Feature from today's Weekend magazine in the Independent.
Definitely one from the "I have nothing to complain about" file.
For Isabel Terry, this was the most important journey of her life. The Cork woman, who has lived her life with congenital heart disease, was being rushed by ambulance from Bishopstown to Dublin’s Mater hospital for a life-altering heart transplant operation.
Her ambulance had a Garda escort, and traffic was brought to a standstill in Cork, in order to allow Isabel to pass through as fast as possible. In the matter of organ transplantation, time is of the essence.
The ambulance had just reached Fermoy outside the city when Isabel’s mobile phone rang. It was the transplant co-ordinator. “They said the heart wasn’t suitable,” recalls Isabel. “It was too small. We had to turn the ambulance around and just go home.”
As if that disappointment wasn’t enough, Isabel has since been called three more times, making it to the hospital on each occasion, going through all the prep work, only to discover at the last minute that the heart wasn’t suitable after all. “It’s the way it works,” Isabel explains. “The minute an organ becomes available you have to come in, and just hope that it turns out to be useable. But it depends on tissue typing and other factors.
“It’s a horrible feeling, and it really affects so many people in my life besides me, like all my family and friends. I was very disappointed, and sad, and upset, and cross.
“The last time I was called was in January 2008. I was very frightened that time. I just had a feeling that it wasn’t going to happen. My parents were so disappointed that it didn’t go ahead. But I said to them, ‘Try not to be too upset. There are parents who have lost a son or a daughter in order for those organs to become available. I may be sick, and unable to do much, but at least you have me coming home’.”
Isabel’s remarkable and inspiring story is just one that features in a new three-part documentary that has just started airing on TV3. Now approaching her 35th birthday, Isabel has been on the heart transplant list for six years. She is living on oxygen 24 hours a day, and hasn’t been able to work in seven years because of her condition.
As a child, Isabel says she wasn’t overly aware that she was ill, and, apart from not being able to run around as much, was treated no differently to her brothers and sisters. She had her first bout of open-heart surgery at age 12, and from 18 on spent a great deal of time in Harefield hospital in the UK. In 2001, Isabel’s lung was reconstructed, and she had a shunt placed in her heart, which gave her a new, albeit short-lived, lease of life.
“I felt great for a year and half afterwards,” Isabel remembers. “I went on my first girls holiday, and then the year after I went to Turkey with my brother. The day we came back from that trip I fell ill, and developed pneumonia. I was in hospital for quite a long time, and was told soon after that I needed a heart transplant. That’s when I went on the list.”
The last two years have been particularly tough for Isabel. Her dad died suddenly from a heart attack in December 2008. “That made me realise that life is too short, and I decided that I’m going to try and do as much as I can,” Isabel says. “None of us knows what’s around the corner.”
Last summer, Isabel’s case became even more complicated. An angiogram test found that she needed to get a lung transplant too. The heart and lung transplants have to take place at the same time, but nevertheless Isabel is determined to keep fighting. “I’m not one for giving up. I’m a bit brazen. I normally get what I want. I’m stubborn and I wont give in.”
Next month, Isabel is temporarily taking her name off the transplant list so that she can visit her brother and his family in Philadelphia. “I’ve discussed this a lot with my surgeon, and he thinks it will do me the world of good in terms of boosting my morale,” Isabel says. “He knows how important family is to me, and how close we are. I’ll go back on the list when I return home.
“I’m not scared, I’m actually really looking forward to going. I’ll have oxygen on the flight, and my brother will organise oxygen for me over there. I won’t be doing anything crazy. He has a four-year-old girl, and I’m her godmother. I’ve met her and we talk all the time on the phone. But he also has two little boys aged two and one that I haven’t met yet.
“If something should happen, at least I’ll have met his two beautiful boys. It’ll be great to start back into the wait feeling positive and happy. It will give me strength to keep going.”
Another story featuring in the documentary series is that of Aidan and Noreen Mulligan, a newlywed couple who proved to be a perfect match in every sense of the word. Last year, the Mulligans became only the second husband and wife to take part in a living donor operation in this country when Noreen donated a kidney to Aidan.
