Gift Of Life

Diary week commencing 13th December

2008-12-18T04:40:00.000-08:00

Diary week commencing 13th December by Helen Miller.
13th December Saturday
Stopped in today watching Christmas films in my bedroom as John Hates them. They are all children’s films I love them, it’s not Christmas if I don’t watch The Wizard of Oz. Abi and I then settled down to watch Strictly and the X factor. Abi wanted JLS and I wanted Alex. It was nice spending time together. Daniel has been ill all day and stopped in bed being sick. I can’t be a mum to him and look after him as I can’t get upstairs and also can’t risk getting any virus. That upsets me more than anything.
I went to sleep happy. AT 2.00 am. I woke to the sound of my Oxygen machines alarm going off which means no oxygen coming through. Abi ran down stairs and started to panic which made me panic and one thing led to another and I had a panic attack and I had an accident. The feeling of not being able to breathe is the worst feeling anyone could experience. We woke Dan to fill my liquid oxygen but he was really ill but bless him he managed. After I composed myself after 30 minutes I phoned dad to come and pick me up as I have another oxygen concentrator at theirs. So at 2.45am I was sat in dads car and going back to theirs. I calmed down and went to sleep.

14th December Sunday
After tossing and turning I eventually woke at 11.30 to 3 messages from John. One saying where am I, The next one asking if I was ok and then the last one saying stop at mums until the oxygen machine mended. He’d obviously woken the kids and asked what had happened as he hadn’t heard a thing.
He phoned back and said the machine was now working after he’d cleaned it and was going to leave it running a bit to make sure it was ok. I decided to stop at mums for the night.
15th December Monday
Dan was off to London today at 5 so I heard him getting ready I couldn’t get back to sleep after that. Early start for me today as I had an appointment at Breath Easy at 11.45 for an assessment for rehabilitation. I was left waiting 45 minutes with o explanation as to why but soon discussed my requirements with the team and have discussed what I am able to do and what I’d like to do. I am going to join the gym and go on the exercise bike. I might be able to do a minute but all these minutes will add up.
Mum and I then went to Meadowhall which was nice. We stopped a few hours and did a little last minute shopping but then went home. I started feeling a little unwell and extremely hot at night but put it down to 2 very disturbed night’s sleep.
16th December Tuesday
I’ve been up all night; I’ve got a chest infection. I can’t breathe in or out properly my chest feels like someone is squeezing me so tight that my eyes are popping out. The only way I can relax is if I sit forward. Even if I sit upright it hurts. I asked Dad to call the Doctor and he came and confirmed my infection. A week before Christmas and I feel so poorly. Dan is still poorly at home in bed and I can’t be there for him.
Daniels teacher came out to see me and told me his attitude and behaviour was excellent He has achieved student of the Term, Governors praise and student of the week. She also brought me notes written by other teachers saying how well he was doing. We are very proud of him.

17th December Wednesday
Another awful night’s sleep coughing all night; nothing helped and sat up most of the night waiting for daylight.
A beauty therapist came to do some reflexology to see if that helped to relax me it did but the cost of this is really only for special occasions so I’m afraid that was a one off.
Mum and I watched 2 Christmas films whilst I coughed all the way through and my friend sue came to visit which was lovely.
18th December Thursday
Worst night yet for coughing ,it may be that the anti biotics are working and trying to bring the gunk up but it just won’t come up yet. I just feel terrible.
19th December Friday
My last Diary of the year and I want to ask you one thing to do for me for Christmas. Please discuss organ donation whilst you are all together over this festive time. It doesn’t need to be depressive and to make to sad. Have a laugh, have a drink and just state your wishes that’s all I ask.
Thank you for reading my diary all year and I want to wish you all a very merry Christmas and a happy and healthy new year. I hope and pray that I Santa grants my wish let’s wait and see.

Please sign up and talk to your loved ones this Christmas

2008-12-06T12:02:00.001-08:00

6th December

2008-12-06T11:59:00.000-08:00

Daniel

Hello to you all
It’s been a long time since I have updated this blog. I don’t know what as I have had the time but my mind has been in such a muddle and I have been concentrating on my ou assignments but that is really no excuse.
Well Christmas is nearly here and I have all presents wrapped and most of my cards written. This year feels quite strange, I think it is because it’s the third Christmas on the list and we have all had enough of the waiting but then I’m dreading the transplant and what life brings me afterwards. It’s very scary and I can’t imagine what I will feel or how my life will change. They say that having a transplant has a prolific change to your life and that’s scary.
Let’s get away from the negative and think about the positive this year.
John’s business has really picked up and has had new clients that hopefully are long term. I’m sure now his business with just grow from strength to strength and that is a big weight off my mind as I know he will be ok if anything happens (It wont! but I have to think like that)
Abi goes to University in January and has just had her 19th Birthday. In one way she’s ready to leave home and grow into becoming an adult and in another I feel she still has so much to learn and she isn’t ready yet. Financially I know she’s going to get into a pickle but I suppose that’s part of growing up. She can’t cook and thinks going out drinking is a must at Uni. I hope she realises pretty quickly that this isn’t the case and working hard is her main priority. She is studying a DIPHE (mental health nursing) for 4 years. I hope she enjoys herself and gets what she wants out of life by starting this venture. I’ll miss her terribly but I’m making sure that she will have Skype and I can see her weekly just to make sure she is ok.
Dan is the one who has surprised us all this year. Due to everything that has happened to this family over the past few years Daniel has been fantastic. Yes on occasions he becomes a ‘Kevin’ but this isn’t his usual personality. We have received numerous letters from his teachers, governors saying how well he is doing and won many awards such as student of the week, student of the term. As you may or may not know through Dan’s life at Primary school they practically wrote him off and said he wouldn’t amount to much. They didn’t even put him in for his SAT’s become going to the comprehensive (this disgusted me). They just couldn’t be bothered spending a little more time with him and understanding his needs. He became the quite boy who was never any bother and understood nothing. It wasn’t until leaving there and getting involved heavily in sports and being tutored by us all on various occasions that he blossomed. He is now predicted to get his GCSE’s (5 c’s in sports and public service) to name a few. I am so proud of him. He doesn’t know what he wants to do yet after leaving school but I am sure he will choose the right path to take.
I want to be there for him over the next few years and help and guide him through his first job and first girlfriend etc…. Though I don’t really need to worry as John is his best friend and they are inseparable which sometimes I do envy but are so glad about. They both need each other. It’s me sometimes that feels I’ve got no one but that’s me just being silly.
Today is the 6th December and I’ve spent the day alone. It’s been quite nice; I’ve watched films all day with no one saying it’s boring and want football on. I made sure I had lots of drinks and food at the side of me and the phones at the side of me just in case anything happens.
Well ill tune out for now
Love Helen
xxxxx

Latest Diary

2008-11-20T04:08:00.000-08:00

Diary week commencing 15th November

Saturday

I was up a few times in the night with a headache then realised Id not turned the oxygen down. I tossed and turned but then didn’t really get back to sleep, I had terrible stomach pain and my breathing was heavy. Put TV on at 8 and watched the news. Went to Meadowhall (as you’ve probably already guessed) and I have a gripe with the big cosmetic counters. I love make up and perfume and when I go and look around usually to buy ( I may add ) I feel that because I’m in a wheelchair and oxygen that the women who are offering sniffs of perfume etc or offers totally ignore me. This really hurts. One woman helped me today when we asked for help in Hof and she was excellent so thank you. Just because you are in a wheel chair doesn’t mean that you still don’t want to look and smell nice.
Family gathering at mum and dad’s tonight as dads’ birthday tomorrow. Chinese and Indian – FAB.

Sunday
Dads birthday –hope he likes his presents. Received mark for assignment and passed. My Aunt and Uncle (dads brother) coming today to see us. Had a lovely day but talked too much and once they went I was so tired I went to bed to rest and watch TV. That’s the trouble with me , when I go out or meet people I try my best to look and sound my best so sometimes giving people the wrong impression of how seriously ill I am as once I am on my own I just collapse and lay on the settee.

Monday
The government committee has released the UK taskforce report on the OPT OUT scheme for organ donation. I have put the link on my web site www.helen.miller.co.uk for you to look at. I am disappointed that they are not in favour of the opt out scheme but glad that the media are still giving organ donation the media attention it so desperately needs. This report took 2 years to write and whilst being written 2000 people died waiting for transplants (takes some digesting doesn’t it). All these reports, meetings, think tanks, takes months and years to decide on the actions they are going to take meanwhile thousands are dying. In the meantime its people like me that have to keep reminding people how important it is to talk about donation. Why don’t we have TV adverts like Wales? Why don’t the papers (apart from the Sheffield star!!!!!) make a conscious effort to remind people? I have written to my Local MP today asking these questions, I’ll keep you informed if I get a response.

Tuesday
My aunt and uncle came today to visit me. We had a lovely day. Dad and Uncle David upgraded my lap top that I’ve given abi for university. Aunty pat bought me a beautiful bag full of body shop goodies.
7.00 That night my local MP Kevin Barron phoned after the e mail I sent and we discussed what could be done about organ donation and the report that has just been released. I am going to keep in contact with him as he is chairman of the Health Committee and will be looking into this report.
It was my graduation today at The University of Huddersfield for my Cert Ed (teaching qualification) but due to this bloody!!! Illness I was unable to go .It has always been a dream of mine to wear the cap and gown and I wasn’t able to do it.

Wednesday
I had a really bad night couldn’t sleep and woke many times. I woke early and decided to get up as fed up of lying in bed. Lisa (transplant coordinator) phoned to see how I was doing. I’ve said I’m ok but the illness and the waiting has really taken its toll on John and the kids and I doubt we will ever get over that (only time will tell) I think chronic illnesses either make or break families due to the immense stress it puts on you all.

