The Health Minister has seen first-hand the reality of people living on borrowed time as they face an uncertain wait for life-saving organ transplants.
Edwin Poots has visited the home of Libby Nash just one week after she narrowly missed out on the double lung transplant she desperately needs.
Libby has spent her entire life in the shadow of a life-threatening disease — born with cystic fibrosis (CF), the 27-year-old from Randalstown even had to miss out on her honeymoon so she could receive the vital treatment she needs to stay alive.
CF affects the internal organs — especially the lungs and digestive system — by clogging them with thick sticky mucus which makes it hard to breathe and digest food. The condition results in chronic infections and inflammation in the lungs.
Libby — whose lungs operate at 17% capacity — uses oxygen 16 hours a day and takes over 30 tablets daily to manage her CF.
Struck by her bravery, Mr Poots said: “In meeting with Libby, I encountered a truly impressive woman.
“Her optimism and enthusiasm for life are inspiring and I was overwhelmed by her positive outlook in spite of the difficulties she faces every day.
“This meeting was significant as I wanted to make it clear to Libby how important it is to me to highlight the issue of organ donation. In doing this, we will move a step closer to helping those who so desperately need life-saving transplants.
“I would like to thank Libby for welcoming me into her home so warmly. I sincerely hope she gets the transplant she needs and deserves and that she gets to go on her honeymoon soon.”
And the Health Minister appealed to the public to “take the simple step” of getting on the Organ Donor Register.
He went on: “We all have the opportunity to save lives by joining the register and by discussing our wish to donate an organ with family and friends.
“It is one of the most generous things a human being can do to help others.”
Libby has spent five years waiting for a transplant and has travelled to hospital in England on five separate occasions after a possible donor was found.
Last Thursday, she received a call from the transplant co-ordinator at the Freeman Hospital in Newcastle-upon-Tyne, where patients from Northern Ireland go for heart and lung transplants.
“I was at work and they said they might have a lung and asked me to be at the airport in half an hour,” she explained.
“It was a bit of a rush but we managed it and when we arrived they started doing tests on me.
“I was trying not get my hopes up, but it got to 8pm and I started thinking this might be it as they were going to start prepping me for theatre — but then they came in 15 minutes later and said the lungs weren’t in good enough condition.”
And though Libby admitted the disappointment was upsetting, she insisted that she didn’t let herself dwell on it too much.
She added: “I have to stay positive, but a transplant would mean everything to me.
“I’ve been married for three years and would finally be able to go on honeymoon.
“I’d be able to do all the little things people take for granted, like walk the dog, go to the shops and try on clothes — and I could go out with my friends and dance instead of just sitting watching.”
There are now over 500,000 people in Northern Ireland signed up to the NHS Organ Donor Register, but more are needed. The Belfast Telegraph has been running a campaign to encourage as many people as possible to pledge organs in the event of their death. They must discuss wishes with loved ones to ensure permission is given. To sign the register and save lives, text SAVE to 84118, call 0300 1232323 or go to www.organdonation.nhs.uk.
‘New heart would mean everything to me’
By Lisa Smyth
Jonathan Tate is only 20 years old and his heart is failing.
Despite being born with a heart defect, he refused to allow his condition hold him back and he went on to qualify and work as a personal trainer.
However, after years of trying to live a normal life, he has been forced to give up his job working in a Belfast gym due to his ailing health.
“It is within the last two-and-a-half years that my condition gradually got worse,” he said.
“I got to the stage where I couldn’t walk short distances and I decided to say to my doctor. I was sent for a scan and that is when they told me I was in heart failure.
“From there on in it has got progressively worse and I was put on the list for a transplant at the end of January.
“It is very stressful. I’m not sleeping very well because I worry about what will happen if I go through with the transplant, but I know I need to have the operation.
“I am very limited on what I do on a day-to-day basis now. I get
pains in my legs and they are quite swollen and I have varicose veins because of my blood pressure.
“Gradually over time my social life has decreased because I don’t have the energy to go out.
“It would mean everything to me if I got my transplant because I could return to work and the life I had before I became really unwell.
“I have missed a lot of life, employment, exercise and the social aspect of life because of my condition, but nothing will change until a suitable donor is found.”