Sunday, April 15, 2012

Recovery is Hard

Before the transplant we thought that the actually physical recovery immediately after the surgery would be the hardest thing that Jay would face, but he blew through that with no problem at all.  He was discharged four days after the transplant and everything looked pretty peachy.

Our Transplant Notebook warned us that there would be a honeymoon period, and then something would occur that meant the honeymoon was over.  Maybe further surgery would be needed, maybe there would be another hospital admission for IV steroids if it appeared that the body was rejecting the liver.  In our case, it was medication-induced psychosis.  

The day that he was admitted for the latter, his labs looked a little suspicious.  His WBC count was higher than it had ever been, two of his liver enzymes were pretty high, and his Total Bilirubin had increased a bit.  Whether his labs were related to his psychosis we'll never know, but we do know that things went a bit wonky.  They normalized while he was in the hospital, and then they were wonky again the Monday following his second discharge.  That was the Monday when the nurse called to tell us to be prepared for a liver biopsy the next Wednesday.

There wasn't much we could do about the biopsy, but we decided that we needed to be much more intentional about Jay getting quality rest.  We implemented a strict afternoon naptime and a "no entertaining after 8:00pm" policy.  By Wednesday Jay's labs had improved so significantly that the biopsy was cancelled.  

Jay feels better than he's felt in years and wants to take advantage of every moment he has, but even in the midst of that we've learned the hard way the necessity of focusing solely on only healing activities.  Fun stuff like walking, eating out, and visiting with friends come only after an excess of naps and nighttime sleep.  

Who knows if the improved labs had anything to do with intentional rest, but we figured it didn't hurt and that it was a practice we needed to continue.

It's surprising to me how much we have to concentrate on creating an environment and lifestyle that are conducive to recovery.  I would have thought that once he was out of the hospital and at home the rest would be easy.  But every time we see the surgeon he says, "I had the easy part.  You have the hard part.  Healing is the hard part."  I wouldn't ever want the responsibility of transplanting an organ, but there is a sense in which the long-term intentionality involved in recovery is extremely difficult.  Everything else is secondary to the healing environment and healing lifestyle.  

Who knew?

Saturday, April 14, 2012

The Long Road

I have a hard time believing that Jay's transplant was only 3 weeks and 4 days ago.  When the nurse called yesterday afternoon to give us Jay's medication adjustments, she asked how he was.  I told her that he was great; he had just gotten up from a nap and was out for a walk.  She sounded a little bit shocked. 

"Is his, um, mind OK?"

I assured her that it was, and that I would not have allowed him out by himself if I wasn't certain that he was going to be fine.  The surgeon had told us at clinic on Wednesday that Jay could be unsupervised for a few hours at a time, and I have been taking that very seriously.  

Post-transplant life has been an amazing learning curve for us.  While Jay's initial recovery (read: discharged from the hospital four days after his transplant) was impressive, there is still an amazing amount of tweaking that the surgeons have to do to get his medications exactly the way they want them.  The idea is to have him on exactly the right amount of medication to ensure that his body has enough leeway to work on its own while keeping it from seeing the new liver as an enemy to be destroyed.  And that's a really tricky business.  

In order to do that, Jay has to have labs drawn every Monday, Wednesday, and Friday.  And those labs have to be drawn at Vanderbilt so that the transplant team can look at them immediately and make medication adjustments the same day.  On Mondays and Fridays we show up at the hospital at 8:00 for the blood draw, we're done by 8:15, and we hear from the team sometime in the late morning or early afternoon. On Wednesdays we show up at the hospital a little before 8:00 for the blood draw and then see the surgeon (along with the Nurse Practitioner).  They all look at Jay's wound, poke around his belly, listen to the details about how Jay's feeling and what his concerns are, tell him how amazing he is, and then tell us that they're not ready for him to be too far away yet.  

