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24 May 2022

'Dialysis is keeping me alive': Longford CF campaigner speaks out as pandemic sees significant drop in organ transplants

Jillian McNulty

Since the beginning of the pandemic, there has been a significant decrease in the number of organ transplants in Ireland. Jillian McNulty (pictured) has been waiting two years for a kidney transplant

Longford Cystic Fibrosis campaigner Jillian McNulty has called on people to talk about organ donation following newly released figures that show a decrease in the number of organ transplants since the beginning of the pandemic.

The Irish Kidney Association (IKA) has acknowledged the kindness of the 64 deceased donors, and their families, who, in a time of great sorrow which has been accentuated by the uncertainties and restrictions of the pandemic, have thought of those in need of an organ transplant.

They also applauded 35 living kidney donors for stepping forward to help a family member or friend.

Unfortunately, as with 2020, Covid-19 has had a negative impact on organ donation and transplantation in Ireland in the last 12 months as borne out by preliminary end of year figures for 2021 released by the HSE’s Organ Donation Transplant Ireland (ODTI) today.

“It’s so disappointing to see such a drop in organ transplants,” Jillian told the Longford Leader.

“So many people, including myself, are desperately waiting for a chance of a somewhat near normal healthy life.

“I’ve been waiting for a kidney for two years and seeing this news is very disheartening, I’ve been told I could be waiting five years but figures like this could extend it by more years.”

The IKA believes that while the pandemic has exposed the vulnerability of the national organ donation and transplant programmes, some lessons have already been learned. Beaumont Hospital has put in place a robust Covid-19 secure pathway for kidney transplantation to continue after they were obliged to suspend the programme between March and May 2020.

There has been a call by the ODTI and the IKA for organ donation and transplantation to be recognised as important life giving/saving services that must not be compromised by outside forces.

“The fragility of the transplant service in Ireland was exposed in November 2021 when a transplant did not proceed at the Mater Hospital, due to the unavailability of an ICU bed,” explained Carol Moore, Chief Executive of the Irish Kidney Association.

“We hope this unfortunate incident will not be repeated and will be the catalyst to effect change as soon as possible by ring fencing of resources including ICU beds for transplant activity. We welcome the HSE investigation into this incident.”

The Irish Kidney Association is calling for detailed data on seeking consent for organ donation in our hospitals nationwide and also more transparency around transplant waiting lists.

“We need more clarity about the reasons why more transplant operations are not taking place in Ireland,” she said. “For example, was the decline in 2020 and 2021 due to a lack of ICU beds in the donor or transplant centres, or were all suitable donor families approached? There were no (deceased) kidney transplant operations in the months of March and June 2021.”

The HSE’s National Renal Office has reported that since the arrival of Covid-19, one in three patients that end up in ICU as a result of Covid-19 have Acute Kidney Injury and require temporary dialysis.

Some of these patients will not recover their kidney function and will end up on long-term dialysis or will hopefully get a transplant, particularly those with pre-existing kidney disease.

The pandemic has also highlighted the vulnerability of people on dialysis and thus the need to focus resources and innovation on improving their situation.

“Because people on dialysis typically have to attend a hospital/dialysis unit for treatment three times a week, every week, for many of them holidaying with their family within Ireland is not an option due to all the dialysis units in the country operating at or near full capacity,” said Ms Moore.

“This means no visiting family/friends outside of the catchment area of their regular dialysis unit. For some people, this means not being able to visit elderly parents.”

At the moment in Ireland, altruistic kidney donation - where a person can donate a kidney to someone they do not know - is not allowed.

Longford’s Jillian McNulty maintains that such donations should be allowed in Ireland as they would be lifelines to those with advanced kidney disease.

“They need to allow altruistic kidney donations here, something that’s not possible unless you know the donor,” she explained.

“A stranger cannot donate. A lot more lives could be saved if altruistic donations were allowed. I urge anyone reading this to ensure they sign a donor card or tick it off on their driving licence; no one knows what the future holds and in the event of a tragedy your organs can save up to eight lives.

“Your legacy can live on in people like me. One day some amazing person will save my life. For now I’m needing a kidney and, having Cystic Fibrosis, I will one day also need lungs.

The IKA’s key message to the public will continue to focus on the importance of sharing your organ donation wishes with your family as they are the people who will be asked for final consent for organ retrieval to take place.

“People need to have the conversation, although morbid, but wishes need to be known,” said Jillian.

“I wait in hope that 2022 will be the year I get a kidney. Until then, dialysis is keeping me alive.”

Organ Donor Cards can be obtained by phoning the Irish Kidney Association on 016205306 or Free text DONOR to 50050.

You can also visit the website at www.ika.ie/get-a-donor-card or download a free digital organ donor card APP to your phone. You can also indicate your decision to donate by having Code 115 added to your Driver’s License.

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