A 37-year-old nurse from Hampshire has spent more than two years receiving dialysis, while waiting for a kidney transplant that could transform her life.
Hema Thapa, who needs to dialyse five nights a week to stay alive, is speaking out to raise awareness of the impact kidney disease can have on mental health, as well as physical.
Hema says: “Dialysis has taken its toll, and I can’t remember what it feels like to be healthy. I don’t recognise myself anymore. It’s emotionally challenging and I’m sick of having to stay strong. The longer it goes on, the more I wonder when a transplant will happen for me.
“I’ve needed therapy to support my mental health but ongoing research and stories of people who have received transplants gives me hope for what my future could be.”
Hema Thapa
Diagnosed with kidney disease
Hema lives with epilepsy, and a routine blood test in 2022 led doctors to discover that her kidney function had fallen to 60 per cent. Doctors suspected an acute kidney injury, but despite many tests over several months, they could not identify a cause. Hema was told to expect that her kidney function would return to normal over time. However, further check-ups revealed it was continuing to drop at an alarming rate.
Hema says: “I was shocked to discover something was wrong. I was relatively healthy and hadn’t noticed any symptoms. In hindsight, I may have felt more tired than usual, but, as a nurse, I always felt tired, so I brushed it off. People think if you’re young and fit, you’re invincible. But everybody is at risk of kidney disease.
“When my kidney function continued to drop and reached 30 per cent, I began to panic. It was incredibly scary and I had a lot of pain in my body. Despite two biopsies, I still don’t know why my kidneys failed. That has been frustrating.
“By the summer of 2023, I was having headaches every day and was so tired all the time. My kidney function had fallen below 10 per cent and I had no choice but to start dialysis. It has been a real struggle going from being a nurse, to being a patient.”
Mental health and kidney disease
Hema dialyses at home overnight, five times a week. She needs to spend at least eight hours connected to her peritoneal dialysis machine each time.
Hema says: “The impact of dialysis is severe. I get sharp pains in my abdomen, and simple things like going for a walk or doing chores are exhausting. Enjoying a meal is difficult when there is so much you cannot eat, and having a shower is a challenge when you have to keep your catheter dry.
“I expected to be happy in my thirties. I look at friends enjoying their lives and I just feel so stuck. It has greatly affected my mental health. I’m not able to socialise or see my family as often as I’d like. I hoped to have children but being on dialysis has prevented me starting a family with my husband. It is hard to process. I’ve felt so angry, upset and have cried a lot. I have a loving support system, but I feel a type of loneliness that I just can’t explain.
“I’m just thankful that choosing peritoneal dialysis has enabled me to continue working full time. That is one thing that is giving me purpose. I’m fortunate to be in a managerial role which means I can work in a hybrid way. I feel so grateful for the support I’ve had. My colleagues really care and go above and beyond.”
Waiting for a transplant
Hema is one of around 7,000 people who are waiting for a kidney transplant in the UK. Her Nepalese background means that she is likely to face a longer wait than white patients, due to a shortage of donors from minority ethnic groups.
Hema says: “There is a lack of knowledge about kidney donation. There are fears that living organ donation would mean a reduction in quality of life. But that is just not true. You can offer somebody with kidney disease their life back.
“I’ve had to have these conversations with my family and it’s hard to bring up because it feels selfish to be asking somebody to come forward to donate a kidney to me. I’ve really struggled with that. Unfortunately, health reasons have ruled out many family members.
“I can’t wait for the day post-transplant when I don’t feel short of breath walking up and down the stairs, when I can have a regular period, a normal shower, go swimming again and don’t have to take a suitcase containing a dialysis machine to spend a night away from home.”
Research providing hope for the future
Around 30,000 people in the UK currently rely on dialysis treatment to stay alive. Many patients, like Hema, are wating for a donor kidney. However, each year around 15-20% of donated kidneys cannot be transplanted due to concerns about how well they will function.
We’re determined to reduce waiting times for patients and are funding researchers aiming to maximise the number of kidneys available for transplantation.
In 2023, we launched a new grant round named after Professor Mike Nicholson OBE. Jointly funded with the Stoneygate Trust, the latest round made more than £3 million available to support pioneering transplant research across the UK.
One researcher in this field is John Fallon, who was awarded £190,000 to investigate whether a technique known as normothermic machine perfusion can be used to improve the health of donor kidneys that may not have been considered suitable for transplantation, and therefore potentially increase the number of kidneys available for transplantation to people like Hema.
Read about this research: Can we improve the condition of damaged donor kidneys and make more available for transplantation? – Kidney Research UK
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