This is an interview with a Renal Patient about their personal experience and is not medical advice. If you are concerned about your own Health, please consult your doctor or consultant.
What is your name? KC
Are you the patient? Yes
How old are you? I am 53 years old
How long have you been a patient with kidney disease? I was diagnosed in my thirties with CKD – I seem to remember having a GFR of around thirty at that time. I had originally gone to the GP with weight loss and after blood tests I was diagnosed with an overactive thyroid. It was during a consultation about my thyroid that I was told that my thyroid issue was likely a symptom of kidney disease. This was confirmed shortly afterwards via the results from a kidney biopsy. I really was not looking forward to a biopsy on my kidneys but in reality it wasn’t worth the worry as it turned out to be ok.
What was your diagnosis? I know it has a technical name but in simple terms the filters in my kidneys were not working properly. It was something to do with by my own anti-bodies attacking my kidneys – an auto-immune disease.
What type of symptoms? I suppose because my kidney failure was slow – I did not notice any difference. It was only when my function was very low that I started to notice and feel ill. My fundamental issues were brain fog, extreme tiredness, and lack of appetite. I was fifty before my kidneys failed with GRF was less than 10 – so I had done pretty well over 20 years. I had been on different medications to try and keep my own kidneys including steroids and Plasma exchanges which helped prolong the life on my own kidneys.
Have you had dialysis? The need for me to be on dialysis had been mentioned to me on a number of occasions but I was in denial and did not think that I needed it but after my first session I felt much better than I had done in a long time. I had PD at home on a machine through the night. I found it easy to operate and to set myself up on it – it really did not give me much hassle. The company delivered everything I needed monthly and even delivered to holiday destinations. I did get training on the Renal Unit on how to look after myself and the dialysis kit – I also had home visits from the nurses in the first month to make sure everything was working properly.
Are you still on dialysis? No – I had a transplant in 2020. I was lucky in that my husband gave me a kidney on the Paired Exchange Program, so I did not have to wait too long and only had 18 months on dialysis. I had my transplant at Coventry University Hospital – my husband donated his kidney at the same time of the person who was donating their kidney for me. I take a lot of medication, but all is good and feel normal – not too many side effects and those that I have are very manageable. My husband doesn’t have to take any medication but does have an annual check-up to check his GFR.
