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Mar 09 2010

Two Weeks Under Our Belt and Finding the New Normal

First, to get caught up on some old news, here are some of the details about the days immediately following discharge from the hospital…

Thursday evening at about 5pm, I was told that I was ready for discharge from the hospital. It would have been more accurate to say I was being discharged from the hospital, whether I was ready or not. While I had anticipated that this was a milestone I would reach with unbridled enthusiasm, like everything else with this journey, the reality wasn’t nearly as black and white. Frankly I was nervous about it. I thought I’d be kicking the door down, running for the car. Instead I was wondering if maybe we were being discharged just a day or two earlier than we should be, and wouldn’t it be better if we just stuck around to be completely certain that everything was okay, and after all it’s getting dark and it seems like getting discharged during a period of very bright sunlight, with possibly slightly less traffic would be…

I couldn’t believe it. I had turned into that patient. I needed the security of the hospital in an irrational way. I suddenly realized that I should’ve been paying more attention to all that had been going on around me for the past week. For example, I can recall in extraordinary detail that several people had said, “Whatever you do, never, ever stray from your drug regimen..it’s what’s keeping you alive.” Check, got that. What seemed so much less clear now, though, was exactly what the drug regimen was.

My abdomen also felt a little tight. This seemed like a “legit” medical-type concern, so I mentioned it to Carol, one of several members of the nursing team on the Hume-Lee Transplant Unit at MCV who treated us so wonderfully during our stay. She poked around for a bit, listened with her stethoscope, and smiled. She looked at Catherine and said, “Ohhh, we women know what that is.” What…huh? Was I pregnant too? Carol added, “You’re just getting a little bloated. It will pass.” Never have more accurate words been uttered, although a bit understated. More later on that.

Before I knew it, all the components of my carefully manufactured Hospital Nest had been dismantled and loaded onto a cart rolling next to my wheelchair. We were leaving. Okay then, at least I had The Notebook. The Notebook had been provided to me earlier in the stay and contains an enormous amount of critical information: the single sheet that outlines my drug schedule, lists of signs and symptoms of rejection, around-the-clock emergency contact information, dietary restrictions, activity restrictions, and the grid of vital signs I’m to record numerous times each day. The Notebook has it all. Therefore, no matter where I go in the future, The Notebook goes with me, along with a giant box of 1-week’s worth of pills neatly arranged into 28 little boxes for each of my 4-times-a-day medicines (it will eventually be only 2-times per day), a thermometer, and a blood pressure machine.

The apartment so graciously being made available to us through the generosity of one of Catherine’s Genworth colleagues would not be ready for another day, so we went to The Westin and settled in for the night. We arranged for dinner to be brought to the room and toasted the opening stages of our gradual return to the normal world. But the calm was to be short-lived, because I was unwittingly working on the perfect recipe for a frantic night.

The recipe started with anxiety. I should explain that during my first day outside the hospital, my anxiety trigger remained on Red Alert status, scanning the environment for the slightest change in my condition that might indicate trouble. No detail was too small to be considered as a warning that I was in rejection, so this was no time to let our guard down. Next, consider the possibilities when two days of a hyperactive appetite catch up with a gastrointestinal system that has been essentially asleep for over a week. Let’s just say…there were consequences. I spent the night pacing the hotel room unsuccessfully trying to find a comfortable position while growing increasingly convinced that I needed to place a call to the transplant coordinator to make sure I shouldn’t race back to the hospital. I held out as long as I could, but by 6am I decided that I needed Catherine’s opinion on the matter.

I had to ask Catherine if she was awake three times before she realized that she was. I quickly got her up-to-speed on my concerns: swollen and painful abdomen, more fluid than usual accumulated in the abdominal drain, and absolutely no sleep. She seemed unimpressed, and to be honest, when I heard myself say these issues out loud for the first time, they didn’t seem very serious so I reiterated them, just to make sure we were on the same page. Not long thereafter, I realized Catherine was showering at what seemed like a leisurely pace (Note: this brought back memories of another time of high anxiety when Catherine’s water broke in the middle of the night prior to Will’s birth. While I waited in the driveway with the engine running, she…you got it…she showered and then dressed for the occasion). By the time she was out, I had already spoken with the home health nurse and with the transplant coordinator, both of whom believed  that I should continue to be vigilant (my strong suit) and calm (not so much my strong suit). When Catherine finally emerged, I provided her a detailed summary of my phone conversations. She looked directly at me and said in a quieter-than-usual and lower-than-usual voice, “Bill, you’re going to be okay. Nothing’s wrong.”

And with those few words, I had been given a gentle course correction that helped set me on a path for a less frantic recovery. She was, of course, right. I spent most of Friday in quiet reflection, wondering if I could determine when, exactly, I had lost the ability to distinguish between matters of huge consequence and those of no consequence at all. Somewhere along the way, I had lost all sense of scale and proportion when it came to the numerous aches and pains that now accompanied me. Part of the explanation rested with me and my anxiety…I get that. When in doubt, I would assign every change in my condition the highest degree of attention and concern. Put more succinctly, I had become a crazy person. But another part of it is the direct result of that fact that I’m now a different person than I was prior to the surgery, and in this case I’m referring to the physical differences. I have a healthy liver working in me now, and I have a suppressed immune system. I feel very strong, but I also am having to re-learn how to stay healthy under a completely new set of rules, some of which seem natural and others of which feel foreign. I want to be extraordinarily careful not to do something wrong, in effect to pamper this new liver so it’s given the best possible conditions to thrive. I’m having to learn what “normal” is going to be in the future.