Aidan, originally from Swords in Dublin, was born with polycystic kidneys in 1979, but defied medical opinion to survive and enjoy a life relatively unencumbered by his condition. “I was blessed as a baby by Pope John Paul in the Phoenix Park,” Aidan says with a smile. “If you watch the video of the Pope’s visit, you’ll see me in a yellow baby suit being lifted by a security guard to be blessed. My mother was convinced it was due to the Pope that I’m still here today.
“It never really affected me when I was younger. I was always told it would start deteriorating when I hit my 30s. Sure enough, a couple of months before my 30th birthday my blood levels went the wrong way. Last February I started on home dialysis. I’d be hooked up to the machine for eight hours at night, and work as a hospital porter during the day. But the tube didn’t work properly for me, and I was in and out of hospital a lot with it.”
At the same time as Aidan started home dialysis, his siblings started tests to see if they’d be potential matches for donation. Aidan and Noreen had gotten married in October 2008, and dated for four years before that. Noreen, a nurse originally from Kenmare in Kerry, knew they had the same blood type, and underwent tests also.
In June, Aidan was told that he’d have to begin haemodialysis in hospital, but just as that news was sinking in, Noreen found out that she was a match, and would the best option as hers was a living organ from a non-smoker.
“It took a few months for all the tests - I kept volunteering for the next one,” Noreen says. “You have to do it yourself; the doctors can’t be seen to be pressurising you into the decision. I didn’t give it a second thought. Honestly I never thought we’d be a match. I said I’ll just do it, and if it’s negative, at least I’d know I tried.”
Living donation is a relatively new option in Irish healthcare, and although Noreen and Aidan’s story seems incredibly romantic, the couple has a very grounded view of their experience.
“It’s very new here,” Noreen says. “The couple that did it before us pioneered the way because the woman in that case was a nurse too, she’d worked in America, and knew that a living donation from a non-blood related person could work. It’s not that we’re some unique match; it’s just that they’d never really tested spouses before now.”
Be that as it may, it was still a unique challenge for a young couple in the midst of their honeymoon period. For her part, Noreen didn’t give it a second thought. “We were just so happy it worked out that way,” she says. “I was driving when they called me with the news so I pulled over. The co-ordinator told me and I started crying because I was so happy. Then I called Aidan and he was crying because he was so happy. It was a big relief.”
Aidan adds: “We knew that we’d both have a better quality of life afterwards. Noreen would be awake through the night when I was on home dialysis. We couldn’t even go to the cinema because I’d have to be home at 9pm to be hooked up.”
The operation took place last July. Noreen was a textbook case and was released after a week. Aidan, however, experienced a lot of complications. “I ended up having three operations,” he says. “I had a few problems, the main one being that they found a clot in my kidney. We had to prepare ourselves for the possibility that the kidney was going to come out again.”
“That was the worst time of all,” Noreen says. “There was a week where we were just waiting to see if the kidney would start working. It was a real psychological blow. We were devastated. We tried to console ourselves by saying, ‘Ok it didn’t work, he’ll go back on dialysis, we’ll cope’. We were building ourselves up like that. The staff in Beaumont were fantastic too.”
Thankfully, Aidan’s new kidney kicked in. His blood pressure is under control, and he’s just started back at work. The young people can now enjoy the normal things in life. “For our first wedding anniversary, we booked a night in the Four Seasons,” Noreen says. “Aidan got out of hospital for one night, but he had to be back in the first thing the next morning. We’ll have to push the boat out this year.”
According to the latest figures covering 2008, there were 81 cadaver donors in Ireland. That same year, the Mater Hospital conducted four heart transplant operations (three less than in 2007). Four lung transplants took place at the Mater in 2008, the same amount as in 2007.
St. Vincent’s Hospital conducted 58 liver transplants in 2008, while 136 deceased donor kidney transplants were performed at Beaumont Hospital. A record 12 of those transplants also included simultaneous transplant of a pancreas. Ten extra kidney transplants were conducted via living donors.
Figures for 2009 have yet to be confirmed, but it is believed that in the region of 18 living kidney donor transplants took place in Ireland, and some 150 cadaver kidney transplants.
For organ donor cards freetext the word DONOR to 50050. Organ Donor Awareness week runs from March 27 until April 3.