Staples out, steri strips on!

They took the staples out yesterday, though there are still a couple of raw spots. The surgeons said on paper he looks great, though they're still adjusting the anti-rejection meds. He's still in quite a bit of pain and the tremors are astonishing. Apparently, that happens with too much anti-rejection medicine, though he's on quite a low dose (The wallet is grateful).
He's lost a lot of weight he really didn't have to lose. With the major incision and no appetite, feeding him is a challenge. Sigh. But we're working on it. And he remains the loveliest of people. So thrilled that he's moved from "dying" to "recovering from major surgery."
One funny side effect of all this: He now babbles in his sleep. The tremors and the talking make for quite a night's sleep. Not.
Life is good.

Food and trembling

We have settled into a very unroutine (for us) routine. Mondays, Wednesdays and Fridays, he has to be at the lab at 7 a.m. for a blood draw so they can see what his antirejection drug levels are at their very lowest point. After that, he takes the Prograf and a dozen other pills. Every day, so far, we've been called with an adjustment before the evening dose. He consistently gets too much. The result of that is headaches (diminishing) and trembling that is unbelievable. It shakes the bed as much as a small child bouncing on it would. I can't even describe it. Wow. That's a sign of too much drug and reaction to it -- both will diminish over time, we're told. But it's startling. And that many tremors also burns a lot of calories, so his needs as he heals are high. Just to maintain his weight (and we're not, he's losing) requires about 3600 calories a day. Yikes. That's a lot of food to stuff down a man who has no appetite. Fortunately, I'm not feeling called upon to match him bite for bite.
When he was diagnosed, I instantly packed on 30 pounds. My doctor said they were stress pounds — "your body thinks it's winter and that's what it calculates it needs to survive" — and would not leave until he got a transplant. I snickered. The week after transplant, I was within 7 pounds of my pre-diagnosis weight. It's odd to drop the equivalent of a large bag of potatoes without doing anything. Sadly, though, he's dropping weight, too, which is a not a good thing for getting healthy in his case.
We went for a walk today. About a half mile or better. It taxed him; sidewalks are different than hospital hallways. But he did it willingly.
And spring is blooming, which matches what's in my heart.
New life.
Cheers,
Lo

Woot!

We are home! There are no words to describe being home, on the other side of the transplant. Yay!
And the cat, who has been glaring at me and avoiding me since Beaux was called to the hospital, is now curled again at my side, my apparent best friend.
It appears I was the main suspect in the homeowner's disappearance. The cat suspected foul play.
Beaux's tired, but settled in nicely on his reclining couch, tickling Tiger with his fingertips. We have some challenges ahead, but this just feels marvelous to me.
This is a good day. March might even become my favorite month. And the hyacinths are blooming in the front yard!

Still here

Not much new. They were going to do a biopsy of the liver -- were at the stage of discharging the little "gun" that takes a sliver of liver — when his blood clotting factors decided to go therapeutic. That meant it could bleed, so they scrubbed the biopsy.
Immediately, the blood INR dropped back into the sub-therapeutic range. Don't even know what to make of that. It's very odd. So we're still hanging out in the hospital. Waiting and wondering.
It's beautiful outside and I'm pining to get out in the garden. Maybe I'll take up gardening here.
Beaux's feeling a little stronger every day. I think happiness will come with being home.

Still hanging out in 1021

We're still here at Intermountain, waiting for the all-clear so we can go home. They are having a hard time getting his blood thinner in therapeutic range. The pharm student said it looks like the new liver might be a little coumadin resistant. And they did a CT and found a "small" infection in the liver transplant site in his abdomen. So he's on antibiotics. Glad they found that before we went home.
Still sore, still tired, still thrilled to be here on the back side of the transplant process. We appreciate all the love and caring that have been expressed in person and online. We've had a great team of doctors and that certainly helps.
On a less medical note, the animals are convinced I gave Beaux away, I think. The big fat cat, Tiger, who used to love me more than life, glares at me balefully when I wander home. You can hear the wheels turn in his head: Brought in that huge puppy, got a new kitten, shipped Daddy off somewhere unknown. What is her deal?
Beaux's getting stronger, though, and that's all that matters.

