I have already posted some of this on Face Book as I did not have access to my tablet this morning.
I was laying in dialysis chair in Oak Harbor this morning when my cell phone rang. It was my nephrologist’s medical assistant. She said, “Dr. Moss has been reviewing your labs and has decided that this will be your last dialysis. He thinks your kidneys have recovered enough to get off dialysis.”
It would be an understatement to say I was floored. Just last Saturday I went through training for long-term, dialysis options. It was depressing.
I have been following my renal labs religiously. I have a spread sheet and graphs to show how my creatinine and BUN do with and without dialysis. Those two toxins are the ones my kidneys have not done a good job of removing from my blood and they are the ones which are responsible for most of my symptoms. While my BUN did reach a normal level just after dialysis, last week, my creatinine has never reached a normal level.
I asked the MA, “Is he sure? My creatinine is still rising when I’m not doing dialysis.”
I see Dr. Moss again on March 18th and I thought that on day day would be the first time we would even have thoughts of reducing the hours of dialysis. But I was a bit discouraged at the slow process. But then his MA said, “He seems quite confident about this, but I will talk to him again.”
In about 30 minutes she called me back. She said that Dr. Moss understood my concerns but he thinks that when my kidneys are weaned off dialysis, they will kick in much better. I guess I should listen to him, as he has been a nephrologist for a few decades. He did add, to be safe, we will reduce your dialysis down to 3 hours twice a week (I started at 4 hours three times a week) for two weeks and then pull the plug unless I get into a crisis.
This is very good news and so exiting to think I could get off dialysis. You just cannot comprehend how much is at stake. Not only it is the time commitment, but it ties me down to being 48 hours from Oak Harbor. I can’t fly. I can’t visit grand kids or kids. I can never travel again, anywhere. But worse than that, I have to have these two rubber catheters in my chest that limits me in taking a shower, can’t kayak or hot tub. The tubes always hurt too and they put me at risk for a major infection. But the very worst part is that it makes my cancer treatment far more difficult and grave. For one, it very well might be that I cannot get a Stem Cell Transplant (SCT) if I’m on dialysis. SCT has the best chance of saving my life for up to 10 years. During those 10 years it is very likely that a cure will be found to the is god-awful disease.
So, I am very happy about this, but we must have guarded optimism. We cannot start to celebrate until the reduced schedule of dialysis does not get me into to trouble. Once I’m in the clear, and the tubes are out of my chest, then we can celebrate and declare victory.
The second bit of good news was that I met with oncologist this afternoon. I had already broke the news here about the levels of my bad protein have remained stable and continue to drop, although slowly. But I wasn’t sure about how he would interpreted those.
He was very satisfied that we are going in the right direction. The plan is to continue the same plan, trying to achieve near normal levels (which is below 26 and mine is now at 226, having started at 2658). My side effects to chemo have been minimal, although I still carry a lot of symptoms from living in renal failure for a couple of months. Mike