A Walk to Remember: Raising Awareness of Renal Tubular Acidosis

Paige Spiller shares how she was diagnosed with Renal Tubular Acidosis and why she decided to take on a 50 mile walk to raise money for the National Kidney Federation.

“So, this is my story…

I had a migraine one night when I went to bed in July of last year. My only medical history, dating back to 2020, is a diagnosis of pernicious anaemia. I am 32 years old. I never gave it much attention until I went to bed one night because I had a migraine, which I do get occasionally. I was horribly nauseous and couldn't sleep at all. I felt better the following morning; I was still not well, but the illness had decreased. I got up, dressed my kids for school, and got ready for work. I began to realise that my left side was getting weaker during the day. I assumed that fatigue was the cause of this. The following week saw a worsening of the symptoms. I was experiencing pain in every muscle and bone in my body. However, I wasn't sick. I thought this might have been caused by pulling muscles and being quite unwell, so I bought some deep heat and went on.

My general practitioner saw me, ran several physical examinations, and advised that I check into a hospital. Thus, I did. I saw some doctors, who prescribed some anti sickness medication, had me draw some blood, and advised me to relax at home while I awaited an MRI. This is what I did. I was not able to move for the past two days. My leg muscles totally disappeared. I went back to the hospital once more. After taking my blood and doing an MRI, they informed me that they thought this might be MS. There was a delay to see a consultant because this was a novel diagnosis. I realised I had to act quickly. The pain was intolerable. I called everyday pleading for assistance, I followed the advice to go back to the hospital, and I did. I was given a new drug to experiment with. I then signed off from work, unable to look after my kids, and was so immobile that I couldn’t even use the loo by myself.

I was lying at home after taking numerous drugs for two weeks without any improvement, when suddenly I started having chest pains, unlike anything I've ever encountered. I told my husband that there was a problem. He dialled 111 in his area for assistance, and an ambulance was dispatched. After being hurried directly to resus, I learned that my body had become septic and that my potassium level had fallen to 1.6.

A consultant explained to me that my heart had gone out of sync and would I agree to being resuscitated if required. I was then moved to an ICU unit where I spent the week. I had central lines placed and potassium was being administered. My levels then returned. However, I was then diagnosed with Renal Tubular Acidosis (RTA).

Despite being a nurse, I have never heard of RTA. I had a consultant who was helpful and explained the disease and how the condition is managed. However, it took me a long time to manage it. Because RTA is so rare, trying to find help or answers seems impossible.

I still struggle today with knowing my condition and how to manage it. My levels do drop frequency meaning I end up with more hospital admissions. However, with continuous medication and monitoring I can live my life.

I decided to do a charity walk to raise money for the National Kidney Federation to try and raise more awareness of RTA to my friends, family and community. I was sat one night with my friend and suggested we did a sponsored walk. I believed she was going to laugh at me, but she agreed. We set a target for £500 and would walk 50 miles. We have managed to reach this target and more.”