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'It gave me back my life': Transplant patient urges people to talk to their families about organ donation wishes

Transplants through deceased donors are down 25% on last year.

Sally with her parents Sabina and Ken the day she was released from hospital after her recent transplant surgery.
Sally with her parents Sabina and Ken the day she was released from hospital after her recent transplant surgery.

THE HSE IS calling on people to share their views and wishes about organ donation with their families over Christmas and in the New Year.

Approximately 500 people are waiting for an organ transplant in Ireland. This is includes patients on dialysis awaiting kidney transplants and patients waiting for lung, heart and liver transplants.

Dr Catherine Motherway, Intensive Care Consultant in University Hospital Limerick and Clinical Lead for Organ Donation, told TheJournal.ie that the Covid-19 pandemic has impacted on the level of transplant surgeries that have been able to take place this year.

Transplants through deceased donors are down 25% on last year and she said the system “won’t catch up before Christmas”.

“Of course we’d hope we wouldn’t have too many people dying before Chrismas. As a recipient it’s a hard place to be – you need someone to die for you to get an organ.”

She said 85% of Ireland would like to become donors but many have not had a discussion with the people in their lives who would pass on their wishes to healthcare workers in the event of their death.

“Talk to the people who will be there when something awful happens. Let them know what you want so when someone like me comes to them when something horrendous and probably sudden happens, they will at least know what you want.”

Organ donation continues to be a rare event; of 31,000 deaths each year in Ireland, there are an average of 80 multi-organ donations each year.

‘It takes its toll’

Sally Nagle just 14 when she was diagnosed with kidney failure in 2006. For two years she was on dialysis.

“It was a long time. I have an underlying condition that’s very rare – I’m the only case in Britain and Ireland – it’s called Idiopathic multicentric ostiolises. It means in my hands and feet hard tissue forms instead of bone,” she told TheJournal.ie.

“I had it since I was born but it wasn’t until I was five that I was diagnosed. They had told me that I could get kidney failure, it wasn’t a sure thing, they didn’t really know a lot about my condition and what would happen.

But in 2006 I got very sick, fluid started building up around my heart and lungs, I was vomiting. I was rushed to hospital because of how bad it got and was put straight on dialysis from there.

For the first six months she was in hospital in Dublin and her parents were trained up in dialysis so she could have it at home.

“The first year and a half was up and down. The dialysis can take its toll on the body, it’s very tiring and it was hard to try to keep up that normal teenage life, even going to school,” Nagle said.

I had to be on dialysis for 12 and a half hours a night, it’s a long stint, so if I came off it late I was late for school. I wasn’t able to do sleepovers and those kinds of things so I missed out on a lot then.

“Once I got the transplant I was obviously full of energy, I didn’t have the same restrictions with fluid and diet and I had a normal teenage life again, and got to catch up on some of those experiences I missed out on.”

Nagle had “an amazing 11 years” with her first transplant that enabled her to live her life and go to college.

However at 27 years of age her transplant began to deteriorate. “We held off as long as possible on dialysis but we could only hold off so long because of the build up of fluid and toxins in the body.”

‘I was devastated’

This time she had dialysis at Cork University Hospital, three times a week.

“I found it tougher on the body, I couldn’t do anything afterwards. I’d come home and crash out, watch TV or just sleep. It was like how you feel when you’re coming down with something. That takes its toll, doing it every second day.

I didn’t work for the last year and a half because I wasn’t able to commit, sometimes I’d feel very unwell. I still tried to do bits of voluntary work, especially for the Irish Kidney Association, I’m chair of the Cork branch.

Nagle has gone through a series of disappointments this year. Her aunt was due to donate one of her kidneys to her, with the surgery due in May, when the pandemic hit.

“Having gone through the long process of tests, that surgery was put off and we got another date for July so that didn’t seem too bad. Then tests were done three days before to make sure everything was still matching.”

She got a call to say her aunt’s donation could not go ahead due to her antibodies being too high. She was told further tests would be done eight weeks later, but her doctors decided the levels were still too high and “ultimately the transplant wouldn’t take”.

“They decided to extend it again for six months and I was put back on the list of deceased donors. Obviously I was devastated at the time, you’re building yourself up, especially when it’s a live transplant and there’s another person involved,” she said.

Most of the time I’m a fairly positive person, at the time I was very upset because it meant begin on dialysis longer and I had been building up to having that new lease of life again. But I always believe that what’s meant for you won’t pass you and I knew from the first time being on the list that your time does come.

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“When you’re on dialysis it feels like a lifetime and the call could come anytime. It is hard not knowing.

“For me, I tried to keep myself busy with my work with the Irish Kidney Association and other projects, I recorded a song I co-wrote with my friend in Limerick, Mick Donovan. The song is for my donor and I thought anyone who’s been through it could relate to it.”

Source: Sally Nagle/YouTube

She raised €2,000 through a GoFundMe campaign when they released the song.

Nagle said it has been difficult in the last ten months to limit her activities and interactions with people in order to protect herself.

“I think anyone who has a transplant or is on dialysis was feeling that, particularly going into a hospital environment three times a week, you would be anxious seeing the figures all the time and if they went up a little bit you’d feel even more anxious.”

Seven weeks ago, she received a call to tell her she was getting her second transplant.

It’s incredible now how my energy has completely returned. The biggest thing now is being able to plan for the future. Before I didn’t have the enthusiasm to even want to plan, but now I want to do courses and find a job, I’ve been given back my life completely. I hope to be able to travel as well, whenever it’s safe to, that’s something I’d love to do.

Nagle said she plans to continue with her work highlighting the importance of becoming an organ donor. She recently received a letter from President Michael D Higgins to thank her for the work she has done raising awareness of the value of organ donation and transplantation.

“I really hope sharing a positive story like this will help people to have that conversation and share their wishes with their families. The Christmas period is the perfect time when people are meeting their families more and people are sitting around talking,” she said.

I feel so lucky that twice I’ve been given this gift of life. 

“It’s a hard thing, you can’t thank the person but my donor and their family are in my thoughts every day because without them I wouldn’t be able to do the things I can do. It’s so great to be able to have excitement and joy planning ahead.”

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