Image by RockScar Love owned by Amy Tippins who creates sportswear in support for organ donation.  Go on her Facebook Page to look at the designs or join and write on the wall HERE or preferably if you wish to look at more designs by rockscar love then go to the website HERE

Transplant Chronicles

By Salma Ali

Introduction

A lot of the things written (for the this piece) by me in general will be a mixture of uplifting, informative and hopefully evoke conversation with the person sitting next to you, someone at work etc. I hope everyone takes something away with them to think about when reading my pieces.

Donna’s Dream

I couldn’t start off this piece without including the reason why my contribution to this page as a whole was constructed so here goes.

You went where the horses cry you’d never taken that way with me before did u feel the need for change?

I didn’t just wake up after a seven hour operation in the mid morning of 10^th October 2007 being told by a nurse ”you’ve had a transplant do you know this?’’ and realise that i had to voice organ donation/transplantation awareness, or even before this moment in my life (well 2^nd life anyway). I just wanted to come down off the drugs (because they really do work and fart) have a hug (don’t ask me why?!) and have a proper rest in my own bed with my own stuff around me. I had no intention of trying to change people’s minds by telling them the benefits of organ donation or the pros and cons i would later experience of being a “TX”, “Tranny” or commonly known as a Transplant Recipient or any of the sort.

But going back in the ‘real world’ after something so traumatic was, and still can be, difficult. It got a little easier when roughly two yrs after my transplant i met up (via Facebook) with an old school friend. She’s great and i consider her an extended family member (she’s more Asian than me even though she’s Caucasian??!).

By this time I’d become a little curious into the goings on of the transplant world and so would do searches on the internet but to no avail i stopped, don’t ask i don’t know why maybe it wasn’t my time.

I rock, you rock, my rock?!

Months had passed and it was time to get up at 7am and drag myself over to the QE to check if i was ok. I was in clinicwaiting for my blood to be taken, holding onto my mom as i was really tired, and just wanting to go home when I overheard a woman asking about pillow rests. I couldn’t understand the conversation as i was half asleep. But my mom (who is the sharpest knife in the drawer) told me that it sounds like she means “an assessment” too. All i can remember of this woman was that she must have been here a few times although id never seen her before and she seemed to know the drill as it were. So I’d been to clinic the all clear was given and i was living day to day but something was missing. I tried to figure out what but it just wasn’t coming to me. So i just left the thoughts. I went on facebook and saw a really cool image promoting organ donation as somebody’s profile picture.

So i clicked on this page and decided to friend request for this page. I got to be a friend and read some of the messages on the wall and they were to somebody by the name of Donna. I wrote a message (not knowing who Donna was) but I had friend requested the page so i felt little rude not writing anything?! Little did I know that this would change my entire life and my feelings to do with dealing with the transition that the transplant had given me to do with living in the outside world.  I didn’t expect a response but got one. “Oh i know you from clinic”. I thought mmmmm well i don’t know you,… I don’t think?!” racking my brains trying to remember who was in clinic. I couldn’t figure out who Donna was when my mom said to me “oh i was thinking about that girl in clinic salma remember when you were in the wheelchair’. (Although I’d rather forget.) ‘”That’s who she is?!’’ i said. Quickly replying to her message saying something on the lines of ‘”yes i know you too.’’

Transplant or no Transplant

Over the course of months of knowing Donna via her status’s which a little quirky but were always always entertaining and issues of her heart would crop up from time to time. I immediately felt drawn to her spirit as i know that many of you who knew Donna would also agree when i say this. Which i guess anyone would transplant or no transplant. She never made you forget to enjoy every inch of life that you transplant or no transplant because it is special. But also confident and comfortable about talking about such issues to do with transplantation/organ donation also because she made transplant and the need for more to be done on the organ donor register.

We’re the kids, we’re the kids

This spurned me to do a search on my condition again (and if you don’t know what it is just click on my story section on the site I’m the one with a flower in my hair with a cheesy grin but then i was eating a very cheesy pasta dish) anyway i was flicking through some images on Google for relevant sites when i came across an image which took my breath away i.e.

RIP Katie Williams

8^th July 2006 – 4^th-July 2010

*Katie has her own facebook page that the family made for her to write your condolences HERE or write on her guestbook on HERE

I was totally stunned. Then all of a sudden so many emotions were running through my mind. “Grown ups’’ feel angry and sorry for themselves that they are going through this and there putting their families through it with them. But children have this ability to not understand what’s really happening but just to get on with things, to get to the finish line as it were. Poor Katie Williams did not get to the finishing line unfortunately. With her heart rejecting a second time it was too late in waiting for another heart. Five days before her birthday she closed her eyes and left this earth.

