Rishani Heer shares with us her transplant journey and why she is undertaking the NKF Water Challenge this April in support of kidney patients.
“I was diagnosed with Chronic Kidney Disease (CKD) caused by a rare autoimmune disease in August 2013. After multiple hospital admissions and being treated with a variety of things, including plasma exchange and Cyclophosphamide (low dose chemotherapy), in autumn 2017 at the age of 27 I was told that I would require a kidney transplant.
At the time, my consultant explained they were considering a pre-emptive transplant, so trying to get me transplanted before needing dialysis. Being told that I needed a transplant was devastating. As much as I knew it was probably in my future, I didn’t realise it would be this soon and I was not prepared for it. I really struggled to come to terms with it. I had a great support network of friends and family who helped, but having to process the news was still very difficult.
The waiting for a transplant alongside starting dialysis in autumn 2018 made day to day life very difficult. It was physically and emotionally draining. Dialysis is the most draining thing – I can’t even begin to explain! Being hooked up to a machine for 5 hours at a time, three times a week (Tuesdays, Thursdays and Saturdays) is not much fun.
Saturdays used to be the worst – I would also be bitter that I was stuck in hospital while all my friends, family and “normal” people my age would be out having fun. Me on the other hand, pretty much every time I got home from dialysis would just be exhausted and wanted to sleep – sometimes I would go to sleep for 12-16 hours straight!
I was lucky enough to be transplanted in July 2019 with my wonderful aunt from Australia being my donor. Unfortunately, I had to have my transplant cancelled twice in the months before this due to various complications, I can’t even begin to explain the devastating effect this had.
The two years between being told I needed a transplant and getting the transplant were the hardest 24 months of my life – hands down. But the end result and the wonderful gift of having a successful transplant makes it all worth it. I am not going to lie, the first 3-4 months of recovery was difficult, very difficult… more difficult than I ever imagined but more mentally than physically. But when everything settles and you actually realise that you have energy, no longer ache all the time and feel better than you have in years, it is so worth it.
I was lucky enough to have the ultimate gift recently due to my transplant. I gave birth to a beautiful baby boy. Something which seemed so impossible a few years ago but luckily here I am.
It is impossible to put into words how much a transplant can change someone’s life. I cannot put into words the gratitude I have for my amazing aunt for giving me my life back.
So why am I taking part in the NKF Water Challenge? I’ve always wanted to help and try and raise vital funds for kidney patients like myself. I know first-hand how difficult day to day can be with CKD.
A transplant is just a long term treatment and not a cure, so even I have good days and bad. I am lucky to have a great support network who help me through the bad days, including my best friend who is doing the Water Challenge with me. But not everyone is that lucky. Whatever stage of kidney disease someone is at, no one should have to face kidney disease alone.”
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- Source: https://www.kidney.org.uk/Blog/rishanis-story