What if it doesn’t happen?
Sunday
A VERY quiet day today. I sat at the computer and tried to concentrate on my college assignments. I watched BBC1’s Sunday Life in which I appeared - the camera put two stone on me! And I think I need elocution lessons! But I’m glad I took part and hope it’s raised awareness. I have started to get quite depressed lately, it may be the tablets I’m on or it could be that I’ve really started to think, ‘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. The warm weather helps. It cheers me up and helps me relax. The smell of suntan cream and the blue sky remind me so much of holidays. The first thing I will do if I get the transplant is to go away. I am stuck at the moment and I can’t book a holiday.
Tuesday
MUM came and stayed with me today, we watched a bit of TV and then she helped with the ironing. She’s trying to help my husband John by alleviating some of the pressure on him. My friends Sue and Jo came 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 stay 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. It was John’s birthday and I made him a memory book with photos of when we first got together and the 20 years we’ve been together. When I was 17 I told my friend, ‘I’m going to marry him’, and we fell in love. He’s my soulmate.
Friday
WENT to local hairdresser for a good wash and blow dry - I can’t wash my hair anymore as it’s too exhausting. They waxed my eye brows as well. I feel totally different now. Simple things make me so happy.
Click here to become a donor and back The Star's Gift of Life campaign which is aiming to add the names of 25,000 readers to the Organ Donor Register by August, when the 31st Westfield Health British Transplant Games take place in Sheffield.
Published Date:
12/05/2008
Modified Date:
12/05/2008
The night I thought I was going to die
Saturday
In the night I thought I was seconds from dying. I was taking very short and shallow breaths and I felt peculiar - more than usual.
I was trying to regulate my breathing by trying desperately to do the exercises I have been shown, but nothing was working.
After about two or three minutes - which 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 our son Daniel up to see if I was okay. All I could mutter was ‘ambulance’ and ‘spray’. He screamed for John who immediately called my mum first, then the ambulance.
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, but all I felt was utter panic and desperation.
Within minutes mum and dad appeared and took over. With the appearance of the paramedics, everything calmed down after about one hour. My oxygen levels were fine but my pulse rate was 140+ and this was afterwards.
Sunday
Today's been a funny sort of day. The dining room has been made in to a makeshift bedroom but I hate it. I have cried on and off all day at the thought 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.
Monday
MUM came here at 9am she didn’t want me to be left on my own. She phoned the nurses and told them what had happened and told them I wanted to know if this was what was going to happen at the end.
The nurse explained it’s usually a very peaceful end, and it happens whilst asleep, so I had comfort in that.
Tuesday
HAD a flurry of friends and family helping me today from steaming the settee to cleaning out my cupboards.
This is such a good help to my family and me. I can’t thank everyone enough.
Wednesday
The TV programme makers have phoned and spoken to my dad asking if he will attend the live debate on the opt-out schemes for the Sunday Life morning programme.
Mum and Dad both agreed not to do it, I didn’t want him to, as he would have got too upset with the people who are against the opt-out scheme.
Thursday
PHYSIO has been again today but I’m just too scared and weak to try anything new. I asked mum to take me out for an hour. As soon as I went out the door the first thing I noticed was how quiet everything was, and the birds were singing. What a beautiful sound.
Click here to become a donor and back The Star's Gift of Life campaign which is aiming to add the names of 25,000 readers to the Organ Donor Register by August, when the 31st Westfield Health British Transplant Games take place in Sheffield.
Published Date:
06/05/2008
Modified Date:
06/05/2008
Don't let it become yesterday's news
FRIDAY
I had my second home physiotherapy session today. I totally forgot they were coming to the house even though I had an appointment card at the side of me. The consultant says it quite common to forget things when you are under immense stress. I now have a large rubber band to do resistance exercises for my arms and legs and a step - to step on and off - it’s only small and I’m supposed to do five steps several times a day. It makes my muscles hurt but I’ve got to do it.