Thursday
Yes again I’ve not had a very good night sleep but I’ve got used to that now. I ordered some make up on the shopping channel (john will kill me!!!) on Tuesday and it came today. It’s lovely and cheered me up. So I’ve made a concerted effort to put my make up on even though no one will see me today. Abi has just heard she’s passed all her medicals for her nursing diploma in Chester so my daughter leaves in January to start her own life and a fantastic career. She intends to do mental health nursing. She is so excited. I don’t know how she is going to cope financially as we are not in a position to help a great deal me not working any more but I’m sure she will do well. My friend sue visited me today great to see her.

One day I'm fine, the next I'm really ill

2008-11-19T07:21:00.000-08:00

SATURDAY

John and the kids all had a lie in. I emerged at about 10.20am and immediately phoned mum and said I would love to go to Meadowhall and I’d be ready at 12 noon. Adrenaline pumping I got dressed and brushed teeth and had two cups of tea all in one and half hours which is a record. We did a bit of Christmas shopping and listened to the band in Marks, had dinner in Coal with Abi which was gorgeous. The staff said was I Helen from The Star. I’m feeling okay today which is quite rare for me nowadays so I’m happy.

SUNDAY

Watched TV this morning, the Remembrance service, and then got dressed. This year I bought an enamel poppy which I’ll wear all year round to show my respect. I’ve done some work on my degree and then sat and read the papers and watched TV. I was in contact with John all day as I have been buying Christmas presents for the kids. I’ve nearly finished now so I know if I get the call they all have something to open. I said this last year but I’m still here. Had a text from both Louise and Dianne who have had transplants and they are now eating and making good progress.

MONDAY

I managed to have breakfast, bathed and dressed for 1.30pm and then go on the computer. I’m on my next Open University assignment so it’s keeping my mind as occupied as it can be. ‘The call’ is always at the back of my mind. I’m trying to keep strong so ill last until I get the call.

TUESDAY

Hairdressers day whoopee!! The feeling of having my hair done and looking good makes me feel brilliant. This time I’ve got red hair with purple and black weaved in. I love it. Even though I’m on oxygen in a wheelchair there’s no point in not being adventurous, I’ve always loved having my hair done. Abi saw it and wanted her hair like it but I’ve told her to stick to blonde. Julie who I met through this diary has sent me the most amazing box of chocolates and I’ve dived in. I’ll certainly not be underweight anymore for the transplant. All in all a good day.

WEDNESDAY

Read in the paper about the girl who doesn’t want a heart transplant. I totally understand her reasoning and am proud of her decision. Having a transplant is not the be all and end all and when you talk to the consultants they tell you how it really is. This little girl has gone through so much is her short life that I admire her immensely.

I’m studying today and just sitting on the settee. I’ve tried to help John prepare dinner and mum tidied up a bit. Hospital tomorrow.

THURSDAY

Went to the Hallamshire hospital today for my monthly check up. I was there for about three hours. I’m okay and stable due to the slight tweaking of my oxygen and bipap and other medication. Six people came up to me and asked if I was Helen from The Star and said they avidly read the diary. They said it makes them not feel alone when they feel down and depressed due to their own illnesses. Also Val reads my diary and keeps all the nurses informed of my progress. Very tiring day but didn’t have a good night sleep.

FRIDAY

Feel a bit chesty today not an infection but just tight. My limbs are aching but I’ve just taken my pain killers so I hope they kick in soon. Two sets of aunts and uncles are coming to visit me this weekend so it will be nice to see them. I think I scared them with one of my last diary entries but as I’ve told you all one day I’m ok and the next I could be really ill. I’m going to mum’s this weekend as dad’s birthday is on Sunday and also I need some quite time.

*The Star’s Gift of Life campaign has recruited over 28,000 readers to the Organ Donor Register.

Currently, 8,000 people in the UK are waiting for a new kidney, liver, lung or heart. But a shortage of organ donors means hundreds people are dying on the waiting list each year. To sign up as an organ donor, visit www.thestar.co.uk/donor and click on the link to go to the Organ Donor Register.

Published Date:19/11/2008
Modified Date:19/11/2008

New Government report on the Opt out scheme

2008-11-17T06:20:00.000-08:00

Please take time and read the report on the Opt out scheme. There decision is to not agree with the opt out scheme due to different factors some i agree with and some i dont. What do you think? We need to raise awareness of the donor shortage whilst ever reports are being written meetings are being held people are dying. Its the time to act now as a nation not wait for the next set of reports and the next time meetings are being held. We are dealing with human life now.
I thought that Britain had got rid of the death sentance well there are 8000 people on it in this country that shouldnt be!!!!!!!

The pain is so raw I don't want to be here

2008-11-12T08:19:00.001-08:00

HELEN'S DIARY:

Published Date: 04 November 2008
HELEN Miller, from South Anston, is waiting for a lung transplant and is keeping a weekly diary to support The Star's Gift of Life campaign.
FRIDAY
I have been extremely ill, was in bed and couldn't move. I was struggling to breathe, my body ached. I took my painkillers and diazepam to try and calm me but they didn't touch the surface. I really thought at one point that I couldn't cope a
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ny more. I don't have this feeling very often but there are times when the pain and helplessness are so raw that I don't want to be here any more. I didn't even have the strength to cry. The hardest thing when you start to feel better is looking at your family and seeing their faces and the despair they have gone through.

SATURDAY
I made John, mum and dad carry me to the car and take me to mum's.
John had not slept for two days and was so upset he just didn't know what to do. The kids couldn't cope and were really upset. Then I started crying because I didn't want to leave John and the kids. You always need your mum, and my daughter needs me and I can't be there for her at the moment and it's killing me.
SUNDAY
I started to feel a little better but very weak as I had not eaten since Thursday. I managed Weetabix. In the afternoon I had a bath.

MONDAY
THIS is the first time I've been well enough to go on the computer and read the papers.

TUESDAY
I slept through the night – this is so unusual for me. I managed to bathe and get back in my pyjamas by 3pm today so things are looking up.

WEDNESDAY
UP at 11am today and washed by 2pm so getting better. I wish now dad had taken photos of me at my worst so I could show you all. Every picture I have is when I'm really trying hard to look well.

THURSDAY
I never know if what I am suffering is due to that or something else. I feel like I'm living in hell at the moment. I am positive but just weaker.

2008-10-21T10:49:00.000-07:00

HELEN'S DIARY: Living hell of life on the waiting list the past week commencing 13th October

SATURDAY

MY aunt came this morning and we had a fab day in Meadowhall, had a meal and shopped. She couldn't believe mum and I did this every Saturday but realised that this really was the only enjoyment I have outdoors that is secure and easy for me in a wheelchair. We then sat all night watching TV. Fantastic day.

SUNDAY

MUM, Abi and I had a lazy day reading and watching TV. I slept for five hours in the afternoon as I hadn't slept the night before. Don't laugh but I am falling to sleep every time I put on my Open University DVD. Its not boring but I'm sure there must be a subliminal message saying sleep!

MONDAY

THIS illness is one of the worst and unfair illnesses for your family to see you go through. There is never any respite, there is never a day when I feel better and need less help, there isn't a day when your family aren't under the extreme pressure. It's now been five years of going through agonising pain, being breathless and two years waiting for the call for a transplant. It's a living hell.

TUESDAY

I REALLY want to be at home and when I get there I panic thinking can I manage, but I can't at the moment.

WEDNESDAY

IT'S mum's birthday today. I posted her card from an online shop. Did tiny bit of shopping and then wanted to get home and sleep as didn't have a good night.

THURSDAY

HOSPITAL visit today. My nurse thinks I am having a build up of carbon dioxide in my body.

FRIDAY

MY consultant wants me in the hospital for tests as they think I am having carbon dioxide build up and if I fall to sleep I may not wake up. I am getting headaches all the time and not sleeping at night then dropping off in the middle of the day and not waking up without being touched and more or less shouted at. Abi overheard all this and was devastated, she went to work but then cried uncontrollably. They had to send her home.

Dianne Wakefield- update and story

2008-10-14T12:19:00.000-07:00

12th October- Update
Dianne is showing signs of improvement and is gradually coming off the sedation .

This morning (3rd October 2008 ) at 11.30 Dianne’s husband has phoned me to give me an update on her condition. The last time we spoke was last Thursday and everything was ok. John had the best nights sleep on Wednesday night that he’s had in 5 years . Then Thursday night he had a phone call saying Dianne had took a turn for the worse and had been put back on the ventilator and a machine to keep her new lung working ( a unique machine to freemans ) .They have put her on multitudes of different medications to help and also had to perform a tracheotomy. They don’t know what is wrong. It could be rejection, the lung could be damaged but at this stage they are taking it hour by hour. Dianne was so ill before having the operation and she fought to stay alive waiting for this and I hope and pray that she is going to fight this now with as much vigour .

Dianne has now been fully sedated since last Thursday and as soon as I know any news I will keep you all informed.

Yesterday this article was published after the Guardian at Dinninton published her story. Before it went to press on Wednesday night Dianne had her Transplant. She is doing well and her Husband says she is giving the thumbs up to everyone . I am so happy for her . So thats both my friends now . Lets hope and pray im soon.

Todwick woman's 'agonising' wait for donor

Dianne Wakefield, who is waiting for a lung transplant
Published Date:
25 September 2008
By Gareth Dennison

A TODWICK woman who is waiting for a crucial lung transplant has admitted her time is running out – after an agonising TEN false alarms.

Dianne Wakefield, of Staniforth Crescent, remains positive that a life-saving donor will be forthcoming, but says the wait is 'absolute torture'.

