Jul 21, 2019 Latest post:
Mar 24, 2020
Welcome to my CaringBridge website. I intend to use to share with you how I ended up on the heart transplant list, and to keep you updated on my search for a new heart.
The short version of why I'm on the transplant list is that I have a genetic heart defect that can cause heart failure and arrhythmias, and unfortunately has caused both in me. Over the last 15 years I have developed atrial fibrillation, which has caused me to have four TIA's (also referred to as ministrokes, because they cause stroke-like symptoms that are not permanent in duration), have had traditional heart failure symptoms that have required many, many daily pills that sometimes resolve the symptoms and sometimes do not, had an implantable cardioverter-defibrillator (ICD) implanted in my chest to hopefully shock me out of life-threatening arrhythmias, and most recently began experiencing lengthy strings of ventricular tachycardia that have caused my ICD to have to shock me.
After my fifth visit to the hospital this year, the heart transplant team at Methodist Hospital put me on the heart transplant list on June 12. They also determined that my condition warranted the implantation of a "balloon pump" in my chest, which was a little more complicated than usual, as they put one in but had to take it out a week later and place one in through the other side of my chest, and then do two more surgeries on the area where the initial pump had been. The pump is pretty immobilizing, I am tethered to a little R2D2 type machine along with another machine and my IV pole, so I basically have a 4 foot radius I can move around in, but the good news is that having this pump puts me in the top tier of possible recipients.
The bad news is that I came in with crazy high antibodies levels, which greatly reduces the number of donors from whom I can receive a heart. I have been doing Methodist's protocol for reducing antibodies levels, which so far has included five plasmapheresis treatments, in which they took out my plasma and replaced it, a couple intravenous immunoglobulin (IVIG) treatments, and a regimen of a couple of chemotherapy drugs (that do not come with traditional chemotherapy side effects). Unfortunately, we are not sure how successful these treatments have been; the first blood test showed my levels had come down, but the second one showed they had gone back up. I did another blood test this week that we should have the results from in about a week, so prayers and good thoughts for that.
So, as you can see, I have had a lot to wrap my head around and a lot of surgeries and treatments to get through in the last six weeks. Fortunately I'm now pretty much just waiting for a compatible heart from a very generous donor. The doctors - who are excellent here, as are all the nurses - told me a couple weeks ago that they had started receiving offers of hearts for me but have had to decline them because my antibodies match tests for them have come back positive. So, again, prayers and good thoughts that my levels come down so I will eventually be able to accept one.
Thank you all very much for reaching out to me, David, Zach, Max, and my parents during what has been an extremely difficult time for all of us, and for your prayers, support and encouragement. And thanks to those of you who have been feeding my family in my absence - I should probably ask at this point that you to not make them too delicious, lest everyone end up disappointed with my cooking when I get home.
I promise to try to be a good pen-pal and post an update each week. Since as I've mentioned I'm kind of just waiting now, the updates may be how many laps around the floor my nurse took for that day or how the beef stew was that night, but it'll be something!