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 My name is Helen Miller , I am 38 years old married to John and mother of 2 to Abbie and Daniel. In 2003 I was diagnosed with Emphysema a debilitating chronic lung disease that would gradually become worse and leave me breathless and confined to a wheelchair. Through out my 38 short years I have been plagued by illness ranging from broken Limbs, Glandular fever ??? ( we think ) and an extremely rare auto immune deficiency which kills everything in its way. I have been in hospital many times over the years being kept in isolation, on wards which I was the youngest by 50 years, in medical wards where the elderly are dying on me every night , you name it i've been there. In April 2006 I was put on the Lung Transplant list at the Freemans Hospital in Newcastle. This decision was not taken lightly and I struggled a long time to come to this decision ( which I know now was really the only decision I could make) Since then I have had 2 calls both of which have been unsuccessful. I now live in hope that one day I will be lucky and receive the gift of a new life. I dedicate this web site to my family and friends who are supporting me and helping me through this traumatic time. |
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| This web site has also been created for anyone who is affected by lung diseases and transplants. I have included videos, links to important web sites and information that may help people who are waiting for transplants. You can read my Diary, Look at the Calendar of events, See all my Family photos and eventually read my life story. Please read this site and comment on the guest page. Also if you are willing please sign the organ donor register. |
 | My Life Story. A very short over view Helen Millers Story Up until 1987 I’d had the usual illnesses, 2 broken wrists after practising for my cycling proficiency badge and going into the back of a stationary wagon. I’d had chicken pox. Glandular fever (we think!!!!). In 1987 though I was struck down by a mystery illness, I lost over 2.5 stone ( taking me to 7 ) 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 id 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 called Dr R S Amos he put me through the worst set of tests I’m my life ( and I mean pain full ) only to be told he couldn’t find anything. The last straw was steroids and large doses of them. They knew the disease was an auto immune disease but they couldn’t and never could pin point 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 decided to transfer me straight to my consultant. The same week I saw Dr Amos who said yes there was indeed a problem but he was no expert and transferred me to Professor Moira Whyte. It took 3 months and numerous calls to get an appointment as they kept saying the appointment had t 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 Steve 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 Professor Whyte. She discussed my case in great length and said that eventually I would need a transplant. At this point I kept saying yes ok n 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 o to the toilet. I am on steroids (the last 20 years) Calcium tablets, aspirin as I needed a heart stent, Tablets for acid reflux. You name I I’m on it. The practicalities:1. Can’t get dressed on my own 2. Can’t wash my hair3. Can’t cook4. Can’t tidy up5. Can’t walk6. Can’t go out7. Can’t drive 8. Can sleep properly 9. YOU NAME IT I CANT DO IT!I went on the transplant list in 2006 and have had 2 false alarms. I try and stay positive but it is hard and as my health deteriorates so does my optimism. I 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. I have set up a web site www.helen-miller.co.uk and a blog site www.helen.miller.blogspot.com and http://www.blogstoday.co.uk/bloghome.aspx?username=WaitingForNewLungs I write a weekly diary for the Sheffield Star newspaper and do TV and radio to advertise the desperate need for donors. In my appeals I want to show that it’s just normal everyday families that are affected by transplantation and that you are more likely to need a transplant that to be a donor! |
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