«

»

Apr 21 2010

Eight Weeks Post-Transplant

I just reached the 8-week mark since my transplant and am still very encouraged by the rate of progress. That’s not to say that there hasn’t been a glitch or two along the way, but most of these have been minor and of little consequence. The only thing of any significance that has kept me from referring to my recovery as “flawless” has been a repeat episode of the atrial fibrillation almost three weeks ago. This one was nothing like the 14 hours I spent in a-fib one week after my surgery. In fact, this time the arrhythmia lasted only a few minutes, but the effects lingered for another couple of hours beyond that. I have come to learn that many people experience this, and the symptoms can vary considerably from person to person. I happen to have a particularly strong reaction and find myself gasping for air, unable to take a deep breath, and with a wildly rapid heart rate. I’ve at least been able to convince myself that I’m probably not going to die as a result of one of these episodes, but I would like to avoid any repeat performances if that’s at all possible.

After my most recent experience, I called the transplant team in Richmond and they referred me to one of our local cardiologists, Dr. Valentine. In his opinion my a-fib is the result of two things: (1) my body’s response to the trauma of such a significant surgery, and (2) the impact of the Prednisone, which keeps me running at fever pitch. Dr. Valentine has placed me on a low-dose beta blocker (Atenolol) for the next several months while I recover from the surgery, and I’ve been gradually weaned down from 40mg of Prednisone a day to 2.5mg, so its effects should be diminishing rapidly. Both Dr. Fisher (transplant surgeon) and Dr. Valentine (cardiologist) believe that this is a temporary condition that will resolve itself, so after a few months I’ll stop taking the Atenolol and we’ll wait to see if the symptoms recur.

Despite the arrhythmia, I’m feeling great. My energy level has continued to be very high, almost to the point of being a nuisance. While I no longer am plagued by insomnia, I am frequently having trouble going to sleep in the evenings because I’m staying up until the early morning hours just enjoying what it feels like to not be sick, to not itch like I’m on fire, to not be nauseated, and to no longer be visited by the tired yellow ghost who has haunted my mirrors for the past several years.

My incision, the only real indicator that I’ve had surgery, is healing nicely. I have to confess that I have a strange bond with the incision. It has actually become a source of pride as a sort of clinically sanctioned “tattoo” that commemorates some of what I’ve been through. It’s a 60-stitch bite from a staple-toothed shark, not to mention a powerful conversation piece. Having a scar like this reminds me of several years ago when I had a wicked black eye as a result of an entirely self-inflicted encounter with a shower door (don’t ask). Once I got beyond the initial embarrassment of being disfigured, I slowly discovered that having a visible wound had some advantages. I learned that having a black eye suggested that I was a little sketchy, unpredictable, and I might even be inclined towards violence. There’s definitely an added measure of respect that people will grant you when they think you’re willing to take a punch for something, even though in my case nothing could be further from the truth. So, I’ve come to see my scar in the same light. While it’s not always visible like the black eye, I’ll show it off whenever anyone shows the slightest bit of curiosity in seeing it (e.g., see the bottom of this page). The scar is a little too orderly to imply violence in the same way the black eye did, but it does say, “Bring it on. I’ve been through worse.” Anyway, it’s healing rapidly and looks considerably less grisly than it did during its earlier days, although I’ve got some sort of hard knot just below the intersection of the horizontal and the vertical cut. Dr. Fisher speculated that the knot is just a small pocket of fat, but suggested keeping an eye on it to make sure it isn’t a small infection. With a scar like this, evenings at the pool will be interesting this Summer.

I returned to work part-time on March 29, and just returned to full-time work this week. So far, nearly everyone I’ve come into contact with has offered the same advice with respect to my recovery: don’t overdo it. Generally speaking, this is sound advice since there are very real consequences to rushing the recovery and doing more than your body is able. However, I’ve learned that there is a considerable downside to being inactive for any length of time, even just a couple hours. Dr. Fisher seems very comfortable having me follow my own post-surgery philosophy:

  • Do as much as possible, but don’t do anything that hurts. Be careful with strenuous lifting.
  • If necessary, take a power nap (20-30 minutes) in the early evening, but don’t settle in for a long drooling sleep.
  • Do anything that gets your heart rate up. Walking is ideal.
  • Drink lots of anything, but avoid sugar, caffeine, carbonation and, of course, alcohol.
  • Don’t be too stoic about pain. Take a pain pill when it’s necessary.
  • Listen to 80s hair metal music.

Okay, I didn’t tell Dr. Fisher about the last one, but it’s my secret ingredient that makes just about anything better. By the way, I’m not offering any of the above as advice or guidance since I know all surgical recoveries are as different as the individuals experiencing them. I am suggesting that it’s my strong personal opinion that taking it too easy can be detrimental, while remaining active and even pushing yourself can keep you fit and flexible. I also believe that returning to a relatively “normal” routine (if there is such a thing after a transplant) can be a huge morale booster. To be perfectly honest, I feel so much better after my transplant than I have for several years leading up to it that asking me to not overdo it is a little like handing someone the keys to a brand new car and telling them not to drive it.

