August 7, 2013

Stay This Way

My husband has been basically OK for over a year now and a thought occurred to me the other day.

If things could stay the way they are right now indefinitely, I could totally live with that.

Sure, he's diabetic and on dialysis. He has an implantable defibrillator and needs to use a cane to steady himself as he walks due to nerve damage in his feet.


But he's alive, able to continue working some and present as a father. This is more than I expected after his hospital stay a year and a half ago.

Then, I thought he could very well be on borrowed time. We were talking about making goodbye videos for the kids and even choosing songs that would adequately express things he's felt in his life that we could play at his service.

Slowly, very slowly, as time has passed and Mark has been holding his own, we have let go of those fears, for the most part, and just continued living. Living in the moments, with no expectations, with immense gratitude.
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Last week I published a post about my new friends, Steve and Tiffanie, who are were about to undergo a living donor kidney transplant. Unfortunately the infection that got in the way left a couple of wounds in Steve's belly that need to heal before they can go forward. Surgery has been put out for up to a month now. This is very disappointing. Necessary, but frustrating.

When I was writing about Steve and Tiffanie, I had no idea the curve ball that was about to be thrown in our direction when we visited with a kidney transplant doctor at the University of Washington just a day later.

Mark received a dual kidney and pancreas transplant back in 1996. We met in '94, so I was there for all of that. Two years later we got married, and two years after that we had our first child.

When Cami was 18 months old, in late January 2002, Mark's transplanted organs failed. He had to go back on dialysis and insulin. He was re-listed for another transplant at UCSF because that's where we lived at the time (and where he received the first transplant). When we decided to move to Washington, UCSF sent his files to UW where they took over his case.

Shortly after our move we made our first visits to the UW transplant team. They gave us some bad news, however. They told us Mark had a very high antibody count to a majority of the population due to his first transplant, and this would make it very difficult to find him a good match.

Then the heart problems began. One cannot go through transplant surgery if their heart isn't strong enough. Mark would have an abnormal heart stress test and be deactivated from the transplant list. Then he'd have a stent placed and a normal stress test, and be reactivated. This happened a few times.

Mark had a heart attack and eventually double bypass, after which he was obviously deactivated from the transplant list again. Then the arrhythmia in March 2012. All of these heart problems happening over the course of TEN years, plus the uphill battle of those darn antibodies....and you can imagine how we felt about the prospect of a new transplant.

It was not on our radar.

It was so not on my radar that when UW called and asked Mark to come in for an appointment, I figured the most likely thing they'd say was that they didn't feel he was transplantable anymore and needed to go ahead and just remove him from the list.

But that's not what the doctor said in her cute Irish accent.

She asked us if we would be open to a kidney only. Her reasoning is that doing both a kidney and pancreas is so much more complicated and dangerous, especially considering Mark's heart problems. She said she needs to see a CT scan and a dopplar study of Mark's legs. She needs to check for decent blood flow in order to safely hook up a new kidney.

Pretty sure we looked like deer caught in headlights.

You're telling us there's still a possibility Mark could have a kidney transplant and get off dialysis?

The doctor asked us how we felt about that. Mark said he would still prefer to receive a pancreas too, but he wouldn't turn down a kidney only. She turned to me. I said I feel like a new kidney would be a big improvement and something is better than nothing.

But wait. Really?? Could this really happen?

We have to have those tests done, but apparently yes, it is still within the realm of possibility.

I'm trying not to get ahead of myself until we know for sure if we can go ahead. Like, does this doctor know enough about Mark to be saying these things? What if she's completely wrong?

But if there was ever a time to be hopeful, I think it's now.

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