Disappointment

Vanderbilt is not moving forward with my assessment for transplant; I am not a not a candidate. Yesterday morning I was contacted by the transplant nurse in order to set up a call with the doctor. The call was arranged and at 2pm, my Mom and I joined. He explained that the transplant team had met Friday and in discussing my case, they just couldn’t come up with a way to do the transplant and be successful. I have too many complicating factors and when they’re all stacked together, it’s impossible. He told me that he had really wanted to say yes; psycho/socially I am a perfect candidate. The doctor said they don’t believe they would ever get me out of the hospital post surgery and my chances of survival that first year would be 25%-50%.

The doctor was very clear that the complications are entirely outside of my control and there is nothing that can be done to change them. I need both heart and liver, which is common, but then that combined with my lung disease, my restrictive lung functioning due to scoliosis, the scoliosis itself, and my heart anatomy - apparently my aorta isn’t where it’s supposed to be, it all becomes too much. He also was very clear that there isn’t anything I could have done differently, nothing would have prevented me from being in this place.

I asked the obvious question - what is my lifespan? He said he wouldn’t begin to assume he could predict that. The doctor said that I have defied all of the odds and done so much better than anyone would have expected given my complexity. So that was a small piece of good news, he doesn’t seem to believe that I’m at death’s door.

The doctor was in Boston when we spoke but said that he’ll be back at Vanderbilt this week and is going to look through all of my records again. He thinks there may be some things that they can do that would improve my quality of life. He also asked about my interest in a second opinion, he said he by no means claims to know everything and would be more than happy to facilitate any other referrals that I want to pursue. He knows doctors at Duke and Stanford so we decided that he will have conversations with them.

So that’s where we are. If Duke and Stanford say “no”, which I expect that they will, I am probably done with pursing transplant referrals. What I absolutely don’t want is someone to say “yes” when they should be saying “no”. I could have years left as I currently am and I’m not going to trade that for a risky procedure with a low chance of success. Or a risky procedure that equals a low quality of life because I’m constantly in and out of the hospital.

I wish I was sharing better news but I don’t believe all hope is lost. If Vanderbilt can do some things that would increase my energy and stamina, that would be a huge improvement. I’m still hopeful that the Jardiance helps, I started it in December and it takes 6-12 to show results. My heart has gotten stiff and this drug is supposed to soften it which improves it’s functioning.

For a long time I’ve felt very grateful to my body, especially my single ventricle heart that has continued to power through. I had recently realized that I felt some sadness at the idea of letting it go. It’s like the little engine that could from the children’s book titled The Little Engine That Could. I guess my heart is meant to stay with me and keep doing what it’s been doing for the last 42 years.

Thank you to everyone who reads this. I have loved and appreciated all of your comments, emails, and in-person encouragement.

In the words of my Uncle Mike, onward!