Diagnosis, dialysis and moving across the world

"I was diagnosed with focal segmental glomerulosclerosis (FSGS) in 2004 whilst I was living in New Zealand; I had moved there in 2002 after a three-month holiday turned into three years. I was planning a holiday to Fiji and made a GP appointment to get injections. A blood test showed that my creatinine levels were high and flagged that there was an issue with my kidneys. I was told there were stages of kidney disease, and I was already at the final stage. It all happened very quickly. They said that if they hadn't caught it then, I could have died within a few weeks.

"I remember asking if they had got the tests mixed up because I didn't feel ill at all. I had no symptoms or indication that I was on the way to needing dialysis. I was 29 years old, fit and healthy; I would run along the beach before work every morning and go climbing mountains on the weekend. No one seems to be totally sure what caused my FSGS. I had a healthy childhood, living in the countryside, eating lots of fresh fruits and vegetables. No one in my family has ever had any kidney issues.

"My diagnosis felt like being pushed off a cliff into the unknown. It's hard to explain. If I could go back to then, I'd tell myself that I would eventually get through it, that it would be a difficult journey but there would be an 'ending' with a kidney transplant.

"The process from diagnosis to treatment was quick and I started haemodialysis in Auckland in January 2005. In New Zealand, they encouraged me to be in control of my kidney failure, rather than my kidney failure being in control of me. I did all my observations, I needled myself. I was a teacher so I would do all my school marking while dialysing and then take myself off the dialysis machine. They even gave us ice lollies on hot days; they were absolutely wonderful! I was in control of my own health and dialysis became part of my day. I just got on with it; it wasn't a big issue.

"However, New Zealand immigration told me that I had to go back to Belfast in March 2005, only a few months after starting dialysis, even though I had a work permit, the support of my local headteacher and the parents of the children at the school and even my local MP. That was hard. I had a job, friends and a life in New Zealand."

"Dialysing in Belfast was a very different experience. It frustrated me, there was an attitude of, 'You're the patient, we do everything.' At the start I was allowed to needle, but this only happened for a short period. I wasn't allowed to set up the machine or write the information into my file.

"I wasn't allowed to 'do' dialysis; it was the nurses' job. I was used to being independent and taking that control away actually made me feel sicker because I felt more like a patient. It is hard to describe. In New Zealand, it was like dialysis was more a part of my life. The changes did ease over time, and the staff in Belfast were fantastic and so lovely, but I would sit and dream about ways to have dialysis without needles, picturing a machine in a backpack so I could go up and down mountains and take it with me!"

Living kidney transplantation

"I have two sisters and during a visit together, they both said that they would like to donate one of their kidneys to me. I asked if they were sure because they both had young families and I wouldn't be able to give a kidney back if one of their own children needed it in the future, but they insisted it was what they wanted to try to do. I was anxious because I didn't know if it would be possible, but I was just so grateful they both wanted to donate.

"My younger sister, Shirley, went ahead and donated her kidney to me in 2010. We had an image of us being in adjoined beds, that they would lift the kidney out of her into me! But I was in level 11 of Belfast Hospital, and she was a few levels below. I saw her again about a week after my transplant and it was brilliant, I gave her such a massive hug, it was lovely. I was just so happy.

"I am close with both of my sisters, and Shirley now lives in Australia and has three boys. It is proof you only need one kidney to live a full life. Thanks to her, I've got better, and I have all this energy now. The difference is unbelievable; you don't realise how tired you are when you have kidney disease because you just keep pushing yourself. I prayed for a new kidney for years to get away from the cycle of dialysis. My sister is my angel."

Cancer diagnosis and remission

"In June 2024, I had a really bad earache which I thought I just had a cold, but on the flight back from a holiday in August, the earache got worse. I rang the doctor and they prescribed ear drops, pain relief and antibiotics, but nothing worked.

