Kidney disease to transplant
"I was diagnosed with focal and segmental glomerulosclerosis (FSGS) in 2003. After a slow deterioration, I started automated peritoneal dialysis (PD) in 2011.
"In July 2012, my uncle donated his kidney to me. It was a hard phone call asking him if he would be willing to donate. It’s not like you see on the telly, I was in hospital for 13 days after, in a lot of pain. But it has brought us closer than ever."
Living with Post-transplant lymphoproliferative disease
"I don’t want to scare anybody with my story. Post-transplant lymphoproliferative disease (PTLD) is rare, and my kidney team say that they only see a few patients with it a year.
"In March 2024, I had been experiencing abdominal pain and bloating, and I was being sick; at one point I doubled over in the corridor at work and had to be sent home. Over the Easter holiday I went to visit family, and when I got there, I was in severe pain and my sister told me to go to A&E.
"I had a few tests, and I was told everything was ‘fine’. I was in agony, and I put my foot down because I knew something wasn’t right. A few hours later, after a CT scan, I was told to ring my transplant unit back in Exeter after the weekend because they needed to rule out cancer. I was in complete shock.
"When I got home, I had a biopsy. After three days the results came back and my consultants told me I had cancer, specifically PTLD. I had never even heard of it.
"They explained that the immunosuppressants I’d been taking since my transplant had caused the lymphoma. I asked if it was my fault. I just couldn’t get my head around how it had happened. They reassured me that it wasn’t anything I had done.
"My first thought was that I going to die. I was scared and the pain was unbearable, but I just had to trust the consultants and my kidney team. I had been under their care at Exeter for over a decade and they have always been amazing. It was awful but I got through it.
Treatment and chemotherapy
"I was referred to haematology and they confirmed it was PTLD. I was told I would need chemotherapy. I had six sessions in total, with a three-week gap between each. I was on steroids and injections for five days after each session, and pain relief throughout. It was intense."
Mariann during and after chemotherapy
"The steroids affected my eyesight, and I lost my hair. It would come out in the shower or on my pillow. I found that traumatic. I spoke to Lymphoma Action and Macmillan Cancer Support a few times, and I had counselling with Exeter Leukaemia Fund.
"My last chemotherapy session was in August 2024, and I had to wait another nine weeks for a PET scan to tell me whether the lymphoma had gone. I was told it was in remission on 3 October. Until they say that it’s all gone, until you hear those words, you just don’t know."
Remission, relief and looking to the future
"It was such a relief. My consultant said I’d had an excellent response to the chemotherapy. Mum and I went to the café and had a doughnut to celebrate! Being in remission was overwhelming at first, getting back to my job, dealing with life. It was a lot to take in, but my workplace have been really supportive, letting me take time off work and phasing me back in after the chemotherapy.
"Getting my energy levels back has been hard. This has been the case at different points in my life – it was the same when I was on dialysis. People think that if you’re being treated, you’re alright. My kidney function is about 39% at the moment, and I have been told I will not be able to do PD if my transplant fails. I’m dreading that, but you can’t worry too much. The main thing is that I’m not in as much pain anymore. Just getting back to ‘normal’ has been really good.
"On 3 October this year we will celebrate one year’s remission, and I also celebrate my kidneyversary on 26 July. Every year, I send my uncle a card to thank him. He doesn’t see it as a big deal, but it is amazing to do that for somebody. In 2023 I nominated him for the #MyKidneyHero Awards, which he won!"
"If you always feel bloated, you are being sick or you just feel like something isn’t right, get it checked out. There is nothing wrong with asking for help and support. It’s better to be over cautious.
"Stay strong, try to get enough rest and get in touch with charities that can support you. Kidney Care UK have been amazing. I had counselling during the pandemic, and they have also helped me with work, writing to my old workplace on my behalf to make adaptations as it takes me more time than others to complete my cleaning duties. I am also on the Kidney Care UK Facebook group.
Finally, don’t believe everything you see on the soaps when it comes to kidney disease and transplants!"