July 15, 2014

No Longer a Candidate for Kidney Transplant

I just opened a letter from the University of Washington Medical Center dated March 5, 2014.

I hadn't bothered to open it when it first arrived because I already knew what it contained. Mark's nephrologist had called us into his office to tell us what the UW transplant surgeons decided:
"Your risk of transplant surgery and immunosuppression outweigh the benefit due to multiple medical co-morbidities including coronary artery disease and vascular disease."

"We understand that this is a difficult time for you, but transplant is not the optimal treatment for all patients with kidney failure. Due to your high risk for complications, the physicians feel you will do better on dialysis. Our transplant team supports the best treatment plan for you as an individual."

The bitter pill: Maybe he wouldn't have the complications if he had been able to receive a second transplant a long time ago. Also, they shouldn't waste a perfectly good organ on someone who might not survive the surgery, or could easily reject it.

The irony: The reason he wasn't able to have another transplant a long time ago is because of high antibodies from the first transplant, and his heart problems started popping up shortly after we established contact with UW in 2003/04.

The reality: We have not been holding our breaths for a transplant, for the most part. When problem after problem with Mark's heart kept coming, we knew that was a major stumbling block. One's heart simply must be strong enough to endure such a big surgery.

Still, to officially be told no, it's absolutely not going to happen......well, it didn't feel very good.

We have essentially now been told that there is no hope for improvement.

There is no other straw to grasp.

Mark will live on dialysis for the rest of his life.

And let me tell you, now that I've been going to his treatments for a few weeks, this is no easy task. I mean, even I, the spouse of someone who has been on dialysis for 12+ years, hadn't really given the endeavor its due.

Keeping up with regular in-center hemodialysis treatments means being stuck with two large needles in one arm with a blood pressure cuff wrapped around the other, and being tethered to a chair for four hours three times a week. That is 12 hours of your life every week of just sitting in a vinyl recliner and maybe trying to sleep while listening to the loud white noise of the machines mixed with constant alarm beeps from every direction.

It's boring and monotonous at best. Painful, uncomfortable, inconvenient and intrusive at worst.

So when the transplant doctors say they "feel you will do better on dialysis" I think, yeah, better than death.

Which is something, I suppose. There is dialysis for people whose kidneys fail and it keeps them alive. Can't say that for a lot of medical conditions.

But, like I said before, we may not have been expecting Mark to get a kidney transplant. On the other hand, knowing that he won't, kind of sucks.

It's even a little depressing. It is in the forefront of Mark's mind that he isn't going to get any better. It makes him question what it's all for. Is it worth it? Is his quality of life on dialysis good enough to warrant it?

For now, the answer is unequivocally YES. For that I am thankful.

There was a time when I was sure Mark would never give up, that he would fight to his last breath. Sometimes now, though, I wonder.

Maybe if things start getting better after all he's been through this year I won't think that way.


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