I also have tapped into a treasure trove of less-traditional recovery steps that are every bit as important as eating well and exercising. For me, these include the following:

  • Listen to good music.
  • Spend time with friends and/or family every day.
  • Make time for quiet meditation and allow yourself to be unencumbered by the concerns of the day.
  • Accept the prayers and well wishes of those who have offered their support and kindness. I’ve learned to not take this lightly and to actively acknowledge and accept encouragement and prayers as fuel for each day.
  • Find something to laugh at. This comes easily to me.
  • Read and write.
  • Simplify and de-clutter my home and work environment.
  • Spend time outside.
  • Do something to make someone else’s day better. Do it before they have to ask. There are bonus points if the “someone” is your wife or children.

Based in part on my diligent efforts to be as active as possible and to follow the rest of my prescription listed above, my energy level has been increasing each week. On Saturday, April 3rd, Alison and I participated in the Point of Honor 5K and Youth Mini Mile, a small local race that raises funds for LifeNet and draws attention to organ donation. This event fell on a date that gave us a great goal to shoot for since April 3rd was exactly 40 days after our surgeries. Originally our goal was to just attend the event, hand out some literature about organ donation, and be there as living examples of a positive transplant outcome. When it became evident that we were both recovering well ahead of schedule, we decided to at least attempt to walk the race. To ensure that we wouldn’t have to be emergency helicoptered out of the woods during the race, we practiced it several times before the actual event and discovered that it was within our physical capacity. The weather was perfect on race morning…okay, can I stop calling it a race? I wasn’t racing anyone or anything, except possibly the debilitating fatigue that was nipping at my heels for the final moments of the walk. So anyway, the weather was perfect on the morning of the walk and it was just one of those days that reminded me how fortunate I am to live in Virginia. The air was cool and clear with blue skies overhead, and it was thrilling to be among a crowd of people willing to get loud about organ donation. I was in a very positive place, and used the energy to propel me to a blistering pace that had me crossing the finish line 291st out of 304 runners. I doubt few people have ever been as satisfied as I was to walk 5K in 56 minutes (40 days after a pit stop to replace some worn out parts) but I was a very happy camper.

I’ve had two follow up visits with the transplant team since the last blog update, and both have gone well. During the first visit I had a Pentamidine Nebulizer treatment, the first of the twelve that I’ll have each month for the following year in order to fight the risk of pneumonia. I also had an MRI in order to get a closer look at the liver and its biliary structure. The MRI results showed that everything is progressing according to plan. During last week’s subsequent visit, my blood work revealed that my bilirubin was normal, and that most of my liver enzymes had dropped substantially since my visit three weeks prior. Because my recovery is going so well, I’ve already been switched from weekly to monthly visits back to the transplant clinic. This may seem minor, but it’s a relatively large milestone to me; it was just a few weeks ago that I was uneasy about not having my blood drawn every day, so to go a month without seeing the surgeon and without having lab work conducted feels like a big step. Fortunately, it’s a step that brings “independence” that much closer to me, so I’m good with it.

3 comments

  1. Ken Burger

    Hey, this is great to hear you’re doing so well, Bill! I had an image of you secluded away living in a protective bubble that blocked out everything nasty and threatening …. and much of life at the same time as well. Really glad to hear I was wrong in that impression and that you’re out, active, working and racing — er, walking. Life tastes extra good after surgery doesn’t it?

    I’m thinking your real test will come on September 4, Alabama’s first game of the new season. Sure, it’s San Jose State, but our BAMA can turn any game into a nail-biter.

    Good to hear from you, Bill. Thanks for the updates including the details — takes a lot of the mystery and fear away from an imaginary beast lurking in the closet of anyone whose Dr says the word “surgery”

  2. markchatterley

    You did a 5K walk? Blimey, that’s amazing. Congratulations.

    Also, I do have to say, that I am slightly envious of your scar. I remember hearing once as a child that ‘if you haven’t got one scar before you die, you haven’t really lived’ and I have to say, that is one impressive scar.

    Glad that everything is sorting itself out and I’ll keep my fingers crossed that there is no more arrhythmia.

  3. Esther Colling

    My son in Virginia Kent sent me this blog and I do appreciate it at our grandson has just been diagnosed with this disease. I had never heard of it. Seth is 28 married and has a little 8 months old girl. He is not sick but it was found through a life insurance blood test. So I am happy you are doing so well. Sincerely Esther

Leave a Reply

Your email address will not be published. Required fields are marked *