As you read these extracts from Helen Miller’s diary entries on her blog I would like you to use all your powers of empathy. Try really hard to put yourself in the position of Helen and her family.

Helen started her diary in April 2008 after she had been placed on a transplant waiting list for a double lung procedure less than a year before that. She had been diagnosed with emphysema some five years earlier and her lung capacity was starting to shrink very rapidly. Helen needed the support of a BiPap ventilator assist machine – her ability to breathe had to be stabilised mechanically when she experienced severe shortages of breath. It is difficult to imagine having to depend on a piece of equipment to carry out the ordinary daily routines that most of us take totally for granted. The shortage of oxygenated blood to her body left Helen exhausted most of the time and very dependent on her husband John, her two children, Daniel and Abi and her parents.

It is not just the individual patient that gets listed for a life saving transplant – their friends, neighbours and work mates live through the same hopes and fears. I had read Helen’s blog for some time, before I was amazed to see her on a BBC programme encouraging people to make positive choices about signing up to be donors. Understandably she wanted people to discuss the very sensitive issue of signing the Organ Donor Register to help the thousands of people desperately waiting for a life transforming transplant. Helen’s diary featured in her local Star newspaper that covers the South Anston area in West Yorkshire where Helen lived. You can read Helen’s diary at the newspaper’s website and on her blog (http://www.thestar.co.uk/). Helen campaigned tirelessly to encourage people to sign the Organ Donor Register despite the physical and emotional challenges she had to confront on a daily basis. Not only that but Helen continued with her Open University course too. Her zest for life oozed from the TV screen despite her battle with emphysema.

Helen came across in the programme in a very matter of fact way. When a doctor tells you that you need a life saving transplant you have no option. You have to plan for a positive outcome or you go under. The NHS first tells you that you are going to die, but then offers you the hope of a life saving transplant. Helen adopted an ultra positive approach with the help of her family. It is incredibly stressful to live in a vacuum where your destiny is in the hands of other human beings. It must be distressing to know that your rescue can only be achieved through the generosity of a complete stranger and the professional commitment of health professionals around the country. Loved ones watch on helpless – they offer much needed love and support, but they cannot provide the ultimate solution. The TV programme showed a glimpse of the stress that Helen and her family had to endure waiting for her transplant. Helen’s diary expresses the hopes and fears felt by many people. Her words were written with great courage and tenacity.

I am grateful to Helen’s mother for allowing me to reproduce extracts from Helen’s blog on this website. The entire blog can be read at the following web link: [Helen Miller's blog web link]

I find all of Helen’s blog very challenging & emotional. But I would particularly like you to read Helen’s entry for June 4th. Can you imagine what it is like to be called for your transplant to be told that the organs are not suitable? Her entry for July 1st is truly humbling.

Sunday 27th April 2008

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 quiet and shallow I was breathing. I managed to walk to the dining room about 10 yards 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 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 peak 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. Last 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.

Friday 4th June 2008

At 1.30am 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 nitty gritty.

At 1.50 the Ambulance arrived and Mum and I got in, I must admit that one of the crew wasn’t one of the happiest people I’ve 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 4.22am 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 cannot describe the feeling that I experienced. On the one hand you think you’ve lost the chance at living , then you think that at least you’re going to live another night ( thinking that the transplant could go wrong ) and then you immediately feel utter depression).

I looked at Mum and the Ambulance crew, shook my head and just said let’s 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 it’s 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.

Thursday 19th June 2008

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.

Monday 23rd June 2008

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.

Monday 30th June 2008

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 1st July 2008

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.

I’ve 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 she’s just been in touch. I am thrilled for her and her family and am grateful to the family who gave her this gift.

Saturday 2nd August 2008

The past few days have been a bit of a blur .I’ve had the most awful bout of a stomach virus (campylobacter) . The doctor came Friday morning (from what I can remember) took a sample and gave me some antibiotics 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!

Wednesday 3rd September 2008

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. ‘

Monday 13th October 2008

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 and 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.

Friday 7th November 2008

Woke early and managed to get up. Had a little headache but after two cups of tea it went. Spent last night texting John and being horrible to him. I'm so sorry John.

I want to lash out and shout at someone and scream 'why me?' I thought they had got rid of the death sentence but I'm living it every day along with my family.

I said sorry this morning and he just said doesn't matter he understood. I wish I could understand how he and the kids feel but I can't. I want to be able to take care of their needs and sit with them when they are ill and need support or a shoulder to cry on but I'm not and that kills me. Today has been okay. Mum has been wrapping my Christmas presents that I have been buying over the past few months. I'm now sat aching watching TV and waiting for 5pm so I can take my next dose of pain killers.

Saturday 6th December 2008

I have decided that from now on until after Christmas I won't be going to Meadowhall on the weekends. It's too busy I get carrier bags in the face, people muttering why wheelchairs are allowed in - yes I've heard them

I completed my second assignment today and emailed it through to the tutor so looking forward to the comments and feedback I receive.

Saturday 13th December 2008

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 2am 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 dad's car and going back to theirs. I calmed down and went to sleep.

