31st August onwards

My Diary
4th September Thursday
Up but didn’t have the energy to bath. So just had quick wash and scraped hair back, this is my new trick don’t wash hair have in a pony tail. The nurse came to see me and I asked him to listen to my chest. A little wheezy if sill the same tomorrow then I’m afraid its anti biotics. No news about Louise – is that good or bad? I’m so depressed now I need the call now. I’m putting on such a brave face as if I’m coping but inside I’m screaming. To everyone who reads this treasure every moment of every day.

3rd September Wednesday

Feel a little wheezy today, not going to do much, sue came round to see me for an hour and then I drifted off to sleep again. Very groggy day.
I was asked to write a bit for another web site here it is
‘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; 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 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 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.
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 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.



2nd September Tuesday
Heavy sleeping again today but after I went to visit Dianne for the first time. We speak everyday on e mail but haven’t met. It was lovely. We both need desperately transplants but for totally different reasons. She needs one now!
1st September Monday
I went home this morning. To be welcomed by a grumpy Daniel who really didn’t want to go back to school and Abi saying ‘hi’ at dinner time. Great what a welcome!
I don’t know what it is but at the moment I’m sleeping a lot. I went to sleep at 2.00 till 4.00. Had something to eat then fell asleep again at 6.00 to be woken by John at 7.30 and said let’s get you in bed. By 8.00 I was asleep again and woke up the next morning.
31st August Sunday
I stopped at mums again today I was just too tired in the morning
to do anything. At dinner time I did get some energy back and they took me for a couple of hours to Meadowhall for a coffee and a but me a bit of makeup. Its wonders what a bit of makeup can do for you? Sleeping not so well at the moment again. My breathing (the noise and gasping) is waking me up.
30th August Saturday
I was still at mums on Saturday I knew at some point I had to go back home but today my Aunt and Uncle were coming up from Milton Keynes so another reason to stop at mums . We had a lovely day just chatting but at some points in the day I did get quite emotional and start crying. I hate doing this but I just can’t control it. Abi dropped by to show us her outfit for her night out and then vanished again. John and Dan phoned after they had been o the match so all in all not a bad day. Dad took some photos of me . I wanted some for memory purposes .