I don’t need your tears

So that’s what influenced my decision to talk about organ donation if not for us, the grownups then do it for the children because that’s all they deserve to be. Children.

If this hasn’t evoked anything inside you to sign the register then you really need to think about the families of Katie and also of other parents that have and are going through the same struggle as Katie and her family did/are and what they must be going through. Because with the power of the people we should be helping in any way we can.

I know that I have won the battle and I won’t win the war but I’ll talk about organ donation until I’m blue in the face because i feel i owe it to the people I’ve met during this evoking, sometimes struggling journey.

Join the organ donor register 0300 123 23 23 or visit the website HERE so what are you waiting for?

If you have been inspired by this story please consider joining the NHS Organ Donor Register by clicking the banner below:

This is Donna Mansell’s story.

Written by me, her husband Az.

Its May 2008. I’ve been working 7 days a week, 10 hours a day running a kitchen for a local pub. All my kitchen staff had left due to arguments with the manager which left me to do all day everyday on my own. I was tired, miserable and a lot of the time lonely. Along came Mike. He had applied for kitchen work a few times but his phone number got lost in the myriad of notes and invoices on the notice board at work. This particular time he decided to walk in, a pushy move which worked for him. I liked his attitude and his perseverance and i thought enough was enough working on my own. We took him on and started him that week.

……..More

Getting to know mike he showed me a tattoo he had on his back with the word “Juffs”. I asked him what it meant. He explained that it was his best friend James’s nickname who had died recently not long after having a heart transplant. He showed me a picture on his phone of another tattoo with the word Juffs on. I asked who that was and he told me that it was his friend, and James’s sister, Donna who had also had heart transplant. I cant remember exactly what i thought at the time but i can remember feeling sorrow for Mike as him and James seemed to be very close friends. At that time i couldn’t even begin to imagine what it would be like to lose someone so close.

A few weeks later on a night off i decided to pop into the pub for a beer. I was chatting away to someone as i went to the bar looking into my hand counting out money. I looked up and stood in front of me the other side of the bar was someone i had never seen before. Brunette hair, a massive smile and ‘those’ cheek bones. I thought christmas had come early. I could barely order my drink.

The next day i was working with mike and asked who it was. Mike told me who was Donna and that he considered her his sister and also…. “don’t even think about it!” He also told me she was with someone which put a dampener on things.

A couple of days later i was working in the kitchen and Donna was working on the bar. I was cutting salad and the kitchen door opened, I felt a tap on my shoulder and looked up. Donna had tapped me with a dessert spoon and said “where do these go?”. I said “excuse me love, you cant come in here and spoon me, we haven’t even been for a drink yet!” she left the kitchen laughing her head off. That little one liner stuck with us until the end! It didn’t strike me till later that it was a long way to walk from the bar with just a dessert spoon and ask where it should go..the huge kitchen sink maybe? That was Donnas way of breaking the ice and struck off a very strong friendship.

After that we would finish work around the same time and sit out the back of the pub talking and chatting. I fancied the pants off her but didn’t want to do anything because i knew she was with someone. Eventually she started opening up about her life, about Leonie and her heart transplant and her brother. She also spoke about her current relationship. They had grown apart and where just co-existing. She would stay up all-night in the living room until he went to work then she would go to bed. I remember thinking that just wasn’t fair, she had been through so much and she was just existing and living each day as it comes. She told me about her favourite film “The Bucket List” and that she wanted to do one and do as much stuff as she could…one of which was to get married.

We carried on our friendship for a while then one night around kicking out time we both went to get up from our seats. I don’t know who moved forwards first but that was our first kiss.

A couple of weeks later we were both working again. I was chatting away to Donna on the bar when she received a text. Donna started to cry, it was a text from Sharon the transplant co-ordinator at the QE Hospital. Donna had heart rejection and the text said “pack your bags and come into the hospital”. That was the first time the seriousness of her condition dawned on me. I went to visit her in hospital while they battled to get her rejection under control, little did i know that would be the first of many visits to what she called East 2 Bosnia.

I struggled to get and see her as much as i wanted to because of the hours i worked. Even at that early stage of our relationship it was affecting me. I spent most of my time worrying at work. Then one day the kitchen door swung open and it was Donna. The hospital had got her rejection under control and sent her home, she arranged a lift back to the pub to surprise me. I’ve never felt such relief, the little bugger!

