Wait for kidney over--or was it?

Wait for kidney over--or was it?
Recap of emotions when receiving a kidney transplant looked possible

September 26, 2010 12:36 am

EVER SINCE I was a youngster, more years ago than I care to remember, I have had a strong dislike for roller coasters.

But some events on a recent weekend took me back to those days, with my emotions going madly up and down, and feeling as if I were rocking from side to side.

I suffer from end stage renal failure and do kidney dialysis nightly at home. I am on the waiting lists for a kidney transplant at two hospitals--Johns Hopkins in Baltimore and the Virginia Transplant Center at Henrico Doctors Hospital near Richmond.

I've been on the waiting lists for about a year. I have read and been told that someone with my blood type--O-positive--waits an average of five years or more before getting a transplant.

But sometimes, kidneys come more quickly.

On a recent weekend, my cell phone rang while my wife and I were running an errand. Pulling the car over to talk, I learned that it was Johns Hopkins calling to say they had a potential kidney for me if I was interested.

"Yes," my wife and I blurted out almost simultaneously.

The nightly dialysis treatments while I sleep are the best treatment option for me for now, I believe, but that doesn't mean I don't get frustrated being tethered by tubes to a machine for more than seven hours every single night.

So we were surprised when we learned there might be a transplant, which doctors tell me is my best possible treatment option.

I realize that a transplant is not a cure for me.

There is always a chance that at some point my body could reject the new kidney. Or conditions such as high blood pressure could damage the new kidney.

But a new kidney offers the hope of a life without dialysis--freedom from plastic tubing and a machine next to my bed nightly.

The Johns Hopkins representative explained that the kidney was from a man who died of head trauma. They still had some testing to perform, and would call me back to tell me if I needed to make the drive to Baltimore for the surgery.

We quickly finished the errand and hurried home. That's when the emotions started going up and down wildly in short periods of time--much like those roller coasters I can't stand.

There was excitement and hope. Just think, we noted on the drive home, if I get a transplant, that means I won't have to do dialysis every night. No more monthly lab work with what sometimes seems like endless tubes being filled with my blood.

No more monthly clinics with my physician, dialysis nurse and the staff there. While I've grown to like those folks a great deal, we all know the goal is a transplant.

Then there was nervousness and anxiety.

When we got home, we had to quickly take care of a multitude of chores in case I would get a new kidney and be in the hospital for the next 10 days or so, followed by frequent clinic visits in Baltimore.

Packing suitcases became a chore. I didn't need much because I'd be in the hospital for several days, then at a Baltimore motel while going in for checkups.

My wife, Carol, had to pack for the same amount of time away from home.

What about Bella, our black Lab, who may have the biggest heart and be the sweetest pet a family could have? We called a kennel to try to arrange for her to stay, not even knowing how long she would be there. We packed a bag for her with all of her necessities to last for 10 days to two weeks, in case the transplant went well.

During the day, my stomach began to churn, approaching nausea. The nervousness and lack of appetite weren't a surprise.

But it began to sink in that this would be a high-risk surgical procedure. While the doctors and staff at Johns Hopkins perform successful kidney transplants all the time, there was a chance I might not ever come home again.

That's when my emotions began to overflow. I couldn't bear the thought of never seeing my wife or children or grandchildren again.

DARKNESS, THEN LIGHT

More than once, I lost it. I went to my home office, sat down at my laptop and began to type notes to my wife and each of my two daughters.

What do you say to someone if it's the last thing you will ever say to her?

Having to stop several times to compose myself, I typed each note. When I finished, I told my wife where I'd left the notes and that they were not to be read unless the worst happened.

Emotionally, I think I've felt that bad only once--when my son in Kentucky died a little over a year ago.

My wife has been with me through ups and downs for almost 32 years, and this day was putting her on the same roller coaster I was on.

She was more of a comfort than she'll ever realize. She continued to remind me that the doctors in Baltimore know what they're doing. I'd be out of surgery sometime the next day and home in a few weeks, she insisted.

I made it through those dark moments, and began to feel hopeful again.

Carol was right. The surgery would go well and I'd be coming home with a new kidney. I was beginning to feel pretty good about the whole thing. The excitement was returning.

THE SECOND CALL

Johns Hopkins called a bit later. Unfortunately, the caller said, the kidney wouldn't be coming to me. That's all she said.

There could be several reasons I didn't win the "kidney lottery" that day. When they tested the kidney, they may have found that the organ wasn't suitable for transplant.

And while I was a potential recipient, there may have been another person who matched more of the kidney's genetic markers than I did. That meant he or she would get this kidney. I know that's the deal, and I accept it. And I realize there are people in far worse shape than I am.

AND NOW, WE WAIT

In the span of that 15-second telephone call, it was over. No trip to Baltimore. No need to find a kennel for the dog. No coming home and returning my dialysis machine to the supplier.

No life without tubes at night.

So we wait for the next phone call. It could come in weeks, months or years. We'll use this experience to plan better for the next time. We'll have bags packed and emergency plans made for the dog.

Maybe the next time, they'll tell me to come to the hospital and I'll get that new kidney. Or maybe they'll call back again to tell me it's not my day.

Whichever way it goes, when that call comes the damned roller coaster will start again.

Bill Tolbert is a news editor at The Free Lance-Star. He can be reached at
Email: btolbert@freelancestar.com.

As of last week, 108,609 people in the United States were waiting for organ transplants, according to the United Network for Organ Sharing. During the first half of this year, 14,139 transplants were performed. There is a severe shortage of available organs in the U.S.

To register to be a donor, visit donatelife.net. Click on your state to register. Or, Virginians can go straight to donatelifevirginia.org.

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