for a long time. I think you will do an outstanding job in newborn pediatrics.
I just wanted to say that I appreciate all that you've done for me over the past year. Every time I've had any questions, you have done what you can to answer them. Even if it took you a day because you were very busy, you have always managed to get back to me and not leave me hanging. Whenever I was going through a panic attack, you were always able to calm me down and assure me that nothing was wrong. You have always been able to assess the situation and explain to me that it was just a new symptom of the disease that was presenting and, if needed, you had the doctor call me right away. Which, incidentally, has happened more than once. Generally things were resolved with new medication and life continued on.
I have always appreciated the fact that when my wife and I had appointments, you always treated me with genuine respect. I have literally had consultations where the doctor or nurse chose to talk to my wife and not even look me in the eye, for whatever reasons they had. Apparently some people assume that because I'm sick, then perhaps I might not be able to understand them. Sometimes it has been necessary to say, "Yoohoo...eyes over here." That is a discourtesy that you have never inflicted on me and I thank you from the bottom of my heart.
Anyway, everything that you have done for me (us) has been greatly appreciated and Lois and I are going to miss you. On a professional level, you have done a great job and on a personal level you have been a good friend. We will miss that.
I am guessing that you have many patients pre- and post-op who will be very sad and shaken to see you go. I can only imagine that this will be hard for some of them (not to make you feel bad). But I think I can safely say that a lot of us are going to miss you.

Sincerely, Lois and Beaux (this is Beaux, by the way)

Oh yeah...and don't be a stranger. Drop us a line sometime.

Me, One Year Later

2009-09-04T18:32:00.002-06:00

This was my first blog post, written just a year ago. I come back to it every so often only because it is like a solemn reminder of my place in the world. It is like taking a look in the mirror for me. It conjures up images of a distraught child looking out of a fogged window into the rain. I see a woman looking into a mirror with tears in her eyes. There is a man in a fit of despair and anger is on the rise. And even though I see these things; I see each of them walking away with renewed hope in their eyes and the beginning of a smile on their face. I see them reborn with some inner faith.
I originally posted this on my other blog because this one hadn't yet been conceived of. And once I started writing about other things I knew that I couldn't write about my liver disease in the same blog. So I eventually started this one, The Paradox Syndrome.
Even the name of my other blog This Isn't Happening suggested my need to want to write about everything that I was experiencing. I wanted to write about the anger and pain and the grief that I had been overcome with. I wanted to laugh and I wanted to cry. I wanted to smile and I wanted to joke. Eventually my own spirit began to change and I was able to do all of them from post to post.
In the beginning I didn't realize that I was about to share this with just anyone. I was still very much alone in it. I would not share my anguish even with my family because I knew it would hurt their hearts. But I learned those feelings were no longer secrets, and I would find that out soon enough as I watched my wife weep and wipe tears from her eyes every time I wrote something. Still, my need to put pen to paper was a driving force and I continued on.
A year later, my spirit still wavers. And as haunting as all of this has been I am moved by my own recognition that life is fleeting. It is easy to hold on, but it is harder to let go. Occasionally I am that conjured vision of that boy staring through the window.
I wanted to re-post this because it has been a year now since I started all this. This is truly a reflection. While I may look at death with different eyes, I now look at life with open eyes: This Isn't Happening

One Year Later

2009-08-25T13:49:00.005-06:00

A year ago today my transplant coordinator crossed the T's and dotted the I's and officially listed me on the transplant list. It is hard to believe that it has been a full year. Today my coordinator told me that she had taken another job in newborn pediatrics and my heart sank. She has been truly wonderful and I am going to miss her. I will honestly say that I shed some tears. Getting to know a new doctor or nurse isn't always very easy. I am not really a people person to begin with. Telling them personal things is even harder. Things in the transplant world can get pretty personal. And graphic.
Doctor: "What color is your poop today?"
Patient: "Uh, what? None of your damn business!"
I really don't want to start that all over again. (Sigh) I will miss you Mrs T.

*************************************

I met with one of the new surgeons today at the clinic and he was very nice. He explained things to us like we had just walked in off the street. I was thinking to myself, "Dude, it's been 16 months now, we're not that naive." But it was also kind of refreshing to get a new beginners outlook on the big picture.
We spent about thirty minutes with him and he said that I am actually doing very well. I tossed some tears as I heard him talking about patients who are hanging on to dear life and who have reached a MELD of 40 and are deathly ill and on dialysis.
I still have trouble with the MELD score when I think of the people who are so ill and near to death, but their numbers don't reflect that. It seems unfair and I wish there was another way to measure a man's illness and be fair to them.

