AS plans move forward to move to an opt-out system for organ donation in Ireland, Mitchelstown woman Lynda O’Mahony knows better than anyone the importance of making organs available for transplant.
At forty, she was a fit and healthy mother-of-two, cycling the Ring of Kerry. At 41, she struggled to blow out a candle in her hospital bed. And at 42, she was back with her family to celebrate her birthday at home, restored to health thanks to a liver transplant.
Now living in Blackrock, Lynda's transformation means that she was able to enjoy Christmas with her kids and is even set to fly abroad for the first time in years. She owes it all to organ donation.
Lynda had been diagnosed with Primary Biliary Cholangitis (PBC), an autoimmune disease, in her late twenties but it had been managed with medication for many years. But soon after the Ring of Kerry cycle, in July 2015, her health started to rapidly decline. She became exhausted and felt like she was suffering from flu and a colleague commented that she, naturally pale, looked like she had a colour.
“I remember looking in the mirror and thinking, have I tinge in my eyes? I was trying not be paranoid but I’ll never forget the pain in my bones," she said.
“When I woke up the following morning, I looked like the Incredible Hulk in the bed. My elder daughter saw me and she got a fright; I wouldn’t let my younger daughter see me, I was terrified of scaring her.
“I was so sick, I went to Southdoc and they said get her to a hospital now. I thought my life was over, they thought I had meningitis and I was deteriorating fast.
“They didn’t think it was the PBC, because it would have symptoms that would get worse over time but I rocketed down. I spent 10 days in CUH, they though I got some sort of a bad infection and it hit my liver hard. I was told it was highly unlikely it would happen again but at the end of August, it happened again but way worse.”
After months of repeated, increasingly serious, infections, she was put on the list for a donation in November but warned that she might not get one. What followed was a hellish period for both Lynda and her family, who felt helpless as they watched her suffer.
She said, “I thought I was going to die. You are told you might not get [a transplant] and the reality of it hits you. I spent 13 months on the list and it was a very hard battle.
“I had a crazy, manic itch. I was using cheese graters, when I woke up in the morning I looked like something from The Walking Dead, covered in blood. I had no control over what I was doing because my mind was starting to go. My ammonia levels got so high, I was like someone with dementia. Liver failure is absolutely horrific.
“I was incontinent. I couldn’t shower. I went from being someone who could cycle 100k to not being able to dress myself.”
She is thankful for the support daughters received from their schools but said they were traumatised by seeing their mother so ill and the whole experience.
“Eventually they had to put in a hospital bed downstairs. I can’t remember the really bad parts but my kids can. My daughter came in from school one day and I had fallen out of the bed and was still on the floor, it had a desperate effect on her. My other daughter was in fifth and sixth year; such important years and she had become my carer.
“My own mother played such a big role, too, in the caring, I am very lucky to have the love and support of my family.”
By December 2016, when she was called to say a liver was available, Lynda was preparing for her own death.
“When I went for the transplant I was ready to die, ready to let go," she said.
"I was being wheeled down to the operating theatre with my dad and my brother and I will never forget the sense of calm. They were very emotional and I remember saying ‘please don’t cry, I am ready not to suffer’. Whether or not that meant I never woke up, I was ready for it, because I had had 13 months of torture and pain in my life and my family’s life. They had to watch it all.”
But she did wake up and her life changed once more. She said the year since the transplant has been a time of milestones and triumphs, big and small.
“Everyday I thank God and I am grateful every day," Lynda said.
"We spent two Christmases when I was very sick. I missed the turning on of the lights so we went in Christmas just gone, me and my little girl Isabelle. They were counting down and I turned around and she had tears pouring down her face. She said ‘I just can’t believe your here’. I’m so happy, I have a happiness I just can’t explain. I did the Evening Echo mini-marathon in September as well.
“But even just things like bringing my daughter to school, and brushing her hair. My kids aren’t grieving anymore, we are a normal family.”
Currently, the decision on organ donation rests with the next of kin but Minister for Health Simon Harris has committed to bringing in an opt-out register for organ donation before the end of the year. In December, his department published a survey showing 65% of people favour the proposal.
Lynda is strongly supportive of such a move.
“I am 100% in favour. One donor can save eight lives, more even with tissue. Every day I see different stories.”
In 2016, the year she received her transplant, 280 people received transplant surgery thanks to 77 families donating organs after death and 50 living kidney donors. But at the end of the year, 610 people were waiting for organs. She and her family and profoundly grateful to her donor.
“I have a little area in my house with angels and candles, I would be very spiritual and when I do things I thank my donor, I remember my donor all the time. When my older daughter Rachel went to Galway she went to the Circle of Life garden, devoted to organ donation. She went there to my honor my donor. My family and I say prayers and light candles, I would not be here without my donor, my donor is my life.”
Lynda is also keen to promote blood donation.
“Blood donation is as important as organ donation. If people don’t give blood we can’t do transplants," she said.
"I had to be given blood several times after the operation. They go hand in hand, I can’t advocate for one without the other.”
Although she will always have to be careful of her health and avoid infection risks, she is looking forward to the future and has a new milestone coming up this week.
“I just got the go-ahead to fly so I am going to Bristol on Thursday, I can’t wait, I feel like I am going to America," she laughed.
For information and to request a donor card, visit http://www.organdonation.ie/. You can email firstname.lastname@example.org, text DONOR to 50050 or call 1890 543 639.
Alternatively, you can sign the back of your driving licence to indicate your wishes and, most importantly, you can discuss your wishes with your next of kin.