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Mar 04 2010

Thurday, March 4, 2010: Day Ten Post-Transplant

I had hoped to post an update or two earlier, but it’s been an eventful past couple of days that unfortunately included a return to the Critical Care unit starting late Sunday night.

Let me start with a quick review of the weekend following my last posting:

Friday: Alison and I continued to make great progress. She was completely unhooked from all tubes, began a liquid diet and quickly shifted to solid foods on Saturday. My NG tube was removed – another milestone in helping me feel like a new person – and I started on a liquid diet. With renewed energy, we challenged each other to laps in the hallways, and I was feeling confident since I had made such limited use of the pump for jolts of pain medication.

By Saturday Alison was practically having to convince everyone that she was actually a patient since she was no longer tethered to an IV pole and gave no evidence of having just gone through major surgery. My father and his wife, Mary, arrived to give Catherine a quick break so she could go home overnight to spend time with our children.

Sunday: Alison was discharged Sunday morning, which Catherine and I met with very mixed feelings; we hated seeing the other half of this team leave, but it was an immeasurable relief to know they were leaving because she was well enough to do so. (We now talk by phone to compare notes and provide updates – a comforting call each day). I continued to push myself to walk, so I wasn’t surprised that by that evening I was feeling a little less energized. Catherine arrived back at the hospital at 9 p.m.

We had just finished watching the closing ceremonies for the Olympics when I got out of bed and had to sit immediately back down because I was light-headed and having trouble catching my breath. Catherine helped me back to the bed, and as we sat down I told her I was passing out. The next image I recall is of Catherine racing out of the room to call for help. I was attached to an EKG monitor while the room began filling with more and more people, and it was almost immediately determined that I was experiencing atrial fibrillation, which in lay terms means that the heart is quivering rather than beating in a rhythmic fashion. It also meant that I was going to be whisked back to the Critical Care unit to begin having the irregular rhythm corrected. My blood pressure was bottoming out at about 74 over 50, but my heart was racing at 180+ beats per minute. The immediate treatment involved IV drips of medication designed to convert the heart back to a normal rhythm, which we understood could take anywhere from an hour to a few days. If this proved ineffective, the next step would involve sedating me and shocking me back to a normal rhythm, which sounded even less pleasant than the “waiting” option. So, we waited.

Now, I am a planner by nature. I like to anticipate, and prepare for, a wide variety of possibilities. I had spent endless hours bracing myself both mentally and physically for the transplant. I had prepared for pain, I had prepared for reluctantly releasing all control, I had prepared for being away from my children for an extended period. I had prepared for a lot, but I had not prepared for this. I now know that an atrial fibrillation is not uncommon in those recovering from a surgery as traumatic as a transplant (a little detail I must have overlooked in the marketing material for my Transplant Cruise). But an atrial fibrillation is not common for me; nothing about the past week-and-a-half has been common. So, from the onset of this at about midnight Sunday, through the next 14 hours, I believed that there was a real likelihood that I might die.

Fear comes from a lot of different places, has a multitude of contexts, and is different for all of us. But fear that grips you at the source of your breath strikes you in a very primal way, and so I found myself in a very dark place with no apparent way out. I couldn’t force my mind to stop putting images in front of me that I didn’t want to see. It started with vivid scenes of my children at my funeral and got worse from there. I’m still recovering from what Catherine and I experienced that night and don’t have any profound thoughts to share. I didn’t come out of the other side of this with some special clarity about the purpose of life, or nuggets of wisdom to impart. I do, however, feel transformed and am still processing exactly what impact it is to have on me.

Here are two things that were very clear to me in the short-term. First, this could have only been worse if I had experienced it without Catherine there. Her presence, support, reassurance and love were the ONLY things that kept my train anywhere near the tracks. Next, I really needed to see my kids.

So, by Monday afternoon, the atrial fibrillation unceremoniously stopped. About two hours before I converted back to a normal rhythm, Dr. Fisher came in the room, barked out a few orders about my care and delivered the one piece of news that brought a bright ray of light into a pretty grim day: the pathology had been completed on the removed liver, and the results were 100 percent clear with no cancer cells present. This was incredibly uplifting to hear, even in the face of concern about the heart rhythm.

Since then, we’ve been undergoing additional diagnostic tests to further understand a variety of issues – just a few of the numerous issues that will be continuously monitored even after I’m discharged from the hospital:

  • Atrial fibrillation: Is this something I’ve always had and this event brought it to the forefront? We still don’t know, but it’s Thursday morning now and I’m being slowly weaned from the IV drip that corrected the heart beat on Monday. We’ll be waiting to see if I flip back to atrial fibrillation or if this was really just a one-time incident.
  • White blood cell count: Mine jumped very high early Monday (10,000 and lower is good; mine skyrocketed to 43,000 and remains higher than we’d like at 21,000 today). We began running 5-day blood cultures Monday morning, and the preliminary results are negative for any sort of raging infection.
  • Blood sugar: A common side effect of the prednisone I’ll take as part of my anti-rejection regimen is elevated blood sugar. Mine has been hitting high enough levels to make me light-headed. We’re correcting it with insulin now and hope to eventually reduce the prednisone to an amount I can tolerate while still providing an adequate anti-rejection benefit. The only question will be whether or not I’ll need to take daily insulin to help tolerate the prednisone.
  • Pneumonia: I’ve got a mild case of it now, but between the antibiotics I’m taking and the breathing exercises I’m doing faithfully, it’s not going to present a long-term problem.
  • Infiltrated IV: One of my IVs infiltrated on Monday and spent an inordinate amount of time pumping fluid under my skin. Incredibly, the pain from this is several times worse than the pain from my surgical incision, but it definitely falls in the realm of minor annoyances.

