I started this blog in 2006 and shortly afterward a very generous woman offered to donate a kidney to Jenna. The surgery was in Jan. 2007 and both Jenna and her donor recovered well. Now, 4 years later, we are once again learning about options. It was just over a year ago that Jenna experienced a rejection episode that knocked out about 83% of her kidney function. She has been stable ever since, and we are hoping she can stay that way for some time, but the doctors warned her that an infection or flu could damage the remaining function, so she is working on getting wait listed again.
Patients can choose to pursue a living donor or deceased donor transplant. We hope Jenna can find a living donor, as the wait time here in Los Angeles for a deceased donor transplant is now 10 years.
Things have changed, even in the few years since Jenna's transplant. Back in 2004, when she began dialysis, she also began the process to get listed on the national UNOS wait list. Patients are now eligible to get evaluated BEFORE beginning dialysis, and perhaps avoid it altogether by getting a preemptive transplant.
Years ago nine people stepped up to be tested as donors for Jenna, but none were found suitable. Now, if a patient has a willing donor who is not a match, there's still hope. The National Kidney Registry allows transplant centers to register donors and recipients directly in a database and participate in multi-center paired exchanges or "swaps." Since 2008, the National Kidney Registry has become the most productive paired exchange system in the world, and to date has facilitated 240 transplants. UCLA and USC are both enrolled in the registry. There are a couple other smaller paired donation programs, and UNOS has also begun a pilot program that is in the infant stage.
Another new option for patients is a desensitization program available at a few transplant centers. In the past patients with high levels of "anti-donor" antibodies have had little chance of receiving a donated organ as they would reject most donors' tissue. Now they can go through treatments to change that antibody status. At the Cedars-Sinai Transplant Center, this innovative procedure -- intravenous immunoglobin (IVIG) therapy with Rituxan added -- is being used to give new hope to kidney failure patients.
Something that may reduce wait time for a patient who is waiting for a deceased donor organ is multiple listing. Multiple listing involves registering at two or more transplant centers (at different procurement areas.) Since patients at centers local to the donor hospital are usually considered ahead of those who are more distant, multiple listing may increase the chances of receiving a local organ offer.
The steps along the way can be a challenge. We've learned so much over the years, but it's constantly changing. The kidney disease world is evolving, and the improvements leave us feeling hopeful about the future.