Perceptions
PerceptionsHi my name is Maureen, I live in Newport, South Wales and would like to tell you a little about my life. I was born with one kidney but as we know that in itself is no problem, but what I was not aware of was that I suffered from very high blood pressure.
After not too serious problems such as swollen ankles, nausea (but usually only when I went out for expensive meals) and cramps my GP was only concerned when as an afterthought he measured my blood pressure. Given that result and that I only had one kidney, I was referred to the Nephrology clinic.
I was diagnosed with ESF in September 1994 aged 32; it was such a shock to be told I had 5% kidney function and that my creatinine was over 1200. I was told not too worry I could have dialysis – but that’s for ill people I said and I felt quite fit.
Within a month I was on CAPD, my treatment of choice, mainly for the relative independence I could have. 10 months later I received my first transplant what joy, the first day out of bed after the operation I was sore but jubilant. I had 3 good years but sadly after a couple of rejection episodes it failed and after about 5 years I was back on CAPD.
Things were not working out too well and my levels went up so I was transferred to APD for 8 hours overnight and a bag exchange during the day, but as I had no kidney function I did not feel well at all. I managed to continue with my job as an electoral administrator and I remember the General Election in June 2001 as being particularly hard on me, but I was determined not to go onto haemodialysis and not to give up work.
October 2001, my second transplant, I was advised that it was not a brilliant kidney but I felt I had no choice and went for it. Seemed ok, but within a couple of weeks doctors realised that the kidney would not support me on its own and I was back on APD for 8 hours overnight but at least no daytime bag.
I was back on the list and hoping for a 3rd time lucky kidney. January 2003, the call came, why is it always in the middle of the night? This one was going to work out I was sure. But it only lasted 5 days; a blood clot in the renal vein. The only outward sign was my left thigh (never on the small side) had swollen so much that I couldn’t move it. I was so concerned about my leg I did not consider the kidney was in danger and after a scan on the 5th day I was taken back to theatre for the kidney to be removed.
What an incredibly hard blow, I was prepared for everything but not that, helpful counselling and consultations with my doctors persuaded me to go back on the list again. But I have so many antibodies from the transplants and blood transfusions that testing is exhaustive and I am not yet on the list although I was tissue typed some 5 months ago.
I pray that I can go on the list again and that I will receive a good kidney to have a few years of dialysis free life. However my life is not on hold as I feel quite well with the limited function of the 2nd transplanted kidney and APD. In the past couple of years I have holidayed in Canada, Ireland, Cornwall and London with my home choice machine coming everywhere with me. I have been on everything from a walking holiday to a weeks break at a health farm. I am planning a parachute jump in 2004 (it is a leap year after all) in aid of kidney research of course.
I have recently been appointed secretary to the Welsh branch of the kidney patients association and hope to bring my experience to the association and in a small way help other kidney patients.
The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349) and awarded charitable status (Charity Number 1106735). Give as You Earn contributions No. CAF GY511.
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Page created: 22 June 2004
Last updated: 29 April 2009