LIGHTING THE LOAD

Amina Lorgat, 53 from Lancashire, tells us how Kidney Care UK has supported her family following her son’s diagnosis

Amina Lorgat’s son Rayhan, now 16, has always been a hard worker and was determined to do well in his GCSEs. “He got great results and managed to get a place at the same school to study for his A levels, which he was looking forward to. However, the day after collecting his GCSE awards in 2023, he became very unwell. We were told his kidneys had failed and he would have to immediately start dialysis.”



Rayhan had been diagnosed with kidney disease in May 2022, after he started experiencing frequent headaches and feeling lethargic. “It was around the time when a lot of people were starting to experience long Covid, so I thought maybe he had that, as he’d had Covid. I also wondered if it could be anaemia. I took him to the doctors and they did a blood test, checking for lots of different things, which showed his kidney function was low. They also took his blood pressure, which was really high.

“The GP didn’t really tell us anything – they just referred him to our local hospital in Blackburn, who then referred us to the Manchester renal hospital where he was given lots of tests. I thought maybe he had a kidney infection, as the doctors kept asking questions about his kidneys. He ended up having a biopsy of his kidney and we were then told he had a condition called IgA Nephropathy (IgAN), which is a type of kidney disease where antibodies build up in the kidneys and cause damage. We were told it wasn’t something he was born with and they’re not sure what causes it.

“I think I didn’t really understand it at the beginning – the severity of it and how it would affect him – and Rayhan just kept himself focused on his college work and tried not to think too much about the diagnosis.” Shortly after Rayhan’s diagnosis, Amina came across Kidney Care UK. “I got in touch with the charity and they were really supportive. I spoke to someone on the advocacy team who arranged for me to have some counselling, but I don’t think I was ready for it at that point, as my mind was all over the place, so I only did a few sessions at that time.

“However, I also accessed the charity’s Facebook group and read about people who had made specific dietary changes to help with kidney disease, so we decided to try that. Rayhan did well and we were able to keep it under control for 16 months.”

In June 2023, Rayhan and Amina were told that routine blood tests had shown Rayhan’s kidney function had declined. Not long after this, Rayhan suddenly started to feel very ill. “He had got his GCSE results on Thursday night, then onthe Friday he was vomiting and seemed very unwell. I took him to the hospital, and we were told he was experiencing kidney failure. It was very scary as I think we had both put this prospect to the back of our minds.”

The next week, Rayhan was started on dialysis. “He started off having dialysis in the hospital, so we were there four days a week. I was also training to be able to do it at home. I had to stop working and it was hard giving up everything overnight, but Rayhan came first. “Rayhan had lots of ups and downs over the next few months but he was extremely resilient. He started college in Septemberand would go in very regularly, even though he often wasn’t very well and was getting used to dialysis. In January 2024, a month after switching to home dialysis, he was going in every day and coming home for five hours of dialysis.”

Around the time Rayhan started dialysis, Amina got back in touch with Kidney Care UK. “I was given more counselling, which really helped me as it was such a difficult time. As there’s no cure for Rayhan’s condition I knew he had to have dialysis or a transplant, so that was hard to get my head around.

“The counsellor was fabulous, she was well equipped and knowledgeable about everything we were going through and offered understanding and reassurance. She got everything I said straight away and reassured me that others felt the same way and that how I felt was normal. It really helped my mental wellbeing and allowed me to be the best mum possible for Rayhan too.

“The charity also helped with practical things – I’d left my job, so there were financial repercussions – and the patient support and advocacy officer listened and helped. I needed to do a Personal IndependencePayment (PIP) application, which can help with extra living costs for those affected by a long-term health condition. She put me in touch with all the right people and organisations to help with this.

“She also encouraged us to put in a grant application with the charity and asked what Rayhan needed. I mentioned he was finding it difficult sitting in the same position on the settee for hours for dialysis four times a week and it wasn’t good for his body. From this, we were given money from the charity to purchase a recliner for him to use during home dialysis, which allowed him to be comfortable during the treatment. He came home one day to find it in the living room and was like, ‘Oh wow, this is amazing!’ He was really chuffed with it and it was a lot of fun for him to play around with as well.”

Shortly after this, Amina also received a £300 hardship grant from the charity. “It was a really big surprise as I didn’t apply for it, and I felt so lucky. As a single parent family living off benefits, we didn’t have a lot of money to spend on ourselves, so we spent it on new bedding and doing our bedrooms up, which was nice.”

In June 2024, Rayhan was given a kidney transplant from his dad, Yanus, which enabled him to come off dialysis. “His recovery is going well so far, and he returned to college in September.

“My counsellor through Kidney Care UK really helped to support me through this stage, and she offered me a few sessions after the transplant. We weren’t really prepared for the aftermath and the intense recovery, so I have found it really helpful to chat things through with her.

“While the NHS has been amazing with helping Rayhan with his physical health, there isn’t much available for emotional support for carers, which is why the charity is so vital. Kidney Care UK has been very supportive during uncertainty, poor health and sudden loss of income. The advocacy team really understood my needs as a single mum and they alleviated some of the burden when there was so much going on, to ease the road for us.”

THE CANDIS BIG GIVE AMOUNT RAISED: £14,200

  • Kidney Care UK is the UK’s leading kidney patient support charity, providing support to kidney patients and working to improve health and social care services for patients, their families and carers.
  • Kidney disease can have a devastating effect and make life incredibly challenging. It can cause exhaustion, nausea, pain and anaemia. It can also make it hard for some people to work, and can affect education due to complex health requirements, so can have an impact on income. With energy costs rising, running a dialysis machine at home can be unmanageable.
  • The money raised in the Candis Big Give will help the charity to provide emergency grants to support kidney patients facing immediate financial hardship. These grants can be used to buy food and pay bills or replace important household equipment, which can make a huge difference to someone living with kidney disease.
  • As well as emergency assistance to make a difference now, the charity also provides longer-term help through its expert Patient Support and Advocacy team, who offer tailored guidance on how to navigate the benefits system maze, and help people access the funds and resources they are entitled to.
  • Visit kidneycareuk.org or call 0808 801 00 00 to find out more.

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