SATURDAY
ALL the men have gone to watch United play so it’s a nice a quiet day for Mum, Abbie and me. I went for my usual sabbatical around Meadowhall and had the most exquisite meal at the Italian; I had salmon and prawns and I managed to eat most of it. By the end of the day I felt very emotional and couldn’t stop crying. I have no idea why I felt like this.
SUNDAY
QUITE a boring day really by anyone standards but to me it was luxury. John cooked me a beautiful Sunday dinner and then I went back to bed and watched TV and read the papers. The only time I feel at all normal is when I’m perfectly still and don’t have to move.
MONDAY
FOUND out today that the TV programme I am in is to be hopefully scheduled to be shown on May 4 May at 10.00 in the morning on BBC1, it’s a new show called Sunday Lives. (Helen was interviewed for the programme which is to feature organ transplantation). So I hope you all watch it and see what you think.
TUESDAY
JANET my friend came round today and cleaned up and tidied for me. I even sat on the floor and tried to help by polishing the TV and tables. I felt so proud that I had done this but gosh did it knackered me.
WEDNESDAY
A FEW friends came around to see me today. It was a lovely day and we reminisced about the old times at work. I had a good laugh so it took my mind of things.
I’ve just found out that all the football clubs in the UK are going to promote the transplant register next weekend. This is absolutely fantastic and I thank everyone who is making this happen. If we don’t keep campaigning about this then it becomes yesterday’s news.
THURSDAY
FELT on form today. I helped my friends write a few reports and started writing my university assignments. Quite a busy day as well as the physio came again and I practiced my routine. She also gave me a back massage. This helps me tremendously as it helps my circulation. This is one thing I would have every day if it was possible as I feel much better afterwards and my breathing becomes a little more normal.
FRIDAY
I AM going to do my college work today. I got up at 9am I could have stopped in bed but I knew my friend was phoning at 10am so pushed myself to get up. Once I’m up I am OK.
Click here to become a donor and back The Star's Gift of Life campaign which is aiming to add the names of 25,000 readers to the Organ Donor Register by August, when the 31st Westfield Health British Transplant Games take place in Sheffield.
Published Date:
25/04/2008
Modified Date:
06/05/2008
Ups and downs
FRIDAY
Family visited me as I sat on the settee all day at my laptop. I've started to write a blog and am promoting the UK transplant organisation on facebook. If people reading this have web sites they can have a link from the www.transplant.org site directly linked to theirs. I hope readers do this if they can.
I had an amazing response on facebook. A couple are joining the organ donor register and they've decided to also register their young daughter. My son Daniel, 15, has also said he would like a donor card.
SATURDAY
Went to Meadowhall again! I went round in my chair with the oxygen on. I feel safe there, it's warm, flat and dry, there's places to eat and loos. This is the first time I have worn my oxygen around Meadowhall. Chloe, my two-year-old niece, sat on my knee all the way around. I felt so blessed that I could spend this time with her.
SUNDAY
Stayed in bed all day reading. I watched TV and felt very weak. Very miserable day for me today.
MONDAY
I have just read an article about a woman on the transplant list for two years who had four 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.
TUESDAY
I went online to read my diary in The Star and crumbled into tears after reading of the sad passing of Michael Charlesworth who was waiting for a lung transplant. It's tragic. John, my husband, was phoning me all day to make sure I'm okay. Friends and family have also been to visit, just to keep my spirits up.
WEDNESDAY
Busy day today. The Worksop Guardian newspaper has been to do an interview so they too hopefully can publicise the UK transplant register.
THURSDAY
Felt much better today, bathed, washed hair, dressed and I even made tea - tuna pasta bake. It would probably take you about 10 minutes to make it. It took me an hour-and-a-half. Every time I did something, like getting milk out of the fridge, I had to have a rest for five minutes. It took ages but I did feel like I'd achieved something and the kids wolfed it down! I feel that my infection has nearly gone and I have started to feel much better now.
FRIDAY
I feel brighter today. I'm up and dressed and waiting for my mum to come round to have a cup of tea. And I want to keep reminding people of how important it is to sign up for organ donor register.
