Reflecting on a Decade of Lessons learned in Organ Transplantation
‘Should a person who tries to commit suicide receive an organ transplant if needed?’
In 2009, during an informal conversation a friend posed this question to me. Little did I know that this conversation would spark a lifelong interest in organ donation. Without any thought or hesitation, I immediately said of course! Being a care-free University student at that stage, the idea of regulating who should and should not receive a life-saving organ was unfathomable to me. How foolish I was!
I’ve pretty much always known that I wanted to be an organ donor- without much thought or convincing needed, it seemed like the obvious thing to do; what would I do with my organs after death anyway? Perhaps my attitude towards organ donation was influenced by the feeling of immortality that every 21-year-old possesses. Either way, a decade later my decision to be an organ donor has remained unchanged. What has changed though is my perception, knowledge and aspirations within the organ donation environment.
If you’re new to the concept of organ donation let me start off by sharing a few basic facts with you (if you’ve ever spent more than 5 minutes conversing with me, I’m sure I’ve bored you with these facts already). Spoiler alert: future posts will focus on getting into the nitty-gritty details and trends in organ donation and transplantation.
The basic facts:
Firstly, the terms ‘organ donation’ and ‘organ transplant’ are not interchangeable:
Organ donation is the act of donating an organ to help someone (an organ recipient) who needs a transplant. This process is all about you, as the potential donor.
Organ transplantation is the surgical operation in which a failing or damaged organ is removed and replaced with a functioning organ. This process is all about what happens in the operating theatre.
Secondly, anyone can become an organ donor. I often hear people say: “Doctors won’t be able to use any of my organs due to my smoking or drinking”. This is not the case. It’s best to leave it up to the healthcare professionals (who will perform medical tests) to decide how viable your organs are for transplantation.
Thirdly, a potential donor may donate organs and tissues. Wait? There’s a difference between organs and tissues?! Indeed! A potential donor can donate several life-saving organs; heart, lungs, liver, pancreas, and kidneys. The donor can also donate tissues such as corneas, skin, bone, tendons and heart valves.
Donation Fact: You need not donate all of the above. You can choose which organ(s) or tissue(s) you’d like to donate.
Now that you’re aware of the basics, let’s jump back to the start of my organ donor activist journey…
In the beginning, my main focus was financial compensation for the kidney donor. In this context, financial compensation means that the kidney donor should receive some form of compensation for costs of travel, accommodation, loss of earnings, and future medical costs. To me, financial rewards made perfect sense. Naively, I was sure that this proposal would immediately lead to an abundance of donor organs and all of the patients with organ failure would be saved. Seems that I was wrong. I entrenched myself into developing a better understanding of the legal, clinical and public aspects of organ donation.
I soon realised that the South African environment still needed significant development to make this kind of proposal a reality. To ultimately improve the environment, it would be best to start at the foundation of the existing problems, solve these problems and then continue to consider other complex future solutions. I was clearly trying to do this the other way around.
Have I (along with other incredible people involved in this field) found one single solution to the shortage yet? The answer is no (unfortunately) but I’ve learned the following invaluable lessons:
Because organ donation and transplantation can’t be separated from the concept of death, we often shy away from talking about it. Few people are truly comfortable talking about or even thinking about death. We need to change this mindset. We need to talk, think and debate about organ donation as often as possible.
Improving the situation requires working together. Everyone, from the man on the street to the miracle workers within the health care services, needs to put their heads together to identify optimal solutions to overcome the shortage. The greater community needs to be involved. This will ensure that when we find the solutions, they will be accepted and embraced by every South African.
Awareness and education on organ and tissue donation are crucial.
Even though we live in the Age of Information, the organ donation environment is still rife with misconceptions. Awareness campaigns assist in making the public aware of the need for organs, this leads to an increase in the public’s preference to act as potential donors which ultimately leads to organs available for transplantation. At the same time, proper education should be provided to address any concerns a potential donor might have.
Indicating your choice to become an organ donor (by means of registration) is a good place to start, but you cannot stop there. In South Africa, your next of kin has the final say in donating your organs (I will elaborate on this in future posts). If your next of kin is not aware of your desire to become a potential donor, an opportunity to save lives may be lost. Do you see why it’s so important to talk about your decision? If you would like to learn more on the importance of making your wishes known, you can have a look at the ‘Tell Your Tribe’ campaigns we are promoting at Tell.
Organ transplantation doesn’t only irrevocably change the life of the recipient but also the lives of his/her family and friends. I’ve been lucky enough to have my path cross with organ recipients. They’ve taught me remarkable lessons on the resilience of the human spirit and the importance of a positive outlook on life.
The final lesson I’ve learned is that it is indeed unfathomable to regulate who should receive a transplant and therefore a second lease on life. But, due to the scarcity of organs, we presently have no other choice. Rest assured though that the allocation of organs is done in a just and fair manner (posts will follow on resource allocation in South Africa).
Chances are that I will continue to learn more lessons on organ transplantation as time passes. If you have enjoyed this little sneak-peak into my journey, you can follow me on social media here:
What was your first experience with organ donation and transplantation? The Patient Project would like to know! Share your experience in the comments section below.