Diane of the National Kidney Registry called me last Friday to see how I was doing. Getting a little nervous, I admitted. But also excited. I couldn’t help asking about the kidney chain they are developing with their state-of-the-art transplant algorithms. It is six deep and involves five states. Plans are in the works to use a bridge donor to extend it to another cohort of donors and recipients.
I’ve always thought how this is worth doing for the sake of the recipient. To start a whole chain? Talk about icing on the cake!
“I didn’t know it was this far along.”
I had just told Mary Beth that our meeting the next day, September 1, 2011, was described by the social worker as “a meet and greet with the transplant team.” My wife knew we were going to the hospital to see a doctor, nurse and social worker, but apparently “transplant team” sounded a little presumptuous for her at that point.
“I thought they would want to know if the spouse agreed with this.”
The reality of what we might be in for hit me more deeply the next day, as we walked down that first long corridor in the medical center. This was now less virtual, more physical.
For the recipient’s confidentiality, the transplant center and their staff is not being identified here, though I would love to credit them. They have been terrific. The head doctor visited with us for 75 minutes. He explained the need for patience, as they do not rush the process for live donors. Mary Beth immediately expressed her support for this.
I was reassured when I heard the doctor talk about his working relationship with Garet Hil, head of the National Kidney Registry. He had provided Garet with consultation and found him to be very selfless, generous, and open. Until then I had an unfounded concern that the hospital might not have taken seriously my intent to go through NKR. The doctor said once the workup was complete, they’d let NKR know they had a donor ready to go, and then NKR would work on the chain.
The doctor explained the procedure as he drew this diagram.
The little diamonds show where three or four pencil-sized laparoscopic instruments with miniature lights and cameras go into the abdomen, which is inflated with CO2 gas to provide room to work.
The short, tiny parallel lines show where the vein, artery, and ureter are stapled shut. Since these tubes are longer on the left kidney, that is usually the one removed. No knife is used. It is a bloodless procedure. Once disconnected, the surgeon reaches in through a two-inch incision and pulls out the fist-sized kidney (that step I had read earlier online, another moment when the reality of this had sunk in deeper).
In the recipient, the old kidneys are left in place, and the new one is placed lower, near the intestines.
The doctor explained that of the hundreds of kidney donations they have handled, only a handful involved any complications. From memory he explained each of these five that had a major issue. None of them resulted in any lasting negative consequences. That sounded good!
I asked a question my older daughter had once asked. If she donated as a young woman when she did not have high blood pressure and was not overweight, and then had such issues later, would it be a problem that she only had one kidney? It would not be, since she is Caucasian, he explained. But as doctors tend to do, he added that she should in any event live a healthy lifestyle.
One of my brothers also had a question. Would my family members, like myself, be put at the top of the waiting list if I donate and later a kidney is needed? No, he said, it’s an example of how we can’t give our children everything. If they need one later, we’ll see what can be done then. Perhaps by then, stem cell progress might have resolved such needs.
After meeting with the nurse, signing releases, and getting a packet of information, we met at last with the social worker. They no longer required a psychologist-administered psych evaluation. However, the social worker asked so many questions about where I had lived and worked, what work I did, where I went to school, my early family, etc., that I wondered why she was so interested in such obscure things.
But I realized by the time she was done, she had my complete life story. As Mary Beth confirmed later, that was the idea, and part of the evaluation.
The social worker emphasized my option to back out at any time. I had known from donor blogs that we get told that a lot. She asked what might cause me to change my mind. I could only think of unforeseen events like a diagnosis of cancer or if my wife would start freaking out about this.
At this point, at the end of the day at the transplant center, Mary Beth said that she was fine with my doing this, and in fact a little proud of me. Maybe she was no longer hoping I would fail the tests.