I feel a bit down today.
The past two weeks have been stacked full of appointments, tests and procedures as part of my Heart Transplant Assessment, I have had something booked almost every day and I’m tired. I still have a few more tests for next week so almost done and a meeting with the Heart Transplant Clinic again, next up will be a number of vaccinations that quite frankly scare the shit out of me. My heart can be so easily aggravated and I worry that introducing the vaccines into my body on a rapid basis will set me up for shocks…but I can’t go on the list until they are completed. It’s a catch 22.
The scariest of the procedures was a Right Heart Catheterization where they put a scope into the right side of my heart through the jugular vein in my neck to determine how well the heart was pumping and to measure the pressure in the heart and lungs. I was awake for the procedure so when my heart rhythm started to go wild, I could feel panic set in. Prior to starting the procedure, the surgeon put a large magnet over my device so that it wouldn’t unnecessarily shock me and to help them control the situation to some degree. It’s such an unsettling feeling to have your heart beat so erratically, I heard the Doctor tell the person operating the scope to watch my rhythm after he heard me say “Oh my Gawd”, they slowed down and my heart seemed to settle down. The procedure took all of about 20 minutes and when it was through, I told the technician that it was one of the coolest but yet horrifying things I could remember having to go through. Within an hour I was sent home with a long list of instructions in case the wound started to bleed again.
I also met with a surgeon, his job was to look at my case to see if I would be a good candidate for surgery. One of the big discussions has been my weight, I am and always have been a big girl, very muscular but reasonably fit, despite that, he thought I would be. It gave me some relief for him to say that but they have also expressed concern that it will take longer to find me a suitable donor heart. One thing he mentioned during our meeting was that there was a 2% chance that whatever is causing my arrhythmia now could reoccur in the new heart. I was stunned! I thought I was looking at the magic bullet that would make this all ok so I could get on with my life and I realized then and there that there probably isn’t one and it was about as good as it was going to get. He also asked me to think about how many shocks a year would be acceptable to me, he said that it may be a reality that I would be stable for awhile then experience a little “storm” like the one I just had with three shocks in two months. Thinking about this lately, I realized that in the 26 months that I have had my ICD, I have had 31 of those shocks, that’s a little more than one a month…that is unacceptable. The shocks are so random, with no warning how am I expected to put them into the back of my mind and carry on and live a normal life? It’s more confusing now than ever, just when I thought having a new heart would lend some predictability to my situation, a little tidbit of information changes the entire game.
I guess that thankfully for me, I have an awesome team of doctors working to try to decide what is in my best interest and they have a whole community of international doctors they can go to for ideas in my very difficult case. There are a couple of other ideas floating around, things they would like to try before giving me someone else’s heart and I am quite willing to try them, but in the end, it means more time in limbo and more time away from my productive life and I don’t like it one bit. It makes me sad.