Families urged to talk about organ donation

The decision on donating a loved one’s organs is so much easier to make if those involved have already discussed the issue, writes Jessica Casey

‘WE ALL think if we’re on the donor register and we have the cards, we’re covered. In reality, we are more likely to need a transplant than to donate,” says Emma Corrigan, Organ Donation and Transplant Ireland co-ordinator.

In her role, Ms Corrigan meets with families who find themselves in intensive care units and emergency departments, unexpectedly facing the loss of a loved one.

“A lot of these situations are sudden and absolute tragedies. They didn’t expect to sit in that room, they didn’t expect to get that news.

“Nobody knew this would happen to them.”

Last year, 233 transplantations were carried out here from 81 deceased donors, according to figures available from the Irish Kidney Association. Without the consent of the donor’s next of kin, these transplants would not have been possible.

Research from the UK suggests families are much more likely to give their consent to organ donation if they know their loved ones wishes, according to national projects manager with the Irish Kidney Association, Colin White.

“In an intensive care unit after you have been declared brain stem dead, your next of kin will be approached. If you have had that chat, it makes it so much easier for them.”

Most organ donations are from donors who have been declared brain stem dead, according to the HSE.

Donations can also take place after a cardiac death and certain organs like kidneys can be donated through a live organ donation, usually involving a family member.

One donor can help several people, as a single donor can choose to give a number of organs like their kidney, liver, heart, lungs, small bowel and pancreas and tissues like corneas, bone, skin, heart valves, tendons and cartilage.

Families facing the loss of a loved one can feel totally powerless, says Mr White.

“A common feeling is ‘I wish I could do something’. It’s a great legacy to leave your family. I have known families who have lost a loved one, but the lives of two or three or four, even five people have been transformed,” he says, adding donor recipients are particularly grateful around celebrations.

“People are aware, this is another Christmas I get to enjoy with my loved ones because of the generosity of a complete stranger.”

And organ donation has a ripple effect, he said, with the lease of life given to the next generation when recipients go on to have children, and for the children get to spend more time with a parent after they receive a transplant.

“When you work with people who are chronically ill who are given a second chance and you witness that, it’s incredibly profound. So many inspiring stories, and equally heartbreaking ones, but the joy you hear when they’re got the call, the joy they feel when they’ve been given that gift.”

It’s a privilege to work with the families of organ donors, says Ms Corrigan.

“They are sitting there and their lives have changed irreparably in just a day and while they are sitting there, they decide they can help strangers, completely altruistically — yet we can’t help them with their loss. They change lives forever, in such a positive way. The families are phenomenal.

“Parents dealing with losing their children — there’s no words. They feel they want something positive to come out of it. Very quickly they’ll say things like, ‘He’d a good heart, I want his heart to go to someone’.”

Next year, it will be 50 years since the first human heart transplant, according to Gerry Scully, secretary of the Irish Heart and Lung Transplant Association.

It can almost be like a raffle to get a match for those on transplant lists, Mr Scully said, adding that patients can have their expectations raised to go on to be bitterly disappointed.

“As it is now, you can come up in an ambulance, with whistles and bells, to get there to be told you’re not suitable.”

In countries like Portugal, Belgium and Switzerland, an opt-out system is in place, where those who do not wish to donate their organs instead opt out of any potential procedures, he said.

“It’s grand having the organ donation card, but you need to have the conversation about your wishes with your family. At the end of the day, your family has the final say.”

However, organ donation is not right for every family, Ms Corrigan said.

“It’s an option, it’s putting that option to the family. For some people, a no is right for them and that’s absolutely fine. It’s about allowing people and families to make that decision themselves.”

But if you do wish to donate your organs after you pass away, having the conversation with your family is pivotal, Ms Corrigan says.

“People have to talk about it. It makes such a difference to a family in an acute tragedy.”

The Irish Kidney Association is encouraging families to talk about their wishes.

“Our core message is when families get together over the festive period, have the chat.”

‘It’s finding a positive in such a horrific situation’

“When I was 20 weeks pregnant, at the 21 week scan when you’re wondering if its a boy or a girl, that’s when we were told we were in trouble.”