Yo-yo

It has been a bit up and down the last few days. Beaux has been plagued by a couple of mystery headaches that are likely caused by meds, but they are not quite sure what. This morning, though, after that was controlled, he made five laps around the floor, which is equal to a half mile. This time, he did it without a walker.

He looks great, though it still hurts. And his new liver is doing great. I lack the words to express my gratitude to the donor family that in its grief saved my husband. I hear rumors of a new transplant later today and will pray and hope for those families as well.

Ouch and yum

I took a day off yesterday from updates. Sorry. Lots to do. We had some drug education time with the pharmacy team to prepare us for the medicinal arsenal we'll be employing in the very near future.
Beaux's still doing very well. He looks amazing, although he feels quite miserable. It's hard to define the changes, but he looks like himself again. Still, the pain is quite severe and he's battling a little nausea.
He said especially to thank you for all the nice notes and encouragement. It buoys him.
Today, they're working on changing his pain management from pump to pills and getting him on more solid food. Over the last week, he has had a grand total of two juices, two jellos and one lovely Italian ice. And all the ice chips he can fit on the head of a miniscule spoon.
More later, friends,
Lo

Ouch!

Sunday was a rough day, with lots of pain. He did his two laps around the floor, slowly, but spent most of the day being pretty quiet and a bit grim-faced. Still, his numbers are astonishingly good. The liver is functioning very well and no one can be surprised that it hurts at this stage.
Spent the night with alarms going off (he's on a million medications right now, so it makes sense one of them was always running out). I got pretty good at staggering to his bedside, pushing the nurse's button and stumbling back to bed.
This morning the weather is beautiful, he's already had his first walk and he's sitting in the chair. It's going to be a more upbeat day. I can see that already.
What a gift!

Leaving ICU

He made two laps around the shock trauma- unit and to celebrate, the surgeon -signed orders to send him to a regular room on the transplant floor. So the nurse has been pulling lines and he has a new one that replaces two major lines in his neck. They are very impressed with the liver. His enzymes are normal and, unlike everyone at this stage, he doesn't need insulin because the liver is doing all its work. All I can say is my jaw hurts from grinning. This has been the best week ever. More later.

We have a new liver

I will keep this short and sweet because I'm tired.
The backup call turned into the real deal at 2 p.m. Thursday. And 12 hours later, I stood in the ICU and looked at my beautiful, battered sleeping husband, who had just undergone a liver transplant.
It's early days and it would be presumptive to assume clear sailing. But he now has a shot at life.
I cannot express how sorry I am for the donor's family, whoever they are. And how much I will always thank God for their generosity.
Lois

At the hospital waiting

We got the back-up call last night a bit after midnight. I'm stunned how calm Beaux was, asking where to go and when to get there. Now we're waiting to see if the liver will go to its intended recipient or if we get it instead.
We don't begrudge the intended recipient at all. It would be really, really difficult to get that call and then go to the hospital and have the liver go to someone else. We'll wait our turn, if it would please just hurry.
It has been an interesting dress rehearsal. Lots of tests -- blood, x-ray, heart monitor -- and so far we're still in the game, which bodes well for when the real day comes. Please let it be soon.
We've met all the surgeons now, as well.
Lois

Dreaming of Anesthesia

   I haven't fired up my laptop for more than a week. Thank you to those who left emails and comments, they always make me feel good.
   I have been feeling somewhat disconnected these last two weeks. I had my MELD done last week and I jumped up from 18 to 25. This week I went up another point. I can't even begin to describe the emotions I am going through. It has been more than three and a half years since this started. I am tired and I am sore and I am overwhelmed each day with this and that. It is likely that I'll get the call sometime soon if my numbers continue to stay above 25.
   I am crossing my fingers and waiting.

Vulnerble

   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

   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

   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.

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

    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

   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?

    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.