Giving life after death – or even when still living – is the greatest gift a human being can give another person. AASMA DAY talks to a Lancashire woman who had her life transformed with a heart transplant after suffering from severe heart failure since she was a baby.
Gazing at her nails in delight, a 26-year-old Sue Wrightson could not stop staring at them or contain her joy.
For the first time in her life, her nails were pink instead of blue – and her lips were also a rosy pink instead of tinged a permanent shade of blue.
These were just the first signs of the difference a heart transplant made to Sue’s life, but looking back on that moment after the transplant today she says: “That’s when I started living life.”
Sue, now 49, who lives in Leyland, was born with serious heart problems which were discovered when she was five-months-old.
Sue, who has been married to Mark for 17 years, explains: “I was born full-term and there didn’t seem to be anything the matter with me.
“However, my mum took me to the doctors because she noticed I was blue around the mouth a lot and she thought it was caused by bad wind.
“The doctor listened to my chest and immediately sent me to the former Preston Royal Infirmary.
“After examining me, a doctor at the hospital told my mum to take me home and enjoy me for as long as she could as he told her I wouldn’t live to be 12-months-old.
“At the time, my dad Gerry, who was in the Merchant Navy, was away and my mum was living with my grandparents in Penwortham.
“My mum and dad were absolutely devastated by the doctor’s prognosis.”
It was discovered that Sue’s heart was on the wrong side of the body– on the right instead of the left, a condition called dextrocardia.
Doctors also realised that Sue was back to front on the inside with her organs on the opposite side of their normal positions.
Sue says: “I am the mirror image to everyone else inside.”
Sue also had transposition of the great vessels and valves that weren’t working properly. As a result, blood wasn’t being pumped around her body efficiently and this was causing problems.
As a baby, Sue regularly suffered heart attacks and sometimes had as many as eight in a day.
She once suffered such a severe heart attack she was rushed to the Royal Liverpool Children’s Hospital. Sue was kept in and underwent two major heart surgeries before the age of 18 months.
Sue says: “I managed to outlive the 12-month prediction the doctors had initially made and I came home and was reasonably well, as in I wasn’t having the heart attacks any more.
“But I was still blue and couldn’t walk properly. I started walking later than most children.”
As a child Sue had regular check-ups of her heart. She was a pupil at Kingsfold Primary School followed by Penwortham Girls’ High School.
Sue remembers: “I was in a wheelchair all through high school as I could not walk any distance. I couldn’t even walk to the bus stop as I was so poorly.
“My lips, nails and skin were always blue and I was teased at high school for being in a wheelchair and being blue.
“Then when I was 15 and my heart had developed to adult size, I had another major operation.
“After this, I managed to come out of the wheelchair, but even then I couldn’t walk excessively.
“I think it was more me being pigheaded and not wanting to use a wheelchair.”
After completing Sixth Form, Sue went to Blackpool College to study dental nursing. She actually wanted to be a nurse, but was too poorly.
Sue recalls: “I didn’t have a wheelchair then but it was obvious my health was deteriorating.”
Sue worked as a dental nurse for two years and then at a car loan arrears firm.
Then at the age of 23, she suddenly suffered a stroke.
Sue says: “I was in bed and must have suffered a stroke while I was asleep but didn’t even realise it.
“I woke up in the middle of the night, went to the loo and realised I couldn’t move my arm very well. But I just dismissed it thinking I must have slept funny on it.
“I went back to sleep and in the morning, my mum came in to wake me up for work.
“She realised I’d had a stroke as I wasn’t speaking properly.
“I thought I was talking as normal but my mum says I was talking gobbledy gook, incomprehensible sounds coming out of my mouth.”
Sue was admitted to hospital where she was treated for a stroke which had affected the right hand side of her body. Luckily, she recovered from the symptoms within 24 hours.
Sue says: “Doctors told me the stroke was a sign that my blood was running like treacle through my veins.
“I had too many red blood cells in my body as my heart wasn’t working properly.
“Medics realised then my only option was a heart transplant.”
Sue was referred for a heart transplant in 1989 at the age of 24 and spent the next year undergoing tests in preparation for the surgery.
She was then told she had been accepted on to the transplant list and, as it was in the days before mobile phones were commonplace, she was given a bleeper to alert her when a donor heart became available.
Sue was bleeped in October 1991 and felt mounting excitement at the thought of being given a new heart.
She remembers: “I was just about to sit down to Sunday roast dinner and it was beef – my favourite.
“Then I was suddenly bleeped and couldn’t have my roast as I had to be nil by mouth for the transplant.
“I had to go to the Freeman Hospital in Newcastle Upon Tyne.
“My dad drove me there and they got me ready for the surgery and did all the tests.
