Sunday 25 February 2018

'I started planning my funeral, I thought there was no hope' - Cystic fibrosis sufferer on life-saving operation

Donna Griffin underwent a life-changing lung transplant
Donna Griffin underwent a life-changing lung transplant
Donna Griffin has welcomed the opt-out organ donation system brought in by Health Minister Simon Harris
Donna Griffin in hospital
Donna Griffin in hospital after her lung transplant
Donna's late sister Queva Griffin

Sasha Brady

A young Dublin woman said she was on her 'last legs' when she was given a second chance of life thanks to a life-changing operation.

Donna Griffin (28) from Clonsaugh in Dublin was born with Cystic Fibrosis (CF), a lifelong genetically inherited disease that mainly affects the lungs and digestive system. It currently has no cure.

When she was 17, Donna developed complications through CF. It overwhelmed her lungs and she contracted pneumonia and subsequently became seriously ill. She spent most of the following three years in hospital instead of enjoying the final stages of her teenage years like her peers.

"I lost half my body weight. I kept getting infection after infection and over the years it got to the point where I expected to be in hospital indefinitely. I kept thinking 'I can't live like this'," she told Independent.ie.

The only cure available to Donna was a lung transplant. Her sister Queva, who also had CF, underwent a double heart and lung transplant in Britain in 1998 at 14. Queva, who published a book of her poetry to help raise money for her life-saving surgery, was the first person under 25 to undergo such a radical and complex operation.

"I saw the difference the transplant made to my sister's life. I knew that it would make a difference to mine. I didn't want to die. I wanted to live,"said Donna.

Donna's late sister Queva Griffin
Donna's late sister Queva Griffin

Sadly Queva passed away in 2003 from complications arising from an infection but in the years after her operation but her sister said "she really lived a full and happy life".

Donna was eventually placed on the list for the Freeman Hospital in Newcastle for a double lung transplant, as chances of receiving one were better there than at home. Severely underweight from her sickness, she worked hard to gain the minimum weight (45 kilos) necessary for transplant candidates.

"I couldn't hold anything down. I was skeletal but I tried my best to reach the weight required because I was so desperate for this operation," she said.

"I spent about three years going between Ireland and the UK. I got a call about four or five times saying that a lung may be available. An ambulance would take me to Dublin Airport and I'd be transported to Newcastle but my hopes were dashed each time."

Each time the lungs were found after testing to be too poor a condition for the doctors to risk performing an operation and Donna would have to return home to Ireland disappointed.

Donna said she went into a "deep state of depression" and started planning her funeral arrangements because she felt like there "was no hope".

Donna Griffin in hospital
Donna Griffin in hospital

Then, in 2014 all adult lung transplantation was repatriated back to Ireland from Newcastle. In that same year Donna suffered from a collapsed lung and was rushed to Beaumont Hospital.

"It was serious, I didn't think I'd recover from it. The idea that a lung transplant would become an option for me was so far removed from my mind. I know it sounds morbid but I honestly felt like I had no chance of surviving this."

A week after falling ill she got a call from the Mater Hospital to advise that they may have a lung available for her and she was admitted to hospital straight away.

The Mater brought her in that afternoon, assessed her and advised that they'd have an answer for her at midnight but Donna was convinced it wasn't going to happen after suffering so many setbacks before.

"My dad was with me. He was always with me. He's my rock. He tried to be positive but I didn't have much hope. I wanted to, of course, but I also didn't want to get my hopes up" she said.

However, at 10pm doctors arrived to her room with good news: the operation was going ahead. They had found a suitable lung.

"I started crying. My dad started crying. We couldn't believe it. I was a wreck. I'd been on my last legs. I really couldn't take the pain anymore. That collapsed lung had finished me off.

Donna Griffin in hospital after her lung transplant
Donna Griffin in hospital after her lung transplant

"Even when they wheeled me into the operation room I wanted to jump off the table. I was so scared but I'll never forget the feeling when I woke up the next day.

"It was like being in a dream because finally I was able to breathe without pain. I was able to breathe completely and deeply for the first time in so long. I'll never forget that moment," she said.

"It didn't matter that I had tubes sticking out of me. All that mattered was I had new lungs and everything was going to be OK."

Donna Griffin has welcomed the opt-out organ donation system brought in by Health Minister Simon Harris
Donna Griffin has welcomed the opt-out organ donation system brought in by Health Minister Simon Harris

Since the successful operation, Donna has been able to enjoy her life in full. Thankfully she's had no major health complaints and said she is forever grateful to her donor for giving her the gift of life.

"I enjoy wonderful job security. I work for the Property Registration Society and they've been with me through all of this and never once did I feel my job was at risk. Life has been good," she said.

In 2018, Ireland is set to introduce an opt-out system for organ donors. The system, brought in by Health Minister Simon Harris, will operate on a system of "presumed intent".

In practice, the new rules mean a person would have to sign a register to state that they do not want their organs removed once they pass. If they do not, their consent will be taken as given. However, their next of kin will still ultimately have the power to refuse the removal of the organs.

The 'opt-out' system aims to increase the number of life-saving transplants in Ireland.

Donna has welcomed the news but stressed that she understands organ donation can be a sensitive and difficult concept for mourning families to get their heads around.

"I know it's hard. It's devastating to lose someone you care about. There's no pain like it," she said.

"But what if it was your loved one on the operating table? What would you say then? Could you say no? At the end of the day you're giving someone gift, it's beautiful. It's a miracle really."

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