*************************************

One year. It is hard for me to comprehend sometimes what all has happened within the past 16 months since I first got sick. I cannot begin to share with you all the changes that we have endured as a family. And yet, as hard as this past year has been on me physically and the mental anguish we've all had to share in, the year has been good to us and it has brought us much closer. All these moments combined have made things less painful.
I know that this year was difficult, and I suspect the next will be harder, but I also believe it will even be better.

'm bck!

2009-08-13T18:49:00.008-06:00

Well, for those of you that follow this blog, you may have noticed that I have had very little to post these days. I am pretty sure that I can attribute most of this to my state of mind. My attention span has really been wandering lately. I've written a few posts, but I haven't found anything I thought worthy of posting. Everything sits in my draft pile and that is as far as they've gone.
I went to see one of my clinic hepatologists for my 6-month check up and after a short review of me and my health he put me on yet another round of medication that I have to take 4 times a day. I am taking an antibiotic to rid myself of dirty poison gathering in my stomach. After my health assessment and talking with Lois and me, the doctor indicated that I was probably experiencing encephalopathy again and that the lactulose wasn't quite doing everything they need it to do. Lois and I were already in full agreement with this diagnosis even before we went to the appointment. We have noticed a big change in my attitude in the past few weeks. When the encephalopathy hits I get real ill-tempered and ornery. It can be very unbecoming.
The ammonia level on my last labs was at 50. The normal range is between 9 - 33. Three months ago I was at 37. I already knew things were not in my favor. Part of the liver process is that a healthy liver will break down and expel poisonous toxins from your body and you will either excrete them by sweating and going to the bathroom. In my case, I have to take many doses of Lactulose to rid myself of the ammonia gathering in my body. If you are living with an unhealthy liver, then the build up of ammonia in the body can make its way to your brain and cause mental confusion, which can cause the night and day reversal effects which often plague me. Severe encephalopathy can even put you in a coma and you can die. In my case, I can often be tempermental. As far as the confusion goes, I have experienced this as well. I will have to think about what I was just doing or about to do. I'll start out talking and then forget what I was talking about. These things bug the heck out of me because nobody wants to lose control. Every so often I will miss taking some of my meds. This irritates me as well because I don't want to count on someone else to take care of these things for me. I am usually very good with my daily regimen, but I sometimes forget about my night doses and Lois will ask me if I've taken them. I know that I'm in trouble when she starts asking if I've taken the Lactulose because that usually means I've been acting like a jerk.
While all these things have been going on, my mood has been somewhat depressed. I don't like this at all because it is a place I'm somewhat familiar with and that scares me. I am really trying with all my might to stay away from the big D.
And I have also noticed bits and pieces of confusion in my writing. I have been writing sentences like this: Today as I passed by a Hot Topic I decided to go inside and do some sightseeing because I thought it might be fun. I noticed that every single person in the store had a piercing either in their ear, nose, eye or navel. Most of them had more than one. That was just with their clothes on. The gal at the register had at least 8 piercings in her left ear and the other guy there had those holes in his ears that were so big you could stick your finger through them. Yikes.
Now, there is nothing wrong with this. But when I type it out some words don't always come out and everything in red disappears: Today as pass by a Hot Topic I ecide to go inside and do soe sightsee because I thought it might fun. I iced that every single pers in the ore had a pierc either in their ear, nose, eye navel. ost more than one. That was just with clothes. The gal at reg had east 8 in left ear and the other there had hose holes in ears big could stick our finger them. Yikes.
YEAH! That's what I thought. WTH? So this is part of the reason why I haven't been posting. Because I sound like a blithering idiot sometimes.

(Translated that says) Be cause I like blither some.

ave a ood day.

Ugh!