“Then the doctor walked in and said: ‘We’re not going to do the transplant as the donor heart is too badly damaged.’
“I remember feeling this huge crushing disappointment.
“I knew having a transplant would save my life and it felt like the chance to have my life improved had been snatched away.”
However, just two months later on January 2 1992, Sue was bleeped once again and this time the transplant went ahead.
This time, an ambulance came to transport her and her mum while her dad followed in the car.
Sue recalls: “I had all the tests and was on tenterhooks thinking the transplant might get cancelled again.
“But this time it went ahead and the surgery took six hours.
“I was in intensive care for 12 hours and then put on the transplant ward and was there for four weeks.”
Sue remembers feeling different straight away after the transplant.
She says: “I remember feeling my heart beating on the opposite side which felt strange as I wasn’t used to it.
“I felt like a different person and I couldn’t take my eyes off my nails as they were pink instead of blue.
“My mum went into the hospital shop run by the WRVS to see if she could buy a little mirror so I could see my lips which were pink instead of blue.
“The shop didn’t sell any small mirrors but when my mum told the woman in the shop why she wanted it, she went into her handbag and kindly gave my mother her own little mirror.”
Sue says ever since her transplant, she has had a real zest for life and has wanted to make the most of her second chance.
She says: “I met my husband Mark two years later at a bike rally.
“He says my chat-up line was: ‘There’s more chance of you having a heart attack than me. I’m checked regularly, you’re not!’
“Since my transplant, I got a teaching qualification and I qualified as a nurse and am now going to do a scrubs course at the University of Central Lancashire.”
Sue, who works as a theatre nurse at the Royal Preston Hospital, was advised not to have children when she had a transplant.
She says: “Luckily, things worked out for the best as I married the right man as Mark didn’t want children anyway.”
Sue has been on anti-rejection medication since her transplant and needs to take this for life.
She explains: “Straight after the transplant, I was closely monitored and my anti-rejection medication was changed daily.
“A new heart is like a bug to your body and it doesn’t know it or want it and so tries to fight it.
“The anti-rejection medication needs to be right so your body doesn’t fight your new organ.”
Sue suffered a rejection of her new heart four years after the transplant and this was discovered during a major check-up.
She was admitted for a few days and had her medication changed and since then, she has been fine.
Sue has been competing in the British Transplant Games since 1999 and has won several gold medals for archery as well as one bronze and a few silvers.
She has also competed in the European Heart and Transplant Games in Norway, Austria, Dublin, Italy and Lithuania where she won a medal last year.
Sue also used to do agility training with her dog.
Sue says: “I just want to make the most of every moment of my life as I know how lucky I am to be here.
“It would never have been possible without my donor heart and I can never express how grateful I am.
“I found out my heart belonged to a 22-year-old called Sharon who died in a car accident.
“I wrote a letter to her family to tell them how grateful I was and that I was doing well.
“But I couldn’t find the words to express my thanks. I will never be able to say thank you enough.
“It is such a courageous thing to do when you have lost someone.
“But I am living proof of how much difference it makes to people’s lives.
“I think more people need to have the conversation with their loved ones about whether they want to donate their organs after death.
“Death is a taboo subject but people need to make their families aware of their wishes.”
Across Lancashire, there are 298 people waiting for a transplant. Last year 72 people in the county had their lives saved or transformed thanks to deceased organ donation.
Last year the number of people donating organs in the UK fell for the first time in 11 years.
The UK also has one of the lowest rates in Europe for families consenting to organ donation and in 2014/15 only 58 per cent agreed to donate their family members’ organs after they died.
NHS Blood and Transplant wants to get the whole nation talking about organ donation and the importance of sharing decisions on being an organ donor with family and close friends.
Anthony Clarkson, NHS Blood and Transplant’s assistant director for organ Donation and nursing says: “Every day three people die in need of a transplant.
“Yet across the UK, one in three adults haven’t considered organ donation or decided whether they want to be an organ donor.
“To save more lives we need more donors.
“To raise that number we really need everyone to understand the importance of not being complacent.
“We need to get to the point where organ donation is high on the list of important personal conversations we routinely have with loved ones.”
Reluctance to talk about organ donation means many healthy organs that could be donated aren’t used.
Anthony Clarkson adds: “Telling your loved ones you want to be an organ donor means your family will be in no doubt about your decision meaning your wishes will be fulfilled should you die in circumstances where organ donation is possible.”
Across Lancashire there are currently 473,475 people registered on the Organ Donor Register.
One donor can save or transform up to nine lives and many more can be helped through the donation of tissues.
Lancashire Teaching Hospitals released balloons to highlight awareness of organ donation. The balloons were released to represent the people who died and donated their organs after death to help others.
• To join the Organ Donor Register visit: www.organdonation.nhs.uk or call: 0300 123 23 23.