A lot happened over the next year, our love for each other grew stronger, i earned Leonies trust, met all her friends and family and Donnas previous relationship had come to an end a while back. Mikes approval was taking some doing though, he considered himself her brother and I didn’t think he approved of me for Donna. As our bond grew stronger, unfortunately Donnas health grew weaker. Hospital trips became part of our routine, id even set aside part of my wage packet each month to go toward traveling to the hospital. One day in particular Donna felt really unwell. I tried to convince her to call for an ambulance and she said she was fine just feeling a bit sick. Shortly after she fell really unwell and we called for an ambulance, they came and took us both straight to the QE. I slept that night on the waiting room floor not knowing what tomorrow would bring. I woke to a text from Donna asking where i was, i went to her ward and gave her a kiss. She said she was safe now and that i should go home to sleep and come back later, which i did and they sent her home later that day. I’ve never felt so much emotion for anyone before and this was taking some getting used to!

Although she was back home she found herself very short of breath all the time and struggled to get up the stairs to her flat. Donna asked the housing Association to move her somewhere more suitable, they refused. This prompted a campaign by Donna to get her new house. She went to the local newspaper, started a facebook group and contacted her local MP.

During her next hospital stay Donna mentioned getting married. A whole range of thoughts and feelings flooded my mind. I was over the moon that someone had asked me to marry them, i also thought that in normal relationships couples tend to wait longer before even thinking about it but then this was no ordinary relationship. I said yeah, lets go for it! Not the most romantic of proposals i know, but then it didn’t matter to us. Donna spent the rest of her time in hospital planning every last detail of the wedding which we agreed would be the 17th December. She practically organized the entire day its fair to say she started turning into bridezilla!! When she returned home we went to see the vicar Owain bell. He explained prices and how the day works and that our banns would be read in church. Owain had known Donna and james from school and it was him to conducted the funeral for James.

During another hospital stay Donna, feeling a bit low, felt that i wasn’t quite as sure about getting married as she had thought hoped. Im not very good with speaking about what I’m feeling and thinking, it wasn’t the wedding that was the problem, it was the stress and worry over her health that was affecting me. Coupled with money issues and a few other issues Donna, strong headed as always, decided to call the wedding off. Once she got something into her head it was very difficult, nigh on impossible, to convince her otherwise. So that, as they say, was that!

Good news did come though as Donnas campaign for a suitable house had proved successful. Our local newspaper, the Kidderminster Shuttle, got in touch with our local MP and between them convinced the housing association to give Donna a house. In December 2009 we moved into our new 3 bedroom house complete with stair-lift! Happy Days!

On a monday and tuesday (when not in hospital) Donna used to visit kemp Hospice which is a local charity that offers care to people with terminal illnesses. Donna used to joke she was the youngest person there and she often got mistaken for a volunteer!! One day she was asked to pop into the office as there was someone there that wanted to speak to her. It was Owain Bell the vicar. He spoke to her about the wedding and told her that he knew how much it meant to her to get married and that he wouldn’t leave there without her saying yes to putting the wedding back on. He even told her that he would waiver any cost for the church, service or bell ringers. He just wanted to see her get her wish. Donna phoned me at work and asked if i wanted to do it, straight away i said yes and we agreed to tie the knot on february 26th 2010.

At that time, with the new house and new date set, we couldn’t be happier.

Our first christmas in the house was the beginning of Donnas deteriorating health. Donna had visited a dentist to get a wisdom tooth removed. Not long after, during christmas, Donna was in agony, her face had swelled and she couldn’t eat anything. The doctor kept prescribing anti-biotics which did little and as it was christmas, getting anymore help was difficult. After a difficult christmas Donna visited the doctor and an x-ray was done. It turns out the dentist had left two fragments of tooth in the gum which where causing infection and due to her transplant she would need to go into hospital to have them removed. It was there that they realized that Donnas body had been creating antibodies which were attacking her donor heart.  Another transplant may be the only option but would Donna be too ill to go on the list? That was anyones guess.

When Donna came home kemp hospice gave us a wheelchair on loan which was a massive help. Donna didn’t like it at first because she didn’t want to feel useless and have to rely on me. Her doctor also setup a constant supply of oxygen bottles just in case. Of course Donna pimped the wheelchair out in leopard print!

