If disappointment strikes…

In the previous two posts, we’ve covered what to do if you’re diagnosed with end-stage renal disease (ESRD). You discover your kidneys are failing and that dialysis is necessary to keep you alive. Ultimately, however, you want a kidney donation—preferably from a living donor—in order to free yourself from 12 hours a week on dialysis and return to your normal, healthy life.

But suppose you’ve done everything prescribed to arrange for a living kidney donation…and then find out that your potential donor doesn’t match you well enough for a transplant. This often happens, and it can be terribly disappointing, but try not to let it discourage you. The next step is to work with your doctor and transplant center to enter a paired-exchange program. This is when a pair of incompatible donors exchange kidneys with another pair of incompatible donors so that the most genetically compatible kidney is given to each recipient. Though recipients don’t directly receive kidneys from their original donor, all parties get what they want—donors give and recipients receive the gift of life.

Sign up for the Surviving Kidney Disease newsletter.

Most transplant centers have their own paired-exchange programs, and there are national programs as well. Be sure to inquire about them, and also take the extra step of looking them up on your own. Paired exchange, while not an immunological breakthrough, has been one of the greatest advances in kidney transplantation in recent years.

There is, however, a caveat. Your initial prospective donor must agree to participate in a paired exchange program, knowing that they may never meet the person who receives their kidney, but at the same time their intended recipient will get one. Most donors readily agree to this.

So, now you’re listed for a transplant from a deceased donor, and you also have a donor in the mix for a paired exchange. But why stop there? Other potential donors may connect with you, as well. Any one of them might be a good match, so repeat the same procedure you did with the first potential donor—work-ups and evaluation in coordination with your nephrologist and transplant center.

You may find the perfect match with donor number two, and never look back. Or, donor number two may not match you but is also willing to enter the paired-exchange program. I’ve had patients with several potential donors, all of whom agreed to participate in paired exchange. As a recipient, this only increases your odds of receiving the best possible living kidney donation. And it also extends the gift of life to other kidney patients—the ones who are a match for the donors you have brought to the paired exchange program.

So, remember: Kidney disease is a debilitating illness, but it doesn’t have to be a death sentence, or even a dialysis forever sentence. Don’t panic, remain hopeful, communicate your concerns, educate yourself, make your intentions known, comply with a strict lifestyle regimen, get listed, get vocal, and find a living donor.
That’s how you get a kidney transplant.