The 52-year-old, who suffers from auto-immune disease polymyositis, has been as far as the waiting room at Freemans Hospital in Newcastle before finding out a donation is unsuitable.

"You can't describe the emotional and mental torment that you go through," said Dianne, who has pleaded for more people to sign up to the organ donor register.

"It's absolute agony. But I now go up there with every intention of coming back. It minimises the stress that you put on yourself."

Husband John, 64, was a credit manager for a steel company before giving up his job to become a full-time carer for Dianne.

"We are really just on death row, just hoping that somewhere along the line we are going to get a reprieve," he said. "And it could be any time, day or night."

"Dianne disappears after they call, and I know that, if she gets the lung, our lives will start a new regime when she arrives home."

"I'm basically a nurse for her, 24 hours a day and seven days a week. I do the housework, cooking and washing. I do everything basically, and Dianne can't go out anywhere without me."

"We're really just surviving day by day. It's a time thing, and Dianne's is now running out very, very quickly. We have to guard against any infection, we are on tenterhooks all the time."

And when he officially retires next week, John will lose his £50-a-week carer's allowance.

"If you're not claiming any benefits then you have to do it all by yourself," he said. "We just feel so isolated sometimes and there are no support groups as such."

"We need to change people's perceptions. If people could see how Dianne is and not just stick their heads in the sand and do nothing about it, we can do that."

Dianne's problems began in 1997, when she was diagnosed as having a rheumatoid lung.

"I had some aggressive treatment back then, which helped," she said. "But it started to come back quite badly in 2002, and the same aggressive treatment didn't work that time. The lung disease just took on a life of its own after that."

"I have what they call an interstitial lung disease, which causes pulmonary fibrosis. It basically means all the little sacks start to die off, and so my lungs just get smaller and smaller and smaller."

"In 2005 I asked for a second opinion at the Royal Brompton Hospital in London, one of the best chest hospitals in the country. They told me that it was actually polymyositis, which is very similar."

She originally applied to be put on the list in January last year, but wasn't given the go ahead for a further four months.

"At first they said I wasn't suitable enough to go on the list," said Dianne, who had to give up her career at a big insurance company.

"I had to undergo a really strict exercise programme because at that time my upper body wasn't strong enough. We went back in May and they put me on the list."

Since then, 10 trips to Tyneside have seen eight end in unsuitable lungs, while the other two turned out to be double lung transplants, and so were given to someone needing two.

"I've been as far as wearing the operating gown in the waiting room," said Dianne. "About three months ago I had three illnesses virtually at the same time, and since then I've deteriorated quite a lot."

"So now I'm a top priority, which is ironic, because I've not had anymore calls since then. My time is running out. In July they were saying I would have about six months before I become too ill for the operation."

"I would plead with people to just contact UK Transplant and register as a donor. The donors are treated with as much respect as the transplantees."

"A lot of people say they want to be a donor, but then just don't sign up. It's so much easier if they have. Because, God forbid, if anything were to happen, checking the register makes it so much easier to approach the families. I definitely agree with the opt-out idea."

She added: "It will be so worth it when it happens. We are both still positive: it is going to happen."

07/10/08

2008-10-14T12:17:00.000-07:00

My family is feeling the painMonday

THIS illness has caused trauma to my family. It not only has caused me pain and agony but my family have gone through the same. I think people forget what happens to the family in times like this. My son needs stability and me going backwards and forwards to mum’s is not helping him.

Tuesday

NOT slept well. The headaches have been increasing lately and last night I tried one of the stick-on patches, which seemed to help.

Mum came round and cuddled me. I can’t stop crying again, it’s all getting too much for me to handle at the moment. I don’t look ill with my make-up on and hair done, when I can manage it. In a warped sense I think I’m OK, even though I have oxygen tubes all the time and only 18 per cent lung capacity left. I went for a short trip to Meadowhall and cried again.

Wednesday

DIDN’T sleep at all last night, felt very hot and uncomfortable. I’m trying to make a stew but it’s proved too much for me. I’m waiting for mum to come and do it. I try to sit in the kitchen and push the stool with my feet to get about, but I still get out of breath.

Thursday

THE weather has turned now and the wind and cold took my breath away. I am going to have to be careful and take a scarf with me to cover my face in future as I easily panic if the wind hits my face. Went out for my friend Sue’s birthday in the evening - difficult when you have two oxygen cylinders, wheelchairs, bags and the restaurants are small and have steps. Most shops and restaurants do cater for the disabled but some still don’t, which is surprising after all the publicity. I had a lovely meal but did then suffer from heartburn. Got to bed quite late, and had a bad headache. But it was worth it.

Friday

I AM now at mum’s and feel relaxed now my headache’s gone. My beautiful niece is coming tonight. I had an email from a gentleman who I worked with six years ago which was lovely - he said he reads the paper each week. My friend Ann also told me her mother-in-law always reads the diary. I can’t believe how many people are reading this. I’ve asked dad if when I get the call for the transplant he will do the diary so readers will know exactly what it’s like living through the first weeks of a transplant, and realise how fortunate I am to have had one and how thoughtful the donor’s family has been. I hope it’s my time soon.

Just had a call from Dianne’s husband - she had a transplant last Wednesday, but then she was taken ill and is on a ventilator.

31st August onwards

2008-09-15T04:50:00.000-07:00

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 .

Week Commencing 6th September

2008-09-15T04:47:00.000-07:00

Diary week commencing 6th September

Saturday 6th
Didn’t feel too well but needed to get out and went to meadowhell. I’ve had my hair in a pony tail for 4 days now as I haven’t got the energy to wash it. I bought a few bits from the pound shop (great shampoo for red heads). Mum and I met Sue my friend who helped carry the bags and had a bit of lunch and then went home. It was my Niece Jade 21st birthday party and I agreed they could all come to my house. It’s nothing for me to do the family organise everything (johns side) but its tiring for me. They all had a good time and I was good to see everyone. They all keep up to date on the Star blog site as they live all over.

Sunday 7th
I opened my eyes at 8.00 and thought oh my god whats wrong with me. I tossed and turned and took pain killers and diazepam which made me doze until 10.00 then Janet came in with h a cup of tea which I said ill drink in the room as I needed all my medication. I managed it do a degree and then went straight back o bed. I wretched all day ( not sick ) I had a migraine, I couldn’t breathe properly ( for me ) I was ho then cold. I sipped water. I didn’t know what o do. I didn’t want to exist at this moment in time. This carried on till 6.am the next morning. I couldn’t lie down I was jus retching. I didn’t have an upset stomach. But I did find out that the oxygen machine was playing up so they can out to fix it after mum came at 9.00 on the morning.

Monday 8th
Mum came at 9.00 and started to sort me out after I had a good cry. She made me a cup of tea, I had a bit of breakfast took all my tablets and then sat on the settee and cuddled mum.
I felt 80% better then the day before and with mums help by the end of the day I felt more or less back to my ‘normal’ self. I ate lunch and dinner and fell to sleep or an hour at 6.00. I have decided I am going to sleep when my body tells me o and stop up when I can. I don’t care anymore if it’s the wrong way around. John has started writing a bit on my web site. Well he did it twice and didn’t do it again!!!!.
Tuesday 9th

I tried a new headache remedy for me it the one that you rub on your forehead and it worked! I was scared I have been taking too many tablets so I tried it and it worked. Let’s see what happens next time.
Feel much better today had my hair dyed (yes you guessed it Bright Red). The brighter the better. You can always recognise me wheelchair, oxygen and red hair! Hello to the people who asked if I was Helen in the paper on Saturday and today. Sorry I couldn’t stop and speak but thank you for all you kind support.
Its 8.00pm and I’m still ok I’m just going to get into bed and read for a while and read the last chapter of the woman who had a heart and lung transplant. Its been very insightful , maybe too insightful.

Wednesday 10th
Woke a few times in the night and used the rub on headache stuff. I worked ok. I still took though some pain killers and hour later for the pain in all my joints . I got up at 8.30 to a cup of tea from john and my usual piles of tablets. I am getting a bit forgetful now so I am going to make a list of all the tablets I take so I can remember them.
Mum and Dad came round Dad fixed the light bulbs in Abby’s room as we are always forgetting and mum took me shopping for a few bits.
Thursday 11th
Slept a little better last night ,however I am sleeping more now and I think his will only just get worse and worse. Mum came early and helped hoover and clean then took me to the shops to get a few bits . By this time it was 3.00 and I was just so tired I had to go back to sleep. I woke again at 7.00 just in time for Emmerdale. Still tired but I thought if I slept anymore I probably wouldn’t sleep tonight. I finished the about the transplant and I am glad I read I but then again scared at the prospect of having problems for the rest of my life ( as I will )

