Don’t worry about tomorrow says Aphria who was diagnosed with kidney disease when she was a baby
A 23-year-old biology graduate has learnt to cope with kidney disease by accepting life doesn’t always go to plan.
After a year of hospital admissions and tests, Kent-based Aphria Sheridan was diagnosed with congenital nephrotic syndrome at a year old and by the age of three received a kidney transplant from her dad, Paul.
However, the kidney began failing when she was 17 years old and for the last two years, has been on dialysis.
Learnt not to make plans
“I’ve learnt to not make plans as it is very difficult to prepare for things which are out of my control,” Aphria said.
“Realistically, I try not to put too much hope on things, as past experience has proven how quickly situations can change, and just take each day as it comes.
“Once you accept that, it takes the pressure and frustration off. Going with the flow makes life much easier!”
Dialysis for Aphria is life-changing and while some days it can leave her nauseous, tired and achy, other days she feels more able.
Ups and downs of dialysis
“I’d take dialysis any day compared to how I felt before I went on it. The year prior to dialysis, I was very anaemic and carrying a lot of excess fluid, making me uncomfortably swollen.
"This made me breathless and caused a constant cough because of the fluid on my lungs.
I could only walk short distances and could only stand for short periods of time. My concentration and brain fog were worse than usual, making engaging in university work and even conversation at times tricky as my energy levels were so low!
"This all culminated in me just generally not feeling myself, so am glad to feel more with it since starting dialysis."
From the moment she was born, Aphria had numerous hospital admissions eventually being diagnosed on her first birthday.
Both her kidneys were removed at 18 months old, and she was on hospital dialysis, until receiving a kidney from her dad in surgery at Guy’s Hospital, London.
“They couldn’t dialyse me properly anymore, so had the transplant earlier than hoped. I was only small, and I had not reached an ideal weight, but the surgeons couldn’t wait any longer.”
Wake up call about living with kidney disease
With the operation a success, Aphria enjoyed life to the full, with regular check-ups, and little idea of how serious her illness could be. However, when she began sixth form, a biopsy revealed the kidney was rejecting.
Doctors prescribed a different immunosuppression drug which gave side effects and made Aphria pay attention to her condition. “I’d not experienced many side effects before. It was definitely a learning curve. I became unwell much more frequently, making me realise the implications of having a supressed immune system, and developed a constant cough and hand tremors, along with muscle and joint discomfort.”
Determined, Aphria pushed through to earn a place studying biology at York University but she underestimated the change of going from home comforts to student life.
“It was a lot tougher than expected. I was often getting community infections, such as the flu and pneumonia, which would end in a hospital admission.”
Thankfully, family, friends and tutors were supportive and her drive to succeed, meant Aphria graduated in 2020 in the midst of Covid.
Haemodialysis began in York renal unit and switched to home dialysis when she moved home to Kent to shield with her parents. She has five sessions a week at two and a half hours at a time.
Relying on another person to gift me quality of life
“I wish I’d begun home haemodialysis earlier as it’s given me more independence and my quality of life back.”
Aphria is on the transplant waiting list while a friend and a family member undergo tests to see if they are a suitable match. Meanwhile, she says it is definitely a strange feeling having something so important being completely out of your control.
“I am very much dependent on someone else’s kindness to help improve my quality of life, although a transplant isn’t a cure, I am looking forward to the freedom a new kidney will give me, to be able to travel again without the constraints of dialysis and just be able to eat and drink whatever and however much I fancy and be able to relax in a deep bubble bath, as my line is currently in the way!
“Kidney disease makes you realise those who are truly there for you. Family relationships have become closer and I truly value my friends, they’re kindness and supportiveness has really been amazing!’
Aphria hopes that research can one day find a cure for congenital nephrotic syndrome and would love to see artificial kidneys as a standard treatment option, so people don’t have to wait for a match or live with the worry of organ rejection.
‘’Just want to say, if you are able, be your own biggest advocate! This is the most important thing I have learnt over the years because it really is you, and only you, that knows your body the best, and if you are not happy with something, question it! Take each day as it comes, and no matter what, you have got this!’’
Aphria is supporting our Transforming Treatments campaign. Find out more about the campaign.
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