I have decided to start this blog to chronicle the progress of my journey towards receiving a heart transplant. A couple of months ago ago, it became official that my heart condition had progressed to the point of beginning the process of evaluation to see if I am a candidate to receive a heart transplant.
To give some background on my condition, I was diagnosed with the extremely rare combination of hypertrophic cardiomyopathy and wolff parkinson white syndrome at the age of 22 in 1996. I had an ablation to correct the WPW. The cardiomyopathy was not bad enough at the time that it required me to take any medicines. Essentially, I went back to a normal life and felt as invincible as any other guy in his 20's would.
Then my 30's hit and it wasn't long before my heart problems began to rear their ugly heads again. After suffering two strokes in the span of about 6 months, it was determined that I should receive an ICD (defibrilator/pace maker). This was implanted in late 2006, when I was 32 years old. Soon after, I had a few bouts with Atrial Flutter which required another ablation in 2008. One of the episodes of Atrial Flutter caused a non-obstructive heart attack.
It was clear my heart was getting weaker and the different issues with my heart were beginning to catch up to me. Still I was well controlled and able to function quite well through medication. I had a period of several years where I was relatively healthy.
Three years ago, tests were showing the heart weakening. One year ago, upon having complications resulting from an infection when I had my ICD replaced, I was subjected to three surgeries (one to remove the old device and put the new one in, one to take out the infected device, and one to put the newest device in). At the conclusion of this hospitalization, my cardiologist was concerned about my condition due to fluid buildup as a result of the heart failure progressing. Upon taking care of the immediate problem, I was introduced to a nutritionist (who was, ironically, an extremely heavy-set man). This man went over, in detail, a plan for keeping a low sodium diet to help control the amount of water weight I carried, since it was putting tremendous strain on my heart. This resulted in a gradual weight loss of roughly 40 pounds in the span of about a year.
I was feeling much better and felt as though this would buy me much more time as it was taking a great burden off my heart. Eventually, though, as my weight continued to decline, so did my heart function. Over recent years, my immune system seems to have also taken a hit - or perhaps my heart just hasn't been healthy enough to combat what used to be minor illnesses. When I get sick, it seems it takes a lot more time to bounce back from it. I also noticed that walking even moderate distances was becoming more difficult and taking more than one flight of stairs required me to take a break.
The straw that broke the camel's back was when I was taking a cardio-pulmonary stress test and was on the treadmill. Eight minutes in to the test, I was walking briskly when I quickly realized it was too much. I gave the thumbs down (my indication that I had had enough), an instant before I blacked out. My cardiologist looked over the incomplete test results and determined it was time to visit with a heart transplant team.
Thus begins my journey toward getting a heart transplant.
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