I saw the nephrologist today.
The preparation has to start now. Both kidneys have to be removed. This came as a shock to me...PKD isn't just cysts on the kidneys (which never stop growing.) It causes cysts in the liver and colon. The biggest shocker is it can cause brain anuerysms too.
It has to be done w/in the next 24 months or, well, it is going to be really bad. The thought now is to get the transplant before dialysis is necessary. Transplants can also be done w/out the heavy steroids like prednasone. I'm really grateful for that.
I'm beyond emotional at this moment. I want to cry but I don't want to break down in front of Gary. He's got enough on his heart and mind without me being a big crybaby. He wants to be evaluated as a possible donor. I don't mean to be maudlin, I just believe deeply he'd be better off w/out me. I'm not suicidal and I plan to fight. I believe I've put him through more than he deserves though.
I'm on all kinds of new drugs now including Procrit at $700 a shot. That'll be $1400 a month just for Procrit. Hopefully insurance will cover it. We won't know until it is submitted.
The Benedictine Options
2 weeks ago