Heather’s Story

Today, we have a story from Heather, who wants to share her experiences and talk about how living with Chronic Kidney Disease affects her.

I am Heather and my condition is reflux nephropathy.

When I was seven years old, I was poorly every day with nausea and headaches. My vision would also blur. My mum took me to the GP and they could not find anything wrong.  My condition worsened; I was vomiting daily and I was finding it hard to walk as I was so breathless and weak.

One day, the doctor decided to take my blood pressure and believed the machine had broken. They took it three times to be sure and my blood pressure was 200/140. The doctor was so surprised a child could have high blood pressure; it was almost unheard of at the time.

I was rushed to Great Ormond Street Hospital, where I had multiple scans including MRIs, ultrasounds, and blood tests to find out what was causing such high blood pressure. The doctors at Great Ormond Street Hospital discovered I had scarring on my kidneys and that was responsible for causing the high blood pressure. They decided the scarring may have been from complications from UTIs.

I also had a temporary heart condition, which I have since recovered from, but still live with kidney damage and high blood pressure. Today, 25 years later, I am on blood pressure medication and have stage 2 chronic kidney disease with an eGFR (Estimated Glomerular Filtration Rate) of 72 ml/min.

It was difficult to process as a child. I was shielded from how serious my condition was but could tell by the adults faces and how ill I felt, that it was serious. I was briefly using a wheelchair as I was too weak to walk and I knew that was not a good sign.

Although I was pleased that I was finally being listened to, I was frightened. Some of the medical procedures, such as the MRI scans and blood tests scared me. I quite enjoyed the ultrasounds, as they did not cause me any problems.

As an adult, I was told as every kidney patient is so different, it is impossible to tell if my kidneys will stabilise or deteriorate one day. I am in a fortunate position compared to many as my kidney damage is still in the fairly early stages.

It does cause me anxiety that my condition may deteriorate someday, and I am just listening to doctors advice on how to slow the progression as I want to avoid needing dialysis or a transplant one day.  

I process it by focusing on the positives, remembering that there are others worse off than me, and I am in a fortunate position; being aware I have Chronic Kidney Disease and now armed with information on how to handle it.

I make life worthwhile by helping others. I have worked in the care sector for a long time. And my time in the renal unit at Great Ormond Street Hospital inspired me to help others. I have never looked back.

Thank you for allowing me to share my story.

Last Reviewed on 24 April 2024

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