By Saturday morning I was feeling even stronger, and suddenly allowed myself to believe that everything was going to be okay. I’m still in the three-month window where there’s the greatest risk of rejection, but so far my recovery has been progressing at a greater-than-expected rate. I needed to stop dwelling on minutiae and start directing my attention to a brighter, healthier future. And what better way to do that than to spend time with my children, so we arranged to have my dad and Mary bring Julia and Will over for a visit on Saturday afternoon (and yes, we did clear this with the transplant team). It was incredibly uplifting just to be around them again, hearing them laugh and watching them play together. It was apparent that the time away had its ups and downs, and Julia never misses an opportunity to ask if we’re going to be home in time for her birthday on Friday, March 12th. She’s going to be seven, and it’s hard for me to imagine missing that date, but I’m going to have to defer to the opinion of Dr. Fisher, which I won’t know until this Thursday morning. My ideal outcome would be to get cleared for a weekend return to Lynchburg, knowing that I’ll likely have to be back in Richmond for the clinics next week. We took the kids to the Lewis Ginter Botanical Gardens here in Richmond on Sunday afternoon, where Catherine insisted that I be pushed in a wheelchair for parts of the walk. I didn’t enjoy being in a wheelchair at all, and felt very self-conscious about it, but I’ll admit that I got strange symbolic satisfaction about my kids wheeling me through some of the more challenging stages, bickering with each other over who got to push me next. Before I knew it, the afternoon had slipped away and it was time for the kids to return to Lynchburg. As expected, the send-off was difficult, but was only a blip in the grand scheme of things. It was time again to focus on the shorter-term need to continue to get healthy.

Over the past two weeks, it’s hit me – I’m missing something. Since the transplant, none of the symptoms that have bothered me over the past several years are present. None. No itching, no nausea, no chronic fatigue, no general feeling of weakness and listlessness. That alone is hard to believe. I’ve not even had the slightest hint of a fever since the surgery and my energy level continues to rise. Sleep is still a problem (I’m running at about 2-3 hours each night without even a nap during the day), but I’m told that’s also to be expected as a side effect of the many of the medications I’m taking. Fortunately the dosage for one of the worst offenders – Prednisone – will taper down every few days, so all its unpleasant symptoms should diminish.

On Monday morning (March 8th) I had blood work and an MRI. Although Dr. Fisher has not yet seen the labs, the transplant coordinator shared with us that everything looked good. Some of my liver enzymes had bounced back up, but apparently not into a worrisome range, and the coordinator explained that this was to be expected. My white blood cells also appeared to be high (25,000) but the transplant team says that’s within expected ranges for this stage of the recovery and given the amount of Prednisone I’m taking (remember, I’m still trying to find what the new “normal” is…here’s a great example).

With home health, physical therapy and clinic visits on the schedule through the remainder of the week, I expect nothing but positive reports to continue to come my way. Alison has her first return visit to the clinic on Tuesday, but all indications would suggest that she’s continuing to blaze a trail through her recovery, also beating all expectations in terms of progress. It will be good to see Curt and Alison again on Tuesday.

More to come, but for now I’ll share some additional photos from the hospital stay and afterward.

9 comments

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  1. Kerry Mossler

    You are looking great! The picture with the kids says it all! It is going to be a great spring for your family!!!

  2. Natalie Trost

    Hang in there Bill! Sounds like it’s a long road, but look how far you’ve come already!

    I’ll be at the school Friday and will be sure to wish Julia and very Happy Birthday!

    Take care,
    Natalie

  3. John and Penney Varner

    We continue to think about and pray for you every day. So glad to know all is going well. We admire your strength and courage.

    What a journey!

    John and Penney Varner

  4. calfee80

    Bill,
    You already look like a new man! We really like the pseudo-beard as well. Your words are always refreshingly honest and it’s so nice to be able to keep up with your progress through this blog. Praying for you daily.
    Best,
    Daryl and Johanna Calfee

  5. Kathy Hines

    Thank you for keeping us so well informed! You look great and the picture with Catherine, Julia, and Will says it all!! Our prayers continue to go up and look forward to more pictures. Kathy

  6. m.hunt

    You blog is both helpful and inspiring…hope during my recovery I can reread your journey …continue to improve and hope your daughter had a wonderful 7th birthday and that you could be with her.

  7. Bob Leveque

    Bill,

    Words simply cannot express how happy Donna and I are that everyone’s prayers were answered and that you’re on the road to recovery. You’re an amazing man on an amazing journey. We will keep praying that your recovery stays on track with limited “speedbumps”.
    While I realize it will be sometime before our “Men’s Dinner Group” can get back together I look forward to our next gathering. Perhaps a reunion at Mi Patron will be in order seeing that that was the last time we met.
    Hang in there and I hope to see you soon.

  8. Kevin Shroyer

    Bill,

    Keep the updates coming. You & Alison are truly an inspiration to all! I would be honored by your presence at my race if you guys are up to it. You two are a testimony to the strong power of organ donation and that is what my race is all about. May God continue to bless you as you recover and I will be talking to you again soon.

  9. Kathryn Bradshaw

    It’s great to hear you are doing so well. How was Julia’s birthday party? I’m sure you were her greatest gift this year! Hope to see you at your next appointment. Thanks for keeping us all updated!
    Tell Catherine that we think we found our church home!!!

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