new photos

2008-08-18T10:14:00.000-07:00

My New Web Site

2008-08-17T06:46:00.000-07:00

Check out my new WebSite

7th August- The past few days

2008-08-07T12:02:00.000-07:00

Helen Miller Diary
Saturday
The past few days have been a bit of a blur .I’ve had the most awful bout of a stomach virus( compilabacta ) . The doctor came Friday morning (from what I can remember) took a sample and gave me some anti biotics immediately to see if it would help. I took a box of Imodium over the course of the virus and it didn’t touch me. When you find it difficult breathing, walking and manoeuvring try and deal with rushing to the toilet as well. God it’s bloody awful. I’m afraid all my dignity went this week mum had to help me with everything!
I think today is a move in the right direction as I did ask for scrambled egg at about 5 which I ate, regretted after but it did taste nice.
Sunday
Woke up twice in the night with cramps and feeling sick, the oxygen had fell off my nose and was wrapped around my neck, I get in a state when this happens as I get all flustered. I unravelled the tube and made it to the toilet. Image if you can walking everywhere with a garden hose attached to your nose (obviously smaller though) everywhere you go you have to make sure that you don’t get the tube stuck under doors, you try not to get kinks in the tube but everyday there are umpteen kinks in the tubes which the fairies must have knotted together in the night. You are permanently attached to a machine and can’t go anywhere without thinking of the logistics of will the tube make it to the settee at the opposite end of the room.
I have tried to eat again today but can’t manage it yet the stomach cramps are quite bad.
Abi has been to see me today as I kept telling her that txt messages don’t really amount to actually physically seeing me. John told them both to call me and the response was ‘we keep texting mum ‘– that’s kids for you.
I’m glad that I’ve been at mums with the latest bout of illness as I couldn’t have managed this at home ,I admit I have been too ill for John and the kids to look after me, I did need 24/7 help.
Monday
I woke up twice in the night, things on my mind, why do they escalate when you are trying to sleep. After finally dropping off I slept until 11. I was woken by dads ever so quite footsteps round the house – why do they sound so loud (now that’s a question). Had copious amounts of tea and played on the new game we’ve got a ds lite. I have the brain age of 68! That’s good!
Washed and dressed first time since Thursday so that’s an improvement. I still feel queasy but I have settled down and can now eat which is a great relief to all as I can not afford to loose and weight. I have read some e mails from my friends on the list all wondering if I’ve gone in as they haven’t heard from me but alas no I’m here I’ve told them all. I’m going to the run on Saturday night and the transplant bus on Saturday in Sheffield if I feel ok so that will be nice to see everyone.
I feel more relaxed than I have done in months. I finally think my tablets have kicked in, my breathing has stabilised and I am able to concentrate more. I’m also able to apologise to everyone whom I shouted and screamed at over the past few months. I made a few peoples lives unbearable and this I apologise for. I believe I had a breakdown and I am finally coming out of it. I think I hit rock bottom and there wasn’t anywhere else I could have gone apart from the unthinkable which although I think of sometimes I wouldn’t do!
I am starting to look forward with hope. That’s the only thing I have left. What have you got if not that.
5.00 the GP has just phoned and told me that I have Compila bacta!!! It’s a good job that they gave me tablets on Friday as it could led to major problems. They usually wait for samples to come back before prescribing those tablets but due to my situation they didn’t want to leave anything to chance ( Thank God they didn’t )

Tuesday
As usual for me on Tuesdays Janet cleans and I talk to her . She had already taken the ironing the night before so we can spend more time chatting then. We put the world to rights. I had ordered the shopping to be delivered for between 12 and 2 so Jan could put it away for me. When 2 approached I said there really late today I hope the orders oks. I looked on my order on the internet and realised that I had booked it for Wednesday I could have sworn I had done it for Tuesday. She cooked tea for me whilst I sat on the kitchen floor trying to clean the floor and the cupboard doors. I tried to sleep at night but i couldn’t settle and my breathing was quite tight so I ended sitting up in bed watching a film till 1.00am and then reading .
Wednesday
Didn’t sleep well last night again but got up early (9.00 ) and thought that if I stopped up all day I might sleep at night. Shopping was delivered !
I made tea with Johns help and I enjoyed it.
I talked to ( well mailed ) my transplant friends. One of whom is a gentleman who saw me on look north and contacted me saying he had his lungs 16 years ago. He has now mailed me on many occasions telling me of his operation his ups and downs. I have loved this mails and long may they continue.
Thursday
The local paper have been again to do a follow up article on me . I told them about the second false alarm and the web site I am writing www.helen-miller.co.uk.
Went to Worksop for a couple of hours but my breathing was quite shallow so I didn’t want to stop long.
Stomach still really iffy but coping .
Sue came round in the evening for a chat and watch tv. Pretty normal uneventful day really. Had another nose bleed. They are progressively getting worse at the moment. The oxygen dries and burns my nose hence nose bleeds.
Friday

Not To Well at the moment

2008-08-03T10:01:00.000-07:00

Saturday

I woke up quite early, for me, about 9a.m. Abi decided she wanted to take me out, well the cheque book really! Went to Doncaster, sun shining, had a great time browsing through all the sales, came back with lots of goodies, collapsed in a heap when I got home and went to bed quite early.

Sunday

A day of rest as usual. Too hot for a Sunday dinner and had huge salads instead. The warm weather has affected my breathing a little, but the warm air does actually relax my muscles and cheers me up when I have a day in the sunshine so I feel better.

Monday

Monday was my second favourite day this week. Mum came round and helped me tidy and organise my clothes in the bedroom (it really needed it!). I can’t tidy up on my own or clean anything and get so exasperated with looking at the dust on the shelves and the TV, so Mum sorts my room out for me. After Mum left, I had a day on the computer and didn’t come off until 9p.m. that night. I have talked to people from all over the country that have either had their transplants or are waiting for them and have finally started to create my own website. The website is called www.helen-miller.co.uk. On this website I am trying to create a resource for people in the same situation as me – living with this dreadful condition. There will be video clips and links to other important websites. I have also created two pages where my daughter and niece are going to talk about their experiences. I am really enjoying doing this as it has got me all excited again. I will let you know when it is up and running. Oops, I forgot to tell you the transplant coordinator phoned me this morning to ask how I was. They only did one transplant last month.

Tuesday

This was the best day of the week. I went to Clumber Park with seven of my family and my dog Amber. We had a great time with a picnic and I hired a free mobility scooter which allowed me to go right around the park. My mum had to rush to keep up with me as I thought I was at Brands Hatch in a race! The last time I went right around the lake, I was on my own feet. I watch the kids and my Dad play cricket. Dad thought he was playing for England so we all had a good laugh. We got home about 6pm and had a pizza as John was late home for work and I can’t cook any more. I had an early night.

Wednesday

I have gone from sleeping through the night to waking up again. I just can’t seem to get my sleeping pattern right. My mum and I took my niece, Beth, out for the day to Meadowhall and had rummage through the last bits of the sales. Beth was great at picking things out for me. On the way home, we popped into ASDA and a lady stopped me and asked if I was Helen as she recognised me from the paper, where she reads my diary each week. She also had a lung problem and likes to read about how someone else copes. I do like it when people talk to me, so if you see me do come and say hello. I am more than willing to answer questions about transplants as far as I know, or my condition. I went home to mum’s house after that, feeling good still and had chicken salad with new potatoes, but I couldn’t eat it all as it just wouldn’t digest properly. I went to bed early as I didn’t feel very well.

Thursday

Oh dear – not well at all today. It is so unpredictable, one day so good, then the next I have hardly been out of bed. By 12 noon, I have taken 3 Immodium and have buckets at the side of the bed. I think it is down to all the tablets I take. It seems to be all one way or the other with little notice. My mum and dad had planned to go to my brothers in Newcastle for my niece’s 3rd birthday, but due to this problem, mum has had to stop at home to look after me, which I feel dreadful about. I am going to try to get up a bit this evening so I will have a better chance of sleeping tonight.

Friday

Helen is not well at all. She has done little yesterday or today other than sleep and go to the bathroom and seems very weak. I called the doctor this morning as we can’t be too careful. He was really helpful and reassured me that I was doing the right things to help Helen, but said to ring again if there was any change. Let’s hope she starts coming round from this soon. (message from Helen’s mum).

Facebook | Your Mini-Feed

2008-07-29T09:32:00.000-07:00

Facebook | Your Mini-Feed

look north

2008-07-25T05:07:00.000-07:00

Have a look

17th July

2008-07-17T15:54:00.000-07:00

Thursday
1am still wake watching Total Recall on TV, 2 am still watching 2.30 now praying and crying to sleep. Finally dropped off and woke at 7. I then drank a large cup of tea and dropped of again. Woke a few times when phone went, mum popped in, kids popped in. 6pm finally woke and got out of bed. Bad headache all day but I think this is just because of sleep deprivation and lack of fluids.
Read my e mails and both women Diane and Louise who are both awaiting transplants have agreed to help publisise our plight and get people to sign. This means we are the 3 musketeers fighting for an end to this miserable situation thousands of people find themselves in each year. I’ve got meetings and interviews with a few different companies in the media trying and help us. 23.45 pm watching TV again and reading my OU prospectus. I have been so utterly depressed and upset lately that I really need cheering up and with the degree and the transplant media coverage I can become upbeat and positive again. So if anyone would like to help us in our plight please gets in touch.

2008-07-17T15:53:00.000-07:00

Tuesday 15th and Wednesday 16th July 2008

2008-07-16T12:42:00.000-07:00

Tuesday
I was still wide awake this morning at 3.15. I can’t sleep. I have never experiences sleep deprivation like this before. I think I finally drifted to sleep at 4.00 only to sleep fitfully and wake up at 8.00. I got up.
I sat in the living room and a thought just clicked in my head. All the symptoms I have been having over the past 2 weeks must be down to the fact that I’ve changed my anti depressants. Dry mouth, Insomnia, being Manic (ask John, I even threw a drink as him and said I was leaving. I thought I was going mad. I’ve phoned the doctors and they are giving me a phone consultation tomorrow.

