My experiences of heart disease, dialysis and kidney problems

"My son, Elliott, was two weeks old when he was diagnosed with a heart condition and about one when he went into heart failure. We spent over a year in Great Ormond Street Hospital (GOSH) with Elliott connected to a mechanical heart until his transplant ten years ago.

"Elliott also had to go on dialysis for about a week because his heart failure was so bad and his kidneys took a big hit. It felt like he was connected to every machine available. It is common in heart failure that there are kidney issues; the heart can't help the kidneys* because they aren't getting the blood supply they need and they can't get rid of fluid."

* Recent research has shown that heart failure is a significant risk factor for kidney disease. When the heart is no longer pumping efficiently it becomes congested with blood, causing pressure to build up in the main vein connected to the kidneys and leading to congestion of blood in the kidneys, too. The kidneys also suffer from the reduced supply of oxygenated blood. For more information, visit the British Heart Foundation website.

"When we went in for Elliot's first clinic appointment, we were told he needed to be admitted, and he and I didn't go back home until he was transplanted. At that point I had stopped working because I was already caring for him at home. My husband Adrian and I had only bought a house in Basingstoke a couple of months before, so Adrian would stay at the house a few nights a week and stay with us in London for the other days. He would also stay for the weekend but there were always a few nights we were apart.

"Adrian's work was very good about letting him go when there was a major issue at the hospital, but day to day I had to be there on my own with Elliott. Even though it became routine, the reality was that our child was on life support and we were living in hospital. That is a really weird routine. Every day there was some new issue that for an ordinary couple would be an 'emergency', but that I would have to deal with on my own because we couldn't afford for Adrian to miss work."

"After a year living at GOSH, Elliott had a heart transplant, and his kidney function has returned as his heart has improved. While he was still an in-patient, but after he was on dialysis, he made a gradual recovery and went from dialysis to medication, to not needing anything other than close monitoring.

"His kidneys recovered by the time he needed to have his transplant but after the operation, the doctors thought he might need emergency dialysis again. His new heart wasn't working as intended so his kidneys had stopped working as expected. Thankfully, his new heart recovered.

"Because Elliott had the issues with his kidneys and needed dialysis when he was ill, he is now more susceptible to kidney problems than someone else in his position who didn't need dialysis. Once they have taken a hit, the kidneys sort of 'remember' it and his kidneys and kidney function are going to have to be monitored forever.

"The immunosuppressants for the heart transplant are also harsh on Elliott's kidneys, so we know there is a possibility of kidney failure in the future. My understanding is that one of the immunosuppressants his takes is a cytotoxic and because the kidneys are a filtration system, they have to filter these extra toxins and that is why it can cause kidney damage. We try to encourage Elliott to drink a lot of water to help the medication be easier on his kidneys.

"Before Elliott's transplant, we were sat there knowing there was nothing we could do to make him better, but that someone else could by donating their child's heart after their death. Someone who didn't even know us, who we will probably never meet - but thanks to their selfless decision, our child got better and we were able to go back home. That teaches you that life can be difficult and hard, but that there is a lot of good in the world."

"When you've been in a position where your child is very ill it gives you a perspective on what is important. We go to a lot of medical appointments, and a lot of our time is spent in waiting rooms. We know that doctors are often running late because of an emergency, but I always say to Elliott that it is better to be sat and waiting than to be the 'emergency'. We have been that 'emergency' person. It is a gift to be able to wait.

"Being positive is what gets us through. Things that may seem big, like being late to work because of traffic, are not that important in the grand scheme of things!

"Overall, we are really lucky that Elliott is as well as he is. His transplanted heart and his kidneys are pretty good, and he has just started secondary school. He plays football, he takes part in the British Transplant Games every year with GOSH.

"We have an ethos in our family that life is for living. For us, it is about grasping opportunities when they come. We do lots of things with the kids because we have realised that life can be short for anybody. We try to get the best experience out of life."

My role at Kidney Care UK and the British Transplant Games

"At Kidney Care UK, I am a Senior Data & IT Officer. I handle the data that comes in and I make sure our database is up to date, accurate and as it should be. I like to think my role supports the Kidney Care UK team, who then support the patients and their family members and carers. Basically, I make sure the system that other staff use is correct and is working for them and making their jobs easier, so they can better help patients.

"It's important that all the information we pull in as a charity, from details of the money someone has fundraised to requests for help from kidney patients, is accurate so everyone can do the best job they can. Organisations and charities like Kidney Care UK run on data and we need good data to support patients.

"I first heard about Kidney Care UK when I was at the British Transplant Games a few years ago with Elliott. Kidney Care UK are a big supporter, and my kids even got a little goodie bag from their stall! One of the things that drew me to Kidney Care UK was how much they do for transplantation and people who have been through it or are going through it.

"The British Transplant Games is an amazing event for transplant patients from across the UK where they compete in different types of sports for all abilities and medical conditions. There is also a donor run which is in memory of donors and it is so special and emotional to watch everyone finish.

"For Elliott, it is a place for him to go and be with children like him, who have the same concerns and worries and difficulties, but who are also just kids. They don't talk much about their condition. It is not a big deal for any of them and that is what is so nice. For me and Adrian as parents, it helps to have a community where you can talk with other parents who have gone through similar things, or who have issues to deal with that your other friends might not understand."

"When I saw my role at Kidney Care UK advertised, seeing who the charity was and recognising the name from the British Transplant Games, I felt like I had some lived experience that relates. I know what it is like waiting for a transplant, having a family member go through, the aftermath, understanding that a transplant is not a cure.

"I have lived in a hospital with my son for over a year, I have been on the receiving end of financial help, and it was really hard to balance everything. Someone needed to be there with Elliot and someone else had to pay for day-to-day life and take care of the house. Adrian wanted to be with us, but he knew he had to work and even then, it was difficult financially. Neither of us were able to be there for each other as much as we wanted to.

"We were given a grant by a family at GOSH who had been in the same situation as us. I was put in contact with them by a GOSH social worker and they helped us pay for some expenses and costs. The only caveat was that we send a Christmas card each year, which we still do!

"We were also given food vouchers from GOSH to use in the canteen and at local supermarkets, we were provided hospital accommodation and Adrian was given help to pay for train travel in and out of London to visit me and Elliott.

"There were other grants available that we didn't apply for because we were so amazed with how much GOSH was giving us and we felt like there were other people who needed even more help than us. We were lucky we could get by on Adrian's income and the extra help, but for families that can't do that it is hard to cope.

"Seeing how our patient grants at Kidney Care UK help people is amazing. You see why the need for our Patient Support & Advocacy Service is there; people have so many other things on their mind, so someone supporting you a little bit with some admin might seem like a small thing but is such a huge help. I know what it is like living with a family member with a chronic condition. I think we do really good work and until you've received that help you might not appreciate how important that is."