2009-07-24T13:59:00.007-06:00

These past two weeks have been really hard on me. I suspect even the medicine I am taking is starting to take second seat to what my body demands. I purge myself with calcium, vitamins and potassium, but none of these things take the pain away. They are just nutrients my body needs. It is getting harder for me to move around and I am constantly exhausted. I have however managed to provide myself with some night time relief as far as my muscle spasms are concerned, but the muscles themselves are constantly sore and I ache. On top of this I have a back ache that is killing me. I think I probably tore a muscle moving furniture. I guess I should go see my regular physician.
Aside from the physical discomfort that I have going on, I think I am mentally wrestling with the biggest dilemma of all. How on earth are we going to afford to pay for my after care drugs if I am unable to get help from the Indian tribe? In the last few months Lois and I have managed to do things I thought virtually impossible. Getting my adoption records opened was one of them. We are now working with the Pasque-Yaqui Indian tribe in Arizona and trying to figure out what steps are next. They tell us this could take months. There are days when I feel as though I don't have a lot of months. On Monday I am getting new labs. I am anxious to see what this reveals.
I am trying to keep a level head about all this, but as my health declines I am starting to worry. No after care drugs means No transplant. This is hard for me to fathom. And all I can see are giant red letters stamped on some insurance forms that say: DENIED: THIS CANDIDATE HAD NO MONEY. Isn't it hard enough already to have to face these odds? Three to One.
This is what they tell you your chances of survival are -- 3 to 1. In the first year, roughly 17,000 people will need a liver transplant and only 6,000 or so will get one. The other two-thirds move into the next year. Of that number one-half of them will be removed from the list for whatever reason. Maybe they have another condition that makes them ineligible to stay on the list. Maybe they have been removed because they are not following the rules. Or perhaps they are no longer candidates because of some other reasons. Or, they have already passed away because it was too late. The other half will then move into the following year if nothing becomes available. This confuses me. They are basically saying of that two-thirds, half will die. So why don't they just say that in the first place? It is really kind of a 50-50 thing from the start.
But anyway, THIS CANDIDATE HAD NO MONEY. How messed up is that?
When I get high enough up on the list what is going to happen? The doctors will be doing their review board and John Henry, Itsy Bitsy and myself will be next in line. But then so and so will say, "We're going to have to scratch out Beaux. He still doesn't have any way to pay for after care. Who's next on the list?" It will be that simple. I will not get the phone call. Well...actually I will. The finance people will call me from time to time and politely ask, "Have you figured out what you're going to do yet?"
And me: "Uh, you mean other than waiting to die, butthead?" I suppose I'll refrain from the sarcastic wit, seeing how they do have the power to knock me entirely off the list. There is nothing better than having my life placed in somebody elses hands. Truly.

The other day I was telling Lois it seemed so odd that I actually had people following me. When I first started this blog it was really just a record. Maybe it would be a good way for me to vent. And I thought that maybe there were others out there that I could talk to who were experiencing the same things that I was. All these things were truths. It has been really good for me and I have learned many things about this illness. I have also met many people in the blogging community and people who I correspond with by e-mail. It occurred to me that I have never said "Thank You." I love that people e-mail me and leave me comments. It lights up my day. As hard as things have been, I find comfort in a single sentence that just says, "Hello" or "Take Good Care." These things bring a smile to my face and sometimes tears, but they are a welcome and a blessing to me. So, I want to share that with you all now that it is on my mind. I am truly a blessed man. Thank you.

A Little Relief

2009-07-08T01:32:00.000-06:00

I am now taking two pills to help control my muscle cramps. Not two different medicines, but a double dose. My transplant coordinator asked me the other day if the extra dose was helping me at all. I told her that I was still having problems and that sometimes I still woke up in the night with muscle spasms. We have already boosted my potassium intake and my calcium to help make sure I don't have an electrolyte imbalance. But even that hasn't helped. I have also read that most people going through liver failure have trouble with cramps until after transplant and then they go away.
The other day I got a terrible cramp and my wife had a suggestion. "Maybe you should run one of those body massagers over your muscles and see if that helps." We found a massager and the next time it happened I ran it across my calf and in less than 15 seconds the cramp had started to dissipate until it stopped all together. Later that night after I went to bed I was awakened by one of my awful night time spasms and I used the massager. It took only seconds for it to go away. I am not sure if this is really working yet, but it does seem to be doing the trick.
I am really psyched about this new discovery that Lois has come up with and I am hoping that it is a solution to my problem. Before this, it usually took several minutes for my cramps to go away. Sometimes I would have to wake up and walk around and I'd lose quite a bit of sleep because of them. But now they are gone within seconds and I can easily fall back to sleep.
If there is anyone else out there who is reading my blog and have cramping issues, then I strongly urge you to give it a shot. It sure can't hurt.

