Kildare father-of-three reveals how organ donation changed his life ahead of Organ Donor Awareness Week 2022

A Kildare father-of-three has revealed how an organ donation procedure radically changed his life.It follows the Organ Donor Awareness Week 2022 campaign, which will take place from Saturday, April 23 to Saturday, April 30, and is being organised by the Irish Kidney Association in association with the HSE’s Organ Donation Transplant Ireland.

51-year-old Niall Whiteley of Knavinstown told the Leader how he became unwell in August of 2004, where he was admitted to Naas General Hospital.

He explained: "Under the care of Dr Dan O’ Gorman, I was diagnosed with acute dilated cardiomyopathy after extensive examination and medical tests."

"Following this, Niall said that he was moved to Tallaght Hospital under the care of Professor Vincent Maher, who he said helped bring him ‘back to a reasonable level of normality.’

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DETERIORATION

He elaborated that his health remained in good shape until 2017, when he noticed that his health began to slowly deteriorate. 

"A serious scare happened that December when I went into arrhythmia 'flutter' led to the insertion of an ICD to help my irregular heartbeat," Niall explained: "This helped me for a while but by early 2019 knew I was once again in trouble. 

"Frequent trips to the hospital ensued but there was  no improvement. 

He continued: "In early June, the harsh reality set in when I went to Lough Ennell to fish but didn't have the strength to push out my boat. This was very disheartening.

"Later that month, another setback took place when I was doing some work around the house when once again 'flutter' led to a bad fall in the kitchen and fractured my skull. 

"My children were present and it was a serious shock to them," he added.

Niall also said that the injury resulted in further complications, leaving him deaf in his right ear, and a reduced sense of taste and smell. 

"Despite this, I returned to work and was still trying my best to coach at my local LGFA club, Ellistown."

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‘I WAS GOING DOWNHILL RAPIDLY’

However, he said that while he knew deep down that he knew he was running out of time, he said that he ‘was in denial’: "I was going downhill rapidly, everyone could see it, my family, friends and work colleagues.

"I was falling under the strain my heart was in, trying to keep me going, but I wasn't looking in the mirror.

"October 19 was the complete collapse: I was admitted to Tallaght again and when Prof Maher said he ‘thought it was time’, I knew what he meant, it was the inevitable, just a matter of time… I had been going to bed at night wondering if I'd wake in the morning, every day was a bonus."

Then, one day, Prof Maher told Niall that he would be sending him to a colleague of his in the Mater hospital named Dr Emer Joyce.

"Dr Joyce led the team in the Mater that did a battery of tests to decide if I was a suitable candidate for a transplant: it was a major relief for me and my family who had witnessed my health decline that I was accepted," Niall explained.

Then, when his left ventricle failed, Niall’s body was soon implanted with a balloon pump to help get blood around the body. 

Although he was lucky to have survived, Niall admitted that he was left feeling debilitated, as he couldn't move once it was inserted.

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GOOD NEWS 

Fortunately, his luck changed when he received a call from the transplant coordinator, Barbara, three weeks later, who told him that she thinks the hospital has found a suitable donor.

Niall said this led him to experience ‘a flood of emotions’, which led him to ask more questions:  "I was thinking, ‘will it be cancelled again?'"

"I was also thinking of the other family (of the organ donor) who are losing a loved one… it is an enormous sacrifice, to donate an organ, an immeasurable gift, to keep me alive; these thoughts never leave you."

Following the surgery and a few days of an induced coma later, Niall awoke to find out that his operation had been a success.

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GRATITUDE

He particularly credited the physiotherapy staff and nurses with helping him in his physical recovery, referring to them as being ‘amazing, under-appreciated people.’

Niall continued: “I returned home five weeks later: the first year is the hardest, setbacks are common, medication fine-tuning, infections, illnesses. 

"It's part of the journey, and it strengthens you."

He added that since the operation, he has returned to work, has been coaching in his LGFA club with the girls, has gotten back to the outdoors, and, most importantly, back to family life. 

"The support that I and my family have received through these difficult times has been immense. From family, friends, neighbours, work colleagues, GAA and LGFA community. 

"Throughout my recovery,  the thoughts of the donor family are always in my mind. There are sad days, happy days, thoughtful days… there is a part of an amazing family in me."

Niall Whiteley. Pic Supplied.

He also said that he sent a letter anonymously through the organ donor coordinator at the Mater to thank his donor family for their gift.

"It was moving and wonderful to receive a response from them some time later," Niall added: "often when I'm out on my own I reflect on what I and my family have been through and wonder what the donor family are doing now and how they are coping."

He also said that, in many ways, his illness was harder on his family than on him: "I wasn't looking at myself and my mirror image, but they were watching me deteriorate every day. For most of my children's lives I have been unwell so I'm trying to make up for last time.

"The time I spent in hospital gave me a real appreciation of life and the amazing work that our medical and nursing staff do in caring for patients' physical and emotional needs."

Niall concluded by saying that he hopes that by sharing his story, people will see how important organ donation and transplantation is, and that it will inspire them to have the conversation with their loved ones about organ donation and let their wishes be known.

FURTHER INFORMATION:

All campaign posters for Organ Donation Awareness Week 2022 (ODAW 22) are available in English, Irish and Polish and digital copies can be downloaded from the Irish Kidney Association’s (IKA) website at www.ika.ie/donorweek2022.

Requests for Organ Donor Cards can also be made at the IKA’s site.

According to the IKA, at any one time in Ireland, there are between 550 and 600 people active on waiting lists for organ transplants including heart, lung, liver, kidney, and pancreas. 

There was a fall in the number of transplants over the past two years across all the national transplant programmes during Covid-19.

206 transplant operations were carried out in Ireland in 2021 (16 more transplants than in 2020). This activity in very challenging times could not have taken place but for the generosity of 65 deceased donors and 35 living kidney donors.

This year’s awareness campaign is built around the theme Share your Wishes about organ donation #ShareYourWishes. 

The IKA explained that the key message is that members of the public can play their part in supporting organ donation for transplantation by ensuring that their families know their wishes. i.e., they ‘have the conversation’.

Social media hashtags for ODAW ‘22 are: #ShareYourWishes and #DonorWeek22. 

People can also tag the IKA when doing their own posts: @IrishKidneyAs on Twitter, @IrishKidneyA on Instagram @IrishKidneyAssociation on Facebook.