Tuesday, August 16, 2011

08/07/2011 Complexities

I have had so many events/accomplishments going on in my life that I have wanted to write about, but it just seems like I have not had the words to put them into my computer. There is one thing that keeps going over and over in my head, I like to keep this heart related, and this is MAJORLY heart related so I will go with this. In about April/May I had heart failure, that I think I had actually had for a few months, I just did not realize the symptoms I was having (dry cough, weight gain, swollen toes, and inability to eat or hold food down) were because I was having heart failure. In fact I did not even think anything of those symptoms really.
This all started off with feeling like I had a bacteria or virus, I thought it was my turn to get CMV. I got labs and cultures drawn, but the cultures were taking way too long to grow (or in this case not grow) and I requested a biopsy. Thankfully my wonderful and brilliant cardiologist also checked the pressures in my heart and saw that I had fluid on me (on my lungs and heart) and my pressures were low.
When I heard the results I was out of my mind floored. We did more testing and found out that my heart was going “stiff” again meaning I was developing Restrictive Cardiomyopathy, again. I could not believe that less than two years after transplant I had developed the disease I got transplanted for-and so soon. I was shocked, speechless, and in disbelief. I always knew I would need another transplant, but now it became a matter of from now to whenever, I always thought I had at least ten years before I had to even start thinking about another transplant.
As the group of transplantees that I am close with gets further out from transplant, we are starting to have more complications of all kinds. Another patient that I look up to, I just read also developed Restrictive Cardiomyopathy, again (that was also their diagnosis before transplant) and they were diagnosed at the same month I was rediagnosed. When I heard about this I almost started crying because it just hit close to home. It just seems like of all us have so many different complications, that there is always someone to be concerned about and then be concerned that you do not have that problem.

1 comment:

  1. Allie - I am so sorry to hear this...and I hope that they can find a way to help your heart out with some kind of more minor intervention. I know it must be disappointing and scary...I try not to live in constant fear, as I'm sure you do as well - but sometimes it is overwhelming. If I can do anything for you, please email me...I will keep you in my thoughts and prayers...