Wednesday
3.40 am and I’m still wide awake. I’ve just watched a film ‘Son of Sam’!!!!!! This hasn’t helped me drift off to sleep.
7.30 am I’m up now to find the kids in bad moods (They are not morning people)
Johns at His Aunt Edna’s Funeral today, Mum and Dad are still unwell and I’ve just had another panic attack. Its only 10.46 now.
Doctor phoned they are putting me on different anti depressants. I feel as if my world is closing in around me, whether it’s the situation I’m in or the medication but it feels like I am having a breakdown. I’m crying, arguing, feeling aggressive, hating, everything all rolled into one. I feel extremely vulnerable at the moment. I just don’t know which way to turn as no matter what anyone says they are all in the wrong ( as far as I’m concerned ) I feel that everyone is lying ( as far as I’m concerned ) . Mum , Dad and John I know are all trying to help me in their own way but as I’m sitting here I’m absolutely sobbing.
20.53 Had 3 panic attacks today due to an immense amount of external and un-necessary behaviour from certain people ( not family- I hasten to add ) . I have just taken 2 painkillers as my body is acheing all over ( connective tissue dissorder ) it hasn't eased yet. Im dreading getting un-dressed and getting into bed as i desperatley need sleep. The thought of being awake all night is not a nice thought to have at the moment.

Photos of me and some of this weeks Diary extracts.

2008-07-14T10:35:00.000-07:00

Abi and myself when she was one year old
Me
Some of the Miller Clan at Ann's Wedding
My beautiful daughter Abi ( short haired beauty)
Photo of my beautiful Niece on holiday 2 years old
Precious Memories

The Photos

Diary 12th July onwards
Sat
Saturday emerged out of bed at 10.45 after a really bad night sleep. My breathing is really bad in the night now. I went to bed late Friday night but this didn’t help either.
Got dressed at 1.00 and then Sue took me out for an hour. A colleague I used to work with saw me in a shop and completely blanked me, just something as little as this is making me burst in to tears and sob uncontrollably.
Went back to Mums where me and Sue were stopping for the weekend and had a lovely night watching her son play on the Nintendo Wii , I’d love one of those as it could even help me in my condition but there too expensive at the moment. But still great fun

Sunday

Sue woke me at 9.00 am; I think I’d just dropped into a nice sleep. Mum had phoned and told Sue to take me back home as they were on their way back from a weekend break with my Brother and Niece and Dad had been taken ill with a nasty Stomach bug. I managed to get dressed and out of the house in record time of an hour. I didn’t brush hair or teeth though. I thought I’d do that later.
Returned back home to normality. Family arguments, “There’s nothing to eat” chant coming from the kids. House looking like it’s never been tidy and clean in months. Reality check.

Monday

Woke early and phoned mum – she is now ill so it must be one of those nasty bugs the have picked up- glad I wasn’t there to meet them. Wheelchair services have been to measure me for a soft cushion as I’m really getting sore sitting in the wheelchair. I ordered food shopping as I can’t go anymore in a wheelchair. Has no one ever thought that disabled people may want to shop for a week’s family food???? Have you seen the size of Wheelchair trolleys!!!!!
Had one of the most blazing rows with John and Daniel. The longevity now of waiting for transplant has taken its toll on the family and we are all at breaking point. No one can see each other’s point of view. No one can do anything to help the situation. There really is no one to talk to for both The family and me. I am lucky that I have built friendships with Diane and Louise who are both in the same position.

I am going to start a little business well hobby actually. As you may or may not be aware I am quite good on the Computer, Internet, and I have done in the past Memory DVD's for birthdays, Weddings, Deaths, anything really . I ask for loads of photos and favorite music and I design a DVD for the special occasions. I starting doing it when i found out I might Die. So im going to do that for a bit to keep my mind active even if it's just for me and no one else wants one .

Friday 4th June 2008

2008-07-04T12:51:00.000-07:00

Friday 4th June 2008
At 1.30 this morning the phone rang. John answered and I couldn’t hear what he was saying. After a few minutes he came downstairs turned the lights on and came in. I had had the transplant call. I phone mum and just said' I’ve had the call'. Within 10 minutes mum and dad were here. 5 minutes later Newcastle phoned again and said there was a donor but at this stage they couldn’t be sure if I was compatible but they had to get me up to Newcastle in case I was.There are many tests they have to do to ensure you are a match. I think one of the first is to see if you are the same size and blood group then its gets down to the nity grity. At 1.50 the Ambulance arrived and Mum and I got in, I must admit that one of the crew wasnt one of the happiest people ive ever met. I told Dad and John not to follow as if it’s a false alarm it was a waste of time everyone going up and I hate the thought of them driving up under immense stress.
At 4.22 we arrived at the hospital and just as we pulled outside the emergency doors the transplant team called and said 'Sorry I wasn’t compatible and I could go home'.(I cant not describe the feeling that i experienced one one hand you think youve lost the chance at living , then you think that at least your going to live another night (( thinking that the transplant could go wrong )) and then you immediatley feel utter depression ).
I looked at Mum and the Ambulance crew shook my head and just said lets go home. Let’s hope if I get another call there will be a more positive outcome.
I don’t know if the lungs were suitable for anyone else they don’t tell you that.
We arrived back home at 7.00 this morning. I haven’t been able to speak to anyone yet its 20.43 and I’m just numb. I’ve tried to sleep today as I haven’t been to sleep in about 30 hours but I can’t.
I have smiled though today i watched Emmerdale tonight and saw the part where i watched the filming.
Thanks for all your support.

1st July - The past few days

2008-07-01T13:47:00.000-07:00

Saturday
Went to meadowhall today. Tried to eat a rack of ribs but for me it was like fighting a tiger and I couldn’t manage eating them. The exertion of lifting them and trying to tug the meat from them tired me very quickly.
I should have stuck to my usual sloppy food.

Sunday
Had a bad night’s sleep and therefore felt groggy most of the morning. I ate dinner and then went back to bed until 6.00 that evening. All my life seems to be at the moment is sleep, get up, watch TV, get dressed and washed ( on a good day ) back to watch TV , eat if I’m given any food . If no one is here I can’t be bothered to get anything to eat as I get too exhausted, cant breath and sometimes have panic attacks, so it’s easier not to eat or have a biscuit which may have been left in the room for me.
After evening dinner I then settle in my make shift bedroom and read or watch TV. This is my life at the moment. No wonder I’m bloody depressed but I haven’t the energy to do anything else.
Oh! I also forgot my sister in laws birthday party I slept through it and no one wanted to wake me to remind me, sorry Tracy.

Monday
Had a small panic attack today and Abi called mum to come round and help me. So she stopped the rest of the day and we went for a short walk in the village. I am still finding it difficult sleeping. I spoke to Dianne who is waiting for a transplant today. They called her for the 10th time a couple of weeks ago but unfortunately for her and fortunately for the other recipient the lungs went to a different woman.
We had a long chat about how we are coping. I think we are both now on anti depressants to try and stabilise our emotions and anxiety levels

Tuesday
Had to get the doctor out today. I have been having severe panic attacks and feeling very anxious over the past 4 days. I have cried, not slept and I’ve started having more health problems other than the lungs which is unbearable at the moment.
Ive just gone on my Blog site and one of the ladies lynn waiting for a transplant has been given the gift of a new life back on the 21st May and shes just been in touch. I am thrilled for her and her family and am grateful to the family who gave her this gift.

26th June 2008

2008-07-01T13:43:00.000-07:00

Saturday
Felt extremely tired again and stopped in bed all day. As you know I usually go out on Saturdays but just couldn’t manage it today. I did make a point of saying to the kids though that I wasn’t ill just tired (I didn’t want them panicking again.

Sunday

I’m up dressed and bathed. Watched a little TV at night (well until midnight actually) I think I slept too much yesterday. Yes you guessed it couldn’t sleep Sunday night. Abi cuddled up to me and we watched Practical Magic together. Good mother and daughter bonding.

Monday
Up dressed washed and make up on today. Went to Worksop for an hour which gave me some fresh air. Tried to make fajitas for tea but stumbled at the last hurdle and john had to finish them off. Abi been to hospital today and they told her she is gluten intolerant.

Tuesday

Janet cleaned. I wanted to go upstairs to go through my wardrobe but chickened out. I helped John design some posters and fliers for his Fencing and Landscape gardening business they came out really well.

Wednesday
Feel good again today (3 days in a row) Nurse visited to make sure I’m ok and if I have any needs or requirements. They are still trying to find a cushion pad for my wheelchair. As I have lost so much fat off my bum it’s starting to hurt sitting in the chair for any great length of time.

Thursday

Went to visit Professor at hospital for 6 weekly check up. Everything is the same and I managed to do one of the breathing tests (first one in about 3 months I’ve been able to manage) so things must me picking up a bit)
Friday

Visiting the dietician again today to talk about my weight. I am managing to sustain my weight at 8stone so they think I will be ok. I can’t lose any more though.
As I hope you can see from this week’s diary I feel a little better this week. Mum and Dad said I sounded morbid last week but if I’m going to tell you all the truth about waiting for new lungs I hope you appreciate that I now have more downs than ups, it’s just the way it is.

My Diary 20th June 2008 - the past week.

2008-06-20T07:19:00.000-07:00

My Diary 20th June 2008
Saturday
Went out to Meadowhall for my weekly outing. I wore my oxygen all the time I had the usual stares but I don’t care anymore. I can’t manage without it.
Sunday
Quite day today reading,surfing the internet on the computer and watching TV. Shouted and cried at everyone today. I feel so bad doing this but everything is getting on top of me. John and the kids are finding it all extremely difficult to cope with and my heart goes out to them ,mum and dad put a brave face on things but I know they are suffering as well.

Monday
I’ve been on the list a year and preparing for it for a further 2. I am now thinking have I made the right decision. The waiting is torture; if I don’t get one how many regrets will everyone have. Should I be doing more now to make happy memories? I probably don’t believe I’m dying so I don’t think I need to make memories I’m so confused.

