Real Talk 10th December 2021 by Amie Edmonds
How To Save A Life: The Importance Of Organ Donation
And one STELLAR reader shares her amazing story.
Have you ever really thought about organ donation? Most of our experiences are thankfully limited to TV shows – watching a candidate with a failing organ waiting desperately for a transplant on Greys Anatomy, and feeling awful for them that someone else has to die for them to live. But have you actually sat and thought about your own wishes for your body after your gone? Or what you’d do if a loved one needed a vital piece of your body, be it stem cells, bone marrow or a kidney?
My own experience is quite limited. Years ago, my aunt received a kidney transplant, which, unfortunately, didn’t go to plan. Since then, she’s been waiting for a kidney and undergoing dialysis treatment on a weekly basis while she waits.
Of course, not everyone who needs an organ transplant will be able to wait on a list for as long. This includes Rachel, who was given a heart transplant at six months old, after being born with Tetralogy of Fallot, a congenital heart defect. “It is crazy, but as a baby I bounced back definitely more quickly than my second operation when I was twenty, that’s what my family said. My mum remembers walking up and down with me in the pram and if she hit a bump I would cry, she soon understood why and realised I was in pain from the sternotomy, which was the incision in my chest and how they had cut open the breastbone. My parents didn’t get any sleep for a year, let’s put it like that!”
Continuing, Rachel explains that at the time she wasn’t given a full organ, but had to undergo a heart transplant 20 years later. “Unlike other transplant patients who receive full organs, I received only a small piece of tissue that is treated to make sure the body does not reject it. In comparison to solid organs, tissue from organs can be stored longer.
I don’t think my family really thought about the significance of it until I was older as at the time they were so focused on me having the surgery and surviving it. It was quite a complex procedure in the 90s.
“Due to advances in medicine and science, I didn’t require a heart transplant when I was twenty. My valve was severely leaking and damaged which was having a major impact on my life. I could hardly sleep, I was dizzy, my breathing was laboured and I was hardly able to walk. I had a Pulmonary Valve replacement in 2012 in the Mater. The operation was 11 hours and they actually took animal tissue this time from a pig as it’s the closest to a human and it is also treated to ensure the body doesn’t reject it.”
In 2020, there were 90 donors in Ireland, with a total of 190 organs being donated, according to the HSE. Thanks to those 90 people in just one year, so many lives were saved, showing the utmost importance of signing up to receive an organ donor card.
According to the HSE, a person’s organs can be donated after a brain stem death, meaning that there is no blood flow or oxygen to the brain, so the brain is no longer functioning and unfortunately, there is no hope of recovery. Donations can also be made after a cardiac death, which happens after an illness or injury from which a patient cannot recover.
While the decision to donate a loved one’s organs is often made at a heartfelt time, full of loss and sadness, it not only saves lives but can often help with the healing process itself. Knowing that your loved one has helped to save the life of someone else.
Rachel shared with STELLAR that even though she was so young when she underwent her first surgery, she was always conscious of it. “I was always aware of my heart condition. I mean I had a massive scar down my entire chest it was hard to miss and I had yearly checkups in Crumlin Children’s hospital. Funnily enough, the dentist was always extremely important because when you have a heart condition bacteria can travel from your gums through the bloodstream to your heart lining causing serious issues. I had seven stainless steel crowns fitted to my teeth to protect them. So as a child I always knew I was different!”
For those with invisible illnesses, any illness or condition that is not outwardly obvious to others, it can be an isolating experience at any time.
However, Rachel explains how this was heightened through the pandemic. “I set up my advocacy Instagram page @i_wheeze_alot during the pandemic when we were in lockdown in 2020 because I felt people needed to understand invisible illnesses more. High-risk individuals were being told to stay at home and were advised to cocoon which was hard mentally so the page was a great outlet for me. Unless I actively show my scar no one would ever know I had two open-heart surgeries and will require more surgery in the future. It is very cathartic too, I can express how I feel, having an invisible illness is heavy. Again, people can’t see it so you don’t know how someone feels day to day, I could never find any support so I decided to set up the page and highlight it. I love it!”
Currently, there are approximately 590 people waiting for an organ transplant in Ireland alone, including patients on dialysis awaiting kidney transplants and patients waiting for lung, heart and liver transplants.
The sad facts are that you never know when you or a loved one may need an organ donation or any point in your life. Many people are of the opinion that if you would be happy for your life to be saved in this way, you should also be happy to save others.
Currently, the organs that can be donated in Ireland are the heart, lungs, liver, pancreas and kidneys, and one person donating their organs can save up to eight people’s lives. While it’s not the kind of topic that may come up in an everyday conversation, the more we do discuss it, the more educated and prepared we will all be if it ever happens in our own lives. It’s just as important as ever to have these conversations with your loved ones about organ donation to ensure that your and their wishes are known.
To sign up for an organ donor card, free text the word DONOR to 50050. There is also a virtual organ donation app.