How I Feel

2009-07-02T21:45:00.001-06:00

I keep forgetting how ill I am. I have been sick now for more than 3 weeks and it just won't let go. My immune system is shot. Compromised. I've had a runny nose, a scratch in my throat and a never-ending cough. These pale in comparison to how I generally feel.
When I remove a bandaid it will sometimes tear my skin.
At night when I sleep I will sometimes get the worst cramps ever and I whimper in agony.
If I bump myself I will bruise.
I am constantly tired and restless, and without my medication I cannot sleep or stay awake.
I make 173 trips to the bathroom each day.
My jaw hurts.
My eyes constantly water.
It gets harder and harder each day to move, bend over, breathe, get up, sit down, push, pull and sometimes even talk. I lose my voice because of my shortness of breath.
My tongue is yellow white blue or green and I am sure the foul taste I carry in my mouth is just as foul outside of me as well as in. I will turn my head when I talk to you. I will hold my breath. I dare not look at you for fear of shame. I curse to myself when you leave the room.
I am very sensitive. Tears swell in my eyes when I hear about the little boy who fell in the river. I will say let's go look for him. Off we go to search the black muddy river.
I will cry when you leave the room. I will cry when you enter. But I will also laugh.
I will make fun of myself. I will make fun of you.
I will forget.
Sometimes I will ask for permission. "Can I have that?"And sometimes I will demand. "Give me that!"
I don't know why.
I get bloody noses.
I will break out in a cold sweat. A minute later I am hot as hell. I will feel like passing out. I don't.
These are just some of the things I go through each day. Some of the things are just too personal or graphic for me to express.
These symptoms alone are nothing. I could handle one or two of them together. All at once it is a bit overwhelming. An onslaught.
Normally I hesitate to speak like this -- out loud -- but something happened.

This week a fellow blogger passed away from liver failure.
Mark Emmert was one of the first people to ever contact me who was going through liver failure. Sadly though, our correspondence consisted of only two e-mails. Mark wrote me the first time to ask me permission to read my blog. His second e-mail was to tell me that he had been busy and wasn't feeling well. We never communicated with each other again, but I didn't lose touch with him. I was in contact with his family. I am deeply saddened by his passing and my condolences go out to his friends and family.

They're Winners!

2009-06-28T17:55:00.008-06:00

After 6 days, 16 hours and 56 minutes, the Liverators crossed the finish line in Annapolis yesterday morning and took 4th place. As much interest that I had in this race, I didn't have a chance to follow it on a daily basis as I would have liked too because we were in Yellowstone for a few days. When we got back it was time to go back to work.
What little I got to read wasn't very much and I haven't looked at any of the video shots yet. I am in great awe of these men. I wonder if John Marino had any idea of what would come from his vision some 27 years ago. He was determined to do something different and he wanted it to be big. An annual race that has lasted 27 years was probably more than he expected. And while the Race Across America has always been an endurance race, it has also been used as vehicle for fundraisers by more than half its racers.
The Race Across America is not a stage race. You start on the west coast and finish on the east coast when you cross the finish line. Whether you are participating in a two-man team, a four-man team or the eight-man team, you only rest in shifts.
For some final statistics look
HERE. Great Job Team Donate Life (TDL) Liverators.

I'm Not Scared

2009-06-25T20:56:00.004-06:00

Last week my transplant coordinator called me to see how I was doing with some of my new meds and then she said that she wanted me to go in and have an MRI to see about a shadow they picked up on a CT scan a couple of months ago. The shadow was dismissed back then as "It's probably nothing to worry about." and "I'm going to have a doctor look at the results." Months went by and I had all but forgotten about it until she called. I think what surprised me the most was that she was asking for an MRI now after all this time.
Now I have never had an MRI before and all that I could think about was all the awful horror movies I've watched over the years -- the ones where the person goes into the machine and doesn't come out alive, and if they do they are somewhat fragged. Plus I have heard all about the claustrophobia and the "OMG they are so damn loud".
And oh yes, the stories of the giant magnet sucking in all things metal. Looking forward to all this apprehension I must have stared at my underwear for a good minute before I put them on. I turned them over in my hands a couple of times wondering if perhaps there was some metal thread buried in the seams somewhere that I was unaware of. Surely they wouldn't have used metal thread? I thought to myself. Not really, would they? Resigned to the fact that that was just too farfetched I finally put them on. I will just ask the tech, he will probably know.
When Lois and I got to the hospital we were told that they were going to be running an IV for a contrast scan and that I had to fill out a couple of forms. Apparently it takes four forms because there is not enough room on a 8 1/2 x 11 sheet of paper to check off that many Yes and No questions and to make it even harder you have to sign the waiver dismissing them for anything that might go wrong. So of course by the time I go off to get undressed I have forgotten all about my underwear question because now I'm suddenly thinking about all those horror movies.

