TUBE FREE - FINALLY!!

It is true! Scott is completely tube free! His peritoneal dialysis catheter was removed today. He has no medical paraphernalia attached, implanted, tunneled, inserted or hooked up to him. That is a first in almost 9 months. Now he can have a shower for the first time in months. He doesn’t have to use any saran wrap in the shower either(to keep paraphernalia dry).

The appointment with the nephrologist went great! She said that Scott’s kidneys have been working 35-45% over the last month and they may continue to improve. We may not need her services any more. Can you believe that!?!? I am still amazed!

Because of Scott’s kidney improvement, his anti-rejection medication levels have not been very consistent. They keep changing his doses and therefore need to biopsy more often.

The biopsy for Scott is a huge pain!! Most heart transplant patients have a biopsy done through a vein in the neck. They use minimal local anesthetic and it takes about half an hour to go in and get microscopic pieces of heart tissue. It is done in the echocardiogram lab at the hospital. Scott however has unusual anatomy and veins. Due to that and other issues Scott has to have his biopsies done through the groin. Because this is a more complicated procedure he needs more anesthetic and it needs to be done in an operating room settting called the catheterization lab. He also has to lay flat for at least 2 hours after the procedure. Then he can walk around for an hour. Then they take out his IV, give us a speech about how to care for the site, and give us the spiel about the possibility of fatal bleeding. Nice. The entire process always takes about 6 hours. Not fun!

Scott is scheduled for another biopsy on Monday. He has had them every 3-5 weeks for months. The last 4 have been 1R – very mild rejection. I keep hoping for some zeros. Maybe then they can increase the time between biopsies. I guess I should be grateful that the worst thing now is biopsies. I am. But I can still hope for fewer of them, right!?