Clidhna Costello remembers when she was told her five-year-old son Tadhg McElroy wouldn’t be viable with life. “When he was born and we heard him cry, we were shocked,” she says.

But it wasn’t long before Clidhna and Tadhg’s father Terry McElroy were told their son was extremely ill.

“We were told one of his kidneys had burst and the other one was on the way out.”

Their son’s life was saved when a catheter was inserted when he was three days old. Tadhg then went on to start treatment for dialysis at six months old.

“We spent so much time in the hospital, we knew the nurses and the taxi drivers who were bringing us there better than our own friends,” says Ms Costello.

When her son was one and a half, Ms Costello started looking into the screening process for live donor kidney transplants.

When she got the phonecall to tell her she was a viable match for her son, the nurse asked her if she would need to take some time to consider everything before proceeding.

She remembers laughing and telling them — “‘I don’t need to, can we just move on?’ I just broke down in tears, I couldn’t believe it.” However, she says her family had heard about others going through the process for over a year to be told they could no longer proceed as a match wouldn’t be possible.

“We were well aware it could be pulled out from under our feet,”she says.

Leaving her son in Temple St before the procedure was the worst, she says, adding that the procedure was “very scary, very sore but it worked”.

“If you saw Tadgh today, you wouldn’t know he had been sick. He’s started school and we didn’t think he’d be able to start. If he didn’t have that transplant, he’d be a different child.

“It’s a different world, like night and day for our family. We missed so many events, weddings because we couldn’t make plans.”

After her operation, Ms Costello was “blessed” with two new additions to their family, twins Donagh and Caoila. “They’re fabulous. I had worried if I’d be able to go on to have children,” says Ms Costello.

Ms Costello says the family has a video of Tadgh aged two asking his mother for twins, like his friend has.

“I’m really glad I didn’t disappoint ”she says adding that twins don’t run in the family.

“We just got lucky!”

Sadly, the family has been affected by kidney failure twice, as soon after Tadgh’s transplant Mr McElroy’s mother Evelyn was told she needed a kidney transplant.

“Just as he was getting a transplant, she went into kidney failure,” says Mr McElroy.

“Obviously we were very lucky that Clidhna was a match, because it’s not easy. Unfortunately none of my family are a match for my mother.”

After the family’s experience with organ donation, they are stronger advocates for donor cards.

“We’ve seen the benefits and we’ve seen a lot of other patients benefit from donor cards,” says Mr McElroy.

“I’ve always carried a card, I can’t encourage it enough.”

Ms Costello says: “The problem is, if you don’t speak to your family about your wishes, you might as well not have the card.

“It’s finding a positive in such a horrific situation. It’s not something you think about but the difference it makes.”

‘Everybody needs to consider it’

In August 2015, mother of three teenagers Gina Lenehan suffered a massive heart attack completely “out of the blue”.

“I was fit and healthy, it was just one of those things that can happen,” she says.

A coronary artery dissection, a tear in the wall of the artery, left her heart damaged beyond repair.

“I can’t remember any of this, I remember being in the ambulance but I don’t remember leaving it,”she says.

After she was rushed to St James’s Hospital, Ms Lenehan was put on life support in the hope it would help improve her situation. However, “the prognosis wasn’t good”, she says.

“It was coming very close, my husband knew the conversation that was coming.”

Doctors told her family she needed a heart transplant to survive and while she was in hospital, a heart became available.

“The timing was miraculous,” says Ms Lenehan.

“I was a match, I feel like one of the luckiest people alive, I genuinely feel like that.”

Ms Lenehan says she recovered very well after her transplant, although she suffered with muscle myopathy after the procedure and was only able to move her big toe at first.

She says she thanks her donor and their family every day.

“Everyday you think of them, everyday they are there with you. I couldn’t imagine what that decision would be like. It’s amazing a family considered it while they were grieving. I get upset when I think of the donor’s family and the decision they had to make.

“It’s such a selfless thing to do, it’s unbelievable.”

Ms Lenehan says it struck her recently when was signing her son’s 14th birthday card.

“I wouldn’t be writing that, if it wasn’t for my donor’s family.”