So I finally enter the room to see this machine and I get on the table and they start explaining all the things that will be happening. The first thing they ask me is if I am claustrophobic. I'm not really sure, I say. Well then, just close your eyes and you should be all right. "Are you afraid of needles?" I think it is a little late for that one but I answer anyway. "Yes, but I get shots all the time so I guess it doesn't matter." They explain to me that they are going to have me hold my breath while they take pictures and then let it out when the voice tells me to. "Okay."
Now I had done some preparing for this so I thought this should go pretty smoothly. I finally resolved that there was no such thing as metal thread and that science fiction is just that -- science fiction. I'm not going to turn into hamburger. At least I had hoped not.
And then they roll me into the machine and they place some earplugs in my ears and ask me if I can hear them. I looked at the nurse and I nod. "You're going to have to speak when you get in there." I nod again.
I am in there for no more than a minute when I realize I have to go to the bathroom. The nurse behind the wall tells me that this will take 25 minutes. I'm thinking to myself I prepared for this. I just asked to use the the bathroom before I came in here. So I'm lying there listening to the sounds of pings and low firestation blares and all I can think about is going to the bathroom. The recording says: "Breathe in...hold it...(tick-tick-tick)...relax."
The only thing I could think of was what my brother-in-law told me to do. "Just take a nap while you're in there. It's the best thing you can do."

TDL Liverators update

2009-06-24T21:18:00.005-06:00

Team Donate Life (TDL) Liverators hit Timestation #32 in Jefferson City, MO., at 19:04:00 tonight. A distance of 1911.70 miles from the start. I read a couple of blogs from the team members and they are all exhausted and sore. The crews are excited and full of adrenaline. TDL Give Hope arrived a couple of hours earlier at Timestation #32 at 17:05:00 and proceeded to Timestation #33 racing through severe heat and into extreme weather with thunder and lightning storms. Temperatures have been brutal and reaching into the 90's with almost 100% humidity. I would suspect the thunderstorm would have felt nice. They were also faced with some very strong crosswinds throughout the day that would have been nasty.
I missed out on the first few days but all the teams seem to be doing great. There are 8 eight man teams and the TDL Liverators are in 4th place. I have been pretty excited about this race and I am hoping all the racers do well.

Pedal power

2009-06-19T00:04:00.009-06:00

In 1982, John Marino organized one of the longest endurance bike races in America. It started out at the Santa Monica pier in California and ended in front of the Empire State Building in New York City. It was called The Great American Bike Race. There were four participants that first year: Lon Halderman, John Howard, Michael Shermer and John Marino. Halderman won the race in 9d 20h 2m. Since then, the race has evolved into what is now known as the Race Across America. It is one of the most challenging races in the world. Over the years the race has grown in participants and several divisions.

Team Donate Life has played a big part in the Race Across America for a number of years now and has used its participation to raise funds for liver transplants, liver disease awareness and organ donation awareness. The other day I ran across an article in a local newspaper and I saw that two of my doctors (one of them has recently moved to the University of Utah Hospital) are riding for Team Donate Life. They are called the Liverators. Dr. Terry Box and Dr. Ray Thomason have both seen me in clinic over the past year. After reading a little about Team Donate Life and the Race Across America I was very humbled by Terry Box's story and filled with a sense of inspiration. I knew early on that Dr. Box had had his own liver transplant and for that very reason I felt comfortable in knowing that I had a doctor who had actually experienced his own tranplant. What I didn't know was some of Dr. Box's back story until I read this article. At the time I felt lucky to have a doctor who had been through this operation. It was, after all, as hands-on as you can get for being a transplant surgeon. That gave me much comfort when I had questions of my own.

The Race Across America begins in Oceanside, California on June 20 and ends in Annapolis, Maryland. about a week later.

Some Changes

2009-06-10T04:00:00.000-06:00

For over a year now I have been waiting to get sick. I am often left frustrated when I find my MELD score hasn't moved at all when I get my labs drawn. As I have said before, these numbers will ultimately determine my placement on The List.
Today (yesterday) I sent an e-mail to my transplant coordinator asking about a lab test they wanted done to check my kidney functions. I got an e-mail back telling me to just go get my labs drawn. So I did that. I received another e-mail in the evening telling me my kidneys functions were okay and that my MELD was at 13.
It seems odd that after so long things are beginning to change. Knowing that my numbers have started to move is almost too hard for me fathom after all this time. And even though they've only crept up a little; from an 11 to 13, it shows that something is starting to happen. Once again I find myself torn between two directions. A part of me wants to stay suspended, while another wants to go forward. But I guess I don't really have any control over that. I am still doing well for now. That counts for a lot.

