Living with rare kidney disease

“As soon as Ron told me about his diagnosis, I really panicked. I thought: ‘you can’t live without kidneys’. I didn’t know what the options were for him.”

Stephanie was about to drop her youngest daughter off for a swimming lesson when she received the phone call from her husband Ron. He had been feeling sick for weeks and after three separate visits to his family physician during which they had failed to pinpoint the problem, he had been admitted to hospital for further tests. At that moment she knew that life in their family was about to be turned upside down.

“In the early days it was a bit of a relief, finally knowing what was wrong with me. I’d been very scared for those few weeks, feeling weak with a low fever. Getting the diagnosis, even though it was quite a serious diagnosis, did make me think ‘ah, at least now we are getting somewhere’”

The tests had led Ron’s doctors to diagnose him with anti-GMB (anti-glomerular basement membrane) disease, a rare condition that arises when the immune system mistakenly attacks and damages the kidneys. The outlook seemed bleak, but there were options for Ron, and he and Stephanie worked with the doctors day by day to forge the next steps. One of the best options, they knew, would be a kidney transplant. Ron joined the waiting list but finding a match can take time, and in the meantime he would need to undergo regular dialysis to do the job his kidneys used to.

“They said that to me early on too, that the transplantation might not happen for some time.”

Dialysis may sound simple, but it isn’t, and over the course of his treatment Ron underwent several different kinds, all of which made him feel awful. More than removing the waste products from the blood, Ron found it affected many other areas of his life. His skin felt itchy all the time, particularly when he was trying to sleep, and he would feel cold even in the summer heat. He tried as hard as he could to keep up his old routine, but the burden of dialysis week in week out made it impossible and he was forced to quit his job. The impact went beyond Ron to Stephanie, who became his primary care giver.

“Ron’s life literally revolved around being able to survive another day. For me it was about being able to cope with my anger, my grief, my children and the lack of understanding around me.”

Two years on from his initial diagnosis, Ron received the life-changing phone call he had been waiting for. A kidney was ready, and he needed to be at the hospital within 45 minutes. He was there in under 30.

“After so much waiting, receiving that call makes you very, very happy, it is a fantastic feeling. The idea of it: it’s going to happen.”

As the euphoria began to fade, Ron was met with a potent mix of stress and excitement. Would this mean his life could go back to some semblance of normality? Throughout his time on dialysis, it was the love of his family, and the dedication of his wife Stephanie that kept him going. The proud father of two children, Ron was desperate to get a transplant and to regain some of their old life, but he also knew that the operation was risky, and that scared him.

“The idea that they could perhaps lose their father was unbearable to me, that is what drove me to want to survive, to be there the next day”.

In the days after the operation, Ron and Stephanie began to feel hope for the first time in two years. The transplant had been a success, and with each day Ron was feeling better and better.

“I felt as if I could, so to speak, just get out of bed and get on with it… although that could have been the morphine [chuckles]…”

There was still a long way to go for his recovery and adjusting to this new way of life post-transplant. A lot of things still weren’t certain. But Ron and Stephanie were ready to face the future together as a family.

“That was a lovely moment, when I visited the doctor for the final time and he told me – ‘you have a very good kidney – the kidney is top class’. I felt I could stop living from day to day, and dare to start thinking further in the future. I could move forwards again.”