Eddie Flood was 23 in 1987 when his mother passed away, aged 65, with polycystic kidney disease (PKD).

“At that time we weren’t tested and it wasn’t until I was 29 that I became concerned when I started seeing black spots in front of my eyes and decided to get my blood pressure checked,” he says. “That’s very important when you’re a kidney patient.”

Eddie’s journey with polycystic kidney disease began then.

Polycystic kidney disease (PKD) is an inherited disorder in which clusters of cysts (noncancerous round sacs containing fluid) develop primarily within your kidneys, causing your kidneys to enlarge and lose function over time.

Eddie was referred to the renal clinic in Beaumont Hospital by his GP where his health has been monitored and he has received treatment since.

His illness progressed over time however, and even though he was expecting the diagnosis of PKD, years later it still came as a shock.

“I was on my own that day,” he says, “and even though I was expecting it, when you get that kind of diagnosis from the person across the table from you, your whole life just falls apart.”

To this day he feels emotional about that time.

“I went down the M50 and I remember pulling in and ringing my brother - and going to pieces,” he says. “I didn’t want to go home to my wife Jennifer and kids because I was too upset, but I did eventually when I got over the initial shock. We had four young boys at the time - David, Graham, Andrew and Gavin - aged 15 down to seven at the time. It was hard… I didn’t know what was going to happen but I got strength, I don’t know from where.”

We make them feel welcome, show them they are not alone with this illness

Eddie rang the support group, the Irish Kidney Association, soon after diagnosis and was told that the Westmeath branch was meeting that very night.

“It was their AGM if you don’t mind. I came out of that meeting a board member! Donor House was close to where I worked part-time for South Dublin County Council, so they couldn’t believe their luck – it would be very handy for me going to the monthly board meetings!”

Like a blanket around you

He has no doubt about the help he received from IKA members.

“When I left that meeting, I felt like someone had put a blanket around me,” he says. “That’s basically what we do (in the IKA) for those who are newly-diagnosed, for new members. We make them feel welcome, show them they are not alone with this illness. Everyone who gets that diagnosis gets the same shock. You might be expecting it but when someone tells you, it’s definitive, and you can do nothing about it, you just have to move on.”

Home dialysis

Eddie commenced dialysis at home – what’s called Automated Peritoneal Dialysis (APD) - in late 2008 as his kidneys were no longer able to remove toxins from his bloodstream.

“This meant that I had a machine beside me each night and a pipe coming from my stomach. I had to connect up every night to these bags of fluid, which are pumped in at intervals, then flushed out of your system. That went on every night for eight hours, seven nights a week.”

While Eddie was offered dialysis in hospital, he chose home dialysis instead.

“I wanted to try and keep going with my own life and try to keep working,” he says.

“The kids were small and all into sport and Jennifer, my wife, was exceptional and still is. She took over my role and her own role in one. It was tough especially in the summer months when the lads were out in the garden playing football and I was stuck to the machine, but thank God, 28 months later I got a phone call, in early summer 2011, from Beaumont Hospital, to go for a transplant.”

Transplant joy

That was the beginning of new life for Eddie. After the match was confirmed, he had the six-hour surgery, but it was a few days before he could relax.

“My [new] kidney didn’t work until the fifth day, which sometimes happens, doctors told me. I was very anxious about that and so relieved when it did start. I felt totally different then, physically. I felt that I now had a new lease of life ahead of me.”

Emotions can be complex? however, after receiving a transplant, and Eddie was to experience mixed feelings for a while.

“I got the kidney, yes, but afterwards, when I came home, I felt a huge sense of guilt because someone else had lost a loved one for me to get a kidney, but it’s natural for recipients of organs to feel that way.”

In time he got over that, he says, but he never, ever, forgets his donor.

“I plant a little tree or bush in that person’s memory every year and that makes me feel that I’m recognising him,” he says.

Family illness

Life hasn’t been totally straightforward, family wise, on the PKD front however, since, for Eddie and his family.

“PKD is an inherited condition and unfortunately two of our sons have inherited it, but they are getting the best of care in Tullamore Hospital. I didn’t know that I needed care when I was young and now I’m an advocate for that and I make sure they go for their appointments and eat healthily e.g. following a low salt/low protein diet in order to not put pressure on the kidneys.”

Two of Eddie’s brothers also had the illness and while one has had a transplant, another brother died abroad, sadly, while awaiting one.

“When a condition is in the family, you’re conscious of it all the time,” Eddie adds.

Farming helped

Being a part-time farmer was a great help to him during the pandemic, he believes. Eddie, who is originally from Bohernabreena in the Dublin Mountains had moved to a farm in Killucan in Co Westmeath in 2000.

“I bought a Land Commission farm then and had 30 suckler cows, but when I was diagnosed I sold that farm and bought a smaller place here in Derrymore. I’ve 20 acres and I rent a bit now and I buy heifers and sell them off as in-calf heifers. The farming kept me going during lockdowns.”

Irish Kidney Association

Eddie became national honorary treasurer of the Irish Kidney Association in 2019 after 14 years on the board. He was elected honorary chairperson in 2022. All the work is voluntary.

“We have 25 branches mostly run by patients or family of patients that have been through the process, which is very unique really,” he says. “Everyone gives their time freely without need for plaudits. They are amazing people. Our ethos is to look after people, to help those in a vulnerable position.”

A principal concern of Eddie’s and the IKA’s at present is the cost of fuel to heat homes.

“With the fuel crisis a lot of people on home dialysis are experiencing fuel poverty. They need light and heat. People on dialysis feel the cold 10 times more than an ordinary person,” he says.

“Your bloods are being exchanged and it’s a reaction to the exchange. Many have to keep hot water bottles beside them even in a warm room. If the amount of free units was increased [by government] for those on dialysis it would be very helpful.”

Eddie points out that those who are vulnerable (due to ill health) during this fuel crisis can register with their electricity provider as a vulnerable user.

“We didn’t realise this until a few weeks ago,” he says. “When you are registered as such you can’t be cut off for non-payment of a bill.”

Reliant on donations

People who have had organ transplants are living donor advertisements for donations, Eddie says, after expressing thanks to all he works with in the IKA.

“Donations to the Irish Kidney Association are so important. We have an awareness week in April where we sell our forget-me-not emblems, but the pandemic has meant that our donations decreased hugely as we couldn’t sell the flowers as before.

“We have been inundated with requests for counselling and patient aid as well recently because people with kidney disease are finding it hard to cope with all the events that are occurring at the moment. We rely on donations from the public to help with all that.”

New Gift of Life donor card

  • The 37th annual Service of Remembrance and Thanksgiving for organ donors and transplant recipients, organised by the Irish Kidney Association and narrated by Eddie Flood will be broadcast on RTÉ 1 on Sunday 30 October at 11am.
  • European Day for Organ Donation and Transplantation will be celebrated on 10 October.
  • Individuals who wish to support organ donation are encouraged to share their wishes with their family and keep the reminders of their decision available by carrying the organ donor card, permitting Code 115 to be included on their driver’s licence or having the “digital organ donor card” App on their smartphone.
  • Organ Donor Cards can be requested by visiting the IKA website www.ika.ie/get-a-donor-card or by telephoning the Irish Kidney Association on 01 6205306 or Free text the word DONOR to 50050.
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