According to the NHS, 6118 people in the UK are currently on the waiting list for an organ transplant. They're waiting for a match to their blood group and tissue type (renal function – how well your kidneys work – is also taken into account, as well as a few other markers), and despite a new law that came into place in 2020 in which adults in England are presumed to have consented to donating organs after death unless they have opted out, it's no mean feat.
As the latest statistic shows, thousands of people are still on the hunt, and 19-year-old psychology student Simran from Walsall in the West Midlands waited five years for a kidney transplant. One year since her operation, she bravely shared her story with HELLO!.
"In late 2014, when I was 12, I started feeling really tired. I used to fall asleep immediately after coming back from school for hours and even when I woke up, I still didn’t have a lot of energy. I had a blood test in late February of 2015 and not long after in early March, my dad received a call saying that I needed to be taken into hospital immediately. There, my blood pressure was measured, and the results were concerning to the doctor. She said if we’d waited any longer, I could’ve had a stroke.
"I ended up staying in hospital for a week whilst they ran tests on everything: my heart, eyes, kidneys and my bladder. They concluded that I had Chronic Kidney Disease Stage 5 which is End Stage Renal Failure and at the time, my kidneys worked <8 per cent. The doctor said that there was no way of getting any function back so I would need a transplant.
Simran immediately after being diagnosed with Chronic Kidney Disease Stage 5
"I remember just crying. It was scary. Straight away, the search for a donor began. My parents and one of my aunts got tested to see if they would be able to donate, and the tissue typing and other factors matched surprisingly well. My dad was chosen as the best donor and spent six months being tested and then a few days before the operation, I went into theatre for the first time for a procedure to clean my blood of any antibodies that may reject my dad’s kidney.
"However, a day before the transplant was meant to go ahead, the doctors discovered that my dad had three arteries from his kidneys and I only had one, so the operation would be too risky to perform, and potentially unsuccessful. After that, we pinned our hopes on the organ transplant list which I joined in 2015.
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Simran preparing for what she thought would involve a kidney transplant from her dad
"In February of 2018, I started regular peritoneal dialysis (when a cleansing fluid flows through a tube – catheter – into part of your abdomen, to remove toxins and reduce the chance of kidney failure) and in November of 2019, my parents and I launched the akidney4simran page as it had been four years of waiting with no luck. We hoped that we could make new connections and find a donor by raising awareness about my situation, as well as others', and organ donation as a whole.
"I felt pretty strong until the three-year point when I started dialysis. The process meant I had to change my diet, while it was painful and restrictive, and I felt very self-conscious of the sudden weight gain and a tube in my stomach. In fact, the pain would often keep me up at night, and there were times when I didn’t have enough energy or strength to lift a fork to feed myself, so my parents fed me at the age of 15/16. It was exhausting physically and at times, mentally.
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"Then the pandemic hit, both alive and deceased donor operations stopped, and the lists were suspended, but in summer of 2020 I received a call saying that the deceased donor list was up and running again. In October, I got a call saying they'd found a match and I could come in for the op. I couldn’t believe it. I was at my grandparents' house, and I felt a combination of excitement and fear. It was actually happening, yet I still didn’t know for sure if it would go ahead, so I was trying not to get too excited.
Simran before her kidney transplant in October 2020
"My grandad and my aunt drove me halfway to the hospital and we met my dad, who took me to the hospital where my mum met us. I had to have a Covid test (if it was positive, the op wouldn't go ahead), but it came back negative, so I went through to the ward alone (my parents couldn't join because of Covid) and waited for the kidney to arrive at the hospital.
"I felt anxious the whole day, but my friends were calling me which helped to pass the time, and the doctors and nurses came in every so often to update me on where the kidney was and what was happening so that helped calm me a lot. I was actually on FaceTime with my parents when a nurse came in and said that they were ready to take me down to theatre.
Simran immediately after her kidney transplant
"When I came around, I felt really groggy and tired, but I didn’t have any discomfort or feelings of nausea and I was able to drink and eat, and the nurses said that the kidney was already draining. It had been a success! The donor kidney I received was from a deceased donor of whom I don’t know any details about, except that they were around 30 years old. I wish I was able to meet them and let them know directly how grateful I am to them, and how much they’ve changed my life.
"It has now been a year since my transplant and I’m happy to say that I still feel great. This past year has been like starting again; I don’t have to have my dialysis machine and I don’t feel anywhere near as tired as I did before. Surprisingly, I have suffered a little mentally because it's been hard adjusting. I feel like now there’s more on the line – in my mind, if I eat something that could affect my kidney or levels of medication, there’s something to lose, and the thought of losing my kidney makes me really scared.
"I'm not naive to the fact that it may happen one day, and I’ve had to learn how to push that thought to the back of my mind and enjoy the freedom I now have to the fullest. I know this is very much a positive thing and I should focus less on the 'what ifs'. I'm more grateful for my donor than they could ever imagine."
You can find more information on organ donors, including what to donate, how you can donate and more via the NHS, where you can also register to become an organ donor.
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