Here We Go Again

by David Goldman

It’s been a couple of bad luck weeks for me when it comes to finding a kidney donor. Two weeks ago my best match was told she couldn’t donate because of her own medical issues, and this week the same thing happened with my other best match. Hopefully, both of them will get things resolved and they’ll quickly return to good health. In the meantime, I’m back at square one in my search for a donor.

If you’re new to this subject, here are a few facts about kidney failure and living vs. cadaver kidney donation:

• ·      When you have kidney failure, you have two choices: dialysis or a kidney transplant.
• ·      A kidney transplant doubles the life expectancy of a patient versus being on dialysis. The lifespan of a 40-45 year old male on dialysis is approximately 8 years.
• ·      The wait list time for a kidney averages between five and six years.
• ·      Short and long term survival rates are significantly better for transplants from living donors than transplants from deceased donors. (On average, approximately 18 years for a kidney from a living donor compared to 13 years for a kidney from a deceased donor).
• ·      Surgery for living donors is minimally invasive and almost always done through a laparoscopic procedure.
• ·      Much more information about living kidney donation can be found at the Living Kidney Donors Network (www.lkdn.org).

 Wednesday, I spoke with one of my transplant coordinators who told me a few people have asked to send in blood samples to see if they’re compatible matches and this is a very good thing. She also told me to get the word out again to see if there’s anyone else willing to donate and that’s what this post is about. They say you can’t just ask people to donate. It puts people in a very awkward position with no graceful way to exit. You’re supposed to just tell them your story and hope that they offer to donate. The good thing about a blog is, you can come right out and ask but nobody’s put in that uncomfortable position. Another one of the wonders of the Internet!

My story is pretty simple. I was diagnosed with Type 1 (or juvenile) diabetes when I was a year and a half old. I led a very normal life with a few diabetes related bumps in the road. When I was 27 I found out I had diabetic nephropathy (diabetic kidney disease). At that time, kidney transplants were no longer experimental, but they were a lot more rare than they are today. I was very lucky. My sister wanted to donate and when I was 30, I received a successful kidney transplant from her. That kidney worked perfectly for almost 25 years when it eventually failed. I went on dialysis this past December. Since then I’ve been hopeful of another transplant.

Getting back to asking or not asking someone to donate. This post is clearly asking anyone who is interested to consider donating. If so, please call the University of Minnesota Transplant Center. This is where I had my first transplant as well as my pancreas transplant. Their number is 1-800-328-5465-Option 1. All of your information is kept confidential. They will not use your name or divulge any of your personal or medical information to me.

And, I thank you!

Round Two

by David Goldman

I’ve been on dialysis a little over nine months now. This whole time I had the transplant carrot dangling in front of me and that’s been a good thing. It kept me moving forward. Being “sick” is a lot easier to deal with when you see the opportunity to be cured. Even though a transplant is really more of a trade off, it’s still better than being on dialysis.

Several people had volunteered to donate and out of those a few were good blood matches. I had to clear a few medical hurdles in order to be okayed for surgery. That took longer than I thought. I was anticipating a few weeks but it turned out to be a few months. Then, the candidate whose blood best matched mine on several critical parameters had to go through a battery of medical tests as well. That’s where things really seemed to slow down.

Without going into detail, my friend had to have a couple blood tests done, wait a few months, and repeat them. Whether or not she could donate would be determined based on those results. Both of us have anxiously waited for that time to pass. Finally, last week the day came and the test was done. Of course, it was immediately before the holiday weekend so we had to both wait nervously even longer for the results. Yesterday they came in and they said no transplant from this candidate.

Here’s the funny thing: I feel strangely relieved. It’s not that I was nervous about surgery or anything like that. It was just the waiting. I really detest the waiting. Hearing no certainly wasn’t as good as hearing yes, but putting an end to this chapter really does feel like a weight off my shoulders. Not that this whole thing is over, but at least there’s a course of action to be taken which is better than waiting for time to pass. My transplant center will select the next best possible donor and he or she will go through the same series of medical tests. Maybe there will be hitches again or, maybe not. At least having an answer and a course of action feels good to me.

It’s having that goalpost in front of me that keeps me moving forward. If the next step is within view and attainable, it makes scheduling my life around dialysis, its restrictions, and all the problems of kidney failure, tolerable. I can still see a light at the end of the tunnel, and after all, I think that’s what it comes down to. As long as I can see a possible solution to this problem, I can make peace with it. Although I’d like to think that if all the transplant opportunities were to go away, I’d still be able to find something that would keep me in a positive mindset.

I know my friend never expected it to turn out this way. And I know she hates that it did. But she shouldn’t and I hope she knows that. What she did by offering to donate a kidney to me was in and of itself an extraordinary gift. As soon as she knew my situation, she came forward and that is not an easy thing to do. I didn’t tell her of my situation in person, but with the people that I did tell face to face, I could immediately see in their eyes if they were going to volunteer or not. For those that didn’t, their eyes showed me the indecision, the fear, or hesitancy that was going through their minds. I KNOW they all wanted to donate but for a variety of completely valid reasons, they couldn’t. But for this friend and the others that said yes, and for my sister who donated to me the first time, the look in their eyes said everything, and I can never thank them enough.