Re-transplant evaluation….continued

On Wednesday, April 16, we headed back down to Durham for Thursday’s appointment with Dr. Carl Berg, the head of Duke’s liver department.  Crazy to think that in a little over a month, we’ve been to Durham and back three times, but such is the case when you’re looking for solutions on how to save your life!  Unlike our last visit at the end of March for the week-long evaluation, this trip was quick and (literally) painless.

Our appointment was scheduled for 10:30 yesterday morning, and by 10:35, we were already in a room.  Dr. Berg came in shortly after, greeting us with a cheerful handshake.  He asked several questions about the condition of my liver leading up to my first transplant.  From what I recall, I had a liver biopsy in either 2007 or 2008, and at that time the liver specialist claimed I was the first case of cystic fibrosis induced liver disease that he had seen. However, and from my perspective, the damage was minimal, deeming me eligible for my first transplant.

Fast forward six years, and the story is a little different.  This time around, not only are my lungs in need of replacement, but my liver may be, too.  Periodic lab work over the years has shown elevated liver function that was typically the result of taking anti-fungal medications like voriconazale or posaconazole.  Once discontinued, my liver enzyme levels would return to normal within a week or so.  But since my last hospital stay in November of 2013, my LFTs have remained elevated.  Though Dr. Berg stated yesterday that the levels are “not off the charts,” they are of high enough concern that Duke is taking a very close look at my liver’s physiology to determine just how damaged it is and if a re-transplant of the lungs is at all possible without transplanting the liver.  In addition to the biopsy Duke performed on March 25th, yesterday Dr. Berg ordered a liver CT with contrast to help him and his team make that determination.

We should know more in a couple of weeks.

Scared

For those who know me, being scared isn’t an emotion I often portray.  Having survived my struggles with cystic fibrosis and receiving my new lease on life at age 33, I thought that only better days were ahead.  The thought that I would one day be back in this position – waiting for the evaluation, waiting to be listed, waiting for “the call” – never occurred to me prior to my first transplant.  At that time, I was full of hope and assuredness that the transplant would eventually happen and all would be well.

When I look back on that time now, I feel quite silly not knowing what I should have known. Prior to my first transplant, my main concern was receiving new lungs and having the ability to breathe freely.  Unfortunately, naivety can happen when you’re too self confident. And although I’d like to blame my lack of knowledge on those charged with feeding information to me prior to transplant during all the “What-to-Expect” workshops and  the like, it was my responsibility to know the basic challenges of receiving such a gift before accepting it.

So today, nearly six years after my first transplant, I’m faced with the incredible task of bilateral lung transplant all over again due to the chronic rejection of which I was shamefully unaware.  Having been on this downward cycle for nearly two years, I know all too well that things aren’t going to get better without another life saving miracle.  And I’m scared.  Scared that the evaluation won’t go well, scared that I won’t be listed, and scared that I won’t receive “the call” that lungs are available.  But mostly, I’m scared of what will happen to my family if I don’t receive another chance.