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02 Oct 2022

Laois family living life to the full after lifesaving transplant surgery

Keith and Claire Cullen tell their lifesaving kidney transplant story to the Leinster Express

Kidney transplant

Keith Cullen and his wife Claire at their home in Portlaoise Pic: Denis Byrne

Covid-19 has transformed the lives of millions in the past two years.

During the same period Keith Cullen and and his family have had their lives turned upside down by a life-threatening condition.

His kidneys failed.

Keith sat down with his wife Claire at their kitchen table in Portlaoise to tell the story which all began on the hurling field. Keith loved playing with his GAA club Trumera but it was during training that he first noticed a change in his health.

“All of a sudden after 20 minutes, half an hour training I started getting out of breath. And it would take a few minutes to try and get my energy back. My energy was completely gone. I could never understand why - I was puzzled,” he said.

The issue started to become a problem during matches.

“The first ball would come to me and I'd be shot. I could never understand what was wrong up to about two and a half years ago when I got diagnosed,” he said.

He was able to keep working as a painter / decorator but the fatigue was hitting him hard.

“When I was going to work, at the time I'd come home. And I'd be absolutely shattered,” he said.

Doctors were visited but diagnosis was not a straightforward matter for Keith who was adopted. He ultimately found out what was wrong with him after a test carried out in tragic circumstances.

“We lost our son Aaron in 2016, aged five days. The poor chap never opened his eyes.

“It was recommended that we get genetic counselling based on a finding from the inquest (into Aaron’s death),” said Claire.

These tests resulted in a genetic disorder called Alport Syndrome.

This was also confirmed by the fact that Aaron's birth had kidney failure and a hearing impairment which is a symptom of the Alport which damages the tiny blood vessels in kidneys.

The diagnosis coincided with tests. On the same day his condition was confirmed, his life was to take another sudden shift.

“When we got back home from being in Dublin seeing the genetic counsellor, Claire received a phone call a couple of hours later . They said Keith needed to pack a bag and come straight over to Tullamore hospital A&E. The blood test results were not good,” he said.

Keith reluctantly agreed to go to the hospital that night. When he got there they found his heart was beating dangerously at over 200 beats per minute.

“The doctor said to me: 'This is severe, you're on the verge. You are a walking heart attack,” Keith recalled.

More tests were carried out on his kidney function.

“I had chronic kidney failure - chronic is the end stage,” he said.

The diagnosis for Keith made sense given the fatigue and other health problems. And then he was referred me to a kidney specialist in Tullamore, Dr Eoin Bergin.

“So then our long journey began. We went to see Dr Bergin and he went through my condition and what would happen next. At that stage, my kidney function percentage was 16 % of what it should be. Normal kidney function should be 70%. So I was aged 37 at the time,” he said.

Change in lifestyle was immediate for Keith which he wasn't too pleased with.

“I had to go on a specific diet. It was like eating rabbit food. I had no choice,” he said.

He admits he didn't follow all the rules but his wife Claire knows why.

“Keith is a strong independent man. And being told what to do was very, very difficult. He could take anything that's thrown at him but not the taking away of his independence,” she said.

His lifestyle changed in other dramatic ways. Sport was out; work had to be cut back.

“I was told that my days of playing GAA were completely over. I had to quit one job. Even at that I was told to cut down my days to three days a week max,” he said.

Keith didn't qualify as a dialysis patient when diagnosed. While he chose to live without it as long as possible, his condition deteriorated to a point where he had no choice with Dr Bergin making the call.

But going on dialysis is not straightforward as it requires surgery to connect a vein to an artery. It was carried out in March 2020 after the Covid-19 lockdown was imposed. He had to go to the hospital on his own.

A few months later in the summer of 2020, his life on dialysis got off to a bad start with some significant blood loss when the needle to connect him to dialysis was being inserted.

But it resumed smoothly a couple of days later and he would receive treatment in the Offaly hospital for the next four months.

“I had to go and get dialysis in Tullamore three days a week. Monday, Wednesday, Friday afternoons from 2pm to 5pm. Which gradually grew from three to three and a half to eventually four hours every time,” he said.