And that brings us to today – Thursday. I feel very strong today and trust that while our plate remains full of some potentially serious hurdles to cross, we’re well within the range of what the transplant team deals with on a daily basis, and I have absolute confidence in their skills and knowledge. I hope to be discharged late this afternoon or tomorrow, but will have to remain in Richmond for as much as two weeks while my medication dosages are adjusted and while I learn to go out into the real world with my suppressed immune system.

Finally, two incredible pieces of information to share:

1. All of my liver enzymes have been coming down steadily since the surgery, and for the first time in over a decade one of the measures has strolled back into normal range. I’m not sure how one celebrates such an occasion, but rest assured I’ll be celebrating this.

2. I had a routine ultrasound of my liver late yesterday morning where it was revealed that the portion of Alison’s liver that I received has already grown to be the same size as an average adult-sized liver. In nine days.

Catherine and I continue to be at a loss for words to adequately convey the appreciation we feel for the outpouring of love and support that has come to us throughout this journey from friends, families, co-workers, medical professionals at the Virginia Commonwealth University Medical Center and new relationships that are being created each day. Our lives have been impacted in ways that go far beyond the transplant and that have opened our eyes and hearts to the capacity that individuals and communities have to care for one another.

11 comments

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  1. Kerry Mossler

    Thanks for keeping us in the loop. Your sense of humor and your courage are just amazing. You are still on the top of my prayer list. I know you will be home soon, planting a spring garden with your kids! xxoo

  2. Ken Burger

    well there are several ways to celebrate a liver that’s functioning well in spite of being picked up and moved from its original home to a foreigner like you. I could suggest a healty pee but that might be too crass. Or a good down-on-your-knees prayer, but you’re already doing that, just as are a lot of other faithful followers. So perhaps a good way to celebrate normal liver function would be simply keep doing what you’re doing: living life fully each and every day, and keeping your friends and family informed. We are in this together, you know, even if vicariously for many of us. Oh, and how about a good deep breath? nothing any more miraculous than what takes place with a breath, as you already know.

  3. Rosemary Hamilton

    What an incredible week you have had. Thanks for explaining all of the highs and lows of your recovery so well and providing definitions of medical terms. It is very helpful to read this. Love you!

  4. Kathy Hines

    What a week!! I can truly see God’s hand in this journey and what better friend to take along! The pictures are fabulous and I appreciate you sharing this information with us all. Catherine gives new meaning to “STAND BY YOUR MAN!” You are both precious and loved so very much. God speed my friends!

  5. Laurel & Tim Columbus

    Wow! Thank you once again for sharing and including us in a small way on your incredible journey. We are so thankful for all of the answered prayers on your (and Alison’s) behalf. We continue to pray and are looking forward to seeing you at home very soon. Keep up the good work!

  6. Pete

    Hang in there Bill, listen to your Van Halen and you’ll be just fine. We’re thinking of you for sure!

  7. Joe Lurie

    Bill- I have never met you but think the world of your wife from work and am amazed at watching you articulate this amazing journey that you are on. 9 days to a new liver is amazing. You are living a dozen lifetimes with the intensity of each of these difficult days and I wish you a quick and smooth recovery in the coming weeks so that you can be back with your full family in short order. Congratulations on your progress so far and the courage and strength you are showing and sharing. — Joe

  8. Jan Reger

    Bill, you are one strong little puppy, and it’s going to take more than some bad heart rhythms to get you down. I’ve never met anyone with more strength and courage than you and Catherine. My prayers have been answered with the wonderful pathology report… and I’m continuing to stay with you in spirit through the rest of your journey in Richmond. Can’t wait to see you both again soon. Thanks to Catherine for the frequent updates.

  9. Stacey

    Bill and Catherine, First, what a sense of relief it is that you are doing well, and well enough to write to us and keep everyone up to date on your absolutely amazing recovery. Second, how amazing that you, at this early point in your recovery, remain so funny in your descriptions of what is to say the least, an overwhelming ordeal. You both are a testament of the power of love and life. Keep up the amazing recovery! Stacey

  10. Amy and Will Sandidge

    Your courage and strength are amazing. Keep up the great work in your recovery. I can’t wait to see you hanging out at Starbucks again. So, wonderful to hear of the growth of the new liver; God’s work is incredible. May your blessings continue!

  11. Susan

    Wow Bill!!!

    What a story! Your liver is normal size already???? I can hardly imagine, Has alison[s begun to regrow too??

    Thanks for telling your remarkable tale!

    I love you, Man!! Susan

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