Monday, November 15, 2010

Waiting for the Phone to Ring

Dan pointed to his legs and said, "How come my ankles are so swollen? I can barely get my shoes on."

We're on a trip together with our wives, far away from usual medical care, so I had to do some quick thinking, which isn't necessarily easy to do being retired. "Dan, the most common cause is just varicose veins and having your feet down, plus not doing much walking. We all get some leg swelling. Just wear some support stockings."

In the back of my mind, I was a little worried about blood clots which can occur in this situation, but since both legs were equally involved I didn't think that was likely. What I didn't think of was kidney failure. Even after we returned home, it wasn't until some blood tests were run several weeks later that Dan called me, "Jim, my numbers are off the chart and I have only about 17% of kidney function left."

Dan's kidney doctors couldn't really pinpoint the cause of his small shrunken kidneys, except that it looked like they had begun to fail years earlier, perhaps even from a childhood illness. He was prescribed diet and medications, but the kidney function continued to decline. Dan, now 72 and his wife Sarah began to have long discussions with the personnel at the kidney center about his options. Sarah, a retired RN, pitched in with knowledge and support but there were so many unknowns.

Finally the day arrived when Dan needed to decide about dialysis - hemodialysis versus peritoneal dialysis. But would that be permanent or could he qualify for a kidney transplant? From the start he was told that he was a little old, but he might qualify for a kidney transplant if the rest of his health was excellent . To ensure this, he had multiple prostate biopsies to rule out cancer, a heart catheterization, lung testing, and a full body CT scan. All proved OK, so he was entered on to the waiting list for kidney transplants. The kidney center staff explained to him that over 80,000 people in the USA are waiting for a life-saving kidney transplant, but sadly about a third of these die while waiting.

In the meantime, Dan opted to begin peritoneal dialysis at home. A vascular surgeon carefully and expertly placed a plastic tube with multiple perforations into the abdominal cavity leaving one end protruding from the abdominal wall. A saline type solution (several liters) would be allowed to flow into his abdominal cavity, sit a few hours, then drain out. He developed a schedule with an automatic pump that would allow a big portion of this to occur over night. Although this tethered him down, he was even able to travel to Hawaii for a few weeks since the same support and service existed there.

But the wait for a kidney had begun. The genetic and blood type testing were now known and he was on the national list. One day Dan heard from a well meaning friend that he could fly to a country like India and receive a transplant. Dan saw that there were both ethical and medical issues around this "option." He had heard of poor people being paid for organs and knew that that was illegal in the United States and most countries. The medical concerns about quality and care were secondary. The option of going abroad for a transplant was immediately put aside because Dan simply felt it was immoral.

Two friends offered to be live donors. This floored Dan. Would he have done the same? The friends were evaluated but didn't have the right tissue match or blood type. So the wait continued. Dan and Sarah's strong faith and family relationships helped, but it had been a year now. One night at about 14 months they got a phone call to be ready, there was a possible donor. They waited several hours, but when the donor's organ was removed the kidney was in poor shape and not acceptable for transplant. The wait went on. Dan was discouraged, he felt OK but not great. The legs were beginning to have numbness despite vitamin therapy. The emotional drain of waiting was wearing. But Dan said, "At least we have hope!"

Finally the call came. Dan relayed it to me, "We're heading into the hospital. A kidney is coming from somewhere, and I may never find out where or who, but I'm so grateful that they've given me a chance." The operation took place that night and went well. He was out of the hospital in a few days, but loaded up with protocols to prevent rejection.

Dan's post operative course was tough, given that he had two severe infections with very pesky viruses, CMV and BK. These nasty bugs bedevil transplant patients and require high doses of pretty toxic drugs. Dan and Sarah hit a low point here. All this effort and now feeling so sick. After nearly six weeks, the viruses finally cleared and haven't recurred. They dodged another bullet.

Recently Dan got a letter from the organ donation coordination team. Would he like to write an anonymous letter to his donor's family telling them of his experience and what it means to him. Dan is trying, but finding it very hard to express the deep feeling of gratitude and the surrounding emotions. But I'm sure he will write the letter - but not without a struggle.

Comment: Dan and I recently signed up to be volunteer advocates for organ transplantation and we were invited to an appreciation dinner. I'm a recipient of two partial corneal transplants so it's also a personal journey for me. At our table was a heart transplant recipient and his wife, an oncology nurse. Across from us were a husband and wife, I'll call Joe and Sue. Sue was a PhD education consultant who traveled all over the world. Joe was a Microsoft programmer who was just four weeks post surgery. He was a volunteer anonymous kidney donor. Somewhere he had read an article about the need for kidneys, and he felt at age 38, "Why not be a donor?" He had no idea who the recipient might be, but said some day he would like to meet him or her. Sue beamed as Joe talked. She supported Joe, but said it wasn't something she was prepared to do herself. She felt both worry and admiration for her husband.

Dan didn't know quite what to say. He looked at Joe and said, "You know, I'm a kidney transplant recipient. It's a great thing you've done."

There were presentations that night from various members of the organ recovery and transplant teams. The CEO spoke about their mission and focus, then the various members of the team outlined their roles. All gave their thanks to the volunteers. On the way out, a man remarked to me, "You know this is the first gathering I've ever been to where every last person was selfless." If you want more information or to sign up as a donor please contact Donate Life America.

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