My 26 years as a carer

When my life as a carer started way back in 1972, I could not begin to imagine what a change it would make to my life. My husband had been a fit and active young man of 32 when he was suddenly taken seriously ill with nephritis and needed peritoneal dialysis at our local hospital to save his life. For the first time since we were married we were separated.

I had worked in a hospital for a number of years, but being ‘on the other side’ was so different as I tried to come to terms with the seriousness of his illness. I watched helplessly as he grew weaker day by day. The strict diet did not help and the method of dialysis seemed so primitive; I will never forget the daily warming of the fluid bags on the old heavy radiators. This went on for three months. My life was centred around hospital visits and I felt terribly guilty about leaving my eleven year old daughter so much.

My hopes were lifted when he was transferred to Cardiff, but after a further 3 months of PD, a failed fistula and shunt with serious nerve damage to his hands and feet the only answer was a transplant. I was shocked, it was 1973 and transplant surgery was in its pioneering days – how could I explain to my daughter? We had been on our own for 6 months. I could only pray that that if the operation went ahead it would mean the end to my role as a single parent and we could be a normal family again.

My prayers were answered and he had a successful kidney transplant. He came home after a few weeks, the first time in nearly 7 months. It took months of physiotherapy before he could walk again and return to work but I soon forgot all the worry and depression I had gone through and our live returned to normal – with my husband looking after us again.

After 22 years of perfect health, a yearly check up in clinic and our lives were in turmoil again. His results were haywire and tests proved that the original illness had recurred and attacked the transplanted kidney. dialysis restarted two years later but so different from the first time. There were no long spells in hospital as his peritoneal dialysis could be carried out at home. it was another time to adapt our lives to change but we were both older and wiser and it seemed easier this time. He was never short of help as our two grandchildren, aged seven and eight, live next door and were forever popping in when Grampie was doing a bag change, it seemed to intrigue them.

After a while CAPD did not continue to work as well and sadly a move to haemodialysis was arranged at the same hospital he had attended so long ago. What memories it brought back. this time the fistula worked perfectly, but thankfully, after a year of dialysis another transplant came along.

It is now 1998 and my husband is in excellent health. I hope this kidney will last as long as the first one. The differences I have experienced in 26 years are extraordinary. The knowledge I have gained and the friendship I have made with fellow kidney patients and their families will last forever.

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