What's new?

2009-06-05T21:05:00.002-06:00

The last time I had my MELD score checked it was still eleven. On the scale of 6 to 40 that is relatively low. I continue to have shortness of breath despite the water pills I'm taking. But I weigh myself every so often at home and at work and I have dropped a couple of pounds. I went to see my dermatologist yesterday and we told him that we were going to have to stop taking the Enbrel due to our insurance not covering it. He said that he would see what he could do about continuing the treatment because it seemed important to keep me healthy and to keep my psorisis at bay. I was so looking forward to not receiving anymore shots.
I've been really exhausted these past few days and now I have a cold. Tired + having a cold = Miserable.
Now that the season has changed I've taken to riding the bike around the neighborhood. The other day I did 3 or 4 miles and I cramped up real bad later in the evening. I'm going to have to watch that. I was riding in low gear trying to work my muscles. I'm gonna have to kick it down a notch until I get used to it. The exercise bike in the corner of the living room just doesn't do it. My cramps have gotten a lot better though since I started taking the new medication.
We are still waiting to hear from Arizona about the adoption records. It has been a couple of weeks now. We are getting anxious. We are hoping that this is a good sign; that maybe the waiting is because they are looking. We haven't really thought of any other options yet and are waiting to see what happens with our last petition to the other court. After that, if there is no news then we will try something else.
Sometimes I wonder what is worse. Waiting to get sick or waiting on news from the court. Or in this case the lack of news.

The Long Weekend

2009-05-23T15:58:00.010-06:00

I was just now thinking about the first time when Lois and I went to visit my transplant clinic. It was May 22nd and it was on a Thursday. It was a year and a day ago. Everything was still so new to us then. I was in the process of switching transplant clinics and we were just getting familiar with the new doctors and transplant coordinator. Lois was asking the doctor a bunch of questions. She had just asked him how many people were on the waiting list in our region. I remember the doctor reaching into the upper left hand pocket of his overcoat and fumbling with a small notebook and a pen and some glasses until he found what he was looking for -- it was a 4 x 8 sheet with dozens of names and numbers on it. I remember thinking how tiny it was. The doctor held it up and you could see everyone's blood type. On one side of the list he had scribbled all of the O's. O positives and negatives. On the other side there were A's and B's and AB's. He was explaining to us how nothing could be certain. People were put on the list and taken off of it all the time. The only thing constant about it was that it was always changing.

Somehow the conversation had changed and we were talking about the doctor rotations and who was on-call that weekend. It was his weekend. The Long Weekend he said. At first I didn't get it until my wife mumbled something. I thought he was talking about working a four-day weekend. But that wasn't exactly what he was saying, either. He was saying that this was The Long Weekend. One of them. And then I understood. This was That weekend. The one where people go away and don't come back. Where the interstate can be a very dangerous place to be. Where inattentive or impaired drivers can change the mortality rate. He was saying that this could be a very busy weekend.

I remember feeling a shiver run down my spine as that realization hit me. For some people a weekend like this could be a good thing. A new lease on life. And for other people it could be devastating. So plainly put, this information had me wiping tears away from my eyes.

Be truly safe everyone.

Taking Things in Perspective

2009-05-19T17:34:00.008-06:00

This drug may cause drowsiness, dizziness, blurred vision, headaches, itching, running nose, watery eyes, bleeding, diarrhea, muscle pain or cramps, vomiting, restlessness, dry mouth, unusual thirst, unusual tiredness or weakness, or rapid or irregular heartbeat.

Most of us have heard these symptoms being mentioned on T.V. ads for medicines during the evening hours. They are listed as cautions and side effects on pill bottles. Do not take this medication if you have Blah Blah Blah Blah Blah Blah Blah. Ironically though, most people going through liver failure experience all these effects even without taking medication. That is because they are some of the first indicators of liver failure. Even as our doctors prescribe new drugs to help us feel better and treat our illness, we are never entirely rid of any of these symptoms. While one drug may be designed to help us with tiredness, another may be designed to cause diarrhea. No matter what combination of drug therapy our doctors use, we will continue to present with most or all of these symptoms as we wait for a liver transplant.