This always comes as a shock to me.  I mean, he's going on walks around downtown by himself, we went to the park the other day with friends, his appetite is great.   But then I remember that he and his liver have only been together less than a month.  Regardless of how well he's doing, the surgeon reminds me, he (the surgeon) has no idea what to expect.  We'd like to think that it's smooth sailing, but no one really knows. "If I knew would could go wrong," the surgeon said, "I'd take care of it right now and send you home."

Every single body experiences a transplant differently.  The 60-something-year-old guy who got his transplant two days after Jay has already been sent home.  That's the drawback of being young and healthy, and of having a protracted illness... Jay has a bangin' immune system that wants to fight back against the new organ.  On the other hand, his body has had a long time to deteriorate.  That makes this a tedious process, but probably no more tedious than it is for anyone else.  Because all the surgeons can do is install the organ well and then wait for the recipient's body to respond.  All any of us can do is wait.  

Wednesday, April 11, 2012

Because It's Not All Bad

I've gained at least six pounds since Jay's transplant.  For several reasons.  One is that there's only so much hospital food that tastes good, and those yogurt parfaits aren't exactly low calorie.  The second is that I am in food heaven.  You can't swing a dead cat around here (either at the hospital or downtown) without hitting someplace unbelievably tasty to eat.  So let's go in chronological order:

  1. San Antonio Taco Company (Satco, if you're in the know).  There are two locations.  One is downtown and one is a few blocks from Vanderbilt Hospital.  The chips and queso will make you want to smack someone, and I never found a single taco that I didn't want to clone and take home with me.  The atmosphere is quite lovely on the porch.
  2. The Mellow Mushroom.  Even the gluten-free pizza crust was fantastic.  Sarah and I got half Hawaiian and half Mega Veggie.  It was, in fact, a pretty mellow place and I think I found a new favorite place for pizza.
  3. Noshville.  You really have to make sure that your partner isn't experiencing a psychotic break when you eat at Noshville.  Wait.  You really have to make sure your partner isn't experiencing a psychotic break PERIOD.  But even if he is, the food will still be great.  I got a breakfast bowl once, but every other time I've gone I've gotten the reuben.  There's no reason to get anything else.  
  4. Puckett's Grocery.  I went to the one in Franklin with the senior adults from church, so I was thrilled to know that there was another one a block from our apartment.  I usually get the 4-veggie plate, but I also recently got the Fried Green Tomato BLT.  Yum!  I don't think it's possible to go wrong here.
  5. The Old Spaghetti Factory.  I'm pretty sure I'll have to turn in my FOODIE badge since I only discovered in the past week that Old Spaghetti Factory is a chain.  I just never would have guessed.  It was the go-to place for big occasions when I was growing up.  I remember celebrating a birthday with my parents in the red trolley.  The discovery was disappointing, but it didn't stop me from eating there.  
  6. Taco Mamacita.  The best part is the "two tacos and one side" deal.  Or maybe the fact that I have documented proof that Taylor Swift dines there.  Again, I've eaten there three times and have never been disappointed with a single bite that I put in my mouth.
  7. Burger Up.  Everything comes from local farms and it is unbelievable.  On the day that we went the special was the Greek Lamb Burger.  It was, without a doubt, the best burger I've ever eaten.  I almost ordered another one.  Next door is Las Paletas, a gourmet popsicle store.  I'm glad we didn't pass that one.  I had chocolate chili and Jay had Mexican hot chocolate.  We were both very happy.
  8. Riverview Marina.  My dad called up on Friday with a hankering for catfish on the river.  So we went.  It was a beautiful drive and a beautiful day to sit and look at the water.  And the catfish was wonderful.
  9. Edley's.  Jereme brought this to us one night.  The turkey was pretty great and the sides were tasty, but I couldn't tell the difference between their pulled pork and ribs, and everyone else's pulled pork and ribs.
  10. Batter'd and Fried.  I'll admit that the only reason I picked this place was because I heard that Ben Folds had been spotted there once.  He wasn't there, but I did find a hearty helping of clam strips, haddock, shrimp, and fries.  I don't know that I need to go back, but it was good for a quick and easy lunch.  
  11. Fido.  I'm including Fido even though we ate there way back when we were here for our evaluation. The food was excellent.  I had the huevos rancheros and a good cry, and I'd go back in a heartbeat.
Looking back on it, I think my evaluation of my dining experiences directly correlates to whether Jay was in or out of the hospital.  The food that seemed to taste best was that which I ate when someone dragged me out of the hospital and made me eat something other than "The Health Plate" from the hospital cafeteria.  (The cafeteria food is actually quite good, and I am grateful for The Health Plate, but you can only walk into a place so many times before it gets old).