Tuesday
District nurse came to take my bloods today to check antibodies ready for Newcastle. Janet cleaned and mum shopped and ironed for me as usual. Ann my sister in law came to show me her wedding photos, she’s beautiful on them. The anti –depressants aren’t working yet and I’m still crying and feeling depressed. I am at the stage where I feel that I have lost control of my life and there is nothing I can do.

Wednesday
Kathy and Mark friends from years ago have been in touch via the star web site. It’s fantastic I’m so pleased to hear from them.
I’ve not been able to sleep for 5 days now, due to shallow breathing. Sue came round to spend the evening with me painting my nails watching big brother.

Thursday
Woke after a fitful night’s sleep. Abi not feeling well and my mum had to take her to the doctors. I feel worthless as I can’t take my own daughter to the doctors and be there for her.

Friday

Sue brought me a champagne and strawberry picnic round to eat in the back garden as I wasn’t well enough to leave the house. It was a lovely surprise.

The past week

2008-06-08T03:27:00.000-07:00

Sunday
Stopped in and watch TV all day. Dad came round and had bought me a present – Perfume. It’s fabulous. I absolutely adore perfume and make up even though I don’t wear my make up very often now , it has just become another part of my life which has been taken away by this hideous disease . I can’t do the nice things anymore without being put under tremendous stress and fatigue.
John made me laugh he tried to get in the single bed with me and go to sleep ( I hate being on my own downsairs )
After about 4 minutes I just cracked up , I couldn’t move we not young kids any more single beds aren’t designed for 2. He keeps me smiling .

Monday
Had a really awful day today. I’ve been in immense pain and really depressed. I can’t tell you why as nothing has changed but I just couldn’t stop crying. No matter what anyone said I just burst into tears.
I realised today that I don’t sing any more. I was forever singing to the radio, TV; I can remember the last time I did that. Now that’s got me up set.

Tuesday
Janet helped clean today, Mum is helping prepare all our meals now to give john some help and respite. A dear friend called Paul came round to see me and kept me laughing.
Daniel and Abbie have been great over the past weeks so kind and thoughtful . They are going through so much yet they are keeping it together and doing well and school and work. I am so proud of them.

Wednesday

Went for an outing to crystal Peaks today. The weather was warm, sun shining and I thoroughly enjoyed being out in the fresh air.
My main aim was to get my hair washed and blow dried at the hairdressers but alas they couldn’t fit me in. I always come on the off chance of getting an appointment as some days I don’t feel well enough to go out.
Handed in the final 2 assignments foe my cert Ed.

Thursday
Washed my own hair today after laying in bed for a while.
Received e mail from my tutor that he’s marked first assignment and I’ve passed. Fantastic.
Mum took me out for a little while in the wheelchair just to get some fresh air.

Friday
At hospital today having tests to make sure that my bones haven’t crumbled any more due to my medication ive taken over the past years. they have just told me that i am lacking in vitamin D so ive just taken a large dose.

Emmerdale 1

2008-05-30T10:47:00.000-07:00

Emmerdale

2008-05-30T10:45:00.000-07:00

Helen not looking to bad-oxygen hidden

2008-05-30T10:42:00.000-07:00

Georgia and myself

2008-05-30T10:40:00.000-07:00

Visited Emmerdale this week

2008-05-29T10:49:00.000-07:00

Saturday
Stopped in bed all day just due to tiredness. I watched both the Eurovision and the Oliver programme on BBC 1. I had to turn off though when the results came though due to shear exasperation at the scoring.

Sunday
Diane contacted me today (the lady waiting for a transplant) she has chest infection. This is the worst news you could ever hear. Chest infections for us are life threatening.
I started writing another blog to go with the brief one on the Star web site. www.helen-miller.blogspot.com is a site i have created to give more information about me and the condition. I have also been very lucky and have a couple of other women who are in the same position as me having put their blog link on mine.

Monday
A young girl called Louise has contacted me who is 27 and in the final stages the same as me. I have started to forge e mail relationships with a few people via this Diary and it is helping me tremendously. Alison often e mails me and tells me her stories.
I’ve been on my own most of the day but I’ve had the phone in my lap all day in case I needed someone or something.
I don’t like being on my own anymore as I do suffer from panic attacks quite frequently now.

Tuesday
Daniel and I watched TV most of the day in-between playing on the X box and me tapping away desperately trying to finish off the loose ends on my assignments.
Started to think what Job am I going to do when I’ve had the transplant. Id love to do motivational speaking. I’m quite an extrovert and feel that I could really put messages across to people that would make a difference especially in the Transplant field.

Wednesday

First day out in a while. I made myself get up and go out for a couple of hours. Mum took me to the hairdressers to have a wash as I wanted to look my best for Thursday. I ate a good meal at Sainsbury’s which lasted me all day.
I was sleeping on the settee and the doorbell rang in the afternoon. The local district nurses are introducing themselves to me. This is just the next phase I think. They need to know my circumstances in case i need to call on them in emergencies.

Thursday

Well today’s been fantastic. Through contacts after my filming debut and being cheeky I had the pleasure of being Georgia Slowe (Perdy) guest at Emmerdale for the day. Laden down with 5 oxygen cylinders and painkillers I went to Leeds to the studios and then to the outdoor set to watch some filming. I met most of the cast who were fantastic and very chatty. I took some photos of the set both inside and out. Georgia was fantastic and had planned the day for me to see as much as possible. She had used her day off to show me around . What a kind gesture, I can’t thank her enough for this. I will treasure this memory for ever.

Friday
Due to yesterdays excitement i am now shattered and laying on the settee. I don’t think i am going to move today. This is the problem, I do one thing and it takes me a few days to get over it. I don’t want to alarm my self but I have started coughing !

The Star Donor Run

2008-05-23T09:09:00.000-07:00

The Star Donor Run 3k Fun Run
In conjunction with Transplant Sport UK, the Star and Westfield Health.
A flat, fast course around the Don Valley Stadium, Sheffield.
Open to runners of all ages. All finishers receive a goody bag.
In 2007, there were 23 kind organ donors who saved the lives of 74 people in the Sheffield region, unfortunately 16 people died waiting for transplants.
Transplant Sport UK not only raises awareness of organ donation but also supports athletes from 2-80+, who have had a life saving transplant, to attend the British Transplant Games.

Takes place on: 09 August 2008

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Entries close: 01 August 2008
Price: £5.00
Product subject to handling fee: £1.00

I dont want to get up

2008-05-23T08:14:00.000-07:00

Saturday
Went to (yes you’ve guessed it) Meadowhall again. Just had a leisurely stroll round and a bite to eat.
Sunday

Got up at 11.30 after a fitful night. Saw my brother and family in the afternoon for a little while but had to come home and get back into bed as I felt so tired. I couldn’t get to my sister in laws birthday later in the day.
I’ve tried the machine that helps me breath, I am finding it extremely hard to adjust to, and it’s making me feel very queasy. It’s a very strange sensation. The doctors tried o explain the machine to me, it would breathe for me if I didn’t breathe!

Monday
I didn’t get up at all today I just slept, I felt very week and tired and I had stomach cramps. Mum stopped all day in the room just in case I took a turn for the worse. John and the kids kept coming in to see if I was still breathing. This is how bad the situation is now my Children scared that they will find me dead in my bed. What can I say to them that will help them? I am at al loss.

Tuesday
Woke up feeling a little better. Spoke to Dianne, a lady that is also waiting for a lung transplant in Newcastle. The waiting is torture. She has now been called 9 times (twice at the weekend). I don’t know what’s worse, not having a call or being called so many times and having to come back home again. I hope to keep in touch with her over the coming months. I told her that she doesn’t have t say she’s alright to me she can tell me exactly how she feels because I probably feel or have felt the same at some point.
Wednesday
Watched a little TV today and generally feeling sorry for myself. I can’t seem to shake this negative feeling I am having. I ate a little for Dinner and tea and then immediately had indigestion. I think this is common with people with lung disease. We all seem to take the same medication when you talk to each other.
Friends came around in the evening and watched a complete series of house on DVD . It was a nice change to sitting by myself watching TV in my room alone. Yet again more football on the TV!!!
Thursday

Felt weak again today and stopped in my room, Watched a little TV and did a little of my assignment but just didn’t feel up to it.

Friday
I have been in bed all day , I haven’t got the energy to get up.

They cant find a match ! 20/05/08

2008-05-23T08:12:00.000-07:00

My antibodies are making it hard to find a match
SATURDAY
IT was my sister-in-law's wedding reception and I went along for a couple of hours. I didn't want everyone staring at me and asking questions but people were kind and left me alone. I had a lovely time.
SUNDAY
MY day of complete rest. Quiet and peaceful.
MONDAY
JOHN'S friend Dan came round to have a chat with me. He is a lovely boy and made me laugh.
TUESDAY
JANET came again today to clean and Sue came round and changed my room around to make it look prettier. I now have a little clothes rail in my room. I'm quite self sufficient in there now. The best thing is I'm in charge of my own television remote!
WEDNESDAY
PHYSIO today. They have discharged me as there is really nothing they can do for me. I have two large elastic bands to work with daily.
THURSDAY
TODAY I went to hospital to see the consultant. I was there for three hours having different tests. Due to my collapse a few weeks ago I have to undergo various heart and breathing tests. I have to come back tomorrow after wearing an oximeter all night which checks my oxygen and pulse levels while I sleep.
FRIDAY
AN early appointment again. I literally just got out of bed, got dressed and was wheeled to the car. No make-up, no wash, no time to brush my hair.
I've been fitted with what looks like a portable ECG heart monitor. I have to wear it for the next week – if I have a funny turn again it records my heart to see if I have an irregular beat.
I have also been given a "non-invasive ventilator". I look like a fighter pilot with a bit mask on. It pushes air into me which is supposed to open my chest and let more oxygen in.
Doctors told me they are finding it difficult to get me a donor match due to my antibodies.

