A new heart from a stranger and a kidney from her mum
PUBLISHED: 16:21 23 August 2018 | UPDATED: 16:21 23 August 2018
Archant © 2018
Rachel Shingler was just 24 when her heart failed - and has more than one reason to be grateful to organ donors and transplant teams
Rachel Shingler is only alive today because a stranger signed up for organ donation. And Rachel is now doubly indebted to the miracle of transplant surgery, with one of her mum’s kidneys saving her from a lifetime hooked up to dialysis.
It was during a school netball lesson that Rachel, who grew up in Norwich, first became breathless and lightheaded. “It was really scary as I was unsure of what was happening to me,” she said. Eventually investigations revealed a thickening of the teenager’s heart muscle – but she was reassured that if it hadn’t worsened by the age of 20 then there was nothing to worry about.
Then, at 21 and in her final year of university, her life took a terrifying turn. In severe pain and barely able to walk she was admitted to hospital with a blood clot and dangerously abnormal heart rhythm.
“From that day I knew my heart wasn’t working correctly,” said Rachel. During a five week hospital stay she was implanted with a pacemaker and defibrillator. Later there were more operations to try to help stabilise her heart – and a DNA test revealed she was suffering from a rare condition called Danon Disease. Caused by a gene mutation, symptoms include weakening muscles, particularly the heart. Within a year Rachel was in heart failure and told she would not survive without a transplant. “I was terrified, but at the same time I had become so poorly I spent most of my days just lying in bed. I didn’t really have the energy to think about what would happen next,” she said.
Weaker by the day, she put what energy she had into trying to stay positive for herself and those around her, including her parents, Aylwin and Don, retired teachers who now run a Norwich B&B, sister Hannah, who was training to become a priest, and her boyfriend Dom. Rachel said her own faith also helped her. “I had so much love and support around me,” she said.
Knowing she might have very little time left, Rachel and Dom drove to the seaside - where she took a call telling her to go into hospital, to be ready if a heart became available.
“I wanted the journey home and to the hospital to go on forever as I was not looking forward to what was to come,” said Rachel. “The following day in hospital I was put on the critical emergency list and started new drugs to try and prolong what little heart function I had left.”
Three days later a suitable heart was found.
“At the time I just felt sick. I remember saying to my family that I didn’t want to go through with it, but deep down I knew it was my only hope and chance of survival.”
It was her last conscious thought for almost a month. Although the transplant itself was successful, Rachel had been so gravely ill she went into multiple organ failure.
“I was ventilator dependent, fed via a tube, my heart was supported by a pump and I was on 24/7 blood filtration as my kidneys and liver were not working. When the doctors stopped the sedation they were very concerned because I was not waking up as expected and wondered if the lack of blood and oxygen had caused brain damage. But as Dom (the most optimistic person I know) described, just as the last glimmers of hope were fading, I started waking up!”
At first Rachel was only able to communicate by blinking and moving her feet. Because Danon disease attacks muscles she had to relearn how to use her arms and hands, how to sit, stand and walk, how to wash, dress and swallow solid food.
“I had completely lost my independence and was reliant on someone to do everything for me. I remember thinking I would never get back to normal,” said Rachel.
Gradually she regained strength, but her kidneys never recovered. On dialysis at home, four times a day, she felt trapped and exhausted, and was advised to consider another transplant.
“I am extremely blessed and thankful that my mum was willing to donate her kidney to me and it was a perfect match,” said Rachel.
Now she is looking forward to a future made possible by organ donation. Full of admiration for all the NHS staff who have helped her, she wants to use her experiences to help others in similar situations, recruit organ donors, and perhaps work as a hospital art therapist for children.
Although she had registered as an organ donor she admitted: “If I’m perfectly honest, before my illness, organ donation was probably the furthest thing from my mind. I never thought that one day I may need one donor, let alone two, to prolong my life.
Her heart came from a 34-year-old woman from Northern Ireland. “I have made contact with her family and received a lovely letter back from her mum,” said Rachel. “Writing this letter was probably one of the hardest things I’ve ever had to do. How can you thank someone for having such strength and courage at such an awful time to do something so amazing?
“I am so thankful for the sacrifices others have made for me. As a result of their amazing generosity I will now be able to see my sister get married in October, slowly but surely be able to start to travel the world with Dom, and look towards getting married and starting a family of my own.
“I don’t think I will truly ever get over what has happened to me. My new heart remains a constant reminder of the incredible kindness of my donor and her family, allowing me and the five others she saved, to continue living.”
Mother to daughter transplant
When it became clear that Rachel would need a kidney transplant, her mum, Aylwin, offered to help.
“Donating one of my kidneys wasn’t a difficult decision at all,” she said. “I was so keen to help Rachel after all she had been through.”
Seven months of tests followed, including checks that she was not being coerced. “I was asked the question, if my kidney didn’t successfully transplant into Rachel, did I want it back or could it go to someone else? I was a bit taken aback but it only took a short while to decide it should go elsewhere.”
This April one of Aylwin’s kidneys was transplanted into Rachel.
“Rachel came off dialysis the day of the transplant and it was an incredible and emotional moment when the doctor said my transplanted kidney was working and her creatinine levels (the waste products in the blood that are normally filtered by the kidneys) were even lower than his!” said Aylwin. “I still have a few twinges but there shouldn’t be any long term consequences as we can all live perfectly well with one kidney.”
Aylwin, now 60, signed up as an organ donor just before Rachel was born and, like Rachel, supports an opt-out scheme. “If the unimaginable happens, it must be incredibly hard for families to suddenly have to face up to supporting the organ donation wishes of a relative. But the reality that many lives may have been saved as a result, could hopefully provide some comfort and consolation,” she said.
The government plans to change the law so that people will be considered as potential organ donors unless they opt out on a national register. This could be in place by 2020 and is expected to save thousands of lives.
For information on organ donation visit www.organdonation.nhs.uk