Really?

    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)

   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

   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

   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

   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

   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

   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...

   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

   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

   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

   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

   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

   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

   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

   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

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

   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

   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

   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

   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

   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.

   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

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?

   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

   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

   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

   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

   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

   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

   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

   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)

   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!

   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

   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

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

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