12th May Diary

2008-05-12T01:43:00.000-07:00

Saturday
I stopped in today felt a little weak and watched TV in bed for most of the day.

Sunday

A very quite day today. I sat on the computer and tried to concentrate on my college assignments.
I have started to get quite depressed lately it may be the tablets I’m on aren’t working anymore or it could be that I’ve really started to think about what if it doesn’t happen!

Monday
Had a wonderful day at Clumber Park. Mum took a picnic and we just had a leisurely stroll (or push) around the house and church and sat and watched the cricket. This weather is suited to me. People usually think the warm weather won’t be conducive to me but in fact it helps. It cheers me up and helps me relax. I asked a doctor once about this and he said it was probably the muscles relaxing. The smell of suntan cream and the blue-sky reminded me so much of holidays. The first thing I do if I get the transplant is go away. I am stuck at the moment I can’t book a holiday!!!

Tuesday
Mum came and stopped with me today we watched a bit of TV and then she helped with the ironing. She’s trying to help john by alleviating some of the pressure on him. My friends Sue and Jo came round to see me for a little while. It was good to see them yet upsetting as I start to think what I am missing at work and get so exasperated and depressed.

Wednesday
Mum and Janet helped clean the house today. We had such a laugh.

Thursday
The weather is fantastic so mum has persuaded me to get dressed and go out for a walk around the block. I tend to stop in and don’t want to venture out but thank goodness she bullied me into it as soon as I went out I felt better. Seen as I was out we decided to go to Rother Valley. We sat ate ice cream and walked a little round the lake. It felt good to be outside.

Friday
Need my hair washing so went to local hairdressers for a good wash and blow dry I can wash my hair anymore as it’s too exhausting. They waxed my eye brows as well. I feel totally different now quite good actually, simple things make me so happy.

Sunday 27th April 2008

2008-04-27T09:20:00.000-07:00

Last night I thought i was seconds from Dying . It started about 5 when i couldn't get my breath . I was taking very short and shallow breaths. Think how little and soft a baby breathes well that it how quite and shallow i was breathing. I managed to walk to the dining room about 10 yd and still i felt peculiar ( more than usual )
Daniel ( son ) helped me upstairs when all of a sudden i couldn't get my breath. My body started to burn and felt like some sort of prickly heat. I was trying to regulate my breathing by trying desperately to do the exercises that i have been shown in the event of a panic attack. But nothing was working. After about 2 or 3 minutes ( felt like 30 )i managed to lift my foot and stamp twice on the floor with what little energy i had and luckily John heard and sent Dan up to see i I was OK. All i could mutter to Dan was Ambulance and spray. He screamed for John who immediately called my mum first then the ambulance ) by this stage think all the colour had drained from me and i thought my body was packing up. All i thought was I didn't want to die like this , i wanted to die in my sleep not to be utterly petrified and scared and alone.
I kept thinking if everything would just go dark or i would feel a warm glow or something but no , all i felt was utter panic and desperation .Within minutes ( i think ) mum and dad appeared and took over. Leaning over a chair and mum constantly rubbing back for about 40 minutes and with the appearance of the paramedics everything calmed down after about 1 hour. My oxygen levels were fine but my pulse rate was 140+ and this was afterwards ( i dread to think what it was like at the peek of it )
I gradually came round and at about 11 i was helped into bed and given wet cloths to wipe my face.
Everyone left me alone ( at my request ) but i just couldn't get to sleep. I was scared it was going to happen again, my breathing was still shallow and the constant use of the Ventolin spray didn't seem to be doing much. I must have drifted in and out of a sleep like state and woke at 7 to hear john down stairs cleaning ( obviously not slept either ) . I drifted back to sleep and woke again at 11. Feeling absolutely petrified i decided that i would try to get downstairs and into the living room ,knowing that that was the last time i would be allowed and able to go up stairs until if and when I have the transplant.
Today's been a funny sort of day. Lat night I was adamant that I wanted to go to my mums and stop and today i vehemently want to stop here. The dining room has been made in to a make shift bedroom but i hate it. I have cried on and off all day at the thought that last night could have been my last.
I don't know what happened last night, whether it was my lungs, heart, panic, seizure but i live to see another day.

17April update

2008-04-17T11:23:00.000-07:00

Friday
Family visited me as I sat on the settee all day on my laptop. I have started to write a blog and promote the UK transplant organisation on face book. If people reading this have web sites they can have a link from the UK transplant.org site directly linked to theirs and if people have shops they can ask for FREE promotional goods to display to promote the transplant list. Please do this if you can .

Saturday
yes went again to meadowhall ( regular Saturday occurance ) with my brother and his daughter, I went round in my chair with the oxygen on – this is the first time I have worn my oxygen around meadowhall. I don’t care anymore if people stare. Chloe sat on my knee all the way around . I felt so blessed that I could spend this time with her. If you haven’t got your family who have you got?

Sunday
Stopped in bed all day, read books and watched TV felt very weak. Very miserable day for me today. Enough said.

Monday
I’m so inquisitive that’s my trouble sometimes. I have just read an article about a woman that was on the transplant list for 2 years had 4 false alarms for transplants and then was taken off the list as she became too ill. She is now waiting to die. I must stop reading all these postings on the internet. Another totally miserable day for me , I am still fighting this infection.

Tuesday
I went online to read my diary in the star and crumbled into tears after reading of the sad passing of Michael who was waiting for a lung transplant. I know how they must have been feeling waiting for the transplant but can’t imagine what his fiancé and family are feeling now. It’s tragic. This has really upset me and my family and friends.
John Phoning me all day to make sure I’m ok. Friends and family also have been to visit just to keep my spirits up.
Hospital nurses phoned me to see if I was ok as they had also read the article.

Wednesday
Busy day today. The Worksop guardian newspaper has been to do an interview so they too hopefully can publicise the UK transplant register.
My friend visited me today and stopped for an hour whilst the interview took place. My friends at first2train and DPP have sent me a beautiful bouquet of flowers today to cheer me up as I have been a little upset and depressed. This always cheers me up.

Thursday
Felt much better today, bathed washed hair, dressed and i even made tea –tuna pasta bake. It would probably take you 10minutes it took me 1.5 hours. I did feel id achieved something. I started to write my university assignments. I have to have them all finished for 10th may. I have got to get my brain back into gear. I feel that my infection has nearly gone and I have started to feel much better now.

10th April

2008-04-10T07:45:00.000-07:00

Friday
Im in hospital and all my independence has disapeared i cant even go to the toilet on my own as in hospital you cant walk around with oxygen tubes ( health and safety ) so i am reliant on nurses to take me to toilet. I hate this. Elderly lady in the bed opposite extremely ill but still managed to have her beautiful red false nails on ( one missing so they can still take her oxygen levels )

Saturday
I need to get home . I am tired as i am not getting any sleep, they keep the lights on all night wake me up to give me a nebuliser and a few disturbences in the night with a couple of patients has made me feel very vunerable and scared. Register doctor has agreed i can go home if i REALLY want to but just to be careful. I got home and fell asleep i can really relax now.

Sunday

Stopped in bed till dinner time and then went in the living room for the rest of the day. Chest still very tight but better than earlier in the week. Friends came to visit me but everytime i talked i started coughing and the strain is hurting my stomach muscles.

Monday
Stopped on the settee all day ,didnt get dressed as i hadnt the energy to put clothes on and i needed to feel comfortable. Today is the first day i have addmitted to myself that im starting to dread waking up in the morning and feeling the way i do. I have really had enough now , i cant do anything and anything i do try and do is such an effort and i just end up crying. Writing this down in the diary is a release in a way and i can put down in writing what i dont want to say out loud.

Tuesday

Friend came round and tidyed up for me and kept me entertained . Abi has been laid off work and is desperately looking for another job. I need to motivate my self i have 2 assignments to complete by the end of May for my Cert ed qualification and i cant fall at the last hurdle.

Wednesday

My brother arrived from newcastle with his beautiful daughter this has cheered me up tremendously . The nurse from the hospital has phoned and told me to keep my chin up . The saying is for a translplant is you need to be well enough for the transplant but poorly enough to need it. I have reached the point when im practically begging now .

Thursday
My friend is hopefully coming today wth her new baby who i havent seen yet. Im scared that i wonthave the energy to hold him as i am very week now and my muscles have deteriorated. The physio has phoned and they are going to visit me to see if they can help in any way .

GIFT OF LIFE: 'I'm at a low point when I can't get my breath'

2008-04-10T07:44:00.000-07:00

FRIDAYWe're going to Centre Parcs in North Nottinghamshire, it's only half-an-hour away but it's like a major expedition. I need canisters of oxygen and the canisters are all the size of a bedside cabinet, a carrier bag of tablets, electric wheelchair, manual wheelchair, two lots of portable oxygen and that was just for starters!We got there and the accommodation is very nice. All the rooms have ensuite bathrooms and I can walk to the toilet.SATURDAYWoke up at 9am which is early for me and went out in my electric wheelchair and around the park.It's the first time in weeks I've been fully independent.We went to the swimming area but I didn't swim. I had curry in the evening and managed a bit (Helen finds eating difficult because of the effort to coordinate her breathing with chewing and swallowing).And I was up until 9pm – well, I am on holiday (Normally Helen is in bed by 7pm as she feels exhausted by then).SUNDAYI woke up at 10am and had a 'walk' in the electric chair. Abbie (Helen's daughter) and a friend drove over from home to visit us for the day. My niece and nephew also came over and they had a good time.MONDAYMy son Daniel didn't want to leave, he said he'd enjoyed it so much. I started to feel really chesty as if there was a rock pressing on my chest. We left and came back home.TUESDAYGot up at 9am. I think I have an infection and went to the GP. I hope I haven't got an infection as I will have to temporarily come off the transplant register, I've been started on oxygen and antibiotics.WEDNESDAYI started to feel worse and the day seems like a blur. I have a suitcase full of tablets collected by dad from the chemist. I can't lie down as I'm coughing too much.THURSDAYWent to the Royal Hallamshire Hospital and saw the consultant who admitted me as soon as he saw me.I am on antibiotics and oxygen. So I'm off the transplant list. I'm at an extremely low point when I cannot get my breath, it feels like I have prickly heat.I hope when you are
reading this I will be out of hospital and I will be glad when this is all over as I'm beginning to feel desperate.

