Yesterday, my seatmate at dialysis talked to his doctor about planning on NOT coming back to dialysis because the site in his arm is so pitiful and they spend about an hour trying to get it to work and the blood flow to be adequate enough to dialyze. I instantly went back to when my Dad had the same conversation. On the 10th of December, 1993, the docs told him they had fixed all they could fix and this was the last spot on his body that could be stuck with the two needles required in dialysis. That was a Friday and it was my older Army son's 21st birthday, stationed in South Korea.
Dad announced to us on that Friday that he wasn't going back to dialysis. Nine days later, he died, after spending a little over a week indulging in everything the center said he should avoid. Coffee. Nuts. Strawberries. Orange juice. All the liquid he wanted to consume. He was happy and actually the healthiest I had ever seen him. Whenever Hospice came in to do his vitals, I wondered if he was making the right decision - but in the end, yes. I think it was the right decision. He had little quality left to his life. Sleeping most of the day. Being confused when he was awake - thinking that whatever was on television was happening in reality. Using a walker. Wetting himself. Not being able to eat much of anything and then throwing up when he did.
So - I related to my neighbor but was sad about it too. This one decision (to not come back because our sites quit working) is one we all face eventually. So far for me - I'm doing great. It's been three years (thirteen for my neighbor). Transplant is the only saving grace and for my friend that is not an option. He is too ill, veins too wrecked, to handle a transplant.
Then today I got a letter from the transplant center stating that I was **back** on hold because my finances will not be able to handle one of the non-covered anti-rejection drugs I am required to take. With my insurance, that one particular drug is still $550 out-of-my-pocket a month.
It's daunting to think that maybe I'll have to make this same decision some day. To not go back to dialysis.