"Organ donors are definitely heroes," they tell Megan Roantree.
Most of us assume that being able to save someone’s life is just a plot line in soaps and romcoms. But giving the gift of life is something all of us have the potential to do, by simply carrying a card and having a conversation. On average there are about 550 people waiting on a transplant in Ireland at any given time. Organs which are suitable for donation include the heart, lungs, kidney, liver and pancreas.
“My donor gave me a second chance at life,” says Jill, 29, who has cystic fibrosis. Sylvia, whose daughter received a transplant due to a rare liver disease, shared similar sentiments. “Maeve’s life was saved by the courage of a family who donated their loved one’s organs at one of the worst times of their lives.”
Sylvia’s daughter Maeve had health complications when she was born. “She went for the standard check six weeks after she was born. She had jaundice, and after some testing in Crumlin she was diagnosed with Biliary Atresia and a couple of other smaller issues,” Sylvia explains. Maeve had a Kasai (a surgery to allow for bile drainage) when she was just nine weeks old. The family had hoped that this operation would mean she did not need a transplant but later it became crucial.
“As she got older her liver disimproved,” Sylvia explains. “When she was seven she developed a lung condition which made her transplant urgent.” After being assessed in London in September 2010, Maeve was placed on a waiting list.
When she was on the list we had to always be ready for a call and the suitcase stayed in the car. Maeve continued activities and school, who were very supportive, but her energy was decreasing. We got the call at 10pm on the 9th of February 2011. The ambulance and guards arrived an hour and a half later and we were whisked away to Baldonnel Airport where the government jet was waiting for us. We were standing in the hospital at 2am.
Maeve was just seven when she had her transplant. “At 8am Maeve went into theatre and eight hours later the doctor told us it had gone well. She woke up in intensive care at 6am. The first thing she said was that she wanted Rice Krispies – her comfort food. We were so relieved to have our girl back,” Sylvia recalls. “We could see the improvement in her very quickly. We came home from London after 12 days and she was back in school by April. She was still tired but her recovery was phenomenal.”
Maeve, who is now 15, is doing great, and while she still visits the hospital four times a year and is on anti-rejection medication, she is also living a full and normal life of a teenager. Based on their experience, Sylvia helped set up an organisation which helps families going through similar experiences called Children’s Liver Disease Ireland. “We represent families with the hospitals, the HSE, the department of health and anyone else that we need to. We organise family days and provide information and practical help.”
Jill McElhinney and her twin sister Amy were diagnosed with Cystic Fibrosis shortly after they were born.
Every case is different, but the majority of people will find that with the natural progression of the disease that they will go down that road of needing a transplant. Amy was always the sicker one, but having said that I became quite ill quite quickly and it started to go downhill.
Jill was 22 when she went on the list and in 2013, when she was 24, she received her lung transplant. “I was the first lobar transplant in Ireland, which means that they basically cut the lungs to fit me. My donor was a lot taller than me but they were able to downsize and so I have lobes (parts of a lung) instead of full lungs.”
In 2015, it was her twin sister Amy’s turn to get her lung transplant. Amy had a TIPs procedure, where a shunt is placed in the portal vein to alleviate pressures and balance blood supply from the liver to her heart.
“Together we were the first set of twins to be transplanted in Ireland, I’m the first of my kind and Amy’s the first of her kind,” Jill reveals. Sadly, Amy passed away in 2017 due to health complications, but Jill reveals that her sister’s life improved ‘100%’ after the transplant. “Amy’s transplant was fantastic for her. It allowed her to go back to work part-time, go on numerous holidays, and enjoy being young and free without being wheelchair bound or oxygen dependent.”
Jill remembers how much she appreciated the little things after her own transplant. “Everything was different. Just things like being able to dress myself. Learning how to walk again was quite difficult as I was wheelchair bound for over two years. The most amazing feeling was being able to have a shower by myself, and not struggle or be breathless. Even blow drying my hair, it’s the things that people don’t even realise they are taking for granted.
Being able to lie in bed at night and actually lie down, instead of being propped up. Before the transplant, I went to bed every night with a bi-pap machine which is a non-invasive ventilator to give my lungs a break, so being able to be without the machine and no oxygen was just so freeing. Being able to take a big breath without struggling was amazing too.
It’s been an incredible but emotional few years for Jill in terms of her health, but another momentous occurrence last year was her engagement to Sean, her partner of five years. “It’s just such a huge achievement in my life to be able to get married, still I can’t believe it.
“For the majority of young girls it’s all they ever dream of, but I was never like that because I didn’t think I’d be alive to see that day. It’s huge for my family and to me, it’s monumental to be able to get married and experience all these things that I wouldn’t have gotten a chance to do without my donor,” she adds.
The couple will tie the knot on September 19th this year, which will mark six years since Jill’s transplant. “I was able to get my life back and meet my partner and we’ve so much to look forward to, so I am forever thankful and grateful to be given a second chance at life,” she revealed.
The Irish Kidney Association, which advocates for organ donation awareness, has stressed that having a conversation with your family is crucial as it ultimately makes the family’s decision easier at such a terrible time. “Imagine if a relative of yours was very ill and needed a transplant. It can happen to anyone,” said Maeve’s mum Sylvia. “There are a very limited number of circumstances where it would be possible for your organs to be donated. Make it easy on your family by letting them know your wishes. The organ donor card will only start the conversation. The family need to know and understand your wishes.”
Jill reiterates by explaining that the more we talk about organ donation, the more educated and prepared we can be in these situations.
I always tell people, you may not need an organ donation at this time in your life but you never know when you or a loved one will, and if you’re willing to receive one you should be willing to give one. Discussing your wishes with your loved ones means that in the event that something tragic does happen, your legacy lives on. One person can save up to eight people’s lives – that’s just incredible. They are definitely heroes because they have given others a second chance at life.
To sign up for an organ donor card, free text the word DONOR to 50050