During this time Donna had struck up a friendship with my younger brother Luke. He came as a bit of a relief to me as all this stress had taken its toll on me and all my fun loving spirit had gone out the window. Luke brought the fun back into Donnas life, i remember thinking they were like the two heckling puppets in the muppet show. Luke was also a great help in that i knew he would be around when i was at work which took away alot of worry. We gave Luke a wedding invitation and gave him one to pass onto my parents. I hadn’t spoken to my parents for quite a while but felt i should invite them. About a week later i asked Luke if they were going to come to the wedding. He told me that they had said they weren’t going to come because they didn’t want that to be the first time they met Donna.

That week, while i was at work, Donna got in a taxi and turned up at my mothers door. She wouldn’t take no for an answer and my mom instantly fell in love with her down to earth personality. That simple act is something i will be eternally grateful for, not only had she broken the ice with my parents but she brought us back together again.

Our wedding day is a point in my life i will never forget. Me, being last minute.com, still had items to get for my suit! Donna was being pampered and poured over back at the house while i was running round like a blue arse fly trying to get ready in time. My brother Lee took me and Luke to the church and as soon as i got near the door the nerves set in. It would be fair to say i was sh*ting my self! I had never been in St Marys Church before and inside it is stunning. I couldn’t believe the turn out either, Friends and family packed the church with people stood up at the back. I stood at the front shaking like a leaf and then heard whispering from the people behind me, Donna was there, then the music started playing and i was trying to look behind me through the corner of my eye. Donna was still using the wheelchair at that point but on this day she decided to brave it and walk down the aisle. Her granddad, who was giving her away, helped her as much as he could. I could see she was struggling and i just felt helpless unable to help her but i could see the determination in her eyes and i started willing her on under my breath.  She looked absolutely beautiful and the image is burned into my memory.

Our Wedding Vows

She made it and held my hand, Owain said we could sit for the rest of the service which brought relief to both of us!! Donna and I couldn’t stop smiling at each other while Owain was reading. We had both written our own wedding vows which begun with me reading mine…nervous much!! Donnas vows were so moving that she couldnt finish reading them through tears and Owain stepped in to read them for her. The final hymn we had to sing was “Morning has broken” …Oh Owain, what had you done! Anyone who knows me knows that im a sucker for innuendo and Donna was only too aware of this. The chorus includes the words “the purple headed mountain”…the purple headed what??? i could see the verse looming in the songsheet and i kept thinking “hold it together boy!” When we got to the chorus i could hold it no more, i had to bite my lip togther to stop myself from bursting out laughing, Donna spotted straight away what i was finding funny and started doing the same thing. One or two choruses would have been fine but im sure we had to sing it like seven times…was Owain having a laugh? Donna uttered under her breath..”I’m gonna kill you when we get out of here!” ha ha!!

The rest of the wedding went without a problem and the guests wooped and cheered when we kissed. You can see from the photos how happy we looked walking back down the aisle and Owain pointed out after the wedding that as we were walking out of the church the sun started beaming through the windows. We were finally married and thanks to Owain and everyone who helped Donna had got her dream.

Married life was great, if we were in love before, we certainly were now! Even the wheelchair and hospital trips didn’t put a dampner on it.

I woke up one morning to a strange sound. Not really a sound, more a feeling of air pressure or a dull thud on the bed. I thought i was just hearing things as donna was laying right next to me. Then i remember thinking, why is she lay on me with her back to me? I jumped up and looked at her, eyes wide open she was gasping for breath. I raced around the bed and grabbed the oxygen and put the mask on her, i ramped the dial all the way up then back down again to normal. She was still struggling for air..i wanted to panic but i knew i couldnt.. i grabbed the phone and dialled for an ambulance. I knew as i spoke to the operator that they werent going to get there in time, i tried to follow her instructions and then noticed Donna turned blue. I needed to do something fast. To this day i have no idea what i did but something happened when i turned Donna on her side. She coughed back into life and asked to be sat up. I sat her up and gave her oxygen. She was dazed confused and had no memory of what had just happened. Minutes later the Paramedics got there and shortly after she was taken to Worcester Hospital. They had no idea what caused this but guessed it could have been a drop in blood pressure. This was the first of four of these attacks, three of them alone with me and one in the hospital.

Donnas health though took another nosedive and the hospital finally sat us down and told us that the only option would be transplant. Before they could that though Donna would need another transplant assessment and they had decided to do a ten week course of radiotherapthy to destroy Donnas lymphatic system to get rid of the anti-bodies. Scary times ahead.

