Transplant News As Promised Last Week
Last Wednesday Micah and I went to a kidney transplant class. I promised I would write about it this week, because I couldn’t do it last week. I was still too brain fried to even try.
The class was three hours long, and I ended up with fifteen plus pages of notes. There is a LOT to learn and think about when it comes to kidney transplants and Oregon Health Sciences University wants to make sure all potential transplant candidates go into their transplants with their eyes wide open. They want us to be well informed on the risks and benefits of transplant.
On first blush, it would seem like getting a kidney transplant would be the answer to all our prayers. Micah would have the freedom to move where he wants when he wants and not be bound to a machine three times a week. He would have more energy. He could have a much better quality of life.
But there ARE risks involved. Acute rejections, while rare, do occur. If they are caught right away (which means Micah has to stay on top of all the home care necessities, like logging bp and taking a bajillion meds that cost $30,000 a year–which, by the way, is about the cost of one month on dialysis), it is possible to save the kidney. But not always. Plus, just because you get a kidney transplant mean that life is always sunshine and roses after that. Transplanted kidneys have a “shelf life”. Depending on the source, how well it is matched, and whether the kidney came from a living or deceased donor all affect how long and how well the kidney will function. It could be 8 years or 18 years. Some people get theirs to last 30+ years. But that isn’t so common.
In addition, one kidney is enough to live, yes, but it is still reduced function and Micah will always need to adhere to a healthy diet. So getting a kidney doesn’t mean he then can go eat burgers and salty french fries and all the other things that really aren’t healthy. Once in a while is okay–like anything, moderation is key. How well you take care of yourself (diet, exercise, etc.) can affect how long the donated kidney will last.
Anyhow, after our transplant class, Micah was seriously stressing. He had absolutely no sleep the night before (maybe an hour?) because of dialysis and was tired to begin with. Add on all of this information and his head hurt. Emotions ran high, so to speak.
To say he got smacked upside the head by the fear train is only a mild exaggeration. But he did get scared. He’s afraid of the risks of the transplantation surgery. The worst possible outcome–death–is rare, but statistically, it does happen. While he is worried for himself, he is more afraid that his aunt, who so graciously told him she would be willing to donate her kidney, will die on the operating table, trying to give him a new life again.
In addition to the surgery risks, he is equally afraid of the upkeep. He is afraid he will forget to take his anti-rejection drugs, which he will have to take every day of the rest of his kidney’s life like clockwork. He is afraid he will eat the wrong things or do the wrong things and the kidney will die off sooner rather than later and that the surgery will have been for nothing.
After we got home from the class, he was so exhausted and worried and scared that he balled up on the bed and clung to a pillow for dear life. I talked with him and reasoned with him and soothed him until he fell asleep.
I don’t think it was until Friday that he came to me out of the blue and said, “I wanna do it.”
I knew immediately what “do it” he meant.
OHSU has called, and he is set to get the first round of lab work done on July 25th. He’ll get to be a human pincushion and they’ll take somewhere in the neighborhood of 23 vials of blood for testing.
We are giddy, but nervous. And still the fear creeps in (I have my own, too–I don’t want to be a widow, thank you very much). But we are charging forward into this territory so new to us. I am so grateful for the advice and help of other kidney patients who have lived through the process and have been so helpful and kind to talk with us and walk us through our fears. It makes it less scary and the possibilities more tangible.