While his health improved on dialysis it did not give him a normal life

“I'd come home after having my dialysis. I'd be okay, for a couple of hours. And then I would be fatigued, again. Your day in between could be okay but nothing special. As the months went by the days were getting better, energy wise, but nothing to what a normal day should be,” he said.

After four months in Tullamore Dr Bergin gave him the chance to have his dialysis much closer to home at the BBraun Wellstone Dialysis Clinic in Portlaoise which is just five minutes from Keith's house in Portlaoise.

“It was a no brainer,” said Keith who speaks glowingly about his experience at BBraun where he would receive care for the next nine months into 2021.

He recalls the friendships he made with staff and fellow patients, especially Paddy Rohan and Margaret Fenlon, with fondness.

Claire says it played an important part in her husband's mental health.

“He was able to go down there and have an outlet to interact and socialise in some way,” she said.

Keith was on the kidney transplant list at this stage but he suffered a setback due to a clot that formed that required surgery in St James's Hospital in Dublin where he would spend 10 days.

He was removed from the transplant list temporarily because he had to go on antibiotics.

It frustrated Keith and Claire because when he went on the list he was told the wait could be up to three years.

During his time on dialysis, Keith says transplant was a constant hope but so too is the difficulty of coping with an illness that has changed life for himself, his wife and son Darragh was aged one when Keith was first diagnosed in 2018.

“I was in a bad place mentally, you know, losing a son. Being diagnosed with kidney failure you know - I was asking why me, what did I do to deserve this? I didn't put the blankets over my head but at times I did want to. But at the end of the day I had another son and I had a wife,” he said.

The next chapter in the journey opened for Keith in April 2021, when he was told by his transplant coordinator Mary Hancock that he had recovered sufficiently from his setback to go back on the transplant list. This was good news but he was still expecting a 36 week wait.

“That was on a Monday afternoon. I had my dialysis on Monday, Wednesday, Friday and the following Monday.

“On the Wednesday morning, April 8, 2021 I got a phone call at six minutes past eight in the morning. I was laying in bed.

“I saw Beaumont Hospital on my phone. At that time, I was supposed to have a couple of forms sent back to them which probably were outstanding and I asked myself lying in bed saying to myself will I or will I not answer the phone. I remember looking at the phone and thinking, oh Jesus those forms.

“And for the luck of God, I said here we'll answer the phone and this very jolly woman says good morning. She says: "Are you happy to hear my voice". She said she was coordinator of the kidney unit. She asked: ‘Are you not happy’. I said: ‘why would it be happy?’”

“She said to me, ‘I'm ringing you because we have a match for your kidney’,” recalled Keith.

By now Keith was wide awake but also overtaken by the news.

“The emotion kicked in, I couldn't speak, I was overwhelmed. The tears. I said (to the woman in Beaumont):‘Can you just say that to me again, just so that I understood what I genuinely thought I heard’.

“So she said: ‘Could you make yourself up here in the next four hours?’ And, I said ‘I can’. “So, she said: ‘Pack your bag. You'll probably be here for seven days’.”

“The bag was half packed anyway,” Keith told the Leinster Express.

Claire drove Keith to Dublin that day. While they were overjoyed there was still some trepidation.

“There's always the pit in the stomach that says it's not gonna work. That's sort of been our luck for so long,” he said.

Keith added that there is a possibility that his body would reject the new kidney.

Before he left for Dublin Keith made sure to let the staff at BBraun know the good news.

When he got to Beaumont he was one of two people in line to receive an organ.

The other patient was a teenager from Wexford. Their experience in Dublin reveals more about the twists and turns that people who need transplant must face.

Keith had his surgery at 10am on the day after admission. The teenager, with whom he struck up a friendship, was in the theatre before him at 4am. The operations are no more than three hours long.

Unfortunately the teenager's body initially rejected the new kidney. Keith's transplant was a near instant success.

Keith was concerned when he heard the news about the boy and feared that his transplant might also fail. However, 10 hours after the surgery he was told his new kidney was “perfect”.

Keith was also relieved when he learned later that the Wexford teenager would soon receive another transplant which was a success.

While the operation went well, there was a lot of pain during the initial recovery period in hospital. He also suffered some nerve damage which required a 10 day hospital stay.

“I spent the first month recovering and after that, I was back on my feet, like a new man, raring to go. I had more energy after a month than I did for five years,” he said.