I have been listed now for almost 9 months. Even though I continue to slide down hill and I wait for my health to deteriorate, I know the drugs I am on are working. The stomach aches I used to have were more frequent, but they have subsided somewhat. That is because I eat better and I have cut back on the sodium. I thank my wife for seeing to that. The night and day reversal has really changed a lot. I am still very tired throughout the day, but I don't stay up until 3 or 4 in the morning anymore. That means the lactulose is working and I'm doing my job by taking it. I've also had to take a little responsibility on my part by making myself go to bed at a normal hour. I used to take a sleeping pill, but now I am on a muscle relaxer that I take for my cramps and it works like a sleeping pill.

My biggest worry was exercise. I didn't feel like I was getting enough. The other day I wore a pedometer to work to see just how active I was during the day. I read the average steps per day run between 5,000 to 10,000 steps. Most people don't even hit 10,000. I hit over 20,500 on a fairly busy day. My slowest days are around 16,500 and 18,000. I have still not had a busy day at work yet. I suspect I can hit around 23,500 to 25,000 steps on a good active day. That made me feel pretty good about the bike I've been ignoring that's sitting in the corner of my living room. I still need to try and work on exercising on my days off. Taking all this into account and the fact that I have my bad days, I think I'm doing pretty good still. But I am definitely moving slower and the muscle mass is slowly wasting. And it is getting harder to take a deep breath.

Feeling healthy physically is one thing, but feeling healthy mentally and spiritually is just as important. It is these last two things that I must never forget. Especially the last.

Another Anniversary

2009-05-04T19:47:00.001-06:00

I have been Smoke Free for 1 year!

You Can't Have Just One (They Melt in your Stomach, Not in your Mouth)

2009-04-28T12:04:00.003-06:00

This is my new regimen. I am now taking the ten small pills in the pill box each day along with the other four horse pills that I can't fit in the box. Plus I get to swig down the stuff in the brown bottle ~~2 to 3 times~~ once a day. Thankfully I only have to take the shot once a week and I only have 6 more shots left after tonight.
Today I had another endoscopy and they found some minimal bleeding. I talked to the doctor about my ascites and he upped my dosage of the water pills. Before we even start thinking about a paracentesis procedure or the TIPS we are going to stay on the diuretics. He also upped my beta blocker because I have portal hypertension symptoms that can cause more bleeding. The beta blocker worries me just a little because any sudden movements or getting up too fast can actually lay you down real fast. I will just have to keep that in mind when I am rushing to put out any fires. Which I occasionally do. Because sometimes during my day job I have to put on my cloak and pretend I am superman. I'm just saying...
Yesterday I had a contrast CT scan and my Bubble Echo Cardio thingamajig and I am waiting to hear how that went. Plus they ended up taking more labs to check my MELD score. It seems that when they update your transplant status they don't want to use your labs from two weeks ago. They want them fresh from two days ago.
I am really feeling good with this transplant center. Everyone is very nice and helpful and willing to talk about any of the issues I bring up. Or it could be that I am loopy and under the influence of anesthesia and I am just making this up. Either way I win.

It Dropped Like a Rock

2009-04-26T13:28:00.001-06:00

This has been a horrible week. The new meds I am taking are leaving me incredibly tired and I keep waking up with the residue of a terrible hangover and headaches in the morning. On Friday afternoon while at work I wasn't feeling so good so I decided to take a break. I sat down at my computer to do some other work I had and I started feeling extremely tired. My head must have been bouncing up and down like a bobblehead doll as I jerked to stay awake. Finally I decided to move around the plant and go see what everyone else was up to. That was a mistake. As I started moving around I realized what I really needed was to sit down. I suddenly had the chills and I was freezing to death. When I got back to my department I turned on my heater and huddled in front of it for ten minutes. My arms were tingling and they felt like they were going numb. At some point I figured out that none of it was normal and I kept waiting for it to subside. I kept checking for a pulse but I couldn't find one. And then I suddenly got really hungry and started eating my lunch as fast as I could. I was barely catching my breath before I started shoveling something else down.
I have never had something like this happen before so I wasn't sure what was going on. Plus I think I was a little confused during the whole episode. I have a key to the first responder medicine cabinet which is located in my department. Instead of grabbing the electronic Mabis blood pressure cuff and checking my vitals, I only thought about checking my vitals. Instead of calling Kris from upstairs (our first responder), I only thought about calling Kris. I knew better, but I wasn't reacting with my better judgment. Eventually it ended as quickly as it had started. It lasted about 40 minutes. It took me most of the afternoon to bounce back before I felt okay. I called my transplant coordinator later and explained to her what happened and she sounded a little dumbfounded. None of the new drugs I am on should have triggered my circulation to drop like it did. The response was to just keep an eye on it. Another thought was to knock back my beta blocker in dosage. But this is something I am not at all comfortable with since portal hypertension was one of the main reasons I started taking the beta blocker. It was also what landed me in the hospital in the first place.

