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.

The Star’s Gift of Life campaign aimed to add the names of 25,000 readers to the Organ Donor Register - and has so far added more than 28,000.

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.

Helen’s funeral takes place at St James’ Parish Church at South Anston at 11am on Thursday January 8.

You can leave Helen your tribute in the Star's book of condolences

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 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 their's. I calmed down and went to sleep.

SUNDAY

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 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.

MONDAY

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 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

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

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

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

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 I Santa grants my wish let's wait and see.

Saturday

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.

Sunday

Lazy day for me, hectic day for John as usual. He tries to catch up on the cleaning, does ironing and cooks Sunday dinner.

I read the paper and then sit watching TV and writing Christmas cards. I've put a letter in my cards telling everyone the positives and not the negatives.

Monday

Mum did a bit of shopping for me and bought me a cake for Abi that John didn't realise was for her birthday and started to eat on Monday night. It's a good job we all saw the funny side.

Tuesday

Abi's birthday. She loved her presents and had some beautiful cards. We had a takeaway which was a nice treat. She's 19 now and leaves for uni' soon.

Wednesday

Went to Doncaster with Mum for a couple of hours. It was freezing so we tried to stop in the shops as much as possible. I only really went for the House of Fraser sale. Bought a few bargains.

I've been feeling ok lately but the longer I have to wait for the transplant the more I start to feel sick and start to worry and have doubts.

Will I be ok? Will I be able to walk straight away? How much pain will I be in? How long will I be in recovery? Will I ever have a transplant?

Will it work?

Thursday

Snowing! I like the look of the snow but I'm not going to venture out. I'm having the shopping delivered. I used to love supermarket shopping  and now I have to use the internet; it's just not the same.

Friday

This is the first year that we haven't got the Christmas tree up on December 1. None of us have even talked about it yet. For the past three years we have thought I would have had the transplant and be able to enjoy the festivities. We all feel so deflated and can't see an end to this.




To sign up as an organ donor, visit www.thestar.co.uk/donor and click on the link and go to the Organ Donor Register.

Saturday

Didn’t go out. Went to mum’s and watched TV and slept. Saturday night Tracy and Beth came to stay and watch TV with me. I had a good time and so did they.

Sunday

Woke at 11 and then lazily dressed and bathed. I then watched a film with mum and did my degree assignment. Sunday night TV then beckoned and I watched Strictly and Celebrity. I went to bed at 7 as I felt funny. I couldn’t put my finger on it but I felt sluggish, headachey and tired.

Monday

I asked mum to wake me a 9 as I had an appointment with the physio at 12.45 (that’s how long it takes me to get ready and settled now).
Came home feeling tired and still had a headache.

Tuesday

Had lots of things to do on the internet today for Abi and Dan sorting out various issues and school and university. Dad was laughing at me watching Jeremy Kyle and I said it takes my mind off my own troubles. Sometimes, it all gets too much and if anyone says anything to me that normally I would ignore or laugh about I just burst into tears.

Wednesday

Nurses came to take blood samples to check my antibodies and whole host of other things which I never ask about. John’s mum and sister came to visit me for an hour which was nice.

Thursday

I’m trying to tidy up a bit today, I can sit down polish the table and then have to rest for 5 minutes, I then move to the TV do the same and rest. I’m trying to do this as part of my exercise plan as I don’t have physio at the moment. It’s Abi's birthday next week. She will be 19, I’d love to be able to take her out on my own but I can’t and that upsets me.

Friday

Kettle broke, Dan forgot his dinner money, a dear friend has just lost her father. Not a very good day.

*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.

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.

FRIDAY

I have been extremely ill, was in bed and couldn’t move. I was struggling to breathe, my body ached. I took my pain killers 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 anymore! I don’t have this feeling very often but there are some times when the pain and helplessness are so raw that I don’t want to be here anymore. I didn’t even have the strength to cry. The hardest things to cope with afterwards when you start to get better is look at your family and see their faces and the utter despair they have all gone though. They don’t know what to do, how to help.

