Celebrating 35 years with life-changing kidney transplant at Kidney Research UK London Bridges Walk
A woman from London will celebrate the 35th anniversary of receiving a kidney transplant which transformed her life, at a major charity walk this July.
Donna Degruttola, 62, was diagnosed with a genetic form of kidney disease as a 17-year-old, after her older sister’s kidneys failed in 1982.
Both sisters needed dialysis before receiving transplants. The average kidney transplant lasts around 20 years, so to reach 35 years is a significant milestone for Donna.
Sadly, her sister, Clare, died in 2016, so Donna’s participation in the Kidney Research UK London Bridges Walk will also be an opportunity to do something in her memory.
Donna says: “I am forever grateful to my donor and family for giving me my life back. I count myself very lucky to get this far with one transplant. I do get a bit twitchy on how much longer it will last but I totally trust my renal team. I know they will do everything they can to keep it going as long as possible.
“I got to know a lot of transplant patients over the years and sadly many have passed away. I’m doing the walk for everyone who is living with kidney disease and everyone I’ve met in the transplant unit who is no longer with us - most importantly my beloved sister Clare.”
On Saturday 4 July, Donna will join the Kidney Research UK London Bridges Walk alongside friends, Lyn and Kim. The walk starts at 11am from Potters Field Park. Participants can choose between a two- or seven-mile route, and places are still available.
Donna’s diagnosis
At 20 years old, Donna’s older sister, Clare, suddenly crash-landed into kidney failure. She was diagnosed with a type of kidney disease called autosomal recessive Alport syndrome (ARAS) - and Donna was told she may also be affected.
Donna says: “I had no symptoms at that time. However, there was a genetics doctor that was interested in Clare’s case – called Professor Flinter – who tested the whole family. That’s when I was diagnosed with the same condition. We were totally naive to it all, with little understanding of what we were facing.”
Alport syndrome is a rare genetic disorder, which can cause progressive loss of kidney function, hearing loss and eye abnormalities. It is the second most common cause of genetic chronic kidney disease (CKD).
Donna was monitored regularly before symptoms gradually emerged in her twenties. Meanwhile, her sister needed dialysis before receiving a kidney transplant.
Donna says: “Within eight years I went into full renal failure. I think my biggest issue was watching my sister. It was scary to think I could be going through that too. My symptoms started with blood in my urine and high blood pressure. As the years went on, I was experiencing tiredness and more protein in my urine. I found my social and weekend life was non-existent because I had no energy.”
Dialysis and a transplant
In 1991, at 26 years old, Donna needed to start dialysis.
She says: “I had continuous ambulatory peritoneal dialysis (CAPD) at home, which actually gave me a bit more life, not being restricted to hospital. It was fairly new then and helped me to feel better in myself.”
Donna continued her work as a bookkeeper and managed her treatment at home. Then four months later, she received the call for a transplant that would change her life.
She says: “My condition significantly affected my hearing, so I went to stay with my parents when my husband was away to make sure I’d hear the pager if it went off in the night – we didn’t have mobile phones back then!
“I’d been on a hen night and the pager went off in the early hours of Saturday morning. Mum came charging into the bedroom with the beeping pager, I was half asleep but soon woke up. I then phoned the hospital to confirm, and they said to get there as soon as possible.”
On 13 July 1991, Donna’s kidney transplant was a success. After five days in hospital, she returned home to rebuild her health and independence.
She says: “Alongside recovering from the transplant, I was also coping with the breakdown of my marriage. I thought, I’ve got this transplant now, I’m not going to waste my life. I’ve gone through all this and now I’ve got to get somewhere. I was a bookkeeper and I wanted to further it. I did a correspondence course to qualify as an accountant. I’ve been in a job ever since.”
While Donna has lived well with her successful transplant for 35 years, the hearing and vision problems caused by her condition have deteriorated. She had lens implants 25 years ago and is now waiting for a cochlear implant.
London Bridges Walk
Completing the London Bridges Walk will be a bittersweet moment for Donna, as she celebrates her kidney transplant milestone and remembers those who are no longer with us.
Donna says: “When my sister, Clare, died ten years ago, it was the most awful thing. Her kidney got to 30 years and then started failing. When I reached 30 years myself, I thought ‘is it going to hit me now?’
“It’s so important to keep supporting research wherever I can. When I’ve been asked to participate in research groups over the years, I’ve always said ‘yes’. It’s the only way things can move forward. It would be amazing if one day we can prevent patients from going into kidney failure altogether, saving them from a life of dialysis and transplants.
“That’s why I’m walking for Kidney Research UK. I will have a couple of friends with me who have seen me go through my kidney disease. I enjoy walking but it might take me longer than anyone else!”
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