Tuesdays Child...

2009-04-21T11:46:00.000-06:00

Finally spring is here

Where do we go from here ? ¿ ?

2009-04-18T12:58:00.000-06:00

It turns out that because I am an American Indian I may be entitled to help paying for drugs that I will need post-op. Drugs that I will need for the rest of my life. These anti-rejection drugs can be very expensive and cost many thousands of dollars a year. Our insurance won't pay for them.
When Lois and I got married we compared our work insurance benefits and discovered hers were definitely a lot better than mine. I have been on her plan ever since. When we discovered that I was going to need to have a transplant we were happy to find that her plan would actually cover the operation. We also learned that some of the drugs I would need for aftercare would also be covered, but not all of them. Some of them are going to end up costing us a lot.
The other day I got a phone call from the transplant center informing us about our insurance benefits and what they would cover. A drug called Prograf is the biggy. Prograf is designed to lower the body's immune system. While your immune system is there to fight infection, it will also fight against a new transplanted organ such as a kidney or liver because it thinks the body is being invaded. Prograf, along with other drugs, are used to help fight against organ transplant rejection. Apparently I need to find a way to pay for this immunosuppression drug before I can get a transplant. Or else ¿ ? ¿

The transplant center is doing its best and willing to do what it takes to help us out in exploring all our options. But now we have reached an impass. The idea to look into Indian benefits was actually the social worker's thought. A good one. Buuttt... I was adopted and I have no ties with my Indian tribe. I know that I am a Yaqui Indian because my parents said so. They adopted three of us -- two Yaquis and a Pima while they lived in Phoenix. But my case is no different than any other adoptee's. When the adoption is finalized, they reissue a birth certificate that shows the adoptive parents as the natural parents. There's nothing on it that says, adopted.
So I must first somehow prove that I was adopted and then find a way to have my adoption records opened so that I can prove it to the tribal council. And then I might be eligible for Indian funds.Years ago I did a little research on trying to find my natural parents. I wrote a letter to ALMA Society (Adoptee's Liberty Movement Association) and they responded by telling me there might be a loophole in finding my parents because I was Native American.

Adoptees who are of American Indian heritage can learn their original names and names of their birth parents by taking advantage of the Indian Child Welfare Act of 1977.

This law was made for a number of reasons, but the one that is of most importance to me is that my records can supposedly be opened due to genetic and medical reasons. It is a federal law. In my case I am not so much interested in finding my natural parents but rather looking for medical history and acknowledgement from the tribe so that I can apply for grant money so I can show that we can get the Prograf. Without that, there will be no transplant.
Anybody know any adoption law? We're stumped.

Sniff, sniff

2009-04-16T17:32:00.000-06:00

I went to see my regular doctor today and he had my new lab results in. I wanted so much to ask him to call up the UNOS website so that we could plug in my new numbers to find out what my new MELD score was but, because I had already dropped in without making an appointment I thought that might be rude of me. He had asked me the other day to come back in a couple of days, but I had no idea that I was supposed to re-schedule. I don't think he seemed to mind, but the nurses station didn't seem to be too happy.
We discussed the breathing problems I have been having and the new medication he prescribed. The good news was that I have no fluid in my lungs. We pretty much determined this on Monday when I went in to see him. But the one thing that my chest x-rays showed was that there was some back pressure creating some blockage. This is probably what has been causing me all my problems. The new meds are diuretics ~~that should help me out~~. I know they are working.
We left and dropped off yet another prescription at the drug store for some potassium and then went home. I ran to my computer and booted it up while I waited ~~patiently~~ impatiently for it to come online. I called up the UNOS site and plugged in my new numbers and my MELD had dropped a number. I was kind of disappointed to say the least. I had actually thought if it had changed it would of at least gone the other way. I guess this is a good thing and I should look at it with the opportunity to get more things in our lives situated before things do start moving in the other direction. I still have more test at the end of the month and my transplant coordinator threw in another one. It's a bubble echo heart thingamajig.
That is all.