Helen Miller • Life Stories • LLTGL

Very sadly, Helen Miller passed away at the end of December 2008. She waited and hoped, and fought extremely hard, but her transplant did not come in time.

She leaves behind an incredible legacy through her Gift of Life campaign, which she ran with her local newspaper, encouraging people to register as donors. To find out more about Helen and the work that she did, please view her online condolence page

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Up until 1987, I’d had the usual illnesses; two broken wrists after practising for my cycling proficiency badge and going into the back of a stationary wagon; chicken pox and glandular fever.

In 1987 though I was struck down by a mystery illness. I lost over 2.5 stone, I couldn’t eat, I couldn’t walk, the pains in my joints were unbearable and my back felt as if a horse had walked all over it. My blood results were horrendous showing I had all sorts of nasty things going on in my body including an enlarged spleen kidney and liver. After 3 different hospitals and being put in isolation I was taken to a rheumatologist. He put me through the worst set of tests I’m my life only to be told he couldn’t find anything. They knew the disease was an auto immune disease but they couldn’t and never could pinpoint it. After 15 years of then being generally healthily having been married to John and producing 2 beautiful Kids (horrors now!) I started to feel unwell. This time though it was my breathing. Being over 10 stone I put it all down to being overweight and doing very little exercise.

This went on for a few months and gradually I couldn’t stand the gasping and breathlessness any more. I went to the GP for tests and looking at the results of an 80 year old smoker who should have been smoking 40 a day for 60 years (I’d experimented with smoking in my teens but nothing like this) decided to transfer me straight to my consultant. The same week I saw my old doctor who said yes there was indeed a problem but he was no expert and transferred me to a specialist Professor. It took 3 months and numerous calls to get an appointment as they kept saying the appointment had to be put back. In the end I just burst into tears and said I need someone now I can’t breathe. The following day I saw a doctor in chest medicine (I tend to follow him round hospitals quite a lot as he used to move to the freeman’s and so do I ) . They did a few tests and said immediately I had Emphysema, and although they couldn’t say it they presumed it was related to my auto immune disease. My immune system kills everything good and bad.

Now I had been diagnosed all I kept saying was just give me something so I can feel normal again (how stupid and naive I was). After about 20 minutes into the consultation and the fire alarms went off- just my luck. The final part of the consultation was done outside.

The next appointment was made for 6 weeks and I saw the professor. She discussed my case in great length and said that eventually I would need a transplant. At this point I kept saying yes ok in about 10-15 years.

That was 5 years ago and now I am wheelchair bound, on oxygen 24/7 I can’t be left on my own, I suffer horrendous breathing attacks when I can’t breathe in or out. I am on bucket loads of medication from tranquilizers, anti depressants, constipation relief (as I can no longer push(!) to go to the toilet. I am on steroids (the last 20 years) Calcium tablets, aspirin as I needed a heart stent, Tablets for acid reflux.

The practicalities are that I can’t get dressed on my own I can’t wash my hair, can’t cook, can’t tidy up, can’t walk, can’t go out or drive, can’t sleep properly… you name it I can’t do it.

I went on the transplant list in 2006 and have had two false alarms. I try to stay positive but it is hard and as my health deteriorates so does my optimism. It doesn’t help people saying ‘It could be tonight’ all the time as It also may not be tonight. We live by the phone as each and every call could be the one.

Helen kept a blog at www.helen-miller.blogspot.com