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Dublin: 3 °C Wednesday 13 November, 2019
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'Helen didn't get lungs ... but we’ll make sure other people get them because of her'

“She wanted to live with every fibre of her being.”

LAST WEEK THEJOURNAL.IE spoke to Helen Taylor’s family about the importance of organ donation. Helen, a Cystic Fibrosis sufferer, had been waiting for a double lung transplant for almost a year.

She died on Thursday.

Helen is survived by her mum Frances, dad Liam, sister Louise, brother John, partner Mick and son Luke (pictured below, left).

Here, Frances recalls her daughter’s last days:

“The thing that I’ll carry with me – my everlasting memory of these few days – is how she fought so hard on Saturday. She was losing weight rapidly. Despite this, she put her all into eating food and doing her physical exercise. She needed increased oxygen and collapsed at the end but said: ‘I’m so glad I did that, I’m back on track. If I do this every day I’ll be fit for the transplant.’

“Liam contacted me on Sunday and said there was a big change, she was having difficulty eating and moving. At first we thought she had done too much the day before. I stayed overnight on Sunday, she was really having difficulty. I could see the deterioration before my eyes. On Monday she started to get tremors. She was creating a build-up of carbon dioxide: her exhalation was weaker than inhalation, it was starting to poison her.

“This didn’t mean she was unable for a transplant, it just made her need more urgent, but she was becoming too ill and too underweight.

The realisation hit her: she was going to die. The last few days of mental suffering may be equal to or surpass her physical suffering – which was tremendous. She’s 38 and had a son. She wanted to live with every fibre of her being.

“That night she sat there in a catatonic state saying ‘Luke, Luke, Luke’ on a loop.

“The nurses said this was unusual. I’m her mother and I knew it was because she was in shock that she wasn’t going to live. Her eyes were pleading with me to help her. I told her I couldn’t get Luke now because he was asleep, but that we’d get him in the morning. Helen stared out the window for the whole night – waiting for daylight.

When Luke came in she said ‘I love you’ and he said he loved her. Those were the last words she said. Once she told him that, she resigned herself to die.

“She went on morphine, the real decline was in the next 24 hours. We were all there with her, the people she loved and wanted: me, her dad Liam, her sister Louise, and partner Mick.

“Her brother John came home from Australia on Friday. We debated whether or not we should tell him Helen had died before he got on the flight. In the end we did so he wouldn’t be worried if he got delayed, so he knew he didn’t need to rush. That 24 hours of travelling was horrendous.

He went to the morgue and spent some time alone with her. He went to put his arms around her and he was shocked by the narrowness of her shoulders. He was afraid she’d break. He knew then how hard she had been fighting.

Grief

“Luke was supposed to watch the Toy Show with his mammy in hospital on Friday night.

It’s surprising that a little boy of six feels the same grief as an adult. When we told him Helen had passed away he just cried, he got unbelievably sad.

“I knew it was still on his mind when I put him to bed last night – he didn’t want to go to sleep. He felt exactly the same as me. We started to play a question game. I asked him something about school and he asked me something about work. Then he asked me: ‘Where’s mammy’s body now?’ I told him it was in the hospital. Then he asked: ‘Are they going to put her in the ground?’ I told him they are but that’s only what’s left of mammy – her outside. Her soul is in your heart and all our hearts.

“He goes up and down: his little mind has taken in an awful lot.

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“As I say this, it’s like I’m talking about someone else, like I read it in a book. When the reality of it hits me, I cannot function. I’m broken-hearted. I’m crying. It’s so painful that’s she gone. She’s left a hole in my life … an empty hole that will never be filled. The pain I’m going through now is nothing compared to what she went through, though.

I want people to know that a pair of lungs would have saved her. If there was a healthier appetite for organ donation in Ireland, less people would die needlessly. I’m asking people to think of the pain and suffering of people when they are saying goodbye to a loved one. Think of the pain and suffering that they’re in but don’t have to be.
Being on the organ donation waiting list was like dangling a carrot in front of Helen, but she was never going to catch it. It was the call that never came.

“I want to share our grief to help other people. There are four side rooms in St. Paul’s ward (in Beaumont Hospital). The day Helen died must have been absolute hell for the other CF patients. They must have thought ‘this is what’s ahead of me’. I’m doing this for them.”

Organ donation

A spokesperson for the Irish Kidney Association told TheJournal.ie that Christmas is an opportune time for people to talk about organ donation.

It’s a powerful legacy to leave your family. It’s a powerful legacy to leave society at large. Organ donation doesn’t just help the recipient. It has a ripple effect in society. Children and grandchildren get to enjoy their parents and grandparents and vice versa. Society gets to enjoy the successes of the transplant recipient because they got the gift of life. In some ways it’s the ultimate gift: the gift of a second opportunity.

Mick, Helen’s partner, said he wants to encourage everyone to consider becoming an organ donor.

From tomorrow, Wales will introduce an opt-out system for organ donation. Mick wants the same thing to happen here.

“I would have no bad feeling if people don’t want to be an organ donor, it’s up to the person – they should be able to opt out,” he said.

“Helen was just a fantastic person, she was an unbelievable person. I know everyone says that about people when they die, but there wasn’t a bad bone in her body.

“It was such a tribute to Helen that when she died every single nurse on the ward cried, nurses came in that weren’t on duty. Everyone from the cleaning lady to the tea lady were upset. She touched so many people. She was so nice and so kind. Helen packed so much into her life, she travelled the world. She never let the disease hold her back.

“We knew we were running out of time but we didn’t think we had less than a week. Helen was delighted with [last week's] article – it got such a positive response … Her decline was absolutely shocking, the doctors don’t know what happened. The day before she got really bad I spoke to her, I got to say what I had to say to her.

She wouldn’t want her fight to be in vain. She didn’t get lungs but we’ll make sure that other people get them because of her. We’re going to set up the Helen Taylor memorial fund to help other families in situations like this … It will be her legacy.

“No family should ever have to go through this again. No little boy should lose his mammy at six years old … She’s taken a bit of a heart with her.”

Want to become an organ donor? Here’s how:

You can download the app or request a card on the Irish Kidney Foundation’s website.

Alternatively, email donor@ika.ie; free-text DONOR to 50050; call 1890 543639 or write to: Freepost, Donor House, Irish Kidney Association, Park West, Dublin 12.

More information about Cystic Fibrosis is available here.

First published Sunday, 30 November

‘Luke’s Christmas wish is that his mammy gets new lungs’

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About the author:

Órla Ryan

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