Donna started her radiotheraphy which left her very tired for days afterwards. Good news did come though when the transplant team told us that they were going to list her on the transplant list but, they explained, it wasn’t going to be easy to find a donor heart and there was a chance she wouldn’t make the operation. We had to try. Donna completed her radiotheraphy and shortly after we were given the news that it had worked. Now all we needed to do was sit back, enjoy family life and wait for the phonecall.

In May Donna got a chest infection. Doctors gave her antibiotics and a week or so after it had cleared up.

In June the infection came back, once again anti-biotics. It got so bad that id had enough. We called a medic who visited the house. She told us to go to the Doctor who listened to her lungs and told us to go to Worcester immediately. Donna had Double Pneumonia and it needed immediate attention. They explained that she would be in hospital for a about 5 weeks and Donna was gutted because she would be in for her birthday. Shortly before this had happened we had been granted a mobility car which meant i could visit Donna everyday. I was tired and scared, i was getting up in the morning, getting Leonie ready for school and taking her, going to work then going up the hospital to see Donna (Leonie was spending the evening with Donnas friend until i got back) everyday. It would have been so easy for me to complain but i felt that was nothing compared to what Donna was going through.

 

Take A Break July 2010

On July 1st i went to see Donna as normal, this time with Leonie. We had our tea together in the restaurant and Donna did leonies hair. When i got home i continued to text Donna as normal and we joked around about what we were going to do when she got home. Donna had been making progress and was starting to get better. I sent Donna a goodnight text as i had to get Leonie up for school and we both said Love you and i went to bed at about half 11. At 3am i was woken to my phone ringing. It was the phone call no one ever wants to receive, Donna had passed away. I could feel the world crashing down around me. Its a feeling i cant describe.

July 14th was Donnas birthday and a pub full of friends and family let off balloons for her. It was also the day i launched Donnas Dream. Donna had started campaigning for a change in the current opt in organ donor register to that of an opt out. She felt so strongly about it that she had created a group on Facebook and had started speaking to people in the know about it. I couldn’t just let her dream become a distant memory there are still people like Donna who are waiting for a transplant. Donnas Dream is born and i intend to make it a reality.

Its nearly 18 months now since i lost my wife, my bestfriend, my soulmate and I’m more determined than ever to make her dream a reality. Just wait and see what 2012 brings.

I love you always my wifey, my muse.

Az xxx

Donnas Poem

I found this poem on Donnas laptop not long after she passed away, written for me and dated a week before she died…

If I could have just one wish,

I would wish to wake up everyday

to the sound of your breath on my neck,

the warmth of your lips on my cheek,

the touch of your fingers on my skin,

and the feel of your heart beating with mine…

Knowing that I could never find that feeling

with anyone other than you.

I don’t think you will

ever fully understand

how you’ve touched my life

and made me who I am.

I don’t think you could ever know

just how truly special you are

that even on the darkest nights

you are my brightest star.

I don’t think you will ever fully comprehend

how you’ve made my dreams come true

or how you’ve opened my heart

to love and the wonders it can do.

You’ve allowed me to experience

something very hard to find

unconditional love that exists

in my body, soul, and mind.

I don’t think you could ever feel

all the love I have to give

and I’m sure you’ll never realize

you’ve been my will to live.

You are an amazing person

and without you I don’t know where I’d be.

Having you in my life

completes and fulfills every part of me.

Donna Mansell, June 2010

Donna’s Montage.

Donna created this montage to tell the story of her life up until 2010 including the loss of her brother.

You can now read Donna’s Journal by Clicking here

If you have been inspired by this story please consider joining the NHS Organ Donor Register by clicking the banner below:

On July 14th 2010 I set Donna’s Dream up as a campaign for more organ donors in memory of my wife Donna who sadly past away 12 days earlier waiting for her third heart transplant. The campaign included a petition for an opt out organ donor register which generated a lot of signatures and a lot of press.

18 months on and the opt out campaign is heading to deadline in Wales and they are now campaigning in Scotland. Richard Branson has also vented his interest in opt out within the UK which leads me to believe that he may start his own campaign soon.

Whilst all this was going on something else was happening. Donnas Dream was becoming a vibrant community of like-minded people who had all been through similar experiences. We now have a group of regular contributors who are always willing to help and get involved.

This got me to thinking. Donna’s Dream is much bigger than a campaign that may or may not succeed. If Branson has his way and starts a campaign it will dwarf ours anyway. We can use our time more productively and make a difference in other ways. And that we will!

So without further ado I am happy to announce that this year Donna’s Dream will change from a campaign to a charity.

