In June of 2018, I was told that I had no choice but to start dialysis until a donor was found for me (Picture: Lucy Parvin)
‘What do you want for Christmas?’ my dad asked me in November 2018.
So I answered honestly and said that the only thing on my list was a new kidney.
Little did I know that I’d actually get my wish on Christmas Day that very same year – and I’d also finally get my life back.
My journey towards transplantation began in 2011 and my diagnosis with kidney disease came as a complete surprise. I was 32 years old and had no idea that there was a problem at all until I went in for a routine blood test only to be told that there may be an issue with my kidneys.
After both a scan and an exploratory operation, I found out that I had endometriosis – a condition where tissue similar to the lining of the womb starts to grow in other places. This had obstructed my ureters – specifically the tubes that carry urine from the kidney to the bladder – and had also damaged my kidneys themselves.
I was told that this was extremely rare and that I was just unlucky. I felt shocked and scared. I had no symptoms and I thought I was healthy for my age.
I was initially treated with stents – a small medical device which helped to keep my ureters open and clear – but by 2013, these had become twisted, and I had developed an infection in my kidneys that had caused my kidney function to fall.
Many surgeries and lots of infections later, my kidney function had declined to the point where I was in renal failure. I had no energy, I could barely walk 100 yards, I felt extreme fatigue, vomited every day, had severe cramps each night and insomnia.
In June of 2018, I was told that I had no choice but to start dialysis until a donor was found for me. As a science teacher, I actually taught my students about dialysis so I knew all about it, but it didn’t stop me being petrified to start it.
Dialysis is a really gruelling process where you have to go into hospital three times a week for a four-hour session to remove waste products and excess water from the blood.
My dad took me the first time I ever did it – I couldn’t stop crying and I was shaking, as I knew once I started it the only way I would stop dialysis was if I got a transplant or if I died.
I was very lucky that I managed to get into a centre very close to my work. So I carried on working full-time, although I am not sure how. I did dialysis after work for four hours on a Monday, Wednesday and Friday evening from 6pm.
I had to miss important meetings to be able to get to dialysis (Picture: Lucy Parvin)
I was exhausted as on those evenings I rarely got home before 11pm. I didn’t really have a social life and the restrictions on diet and fluid intake meant that if I did go out I couldn’t fully enjoy the occasion.
Work were very good and appreciated that I had tried my best for it not to interfere, but I had to miss important meetings to be able to get to dialysis.
I did this for months, including Christmas Eve later that year. On that day, I left the hospital with the usual feeling of aches and exhaustion that is typical with dialysis, arriving home at around 11pm.
Not even half an hour later, I received a phone call out of the blue. I didn’t recognise the number at first and even contemplated whether I should pick it up or not, but I’m glad I did.
The mystery call came from my local hospital with the news every kidney patient dreams of hearing: they had a kidney available, and they needed me to get down there immediately.
It’s hard to process this sort of news so my father and I just focused on getting to the hospital as fast as we could, trying to ignore those thoughts of ‘what if we don’t get there in time?’ and ‘what if they decide I’m not eligible for the transplant?’ But overall, there was little time to reflect on how enormous an occasion this was and the real difference it would make in my life.
Through the early hours of Christmas morning, we were waiting for confirmation. Anything could happen – they could discover issues with the donor kidney and there were no guarantees the transplant would go ahead.
After waiting for what seemed to be almost an eternity, the news came through at around six in the morning on Christmas Day that I was going to receive the gift of a kidney for Christmas.
From that moment, everything seemed to happen so quickly.
When I woke up from the surgery, I was initially relived to be alive and then the surgeon told me that the kidney was a bit sleepy and might take a while to wake up, so I was apprehensive as I did not know if it would work.
I still believe to this day that I was in shock for a good four or five days of the seven I spent recovering in hospital. It’s something that you think about for a long time while you are waiting for a new kidney, so when the moment comes for your turn to get one, it can feel a bit overwhelming, especially over Christmas.
Once the kidney started to work I felt so much better and the realisation that I no longer had to be on dialysis was incredible. I felt very emotional as everything had happened so quickly.
I want to try and make a difference to the lives of kidney patients (Picture: Lucy Parvin)
Two years on from my transplant and I haven’t been back to the hospital, other than for check-ups. My kidney is working fine, and I keep my fingers crossed every day that my Christmas miracle continues for years to come.
The sad thing is that kidney transplants typically last for just 10 to 15 years and can come with a number of complications and failures.
Transplant is not a cure, it’s simply another treatment, one that continues to make my life liveable every single day but one that won’t last forever. I am constantly reminded that I might have to go through the whole ordeal again.
It’s one of the reasons why I have dedicated a lot of my time to raising awareness and funds for Kidney Research UK.
This year, I am taking on the challenge to walk 8,500 steps a day throughout December to raise money and represent the 850million people worldwide who are currently living with kidney disease.
There is still no cure for kidney disease, and the current treatments are there to keep patients alive but are never a certain fix. Dialysis takes up hours of your time and energy, and those of us with transplants are vulnerable, having to take immunosuppressants to stop our kidneys from rejecting it, which leave us exposed to dangerous infections like Covid-19.
More research needs to be done into transforming treatments so that more kidney patients can have better outcomes with their condition.
I want to try and make a difference to the lives of kidney patients and stop as many people developing kidney disease as I can while helping to fund vital research for future generations.
My future looks good. My recent blood results show my best ever kidney function since my transplant.
I love to travel, which I can now do and wasn’t possible on dialysis. I am planning a trip to Tuscany next year. I am free to socialise with my friends and go out when I choose.
For now though, I am spending a quiet Christmas with my parents, who were both amazing throughout my whole kidney journey.
To donate to Lucy’s Christmas fundraising challenge you can visit her Just Giving page here. For more information on kidney disease and the latest research helping patients you can visit the Kidney Research UK website here.