As a pharmacist, Ms Lenehan says organ donation was something that was close to her in her line of work, both promoting it and working with people waiting on transplants.

However, after her transplant, she says she is even more aware of the importance of promoting organ donation.

“I’ve everything to look forward to, thanks to my donor. You do look at life a little different, you do get annoyed by the same little things of course, but life is precious.

“Everybody needs to consider it.”

Isabel educates through social media

Isabel Terry has been waiting for a rare transplant surgery since 2009, as she requires both a heart and a double lung transplant.

The 41-year-old from Bishopstown, Cork, was born with pulmonary atresia, a congenital heart defect.

Between 1975 and 2001, Ms Terry had three open heart surgeries, before being sent to for a heart transplant assessment in 2003.

After being added to the transplant list, Ms Terry had five unsuccessful calls for surgery over the next five years.

After becoming ill in 2009, tests in the Mater Hospital showed that Ms Terry also required a lung transplant.

As the surgery had never been carried out in Ireland, she was sent to Newcastle, where further assessments showed she needed a double lung transplant as well as a heart.

Since being added to the list in Newcastle, Ms Terry has had one unsuccessful match.

Ms Terry started her Facebook page ‘Life on the List’ using her own experience of her life waiting on the transplant list as a way of educating people about organ donation, without any “morbid talk”, she says.

Through the page, Ms Terry encourages her readers to take a selfie of themselves and their organ donor cards and post them to social media.

“The page and the selfie makes it light hearted,”she says, adding that it also helps to get people to talk about their wishes with their family as well as dispelling any myths about organ donation.

“A lot of people don’t know even if you have the card, your next of kin can still say no. Or some people think if you are over a certain age you can’t donate.”

Ms Terry says she requires oxygen 24 hours a day, which means she is limited in what she can do.

“I don’t socialise much, it’s hard waiting for the phone to ring. That’s why I set up the page. I hope I get the call but it’s a rare surgery.

“I’ll be happy if I can bring awareness to people about the importance of organ donor cards.

“If anything, God forbid happened your next of kin at that time it must be horrific but knowing that conversation took place can make things easier.”

See Facebook: facebook.com/isabelslifeonthelist

‘She saved three men’s lives — my dad is just so proud’

In 2006, Pauline Brierton on a train in Australia on her way to the cinema when she got the call that her mother Mary Gallagher was in hospital.

Pauline and her brother had only been in the country a few weeks when they were told their mother had suffered a brain haemorrhage and they would need to come home immediately.

“There was really nothing anyone could do, the damage was too severe,” says Ms Brierton.

Her mother was only 53 years old.

“It was such a blur. I don’t remember anything from that trip home until we got to the airport, where my cousin was waiting to drive us to Letterkenny hospital,” says Ms Brierton.

After doctors and nurses approached her family in the hospital about the procedure, Ms Brierton’s family made the decision to donate Ms Gallagher’s organs.

Her liver and her kidneys were given to three men on the transplant waiting list.

“She saved three men’s lives,” says Ms Brierton.

After the donation, the family received an anonymous letter from one of the men who received a kidney as a result of their family’s decision.

“He told us about his dialysis, how he couldn’t play with his kids, I got the impression from his letter they were toddlers.

“He couldn’t thank us enough, from the bottom of his heart.

“He said after his transplant he was fighting fit and had a whole new lease of life, to be with his wife and children.

“The grief and shock we went through, it was so severe but this made is so much easier.

“And it was great for us, but it was amazing for my dad. He was so proud.

“Anytime anyone came into the house, my father would show them the letter and say ‘Look at what she did, look who she helped’ He was just so proud.”

“She passed away nearly 11 years now, I miss her everyday.

“You never get over the loss, but the letter helped, and that she saved three men’s lives is just so lovely.”

“More people need to have that chat [about organ donation], more people need to talk about it.”

DONORS

To become an organ donor, you can freetext the word DONOR to 50050 or download the Organ Donor app available on Android and iPhone.

To request a donor card visit www.ika.ie/card.

If you do decide to become an organ donor, remember to let your loved ones know your decision.