SATURDAY

I made John and 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 upset. Then I started crying I didn’t want to leave John and the kids. No matter how old you are you always need you 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 luke warm bath, as on Saturday mum tried to give me a strip wash but I was so weak. I just sat and put my head on mum’s chest while she washed me . I brushed my teeth as they hadn’t been cleaned since Thursday.

MONDAY

THIS is the first time I’ve been well enough to go on the computer and read the newspapers.

TUESDAY
I slept through the night - this is so unusual for me. I managed to bathe and get back in my pyjamas’s 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 worse so I could show you all. Every picture I have is when I’m really trying hard to look well.

THURSDAY

WITH the illnesses I have 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 still positive but just weaker. I have received mails from more people through the blog site and contact everyone who mails me. It’s good to talk to people who are in the same position as me.

FRIDAY

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 everyday 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

STOPPED in all day felt so tired. I had machines on all night to see how much build up of carbon dioxide I am getting.

 I was scared looking at the numbers on the machine and wondering if I was going to die if I slept. Due to three hospital visits the previous week, we were all so tired that Saturday was a lazy day.

I sat on the computer and mum did the ironing.


SUNDAY

MORE of the same - sleeping and working on computer.


MONDAY

DAD took the machines back to hospital and waited for the results. I am getting a build up of carbon dioxide if the oxygen flow is high at night. I need to clarify this on my next visit.



TUESDAY

CALENDAR TV phoned and wanted to do a piece on me to be screened that night. The phone call was at 10.30am and they wanted to come at 12 noon. They were a nice crew and I think the TV piece went well. I told everyone that it was on. I hope some of you were able to watch it.



WEDNESDAY

WOKEN by the district nurse at home to give me the flu jab. Her last comment while leaving was 'I hope you don't get the flu now like my husband has'. I don't think she realised what she said. I think it was flippant but the seriousness made me feel sick. I dont think my body could cope with that.

We laughed watching 'The Family' I wonder how many other families are the same because ours is.



THURSDAY

I DIDN'T sleep at all last night as the oxygen was turned down and I was very restless. At 6.30am, I was up watching TV and waiting for John and Dan got up.

I have been laid on the settee all day sleeping on and off. Mum and John keep popping in just to make sure I was OK.

SATURDAY

Awoke with the laughs and giggles of my niece trying to be quiet. Stopped in today and watched her playing shops and creating jigsaws with mum and Tracey, her other aunt.

I fell to sleep for three hours whilst all this was going on. I am not able to fight going to sleep - I just drift off.

I can't breathe through my nose anymore and therefore I end up with an extremely dry mouth all the time, especially through the night.

In the evening all the family got together and we had a buffet, which was nice.

SUNDAY

THE headaches are getting worse in the morning, I couldn't open my eyes and was in agony until I had three cups of tea and strong pain killers. Even the turning of the newspaper sounded 100 times magnified.

MONDAY

JOHN came to see me at mum's as he was working nearby. I was laid on the settee just drifting off to sleep and so were mum and dad, we laughed and said it was like a retirement home. Yes, peace and quiet... it's wonderful.

Then reality hits home when Abi walks though the door and, like any other teenager, she has the worries of the world on her shoulders.

TUESDAY

HOSPITAL day today for my bone density scan. All okay, a little under average but with the medication I am on it should remain stable.

WEDNESDAY

I HAD a text from Louise (transplanted lung) today, the reason I hadn't heard from her was that she'd had to have a second operation.

Have read up about transplants and know what to expect and what could go wrong.

THURSDAY

MY Open University pack came today, so I am avidly reading through the requirements and watching the DVD which accompanies the unit.

FRIDAY

Stopping at mums again for a few days and doing my Open University work. My Aunty Katy should be staying for the day tomorrow and I hope she does, so we can all go out tomorrow.

-  The Star's Gift of Life campaign has recruited 25,000 readers to the Organ Donor Register in the last six months.

There are, 8,000 people in the UK waiting for a new kidney, liver, lung or heart. Click here to sign up as an organ donor.