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Mar 23 2010

One Month After The Transplant

Today marks exactly four weeks from the date of my transplant, and it’s hard for me to remember a time when I’ve felt better. All of the symptoms that have been a constant presence for the past several years are absolutely gone. Every day I wonder if some sort of complication is going to sneak back in, or if I’ll suddenly start itching again or if the jaundice and nausea will return. But these concerns quickly diminish to the background, because the overwhelming feeling that occupies my mind is that I feel great and there’s a lot I’d like to be doing.

Last week we made it home in time for Julia’s birthday party at her school (Note: the “at school” party is the first of about 4 parties that Julia has parlayed her birthday celebration into. She has somehow combined her birthday with Hanukkah to create a month-long celebration). Herley, our nanny, had planned the “at school” celebration and had agreed to braid and bead all the girls’ hair. We also brought tattoos and hair paint for the boys. Little did I know that Julia had been keeping her classmates apprised of my progress before, during and after the surgery, so all eyes were on me when I came into the room. Within seconds, the two first-grade classes had assembled in front of me and were begging to see the incision. It was at this point that I realized that Dr. Fisher probably would not have identified a classroom of 32 first-graders as the ideal place for an immunosuppressed liver transplant patient to visit, but there I was, and as always, I was heavily armed with hand sanitizer and a watchful eye for runny noses. I gave the kids several warning notices, asked if they were SURE that they wanted to see the incision, and finally lifted my shirt. Of the 32 kids, 31 thoroughly enjoyed the sight and described it as either “cool” or “gross” (the highest degree of cool for a first grader), while one appeared to have seen far more than she expected to. Herley wound up doing double duty, since it seems that the boys weren’t satisfied with just tattoos and shocking red hair; nearly all of them wanted beads in their hair, too. Julia had a blast, but I don’t think anyone had a better time than I did, back among the world and ramping up for a new future.

Last Tuesday (March 16, 2010) I had yet another follow up appointment with Dr. Fisher and Michael Akyeampong, my transplant coordinator. As is typical with each of my visits to the transplant clinic, the day began with blood work. On this day my blood was drawn just minutes before my visit with Dr. Fisher, so he didn’t have the benefit of the lab results when we met. He suggested that we not make any adjustments to my medications since my recovery was not just going well, but was far ahead of schedule. Like the prior visit, we focused more on helping me understand the limitations of physical activity that I am allowed to engage in without doing more harm than good. The general direction that Dr. Fisher provided me was that I could do just about anything as long as it didn’t hurt. That sounded quite a bit better than the 10-pound lifting limitation I had been following since the surgery. Michael clipped the remaining staples out, and for the first time I left the hospital with no hardware of any kind attached. In fact, I had also been cleared to drive (at three weeks post transplant!) so I was eager to get behind the wheel and reclaim a bit of my independence.

On the drive back home from Richmond to Lynchburg we somehow missed a call from Michael instructing me to add one pill to my dosage of Prograf, one of the three anti-rejection medications I’ll remain on for the rest of my very long life. Michael’s voicemail didn’t indicate what, specifically, caused them to make this change, but I assumed it was in response to something that had been seen in the lab results from earlier in the day. Naturally my mind jumped to organ rejection as the cause for the change in medications. It seemed obvious to me that, if you’re adjusting the dosage of an ANTI-REJECTION medication, it would only be in response to seeing early signs of rejection, right? (Oh, and NO, I have not made any progress in managing my tendency to over-react to minor changes in my condition…thanks for asking). So, when Michael called 24 hours later, I was relieved to learn that the dosage change had not been prompted by any early sign of rejection, but instead was in response to the fact that the level of Prograf in my bloodstream was below the optimal therapeutic range and needed to be boosted. Michael explained to me that I should expect to see numerous “tweaks” to my medications over the next several months while they learned how my body processed each individual drug.

