Today is the first full day being listed for a 2nd heart transplant. I received final authorization from my insurance company yesterday and got a call from my coordinator at Cedars Sinai around 4:30pm. Her words were “with your blood type (B+) be ready to go at anytime.
I was told the same thing before my first heart transplant back in 1997. They said B+ is one of the more rare blood types and that there are not as many people waiting for a B+ heart. They were right. I waited only 22 days. I was waiting in the hospital however, at the highest status. This time I’m status 4, waiting at home.
Status 4 is the highest ‘at home’ status. There are not as many interventions for folks who are waiting for a second transplant. The disease I have, cardiac allograft vasculopathy (CAV) cannot be treated like it’s cousin coronary artery disease. They can’t do bypass surgery, and I can’t control my cholesterol to mitigate the damage. No, this disease is the result of slow, long term rejection. My immune system has been eating away at this heart for almost 24 years and it’s an irreversible process. So redo transplant is the only option.
I’m going to try and post something to this blog each day to mark time until I get the call. Hopefully, for your sake and mine, that won’t be very long. Until then, I’ll be posting a photo or a few words daily - life from my point of view, a few things I’ve observed during my 23.5 years of borrowed time.
Thanks for reading.
Matt
