Sunday, December 30, 2012



Since writing this post on December 15, a lot has changed. I figured I'd go ahead and post this one and fill in the rest later...

Oh, hey there.
You know when you haven’t talked to someone in a while and you want to call, but the notion of catching each other up on every detail that has taken place since your last conversation is overwhelming, so in the end you simply don’t call? That’s been the nature of my relationship with this blog for a number of months now. I have wanted to write – and have started several posts – but never really knew where to begin or how to catch up. Instead of deliberating any longer, I’ll just share some recent news and fill in the biggest gaps.
Almost everything has changed. I left my job (in a “congratulations on your lay-off” kind of way) and am enjoying some much-needed time off with the security of ongoing health insurance. I left New Jersey and am now living in my parents’ basement – it’s a lot better than it sounds, but it’s still my parents’ basement. I finally went to the Mayo Clinic in Rochester, MN and am currently under the care of their transplant team.
The Mayo Clinic is a very impressive place. The facility was modern and immaculate, the staff members were friendly and efficient, and most importantly, the doctors were thoughtful and thorough and extremely intelligent. While the “Eureka!" moment I had imagined did not materialize, my parents and I left Rochester with a new idea and a little bit of hope.
The cardiologist there believes I might be ultra-sensitive to one of my main medications, tacrolimus, which may be responsible for my extreme fatigue. Tacrolimus is very standard immunosuppression treatment following heart transplantation and is typically tolerated very well. However, it is known to contribute to problems like diabetes and kidney disease, two afflictions I have had since beginning the drug. I’m hopeful that my sugars and kidneys will show improvement once I stop taking it, but my hope for relief from my fatigue is more guarded. I have learned the hard way that it’s easier on the soul to expect the worst in solving this mystery.
To maintain sufficient immunosuppression, I will transition to a different drug called sirolimus over the next month or two. Sirolimus is used in kidney transplant patients and has been less commonly used in heart recipients. I’m aware of some unlikely but grave side effects that have been seen with sirolimus, but my new cardiologist does not anticipate any problems with the switch. I had also considered this drug with my NJ team in the interest of protecting my kidneys, and they were likewise supportive.
I began the transition on Tuesday. This first stage introduces the new drug while maintaining my regular dose of tacrolimus. Next, I’ll begin reducing tacrolimus and increasing sirolimus until I reach a therapeutic level of sirolimus. I’ll have regular lab work, which will be monitored closely by my team at Mayo. I expect to feel any significant changes within the next three months.
If the move to sirolimus only prevents me from requiring a kidney transplant within five years (the path I’m on with tacrolimus), that will be a win. But the true opportunity here is to get my life back. I can no longer even remember what having energy feels like and can hardly imagine a life without this crushing fatigue. What bliss that would be.
Regardless of the outcome, I am grateful to the fine folks at the Mayo Clinic for truly listening to me, offering really thoughtful insights and ideas, and for showing my parents and me that genuine Minnesota hospitality. Don’t cha know.

Stay tuned for...the REST of the story.

1 comment:

  1. Good to hear from you! And congratulations on your lay-off.