Help Fund a Heart Transplant
August 1, 2015 is the day that Sterling and I moved from Jackson, WY to Denver, CO to start an extraordinary life together. Four years later to the day we officially moved to Raleigh while I also had my first cardiac appointment with the Duke team. What a long stormy and exhausting day we had. My heart failure specialist, Dr. Stuart Russell, is amazing and I feel very comfortable putting my life in his hands. He had a long career at Johns Hopkins, where my ARVC team is, which he worked very closely with before moving down to NC two years ago. So not only is he an incredible HF specialist, he is more familiar with ARVC than most and he knows and communicates with my doctors in Baltimore.
Sadly, the news is not what we were hoping for. Dr. Russell informed us that to have any chance at a productive and more meaningful life is to be placed on the transplant list. As he kept reminding Sterling and myself, "I'm good for nothing." He's not wrong. This was said in a light manner, but it was stated multiple times and it's true, it's just something we have never allowed ourselves to admit or even speak aloud.
Many people who do not know me or even hear a brief synopsis of what's going on laugh when I say I'm too old for this or that. Yes, I'm only 32. However, living a life of a typical 32 year old is nearly impossible with a heart that does not function correctly, with energy levels that are comparable of someone who is 3x my age. This is why I chose to fly home while Sterling and Adam drove our belongings across country. I'm able to put on a pretty good front for most, I go out when I can, I socialize when I can, but every time is a struggle and behind the smile is pain and agony.
It hurts me that I'm not able to hang out with Sterling, his sister (Taliyah), and my brother (Adam) while we are all in Raleigh. I find myself writing this while they are out drinking beer and eating pizza. I hate to miss out on those kinds of moments, I hate that my energy drags other people down, I hate that my energy drags me down, I hate that I never feel good, and I hate that there is seemingly always something to complain, bitch, and moan about.
Dr. Russell knows that I can't do anything nor does he want me to try to do more than I currently am. No exercise, no salt, no work. And even though my latest test results came back normal from the Right Heart Cath, which perplexed my Denver doctor who had given us a great deal of hope that things would be ok, Dr. Russell believes those results would be terrible if the test was taken while I was standing up and moving, however that's not a possibility. He stated that 10 years ago he would have thought to let me continue on until I was permanently hospitalized. After years of studies and experience he thinks placing me on the transplant list will hopefully make the transition of getting a new heart easier as we'll be more prepared and hopefully not too sick making for a quicker recovery.
I will finish my complete body examination by the end of August which will require a multitude of tests. As long as I don't have any signs of cancer and Medicare will pay for my new heart, I will be going on the list. I will then have multiple and frequent appointments with all sorts of doctors to be informed of the transplant from every angle by talking with the surgeon, therapist, finance counselor, nurses, etc. I could be on the list for up to two years. Dr. Russell would rather me go through the process this way rather than suffering from increased arrhythmias, ICD shocks, more extreme fatigue, increased shortness of breath and even water retention. Of course if I do get any worse in the meantime he can always expedite the urgency.
I am not able to process this news quite yet, I'm in denial, I'm stressed, I'm anxious, and I'm exhausted. The ongoing discussion of a heart transplant has been "maybe you need one, maybe you don't." This is the first time it has been said that in fact, yes, you need a transplant and we are starting this process now.
I've never known a life with a working heart so it is impossible to even comprehend what that life can hold. The first year of a transplant is very precarious and there is no guarantee it will work, or that you will get a good heart, or that your body will accept it, or that you won't get deathly ill. The average life span is roughly 15 years so that is something else that is mind boggling. Overwhelming is an understatement.
Currently words are hard to find, emotions are raw and ever changing, and stress is through the roof. This is going to be a long expensive journey and I know many of you have donated funds to help Sterling and I out during this life changing experience and we can not thank you enough. Like many of you, I hate asking for money but unfortunately finances are a large part of getting a new heart. If there is any beer money you might have lying around over the next couple of years, any donation whether now or later will not go in vain. I love you all and always appreciate your love and support. gofundme.com/kiele
P.S. If anyone knows of someone renting out a house in the Raleigh area, we'd love to hear from you. We're trying to get out of condos/apts to have more privacy that a house would offer while we go through this trying time.
