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