IT’S UNBELIEVABLY DIFFICULT. We’re going from day to day. It’s a nightmare situation. We may look like we’re holding it all together but we’re not really. You’re just going on autopilot.

Those are the words of Frances Taylor. Her 38-year-old daughter Helen has had Cystic Fibrosis since birth. Her health took a serious turn for the worse two years ago, and she now needs a double lung transplant.

Frances told TheJournal.ie that Helen’s condition went “rapidly wrong” after she got a chest infection, noting that doctors at Beaumont Hospital have been surprised at how much she has declined in recent months.

Her lungs are now working at 17% capacity.

She has been on a waiting list for a double lung transplant for almost a year now. The surgery could take up to 12 hours and Frances said the family is “terrified” Helen will be too weak to undergo this type of procedure unless suitable lungs become available soon.

“It’s the only hope,” she said.

Frances is in touch with the Mater Hospital, where all lung transplants in Ireland are carried out, on a weekly basis to see if they have found a match.

Their hands are tied. They have great staff and state-of-the-art equipment, but not the organs.

The family take it in turns to make sure someone is by Helen’s bedside 24 hours a day. “My husband Liam is broken-hearted just like me. We’re all in it as family. We’re all exhausted,” Frances stated.

Helen has difficulty breathing and can struggle to speak to her family. She is hooked up to oxygen to help this, but Frances said that trying to exhale is “like pushing against sand”.

In good periods she can talk to us. Being on the phone is out of the question so she’s cut off from friends.

Helen has a six-year-old son, Luke. He now lives with his grandparents in Donaghmede so his dad, Mick, can focus on looking after his mum.

“[Helen] had a baby perhaps unwisely with her illness … but four years later she was still good. She was an excellent mother,” Frances said.

The family brings Luke to visit his mum as often as they can, but have to limit his time with her to about 15 minutes so as to not tire her out.

He reads to her, she misses that she can’t read to him. He’s in senior infants now and has learned to read quite well.

When he asks why we can’t stay for longer I tell him it’s because the hospital visiting hours are very strict. He knows she’s very ill but doesn’t fully grasp the situation.

Frances said that Luke’s Christmas wish is that his mum will get new lungs.

I try to get down on the floor and play with him like his mum would but I don’t have the energy.

Helen, Luke (left) and her nephew Stephen.

Frances and her husband Liam have two other children: Louise and John. John lives in Perth, but gets daily updates on his sister’s condition.

“Someone’s with Helen 24-7. We update John every morning. He came home to see Helen a few months ago. It was unsaid between them but they both thought ‘Will we see each other again?’ … He had to leave the country like so many other people. It’s so, so difficult for him.”

Blessed with a son

Mick and Helen have been together for eight years. “My cousin and Helen are best friends, that’s how we met,” he recalled.

We both wanted children. We thought ‘we’ll see what happens’ … CF affects fertility. Helen was just lucky. We were just lucky. We didn’t know this was 6 years down the road.

She was so well up to 18 months ago, we were doing everything a normal couple would do. It’s an absolute living nightmare.

Mick described seeing Helen so ill as “absolutely horrendous”.

The worst part of it is is not really be able to do anything. We’re with her, we’re helping her … but we can’t physically cant give her lungs. For her the hardest part is not being able to be a mammy, she’s said that to be on numerous occasions. It’s really hard, you’re putting on a front for Luke … He knows Helen is sick to an extent, but he’s so young. We’ve been blessed with him, he’s adapted really well.

Mick said that Helen’s extended family are all suffering but remain “very hopeful” that she will receive new lungs. “There’s not enough organs being donated. It’s a tricky process matching tissue and blood type. In the back of your mind you always know it might not happen, but you keep going,” he commented.

Organ donation

Both Frances and Mick wanted to share Helen’s story so that people will talk to their relatives and friends about organ donation.

At present, even if you have an organ donor card your family’s wishes can overrule it in the event of your death. Frances said that people should let their families know if they want their organs donated when they die.

People think because they have ticked the box [for organ donation] on their driver’s licence that it’s sorted … What we’re trying to do is get people to have that conversation. A person could be in an accident or become suddenly ill. For a family dealing with that situation to be asked to donate a person’s organs has to be extremely difficult.

Frances described organ donation as an “extremely generous” thing to do, noting that one person can save several lives if all of their organs are healthy.

There were 294 organ transplants carried out in Ireland last year, including 32 lung transplants. The average waiting time for a lung transplant was 15 months.

HSE Organ Donation 2013 Annual Report HSE Organ Donation 2013 Annual Report

Mick said that if speaking out makes ten people have a conversation about organ donation with their families he’ll be happy.

Organ donation is in the limelight for a week every year but then it just seems to disappear. Something has to change. I wouldn’t wish anyone dying on anyone, but the simple thing is: accidents happen and people pass away. That’s not the time for a nurse to go into a family asking them to donate organs.

“It’s a personal choice, I wouldn’t hold it against anyone who wouldn’t donate … God forbid you go into renal failure and you need a kidney transplant, would you take it?,” he said.

Mick and Frances paid tribute to the staff at Beaumont Hospital and in particular those on St Paul’s Ward for their “fantastic work”.

Frances said facilities at the hospital are old but the Cystic Fibrosis team is “second to none”. ”From the physical therapist to the nurses to the lady who does the tea, they’ve all been so kind,” she noted.

HSE Organ Donation 2013 Annual Report HSE Organ Donation 2013 Annual Report

If you want to become an organ donor, you can request a donor card online or contact the Irish Kidney Association to request a donor card in one of the following ways:

• By email: donor@ika.ie
• By free-texting DONOR to 50050
• By calling 1890 543639
• By writing to: Freepost, Donor House, Irish Kidney Association, Park West, Dublin 12

Have the conversation.

Cystic Fibrosis is the most common genetically-inherited disease in the country. It affects many body functions including breathing, digestion and reproduction. Ireland has the highest proportion of people with CF in the world, with more than 1,100 people affected. More information on the condition is available here. 

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