Learning from fellow kidney patients can make life a little easier
A 29-year-old man from Aberdeenshire is determined to support fellow patients affected by kidney disease, having lived with the condition since birth.
Following kidney failure as a teenager, Michael Reed received a transplant from his mum, Tula, in 2016. However, eight years later, he found himself needing dialysis when that kidney failed too.
More than three years on, Michael still receives dialysis three times a week, for four hours each session, waiting for a second kidney transplant to transform his life.
Michael says: “I never imagined I’d be on dialysis for as long as I have. It’s very daunting when you first start treatment. It has been so important to me to form friendships with fellow patients and support one another.
“That connection has made a huge difference. Learning from other patients helps you build an understanding of what is to come and how to make life a little easier. I’ve been through a lot with my kidney disease, so I’d like to share my experiences to help others. Just a little information can help settle someone’s anxieties. I want to show people you can still live a positive life on dialysis and that there is still a future to look forward to.”
Michael’s story
Tula discovered Michael’s kidneys were swollen after a routine scan during pregnancy. However, the extent of how he would be affected was not known until after his birth.
Tula says: “Doctors found he had chronic renal failure. He needed his first operation – a urethral valve implant – at just three weeks old. It was hard as a single mum with all the hospital stays. Thankfully, I had a lot of support from friends, family and the doctors.
“I was told that Michael would need dialysis and a transplant one day. Thankfully it did not get to that stage when he was a child. He was already going through enough. He needed to be fed through a PEG tube directly into his stomach due to bad reflux and had a lot of problems with his bladder.”
Michael says: “I remember spending a lot of my childhood in hospital. I regularly needed antibiotics to treat urinary tract infections (UTIs). One of the hardest parts was having to self-catheterise from when I was 11 years old because of my bladder problems. I needed to do this up to ten times a day as well as having an overnight bag.
“That caused a lot of insecurity for me at school. I used to ask Mum why nobody else was going through what I was. I was always behind other people my age.”
Transplant from mum
As Michael’s kidney function declined, a transplant became necessary to prevent him needing dialysis. That’s when Tula stepped forward to become her son’s kidney donor.
Tula says: “People say I’m brave for donating a kidney to Michael. I’m not, I’m just his mum! There wasn’t time to feel nervous or excited. Our whole lives had been filled with hospital appointments and operations. This was just the next one.”
Tula’s recovery was complicated by a blood clot, which is a risk of any stay in hospital for surgery. However, she has not been negatively affected by living with one kidney.
She says: “Donating a kidney was one of the best things I’ve done. I’d do it all again if I could! It was amazing to see the difference it made to Michael.”
Michael says: “Mum was determined the transplant would be from her. Naturally I was worried, but I’m so glad she came through it and is doing well. I remember after the transplant feeling so full of life. Six months later, I was working as a chef, catching up with friends, beginning a relationship and starting to live like everyone else.”
Dialysis treatment
Unfortunately, after eight years living with his transplanted kidney, Michael’s health once again began to cause him significant problems.
Michael says: “I became a dad and was doing well in my career. But then I started to have constant UTIs. I struggled for energy and it was increasingly difficult to wake up in the mornings. I knew something was seriously wrong.
“A few days after Christmas in 2022, I woke up unable to breathe. My chest was sore and my temperature was fluctuating. I couldn’t get out of bed. When Mum came over, she called an ambulance immediately. I was given oxygen and taken straight to A&E.
“I remember waking up in intensive care and being told I had flu, pneumonia, a collapsed lung and my transplanted kidney had failed. I needed dialysis right away. I didn’t realise how much that would affect my life. I have faced lots of complications, such as high blood pressure, UTIs, E. coli, shingles, a blood clot and prostatitis [inflammation of the prostate gland].”
He says: “It’s not exactly the life I hoped for, but I’m grateful to be alive. I am thankful for the positives in my life, such as spending time with my daughters as they’ve been growing up. Now they’re going to school, I hope I can finally get my transplant and get back to life fully.
“I’ll be able to get back to work, take my driving test, move house and we’d be able to go on a family holiday together. Being on the waiting list gives me hope that my transplant could happen at any time. A new kidney isn’t a cure and wouldn’t be the end of my story. However, I hope it would allow me to live a dialysis-free life for many years to come.
“Having kidney disease and being on dialysis isn’t easy. But I want to use my experiences to encourage fellow patients to keep fighting and have hope for the future. Whether it’s on the dialysis unit or online, connecting with people going through similar things is so valuable.
“I’ve also raised money to support renal patients at the Aberdeen Kiltwalk along with my sister Sophie. This helped provide funds for the Grampian Kidney Patients Association.”
Join the Kidney Community
The Kidney Community is a welcoming online forum, open to patients and carers at any stage of kidney disease. It is a safe space to share experiences, ask questions, find information and get support from people who understand.
Michael, who is a member of the community, says: “It’s great that healthcare professionals have the knowledge, but the patients and their loved ones are the ones who have experienced kidney problems first-hand. Forums like this are brilliant because they help show that you’re not alone. Everyone has so many different experiences that can help the next person.”
Kidney Community
A dedicated online forum for kidney patients and carers, helping people connect with others who might be going through similar experiences.
Co-developed with patients and carers, Kidney Community is a welcoming, safe space where you can share experiences, ask questions and find information and support.