That said, I am so grateful to those who forced me to take a walk and find some tasty food.  And I'm grateful to spend some time in a city where there is so much good food to be had. And I'm REALLY grateful for people with whom I can enjoy it!

Saturday, April 07, 2012

To All the Beds I've Loved Before

Tonight I will be sleeping in my own bed for the first time in nearly three weeks. As I tried to wrap my head around that, I began to reminisce about all the places I've spent the night since March 20.

March 19 was my last night in my own bed, and even then I only slept for about an hour. Since then, I've spent
  • 5 nights on the foldout bed/in the recliner in two different SICU rooms
  • 1 night on the couch in my dad's guestroom
  • 1 night in the king-size bed in our apartment
  • 3 nights on a rollaway cot on 10-South during Crazy Week
  • 8 more nights in the king-size bed in our apartment. Some of those nights included bonus kid
At this point I think I could sleep anywhere, but I am grateful for this one night in my own bed. I hope to return to it soon!

Friday, April 06, 2012

Discharge, Take 2

The liver team came in pretty early in the morning to tell us that Jay would be able to go home that day, but of course the discharge didn't actually happen until late in the afternoon. Dr. Iqbal was in clinic all day and wasn't able to get the order written until much later than we had anticipated. My mom had to come and get us since we had both arrived at the hospital in the ambulance.

We made it home well and I went to the Turnip Truck (God bless those hungry people in The Gulch) for groceries and dinner. Of course we had to be back at the hospital the next morning for labs, but we had a great weekend of out-of-town guests to look forward to. Our friends Jenny and Tim came into town, as did our children. We feasted around downtown on Saturday and worshiped at McKendree UMC on Palm Sunday. On Sunday afternoon Jay's parents took Joshua back to Jackson and Clare stayed with us.

Monday morning required us to back to the hospital for more labs (labs plus the little incident of psychosis are why we're required to stay local for awhile), and when we were on the way to the Belle Meade Mansion with Tim and Jenny later that morning, I got a call from the nurse. This is nothing new. We always get a call from the nurse after labs. But this time the nurse said that she wasn't happy with his labs and that he was scheduled for a liver biopsy on Wednesday.

Basically his WCC was too high and his liver enzymes were too high. This happened the day that he was readmitted to the hospital as well, but we dodged the biopsy bullet since his numbers came back down while he was in the hospital. We hoped to make that happen again. So we sent Clare to my mom's house on Monday afternoon while Jay took an epic nap. On Tuesday morning we ran some errands, came home, had lunch, and then we all had an epic nap. On Wednesday we went to the hospital for our clinic visit. This will be a regular occurrence on Wednesdays, but we missed the last one since Jay was laying delusional in a hospital bed.

This was a particularly fun visit. The FNP who saw us first was Chris, the precious guy I talked to the day that Jay was listed. It was neat to finally put a name with a face. In fact, I wish I had a picture of his face when Jay asked if he could have a manicure.

"I'm pretty sure no one has ever asked me that before. But I'm going to go ahead and say 'no.' It's a little too soon to risk it."

Then Dr. Wright came in to check Jay over. He was quite pleased with everything, including Jay's labs. They scrubbed the biopsy, told Jay that his edema would subside eventually if he'd stop drinking so much water, and basically said that he's doing extremely well. And in so many words Dr. Wright told me that I needed to chill out and find other things to worry about. Jay is recovering like a champ. We celebrated by sending Clare for another afternoon with my mom while we took another big old nap.

Oh, and we get a day pass for Easter Sunday. Whoopee!