The success of the operation was revealed in his kidney function tests. To qualify for the transplant his function had to drop to just 11% of full capacity

“After I got a new kidney it was at 45%. After six weeks, my kidney function was up to 60%. The maximum with one kidney is 70%. I am now between 60 and 70% at the moment. I am normal,” says Keith.

Prior to his surgery, Keith was on dialysis for three days a week and had to take 20 tablets a day. He now takes just four tablets daily for blood pressure and to prevent his body from rejecting the new organ.

“It's a small price to pay for a new life, I'll take that any day of the week. I am able to do everything that everybody else can do and more,” he says.

But because of all they have been through, Keith is adamant that he must look after his health.

“If I blaggard it I might not get another one and that is going to result in death. That's just the long and short of it,” says Keith.

His frank admission resonates in what Claire says have been tough times for her family.

“The last few years have been absolutely hell for both of us,” she says.

But a new chapter has opened with lots of changes other than better health. Keith points first to his relationship with his son who he could hardly play with before the transplant due to fatigue.

“If I played with Darragh for an hour I would be absolutely shattered. Now, seven in the morning Darragh is up and that is us playing all day long until he goes to bed at seven o'clock in the evening,” he said.

Another big decision was made in Beaumont.

“I was a painter and decorator all my life. I was told that I would have to change my occupation because the wound could open if you overstretch for a long period of time. If I was a painter I'd be rolling up and down ladders. They recommended that it was time for a change,” he said.

When he told Claire from his hospital bed he was selling his painting and decorator van, she thought at first he was having a “mid-life crisis”.

But Keith was determined to follow through. He decided to go back to education and start all over again.

“I decided to do social studies in Portlaoise College. I want to work in this line. This (education) is a stepping stone for me to what I want to do going forward to give back to people less fortunate than me,” he said.

It’s another new and daunting challenge but one which Keith has wholeheartedly embraced.

“I never typed on a laptop until three months ago when they started in Portlaoise College. It's been tough. I'm aged 39 and the nearest student to me is 19. So there's a 20 year gap between me and everybody else. These are kids that are coming out of Leaving Certs - they are wizards.

“I come home from college and I play with Darragh. But when Darragh goes to bed I am on college work seven nights a week. I am spending a minimum three hours a night on the laptop,” he says.

Claire and Keith hugely appreciate all the support they've received from friends and family.

Keith pays special tribute to his mum and dad Christopher and Carmel, his brother Mark who lives in Cork and his daughter Chloe who lives near Ballinasloe.

“Words can't describe the help that the family gave. All I had to do was pick up the phone,” he said.

Claire also pays tribute to her family in Portlaoise.

“They were available to help 24/7. Anything we needed, they were there,” she says.

Keith adds: “Everybody that we know have been very supportive. If you needed something there, their doors were open straight away”.

They are also extremely grateful to the family of the donor for giving Keith another chance in life.

“We can never ever thank that family enough,” she said.

The couple urge people to opt in for organ donation.

“All you do is tick a box on your driver's licence. That's it. Just go in and renew. Tick the box. That's all it takes to save a life,” says Claire.

The couple are also planning to give back in a concrete way in 2022.

“We are planning a kidney related fundraiser. We did something like that after we lost our son.

“The year after he died we did a massive fundraiser here in Portlaoise. We raised over €4,500 for Feileachan,” said Claire.

Keith is also determined to help people on dialysis or others facing transplant.

“I'm very lucky. I'm one of the lucky ones that has got a kidney within two years of being on dialysis.

“A lot of people, unfortunately, will be waiting for a minimum of five years at least. You know, it's a long road. It's not an easy road.

“If I could help someone talk to someone that's struggling with having to go through I'm always there to help them to get to guide them as best I can through my personal experience because I know what they're going through,” he says.

He continues to call into the BBraun Clinic in Portlaoise to support the people who continue to go through dialysis and the staff who provide the care.

So the new chapter has well and truly opened for the Cullens. Family is now where their focus is, especially their son Darragh.

It's their son to whom the husband and wife wanted to give their final words of the interview.

“He is our ray of sunshine. He is our ray of sure he's our life. He is everything,” said Keith.

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