I should point out here that rejection is not necessarily a crisis. In fact, it’s quite common. Prior to becoming a transplant patient, I had always believed that rejection was an all-or-none proposition. I know now that rejection comes in varying degrees, is typically managed by adjusting medication dosages, but can require hospitalization and is occasionally life-threatening. Dr. Fisher explained to us that we should think in terms of four major milestones during my recovery: (1) immediately after the transplant, (2) three months post-transplant, (3) six months post transplant, and (4) one year post transplant. With each passing stage, the likelihood of rejection drops dramatically. I’m past the first stage and have set my sights on the three-month mark as the next hurdle. There’s reason to be optimistic, since I’ve not had the first hint of rejection so far.

During this first month, my Prednisone dose has been dramatically reduced from 40mg/day to 10mg/day. I’ll be bumped down to 5mg later this week and to 2.5mg a few days after that. I’ll remain at that level indefinitely unless Dr. Fisher determines that I can stop taking the Prednisone altogether. Why am I bothering to share exactly what my Prednisone dose is? Because this seems to be the only medication I’m taking that has caused any undesirable side effects. It’s the most innocent looking pill — a tiny, round white thing, about the size of a baby aspirin. But it’s dull exterior belies the wallop that it delivers. Prednisone is included as part of the treatment for a wide variety of conditions, but it carries some significant baggage in the form of a bonanza of side effects. At the higher doses, it sets all you nerves on edge, and I was advised to “not even bother trying to sleep.” It also sent my appetite into orbit, and I found myself eating anything within arm’s reach.

In fact, here’s a cautionary tale for anyone taking the special combination of Prednisone and Dilaudid, a very strong pain killer that adds “night terrors” to the list of side effects I could expect to experience. It was while I was on this combination of drugs that I had an unfortunate incident involving Nilla Wafers and an 8GB digital camera memory card. I wish I could tell you that I had attempted to install the Nilla Wafers into digital camera, but the truth is actually worse. I had a handful of cookies and was shoveling them into my mouth at a blistering pace, thanks to the Prednisone, while I was transferring some pictures from my camera to the laptop. Somehow the memory card found itself in the stack of cookies, making it just a matter of time before I had nonchalantly tossed it in and given it a chomp. My reaction time was a little slow, so it’s possible I might have even managed to get TWO bites in before realizing that something was wrong. The incident cost me about $30 for a replacement memory card, and well more than that for my pride.

Overall my recovery has moved along quite nicely, but I’ve come to realize that this isn’t a linear process with each day better than the last. There are minor setbacks and periods of discomfort that appear from time to time, usually after I’ve had a very good day and have been engaged in more physical activity than I probably should be. I’ve have learned to not judge the quality and pace of my recovery in half-day increments, but instead to look at the bigger picture, and so far I’m very happy with the way things are going. It has helped to set some stretch goals for myself, and one that is coming up soon involves participating in a local running event (as a walker). Alison and I, along with a number of friends and family members, will be participating in The Point of Honor 5K and Youth Mini Mile, held on Saturday, April 3rd. This race and its proceeds benefit LifeNet Health and Donate Life. The race is organized by Kevin Shroyer of Lynchburg in honor of his daughter Korinne Shroyer who died on May 26, 2002 at the age of 14. The Shroyer family made the decision to donate Korinne’s organs, and one of those who benefited from this gift was Len Geiger who was in need of a double-lung transplant. Len and Kevin eventually met and learned that they are each avid runners. The two have even found several opportunities to race together to honor Korinne’s memory and to draw attention to the power of organ donation. If you’re interested in participating in the race, you can register online at Riverside Runners. I can almost guarantee that you won’t finish last.

2 comments

  1. Stacey

    Bill and family, So glad to hear that things are going so fantastic! Tom and I had a long conversation about how even in the face of adversity, you have weathered this journey with humor and grace. We did have an extremely good laugh over the Nilla wafer incident- the visual we came up with I’m sure wasn’t half as funny as the real experience! The prednisone, well, I know what ya mean there. Glad that your dose has been lowered.
    Our entire family continues to follow your progress. We all send our thoughts and prayers to you and your family. Keep us updated of your progress. Sincerely, Stacey

  2. m.hunt

    Hope the “race day” went well – you have been in my thoughts as my day gets ever closer. Hope we can meet before “the big day”. We anticipate being in VA around May 26-27 or so with surgery scheculed for June 3. Take cre and stay well! ~M

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