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Shirley Rae of Horsham

Shirley Rae

I was 24 when I first went on to dialysis due to renal or kidney failure.

I don’t have much of a memory anymore! My memory has gone with all of the operations. My husband, Jim, remembers all the details these days.

I went to the GP as my legs and my ankles were really badly swollen. I had a daughter, Dawn, who was four years old at that time and the GP put it down to tiredness. I carried on with life -walking my daughter to school but I would get terribly out of breath.

Then one day the GP knocked on the door and said, ‘I’m terribly sorry, an amblance is coming for you straight away.’ I went to hospital and they put a shunt in my leg so they could keep me alive.

I went on to dialysis in 1972, and I had my first kidney transplant in 1974, when I was 26. As a 26-year-old with a young daughter, it was terrible, and very hard for me to take. It was my mum that donated the kidney. The transplant only lasted for two and a half years. I was on dialysis for two years, and was working as well as running the house and being a mother. I was so ill that it got to the point where my mum offered to donate one of hers.

That all went ahead and it was absolutely wonderful. But it only lasted two and a half years. I suffered from a one in a million occurence that stopped the kidney from working properly. I went back on to dialysis for ten years. I had the machine at home and I would dialise myself for eight hours every day. Then I would get up, take the dog for a walk and go to work.

I was a canine beautician. I always wanted to be able to work with dogs, and I pestered a vet and got the chance to do it. All dogs have their different style. You trim a Yorkshire Terrier one way and a Poodle another.

My daughter helped me with dialysis from when she was five. She used to come home from school, help me set up and then have a friend over to play. When you look back at it now, it sounds terrible, but it was just our way of living, and it worked.

Dawn lives in Melbourne now and has two children.  I was told years ago that sometimes these conditions can skip a generation, but so far the grandchildren are fine and I hope it stays that way.

The illness cost me my marriage. I got divorced from my first husband as he couldn’t cope with the dialysis. Then I met Jim - he lived next door. He would help me with the dialysis and cook meals for me. Your kidneys decide what you can eat and drink. I can’t drink tea, or eat chocolate. If I was to have a biscuit or a muffin it would have to be just before I go on to dialysis, so it can get quickly washed away. Socialising is difficult too!

I had my second transplant in in 1986. There were two of us using a kidney from the same donor, but sadly the kidney didn’t take for the other lady and she died. Mine lasted for 17 years. I wish I could have written to the family of the donor to say thankyou for the life it gave me.

I made the most of that second chance. Jim and I went to 28 states across America. We did it wrong to start off with - we went to Florida in August!  I love America - every state is different. I love the people, I love the food. We’d cluster three or four states on each visit and we’d go on road trips.

After ten years on dialysis, the second transplant was like being given a new life and the American adventures gave us many happy memories. We weren’t two hairy bikers, but our holidays were basically food road trips. We went everywhere and tried everything! Jim’s favourite state is Georgia - that’s why we named our cat after it. I love the South West of Florida.

 That was the payback from the donors point of view. It’s not just life - it’s freedom of life. We made the most of it! Transplants are wonderful as you get your life back.

But none of them last forever - it’s never part of you. In June 2004 I was back on dialysis and back on the transplant list. I’ve been back on dialysis for eight years. 

The doctors can’t tell you where you are on the list, so the wait is a nightmare. There’s no numerical pecking order. You might have only been on the list for a week, but if you’ve got a match you’ll get the organ. That’s why we campaign for donors.

My mum, Betty Foxwell, helped launch the KPA (Kidney Patients Association) 40 years ago. She was given an MBE in the New Year’s Honours List this year.  She’s 90 in November and she still goes out collecting money! She was worried that she couldn’t curtsey, so we practised!

I still go out collecting money for the KPA. Most people do not want to talk about becoming a donor - they would rather put a pound in the bucket.

You have to say you want to be a donor these days, and then they send you a donor card. Ideally, I’d like an opt out scheme, so we’re all on the donor register and if you don’t want to be on it, then you call up and say so. If you could pass on organs when you die, you’re giving others a chance to live. We’re having bodies being buried and cremated every day when there are people of all ages who wake up every day wishing for a donor.

I had open heart surgery last year and that was terrible! I thought ‘that’s it - my time has come’ but the surgeons did an incredible job.

I’m fighting fit now - I’m always fighting and that’s why i’m still here.