Click here to become a donor and back The Star's Gift of Life campaign which is aiming to add the names of 25,000 readers to the Organ Donor Register by August, when the 31st Westfield Health British Transplant Games take place in Sheffield.
Published Date:
22/04/2008
Modified Date:
22/04/2008
I dread waking up now
Friday I’M in hospital and all my independence has disappeared. I can’t even go to the toilet on my own as in hospital you can’t 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 is extremely ill but still managed to have her beautiful red false nails on, with one missing so they can still take her oxygen levels. I thought it was wonderful.
Saturday I NEED to get home. I am tired as I’m not getting any sleep, they keep the lights on all night, wake me up to give me a nebuliser, and a few disturbances in the night with a couple of patients has made me feel very vulnerable and scared. I got home and fell asleep. I can really relax now.
Sunday STAYED in bed till dinner time, 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 every time I talked I started coughing and the strain is hurting my stomach muscles.
Monday STAYED on the settee all day. Today is the first day I’ve admitted to myself that I’m starting to dread waking up in the morning and feeling the way I do. Writing this down in the diary is a release and I can put down in writing what I don’t want to say out loud.
Tuesday A FRIEND came round and tided up for me and kept me entertained. Our daughter Abi has been laid off at work and is desperately looking for another job.
Wednesday MY brother Andrew arrived from Newcastle with his beautiful daughter Chloe who’s two and has cheered me up tremendously. The nurse from the hospital has phoned and told me to keep my chin up. The saying is you need to be well enough for the transplant but poorly enough to need it. I have reached the point when I'm practically begging now.
Thursday MY friend Emma is coming today with her new baby Max who I haven’t seen yet. I’m scared I won’t have the energy to hold him as I’m very weak now and my muscles have deteriorated. The physio has phoned and they are going to visit to see if they can help and advise on exercises.
Friday THEY are going to keep me at the top of the transplant list. As soon as there is a suitable donor I’ll have my transplant. But I’ve been waiting for nearly a year and have been at the top of the list. Maybe now I’m top of the top on the list. I can’t remember the actual date I joined - I want to look forward and don’t want to think about how long I’ve had this illness.
Click here to become a donor and back The Star's Gift of Life campaign which is aiming to add the names of 25,000 readers to the Organ Donor Register by August, when the 31st Westfield Health British Transplant Games take place in Sheffield.
Published Date:
14/04/2008
Modified Date:
14/04/2008
Back home
I am out of hospital now but still have an infection.
My oxygen was increased to 8 lpm but now back to 5.
Family all rallying around me and taking care of me .
Breath still very shallow but at least im not in hospital now.
Thank you to everyone who is supporting the gift for life campaign.
If you have supported this by registering can you please post a comment and then i can see what impact we are all making .
Thanks Helen
Click here to become a donor and back The Star's Gift of Life campaign which is aiming to add the names of 25,000 readers to the Organ Donor Register by August, when the 31st Westfield Health British Transplant Games take place in Sheffield.
Published Date:
09/04/2008
Modified Date:
14/04/2008
I cannot get my breath
FRIDAY
We'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 (I find eating difficult because of the effort to coordinate my breathing with chewing and swallowing).
And I was up until 9pm – well, I am on holiday (Normally I'm in bed by 7pm as I 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.
Click here to become a donor and back The Star's Gift of Life campaign which is aiming to add the names of 25,000 readers to the Organ Donor Register by August, when the 31st Westfield Health British Transplant Games take place in Sheffield.
Published Date:
08/04/2008
Modified Date:
08/04/2008
Everyday things mean so much
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.
The Star's Gift of Life campaign aims to add the names of 25,000 readers to the Organ Donor Register by August, when the 31st Westfield Health British Transplant Games take place in Sheffield.
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.
Click here to become a donor and back The Star's Gift of Life campaign which is aiming to add the names of 25,000 readers to the Organ Donor Register by August, when the 31st Westfield Health British Transplant Games take place in Sheffield.
Published Date:
08/04/2008
Modified Date:
08/04/2008