"I went to my kidney transplant clinic at Halloween, but I was just told that my immunity was low. They lowered the dose of immunosuppressants as that had worked before when I had had a cold but that didn't really do anything. I returned to the GP for a further set of antibiotics but by December I couldn't smell, taste or hear, and my throat was raw. It was affecting the entire left side of my face, and I was having really bad wine-coloured nose bleeds. In January I went to a another clinic to investigate the earache and congestion.

"In February, after surgery, a mass was found behind my nasopharyngeal cavity, where the back of the throat, nose and ear join. Within a week I was told it was cancer, specifically Diffuse large B-cell lymphoma. I know that the Non-Hodgkin Lymphoma type of cancer I had is blood cancer but whether the immunosuppressants I was taking caused it, I don't know. Hopefully, one day I may get an answer to that question.

"Nothing was really explained and I didn't know anything about chemotherapy or what to expect. With hindsight, perhaps it is the same as when people learn about dialysis – I remember seeing a dialysis machine for the first time in New Zealand and thinking it was a one-time thing!

"Chemotherapy started in March 2025, and it was a bit of a shock. That first week, there were lots of scans and back-to-back appointments. I had R-CHOP chemotherapy, which is a mixture of tablets, drips and injections, all timed and spread over six hours, and then different coloured drips. One is luminous red (known as the red devil!) and then luminous yellow and then a swamp-like green colour. You'd think you'd glow in the dark!

"For the first two or three days after those colourful drugs I felt okay, then day four to six I felt awful. I couldn't eat and had high temperatures, sweats, diarrhoea and vomiting. After four sessions of chemotherapy, I experienced fatigue similar to those who are on dialysis and awaiting a transplant.

"I also had hair loss, though my niece said I was very trendy because I had a mullet, so I was glad I was at least trendy! My last chemotherapy session was at the end of June 2025. Six weeks later I had a PET scan and another two weeks after that, I was told the cancer had gone which was such a relief. I was just so thankful."

Raising awareness of CKD and life after cancer

"Living on the transplant waiting list was one of the hardest things I have ever had to do. Feeling my life was completely out of my control. The fear of sleeping through the (transplant) phone call or worrying that I wouldn't get back to the hospital in time. Worrying about whether my body would accept or reject the transplant. The fear that I would never have a transplant, how long I would have to wait, whether it would it be a good match. Being aware that someone would lose their life, so mine could be saved. Thankfully the friends I made who were also having dialysis in my ward kept my spirits up and were a great support when times were tough.

"I am always surprised by stories of people who have no personal connection to kidney disease giving kidneys to other people. My classroom assistant at school was so moved when she heard I had received a kidney from my sister that she decided to give a kidney to a complete stranger! She even ended up meeting with the person who received her kidney. It just blows my mind that someone would do that for someone else.

"Fitness is a joy in my life. I still love water sports and long walks, and while the cancer has stopped that for a minute, I am getting back to it. I am also a beekeeper, and I do wild swimming in the nearby Strangford Lough. I honestly think swimming is the best way to get over something as traumatic as being diagnosed with kidney failure, expecting life on dialysis, receiving a transplant and having to accept that you have cancer and need chemotherapy. When you enter the water, it is like a hug and I just love it. I swim with a group of friends and they are wonderful. During chemotherapy they would drive me to appointments, stay with me and keep my spirits up. I am so grateful to all of them."

"I am also getting my hair back and it is going curly which is really odd because it used to be flat! I see my kidney consultant every four months and the oncologist every six months. I check every medication or supplement, sending an image to my kidney consultant for verification before I take it, so I don't put pressure on my new kidney. It is a gift to me, and I don't want to destroy it.

"After years of waiting my sister gave me the most precious gift imaginable. Not just giving a kidney, she gave me the chance to keep living my life. I will be forever thankful. She is so amazing and loving and she saved me when all hope was lost.

"It's been a challenging year and even though medically it has not been an enjoyable one, it has shown me the wealth and love of family and friends that I have."