Rosemary Barlow is 54 years old and lives in Hull. She was originally diagnosed with polycystic kidneys, an inherited disease in which the kidneys are full of cysts. Helped by her husband Ray, Rosemary dialyses at home three times a week - on Monday, Wednesday and Friday - for five hours each session in a purpose-built cabin in the garden. Rosemary has been on haemodialysis for 14 years, and until last September she was a part-time library assistant at the University of Hull Library, where for many years the Librarian was the poet Philip Larkin.
The Barlows have two sons, Antony (32), who has two children and lives in New Zealand, and Philip (31) who lives near Leeds. Antony has inherited her polycystic kidneys. Because she has too many antibodies, Rosemary is not suitable for a transplant but is determined to make the most of life on haemodialysis. She is chairman of the Humberside Kidney Patients Association with her husband as secretary, and has many social activities, many of them with “normal” people.
“I dialyse around my life, rather than live around dialysis,” she says. Before going on dialysis she had a party in the haemodialysis cabin. There was a ribbon round the cabin, and a friend dressed up in a big hat declared it officially open. “I wanted to make it a happy occasion“ Rosemary says.
"Each day I have different activities: On Monday lunchtimes I go swimming with friends. On Tuesday afternoons I go to a prayer group at the Catholic Church. I go to a dance class on Wednesday mornings, where we learn disco and line dancing. After that I go with my friends to have coffee, though of course I can’t have any coffee, then lunch at the University staff club. On Thursday I meet some friends, and on Friday catch up with everything else, including my Kidney Patients work. I often go into The Royal Hull Infirmary to drop in Newsletters and put up posters, and I meet management quite regularly. I try to keep the week-ends clear. I’m trying to go for walks to keep my muscles going.
Three times a week I go into the cabin at ten past four to get the machine ready and go on the machine at half past five, when Ray comes in and helps me. I do five hours on a single needle. I can’t personally have the normal two needles because I have a leg graft which I use for inserting the needle, and two needles would be too much. While I am on the machine I read, do crosswords, listen to radio and in the evening watch television. There is a heater, but it gets very cold in the winter. I sometimes get the KPA envelopes ready while I’m on the machine.
I believe in having bright colours around me and have Paddington Bear curtains. I’m obsessed with Teddy Bears. I have five or six in with me - they’re a very important part of my life. You’ve got to do happy things while you’re on dialysis to keep yourself from being miserable. My cat comes in with me and Ray checks my blood pressure and the readings and brings me a meal. He brings in a cup of tea at eight o’clock and sits with me for the last hour, and also helps me when I come off.
I’m on a low potassium, low phosphate diet and a fluid restriction of 1,000ml a day - equal to seven medium-sized cups but including liquid in soup and fruit. There are about 100 food items I can’t have - things like mushrooms, cherries, chocolate, ice cream, nuts, oily fish, and limits on things like tomatoes and milk. I could kill for drinking chocolate sometimes - I really could.
When I first went on dialysis I found it really hard to limit milk, because I used to have a drink of milk at bedtime. It’s hard when you can’t have coffee if you’re out, and things like crisps and chips are excluded. On a hot day, sitting outside a pub, you see someone having a half pint of lager and know that if you had one you wouldn’t be able to have another drink for the rest of the day. But there’s always something you can have instead. I have had to give up long drinks, but I can have spirits like whisky.I have to scan the labels for the ingredients. If there is soya protein, I can’t have that. I still crave for things I can’t have, like nuts, and I’m sick of boiled potatoes.
The worst thing about dialysis is that you have got to do it, no matter how poorly you feel or ill you become. Being on dialysis has affected Ray a great deal - he suffers from stress-related psoriasis, which the doctor says is caused by my illness. I go on that machine to make me well, and I want to make the most of my life. I don’t like going abroad for holidays, but we have holidayed in Jersey where there is a British Kidney Patients Association centre and at St Ives. For ten years Ray and I used a caravan owned and run by Humberside KPA at Grassington in the Yorkshire Dales. I think it is important for dialysis patients to have a holiday, especially for the carer.
Page created: 15 September 1999
Last updated: 18 April 2008
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