GIFT OF LIFE: Helen's diary

2008-04-10T07:43:00.000-07:00

SaturdayI came into Sheffield with mum, dad and brother for a meal at Ask near Cole Brothers. A member of staff asked if I had a voucher from The Star for their two-for-one offer. Well, once they mentioned The Star, I had to tell them I'm in the paper and why!I also told all the people in the restaurant. They were so nice to me. I felt so relaxed and at ease, there was no-one staring like they usually do as I'm on oxygen. I had pasta and pesto and it was so beautiful that I ate my first proper meal in six months. It took me about an hour but normally I'd only eat about half because it's hard to coordinate eating and breathing. Mum and dad were so pleased.SundayI'm setting myself some new goals. Normally I stay in bed all day on a Sunday because I feel so exhausted and I sleep most of the day. I didn't get out of bed until 11am but I stopped up all day. I was on the settee and watched football with my husband John and son Daniel. I'm not really into football, we watched two matches, but it felt great that I'd achieved my goal.MondayBecause I stayed up all day yesterday and made all that effort, I felt terrible so spent a lot of the day sleeping. But later I helped a friend of John's out with his CV which he sent to three agencies and he had three interviews later in the week. So a good result.TuesdayI'm emailing everyone I know with my diary in The Star and have had some lovely responses. A girl I've not spoken to for 15 years, who I knew when the children were young, says she's now signed up as a donor after reading the diary.WednesdayGot up at noon and visited my friends at work. I am reliant on them, they came to collect me as I need help to get to the car and with the oxygen cylinder. I could have stopped in bed but I know if I do that my brain will disintegrate, I really do need mental stimulation. It's good to get out of the house and talk to friends.ThursdayI got up at 8.30am today - the first time I've been up that early in months. The sun was shining through my window and I wanted to be up. It took two hours to get ready and I didn't do much. But it was a lovely day and better to be up rather than just staying in bed.I had an email from an acquaintance who said he was so moved by the diary he's signed up to the organ donor register and is going to do T
he Star Donor Run. And a friend in Doncaster is emailing the diary to all her friends and work colleagues and they're signing up for the register.FridayWe're getting ready to go to Center Parcs for the weekend. It's only half an hour away but I'm a bit nervous as I'm away from home. I've organised for oxygen to be delivered - luckily I checked yesterday as it had been forgotten - but they say it will be delivered.

GIFT OF LIFE: Plight of patients waiting for new organs

2008-04-10T07:41:00.000-07:00

Around 250 people in South Yorkshire and North Derbyshire are waiting for an organ transplant to transform their lives. To launch a regular feature as part of The Star's Gift of Life campaign, Kate Lahive speaks to one woman on the waiting list.
BRAVE Helen Miller finds every day a struggle as she waits for her chance of a life-saving transplant.The 38-year-old has spent almost a year on the waiting list for a new lung or set of lungs and her health is steadily, getting worse and affecting all aspects of her every day life.The mum-of-two says the day of her operation can't come soon enough because she can't work, is reliant on oxygen for 24 hours a day and struggles to climb the stairs of her South Anston home.Just cleaning her teeth leaves her struggling for breath and she feels too exhausted to even raise her arms to dry her hair or put on her make-up.But Helen, a witty and intelligent woman, refuses to feel sorry for herself and has agreed to contribute a weekly diary about her experience to support The Star's Gift of Life campaign.She said: "I think people are interested in what it's like for people waiting for a transplant, and if it helps to raise public awareness about organ donation I hope it will make a difference."Helen had an auto-immune disease as a teenager and developed emphysema, a serious lung disease five years ago.Gradually her health has become steadily worse as her lungs have deteriorated, until doctors said she needed to join the waiting list for a transplant.Helen was a busy working mum but her illness has had a dramatic impact on her life. Just leaving the house is far from easy and Helen's mum Pat Eaton, 57, cares for her in the daytime.She said: "I was very poorly on Sunday and I couldn't get out of bed. On Monday I was sat on the settee."On Tuesday I went to see my friends where I worked and I went to Morrison's and on Wednesday I stayed in and spent a bit of time on the computer. On Thursday I saw my friends again."Helen has to have enough oxygen with her in a portable cylinder and can only be away from home for a few hours at a time because the supply is limited and needs to be topped up.And then there are the medical appointments to schedule in. On Friday Helen had an appointment with a dietician because her weight has fallen. She now finds it too exhausting to chew, swallow and breathe at the same time so can only eating soft food such as soup."Because of the effort involved in breathing and eating you don't feel like eating.I've lost weight but I need to keep my weight up as you need to be at a certain weight to be able to have transplant," she explained.She's now been given shakes and powders to add calories and nutrients to her diet and hopes this will prevent any further weight loss.After her appointment Helen had to go home to get more portable oxygen and then she spent three hours at the Northern General Hospital, having treatment to protect her bones from thinning.It is clearly a tough time for Helen and her family - but she is determinedly optimistic and holds on to the firm belief she will be one of the lucky people who gets a transplant."I can't afford to feel sorry for myself," she said. "There are some days when I don't fe
el positive but I know have to be strong, stay positive and fight on."Across the UK as many as 8,000 people are waiting for organ transplant but there are not enough donor organs available. Although 3,000 people had organ transplants last year, 1,000 people died while on the waiting list.The Star is aiming to persuade 25,000 readers to sign on to the NHS Organ Donor Register by August, when the 31st Westfield Health British Transplant Games take place in Sheffield.

2008-04-10T07:39:00.000-07:00

WHEN Helen Miller celebrates her 38th birthday this Sunday she wants just one gift - the precious gift of life.The mum-of-two has spent almost a year on a waiting list for a lung transplant, and her health is steadily growing worse.Helen, from South Anston, is one of 10 people in the region needing new lungs - but a desperate shortage of donor organs means none of them know if they will get a second chance at life."I can hardly wash my hair or brush my teeth, but if someone saw me they'd think I'm alright," said Helen, whose smart clothes and careful make-up disguise the seriousness of her illness.The reality of life on the waiting list is far more extreme than can be imagined.Helen's experience highlights the fact that anyone, even people in the prime of their lives, can suddenly find themselves in need of lifesaving surgery.A few years ago Helen was like many women her age - a busy working mum climbing the career ladder, making plans and enjoying life. Now Helen needs oxygen 24 hours a day to help her breathe, and much of her life is spent at home on the sofa because simple everyday tasks -making a cup of tea, washing her hair, brushing her teeth - are so exhausting."I will not let this get to me. If I do die waiting on the transplant list then I need people to know what it's like," said Helen.She needs someone with her at all times and her mum Pat, aged 57, is her daytime carer, while husband John, 43, and kids Abbie, 18, and Daniel, 14, care for her in the evening and at the weekends.But even though her body is fragile Helen, a witty, confident and intelligent woman, has many hopes and dreams for the future.She wants to enjoy life with her family and get back to a successful career of training managers."My brain is whirling with ideas and thoughts and there is so much I want to do," said Helen. "I've so much to give. But it's like I have my brain but my mum's become my body."Helen knows first-hand how frustrating it is to go from being an independent person with energy, to having so little strength th
at getting up, getting dressed, and eating breakfast takes as long as two hours.Making her bed and cleaning is impossible for Helen. Getting up and down the stairs at home is so draining she can only do it once a day. She can't walk about and is reliant on a wheelchair outside, and has to taken portable oxygen cylinders with her.She's even had to change her eating habits - food that needs a lot of chewing requires too much effort.Helen now eats soft food like shepherd's pie and creamy soups. She has to ensure her weight - which has already dropped by a stone-and-a-half - does not falls too low or she will not be healthy enough for any transplant.Helen's health problems started as a teenager when she developed an auto-immune disease and nearly died.
She recovered and her problems were kept under control by medication until five years ago when she suddenly developed breathing problems.Doctors discovered she had emphysema, a serious lung condition, which may or may not be connected.“They told me I had the lungs of an 80-year-old woman,” said Helen. “I could’t believe it - I didn’t feel that bad at the time.”At first Helen managed to continue with her job but her lungs gradually deteriorated and she was told almost a year ago she needed to join the waiting list as a transplant was her only hope of survival.She dreams of resuming a no
rmal life - returning to work and being able to enjoy things like walking, and shopping trips to London with her family.“They are very, very supportive, they do so much for me, and this affects the whole family,” she said.Life is geared around waiting and hoping for that vital phone call. The family carry mobile phones with them everywhere they go so a transplant coordinator can contact them day or night. Helen says life at the moment is limbo.“I have so many plans and ideas for when I’m better - I want to go and see a show in London, I want to go for a walk, I want to be able to get up and walk down to the shops.”Not knowing what the future holds is, she says, a horrendous thing to face every day.“It’s not knowing if you’re going to live or die,” she said. “If I can get five years’ it would mean the world. There are people who have had another 20 and I live in hope.”