With National Organ Donation Day having just passed on February 14th, I—Dave, the blogger—thought I would not only relay some general information on organ donation and the importance of registering as an organ donor, but also share my own personal experiences with organ donation and the profoundly positive effect donation can have on someone else’s life.
On the morning of March 20th, 2012, I woke up in a recovery room and, according to my wife, immediately began teasing the on-duty nurse about which flavor of popsicle I would be getting (there was only one—cherry). That moment of joviality in the recovery room marked an endpoint to a serious process that had begun a year earlier when I received a call from my older half-brother Karl.
Karl had end-stage renal disease—in other words, his kidneys no longer worked. In fact, one of his kidneys was functioning at 12%, while the other barely worked at all. This meant that Karl needed dialysis 3 times a week. Different people react differently to dialysis. In Karl’s case, he found it to be a particularly painful and exhausting process that would require an entire day of recovery—and so it went: dialysis one day, recover the next, dialysis one day, recover the next…
By the time Karl called me, he had been following that routine for 4 years, and his long-term prognosis was not good. Without a kidney transplant, he had 2, maybe 3 years left, and he was wondering if I would consider donating.
I spent several days thinking it over, discussing it with my wife, and discussing it with the transplant team that would be performing the operation, and decided I would at least give it a try (because, who knows, maybe I wouldn’t be a match). A few months later, I began the screening process for living kidney donation.
Every year, the number of people in need of an organ transplant far exceeds the number of organs available for transplant. In September of 2020 alone, there were approximately 109,000 men, women and children on the national transplant waiting list, while in all of 2019, only 39,718 transplants were performed nationwide. In fact, according to the Heath Resources & Services Administration (HRSA), on average, “17 people die each day waiting for an organ transplant.
Deceased organ donation—how it works
For most people, deceased organ donation—that is, donating to people with end-stage organ disease when you die—is the obvious choice. Major organs that can be donated after death include heart, lungs, liver, pancreas, kidneys and intestines.
Determination of candidacy: Because blood and oxygen must continue to flow to a person’s organs to ensure viability until they can be transplanted, in general, deceased organ donors are people who have sustained some sort of fatal brain injury, such as from an accident, stroke or brain aneurysm. Medical teams will always do everything that they can to save a patient’s life, but sometimes injuries are too severe and there is a complete and irreversible loss of brain function. If this is the case, physicians will perform a series of tests to determine if the patient is brain dead.
Clinical death is declared: Brain death occurs “when the brain is totally and irreversibly non-functional.” A person who is brain dead cannot recover. Once brain death has been determined, the patient will be declared clinically and legally dead.
Finding a match: At that point, organ donation becomes an option, and the donor will be put on artificial or mechanical support, which keeps blood and oxygen flowing to the donor’s organs. The hospital will then notify the local Organ Procurement Organization, and the process whereby potential candidates from the national transplant waiting list are matched to the donor will begin.
Transplantation begins: Once matches are located, transplant teams contact the wait-listed patients, organs are recovered from the donor and sent to hospitals for transplantation, and the transplantation procedure begins. With the exception of the kidneys, which can remain viable for up to 3 days, most organs need to be transplanted within a matter of hours. As a result, the entire process—from death of the donor, to the location of the candidate or candidates, to the actual transplantation—usually occurs quickly, within the space of a day.
The important words in the preceding list are “matches” and “candidates” in that, according to the HRSA, 1 deceased donor can donate up to 8 organs, potentially saving up to 8 lives. The nature of injury and/or illness that leads to brain death is generally sudden and unexpected. The fact that one person’s life, through donation, can potentially save the lives of several other people is often one of the biggest sources of comfort for those grieving the sudden loss of a loved one.
Living organ donation—what I learned about the donation process
The living donation process differs from the deceased process in 2 key ways: first, the donor and the recipient generally know each other; second, it is a much slower and methodical process. What follows are some key takeaways from my own experience in being a living donor.
You get the world’s best physical: When you make the decision to become a living donor, it seems obvious that the transplant team is going to make sure you’re healthy first. Still, I was unprepared for the number of screenings, which included: a complete blood panel, urine tests, cognitive and psychosocial evaluation, MRI, EKG, chest X-ray and many more. By the beginning of 2011, and as the date of the surgery neared, I at least knew I was very healthy!
You don’t always need to be a match: Although Karl and I were are good match, living donors do not always need to be a match with the recipient. With paired-organ exchange programs, transplant centers will often help one donor/recipient pair find a match with another donor/recipient pair—the organ from donor 1 then goes to recipient 2 and vice-versa.
You can opt out at any time for any reason: If at any time during the screening process you decide donation is not for you, you can opt out, and the transplant team will provide a medical reason for your decision.
The idea of donating was scarier than the actual process: I realize this is subjective, but I was far more worried about my outcome—and any possible complications—a year before the surgery than I was on the day of the surgery. There were two reasons for this shift in my attitude: first, and as previously mentioned, the transplant team spent an entire year (and I assume a lot of money) making sure I was very healthy and that the donation wouldn’t have a profound impact on my life going forward; second, the transplant team was incredibly transparent regarding every step of the process. I always knew what was happening and why—what tests were being performed, how far along we were in the process, the different steps of the transplant procedure, etc. Sometimes less information is good, but in this case, being informed gave me a sense of control that helped ground me throughout the yearlong donation process.
You’re not just saving a life: Something I realized pretty early on in the donation process is that, for most people who are in need of a transplant, quality of life is not good. When you donate an organ, you are not only increasing the length of the transplant recipient’s life, you are greatly improving the quality of it. I will never forget how happy my brother Karl was on the day his dialysis shunt was removed and he knew he wouldn’t have to go through dialysis again.1
You can make a difference—how to register as a donor
The HRSA notes that 90% of U.S. adults support the idea of donating an organ, but only 60% are signed up as donors. That 30% disparity may not seem particularly big, but when you consider that on average only 3 in every 1,000 people die in a way that allows for organ donation, the importance of reducing that disparity becomes clear.
There are two ways to register: You can register at your local motor vehicle department (this is perhaps the most common), or you can register online. Online registration only takes a few minutes and all you need is some identification information and your driver’s license or photo ID number. To register online, click on this link: https://www.organdonor.gov/register.html. For more general information on organ donation, click here: https://www.organdonor.gov/.
It has been almost 9 years since I donated my kidney to Karl. In that time we have gone on trips together, spent holidays together, and made bad jokes about my kidney together (Karl will walk toward me sideways, transplanted kidney facing forward, and say “It’s trying to go home!”). Indeed, we have a much closer relationship than we did before. Perhaps most importantly, for the past 9 years Karl’s life has been “normal,” which is what I assume anyone with a chronic illness wants—a return to normal.
- A dialysis shunt is an implanted tube that is attached to a blood vessel in your arm. The tube is connected to the dialysis machine, which effectively cleans your blood.