Sunday 14th December 2008

After tossing and turning I eventually woke at 11.30am to three messages from John. One saying ‘where am I’? The next one asking if I was okay and then the last one saying stop at mum’s until the oxygen machine is 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 mum’s for the night.

Monday 15th December 2008

Dan was off to London today at 5am 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 11.45am for an assessment for rehabilitation. I was left waiting 45 minutes without an explanation as to why. But I 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 (shopping complex in Sheffield) 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 two very disturbed night's sleep.

Tuesday 16th December 2008

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. Daniel's 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.

Wednesday 17th December 2008

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 two Christmas films whilst I coughed all the way through and my friend Sue came to visit which was lovely.

Thursday 18th December 2008

Worst night yet for coughing, it may be that the antibiotics are working and trying to bring the gunk up but it just won't come up yet. I just feel terrible.

Friday 19th December 2008 - Last diary entry from Helen

I'm sat here on the BiPap machine so it can breathe for me as I feel terrible, however 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 is 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 Santa grants my wish. Let's wait and see.

Helen Miller died on December 27th 2008.

The Star's tribute to Helen Miller:

What follows is the tribute that Helen's local paper, The Star, made to her following her death:

HELEN Miller, the mother-of-two who spearheaded The Star’s Gift of Life campaign as she waited for a lung transplant, has died aged 38.

Brave Helen, from South Anston, wrote a popular weekly column for The Star because she wanted readers to know what life was really like on the organ transplant list.

She was diagnosed with debilitating chronic lung disease emphysema in 2003.

Her condition became gradually worse and left her breathless and needing to use a wheelchair. She was left with so little energy that even brushing her hair and cleaning her teeth were exhausting.

Her mum Pat Eaton told The Star today:

“The campaign gave her something to work at - it was her personal crusade.”

She paid tribute to her daughter as a “lovely bright girl who was devoted to her family and put everyone else before herself”.

Pat said: “Right at the end, she knew how sick she was and was making a list for her husband so he knew where everything was and what he had to do. She was that sort of person - the world’s greatest organiser.

“When she couldn’t get out anymore she would organise everything over the phone or on the internet.

“She was at her happiest when she was chatting to people and organising her family.”

Helen died on Saturday in the Northern General Hospital where she had been admitted a few days earlier with an infection. Doctors told her family her lungs were no longer strong enough for her to survive.

Pat said: “We all knew it was coming but it doesn’t make it any easier to let go.”

In her last diary for The Star, Helen urged people to discuss organ donation with their families over Christmas - but not to be sad about it. Pat said: “She didn’t want people to be morbid over Christmas but she wanted them to a have a word with their families about loved ones. She knew it might not help her but that it could help someone else. She knew if she didn’t get a transplant soon it would be too late."

Her mum added: “Her own health had deteriorated obviously and the transplant just didn’t come through for her, but she wanted to try to make a difference to other people. That is why she got involved in the campaign.”

Helen, who leaves husband John, daughter Abi, 19, and son Daniel, 15, was rushed to Newcastle’s Freeman Hospital twice for a possible transplant but was disappointed on both occasions. The first time the lung was not in a good enough condition and the second time, as Helen and her mum arrived in the hospital car park, they were told the organ was unsuitable. (Other articles in relation to Helen can be found at the Star's website: http://www.thestar.co.uk/).

Helen’s survival depended on social cooperation. Her rescue from lung failure and her family’s happiness depended on the collaboration of bereaved families and the professionalism of intensive care medics to retrieve the lungs that would have saved Helen’s life. Every missed opportunity over a two year period failed the Miller family. They have to live with the consequences of that failure forever. I sincerely hope your family never has to experience this entirely avoidable loss.

Too many missed opportunities that should never happen

During Helen’s time on the lung transplant waiting list in the region of 25,000 people died in intensive care units in England and Wales. Approximately 1,200 bereaved families gave their consent to donate organs from donors that were ventilated (i.e. patients that had been diagnosed as brain stem dead). Only one third of these donors could donate their lungs for various medical reasons. Ten per cent of the retrieved lungs could not be used because they had rapidly deteriorated when removed from the donor. This left under 400 opportunities for lung transplantation over a two year period. In 2007-08 233 lungs were retrieved; by March 2008 272 patients were on the lung transplant waiting list; 110 patients had received transplanted lungs; 34 patients had been removed from the list and 60 had died.

These figures need no commentary other than Helen’s diary entry for Friday 7th November.

I am extremely grateful to Helen's parents for allowing me to share Helen's tragic experience with you. They want her legacy to live on, to serve as a reminder that lives can be lost and saved through transplants. It is little comfort to Helen's family that over 3,200 organ transplant procedures are successfully carried out annually. Yet 1,000 avoidable deaths happen each year to patients listed for organ tranplants. Helen's death is such a terrible waste. Helen's campaign will live on through her family and friends.

TRANSPLANTS CAN SAVE LIVES,

BUT ONLY IF PEOPLE SAY 'YES' TO DONATION