So for those who are just tuning in – I’m donating a kidney. This is the 2nd installment in my experience as a series of blog posts. This one will focus a little bit more on what’s entailed with the screening process and my goal is to inspire more people (minimally) to sign up to be organ donors upon death.
In my case, this is the second time I’ve been through the screening. I started the process three years ago and underwent all of this same testing. My intended recipient actually had her kidney function increase around the time I went through initial testing. As a result, we delayed the donation. Recently, her kidney function deteriorated to a point where she is both on the list and in pretty bad shape.
There are a number of requirements in order to be considered both a donor and a recipient. To be a recipient, you must be on the UNOS (United Network of Organ Sharing) recipient list: https://unos.org
Getting on this list has a set of requirements. These include regulating the severity of organ failure before you can be placed on the list. The list requires you to be a certain amount of ‘sick’ before you can be considered for a deceased (or living) donor organ. There are also limits to HOW sick you can be and remain on the list. This is to ensure that a recipient has a decent chance of surviving the transplant surgery.
There are many ethical, moral, and scientific considerations in the creation, maintenance, and administration of the organ donation process. My biggest take away from learning all of this is that living organ donation is the single greatest opportunity we have to:
⁃ Save more people
⁃ Reduce the wait time for recipients to receive an organ
⁃ Improve the overall health of these patients and longevity of their lives
In rough estimates, there are 100,000 people on the kidney recipient list. In any given year fewer than 20,000 people receive a kidney (these are ballpark numbers). Many of these come from deceased donors (donors who have selected to be organ donors on their drivers license). There are also a rotating number of people added to the list each year and taken off the list because they had to wait too long and are now too sick to meet the criteria to receive one.
The average wait time varies by state and region (although UNOS is considering adapting the “hard” state line rules for a more regional approach). In all cases though the wait time is measured in years.
Years.
During the wait, these patients are continuing to fight their diseases and conditions causing additional stress and strain to their already taxed systems. In many cases of kidney disease, people are forced to begin dialysis while waiting for a transplanted organ. Dialysis is incredibly difficult on the system in addition to being incredibly time consuming. Patients who receive a transplant prior to starting dialysis are typically able to lead healthier lives and live longer with their received organs.
I learned all of this during my testing and screening process. The process goes something like this:
1. Complete a basic medical and family history screening with the transplant hospital team.
2. Complete basic health screenings from your regular doctors and forward results to the transplant team. For me these included a Pap smear and a 24 hour urine collection and blood draw along with blood pressure and vitals – depending on your age and gender you may be asked to complete a colonoscopy and mammogram as well)
If these basic tests come back within the normal to healthy range, you will likely be asked to schedule the more comprehensive testing. Because I live out of state, they set up ALL of my testing to occur in one day at the hospital (and they did a FABULOUS job with ensuring I was able to complete everything in that time and with excellent care – probably the best care I’ve received from the healthcare system).
What did this marathon of a day include?
⁃ Meeting with my Donor coordinate (this is the person who’s in charge of your whole process. They schedule and well – coordinate – all the tests and requirements.
⁃ Meeting with my Donor Advocate. The donor advocate’s sole job is to protect the donor. They ensure that you’re doing this of your own free will, that you have the right support system, and overall health profile to ensure you’re not at an unacceptable level of risk as a result of this process or donation.
⁃ Meeting with a social worker. The social worker makes sure you will have the financial resources and ability to donate in addition to the personal family and friend networks to provide adequate care for the procedure and recovery.
⁃ Meeting with the surgeon who will be performing my surgery (remember there are 2: the donor’s and the recipient’s). He explained the surgery and techniques used as well as the risks and benefits. He also covered the recovery process.
⁃ Meeting with the nephrologist (kidney doctor). He also explained the risks and benefits. The nephrologist also completed a physical exam and covered my medical history again. He ordered additional blood and other testing based on our discussion
⁃ I had an EKG
⁃ I had my blood drawn (24 vials)
⁃ I had a chest X-ray (to ensure I don’t have tuberculosis)
⁃ I had a CT scan with contrast to get the image of my kidneys (this is done to check size, placement of vessels, existence and location of any stones, and other factors that can affect the choice in which kidney is selected
While this was a long day, the overwhelming message was that I needed to be well educated about the risks, the process, and every staff member checked to ensure I was interested in donation of my own free will and knew I could back out at any time.
It is important to remember that the recipient must also undergo extensive testing. This testing can sometimes take much longer for the recipient as they are contending with a disease that can impact their ability to be tested at any given time.
I am now waiting the results of my testing. Even if it turns out I’m not a suitable candidate for some reason, I’ll have a lot of very comprehensive testing done. Did I mention that all of my testing is 100% covered by the recipient’s insurance? I pay absolutely nothing out of pocket aside from missed time from work and mileage to/from appointments. There’s also the NLDAC (National Living Donor Assistance Center) which has grants to help with those costs as well as lodging.
If you’re interested in learning more, go check out: https://www.organdonor.gov/about/process/living-donation.html