It’s not an easy thing to achieve.. firstly I have to setup a board of trustees with a constitution of what our goals are as a charity. We have to be clear about where money raised is being used and we have to register with the charity commission. On the plus side it means that we can raise money to perform our charitable endeavours, we will receive an official charity number and will be able to receive gift aid and raise money through justgiving.

What will be our charitable endeavours you ask? I have some great ideas as to how we can use money raised to benefit those affected by organ donation and transplantation…but now we have a team so many more ideas will start flowing too. And don’t forget our primary purpose is to raise the profile of Organ Donation and get more people signed up to the Organ Donor Register!

Keep your eyes peeled over the next few weeks for more announcements and who will be joining us on the team!

Much Love
Az x

If you have been inspired by this story please consider joining the NHS Organ Donor Register by clicking the banner below:

• Donna's Dream is setting its sights on Charity Status!
  On July 14th 2010 I set Donna's Dream up as a campaign for more organ donors in memory of my wife Donna who sadly past away 12 days earlier waiting for her third heart transplant. The campaign included a petition for an opt out organ donor register which generated a lot of signatures and a lot of press.
• Why we need to educate people about Organ Donation | Az's Blog
  Yesterday I got talking to an old boy in a pub (he's 91!) and we chatted about several things but one thing he said got my back up a little. He asked about my wife (after seeing my wedding ring) and I told him about Donna and that she had died waiting for a transplant. I explained that she had already received two and was waiting for her third.
• Christy Millar - Six years and still on Dialysis
  My name is Christy Millar and I am a 26 year old dialysis patient. I have been on dialysis for nearly six years, as a result of a burst appendix in 2006 which caused multiple organ failure due to septacaemia and peritonitis
• Last chance to grab some signed christmas gifts for the Bristol Childrens Hospital
  Hi Guys! You really havent got long if you want bid for some awesome signed Christmas gifts in the CHD-UK Charity Auction. All proceeds go the the Wallace & Gromit Grand Appeal who help to provide comforts and facilities for patients and their ...
• Dont forget to tune into Love on the Transplant List - Monday 9pm BBC 3
  Dont forget to tune into Love on the Transplant List Featuring Kirstie Tancock - Monday 9pm BBC 3 Just had this email: Hi donna's dream team, Just a quick one to let you know about our new film 'Love on the Transplant List' on Monday at 9 on ...
• Lets help Ben fulfill his Bucket List
  A while ago i posted an amazing self-penned story by Ben Hughes (link at the end of the post) who had received a Heart and Lung transplant at the QE Birmingham and had also recently married the love of his life Ayla. Sadly Ben received the news th...
• Why the new Donna's Dream Facebook page? All is explained!
  Your probably wondering why i decided to close down the old Donna's Dream Facebook page (with 3500+ fans) and start from fresh and open a completely brand new Facebook page.
• How this tiny ZebraFish could save your life
  To anyone not in the know this tiny "Danio Rerio" or Zebrafish just looks like any other tropical freshwater fish. This fish, however, holds an Amazing Secret. It can regenerate its own Heart! HE'S NOT JUST A FISH, HE'S HOPE
• Donna's Dream Organ Donation Awareness Clothing
  Great news! Donna’s Dream can now offer our awesome T-Shirts and Hoodies to raise awareness for Organ Donation through the website! You can choose from white or black designs and T-Shirts or fitted ladies tops as well as zipped or unzipped hoodies...
• You can now join the Organ Donor register while applying for a Boots card!
  Thanks to Salma and Gemma on Facebook for pointing this little nugget out. You can now sign up to the Organ Donor register whilst signing up for a Boots Advantage Card! I do hope more company's offer this option as the more chances people have to�...

He went on to lecture me about how our lives are mapped out from the day we are born and shouldn’t be messed with.

Unfortunately he is not alone in this as Kirstie Tancock has been finding out whilst doing her awareness stalls (The link to her post is at the bottom of this page). She blogged this week that she has met opposition from some people who feel organ donation is not right…

She said:

“I had thought most people wanted to donate but just didn’t get round to doing it.

But actually some people just don’t like it, others don’t agree with the principle, and indeed some people said they didn’t agree with transplant at all.

This thoroughly upset me in many ways. Does this mean they don’t agree with me being alive today? Do I bend all the ethics and rules? How can people disagree with something that saves lives and improves the quality of people’s lives? Is the idea of organ donation that horrific to some people?”

Kirstie also discovered some things I have come up against a few times. Religion being one. Often people feel that certain religions don’t believe in organ donation when in fact ALL the major religions are for it!
Another one is “they won’t be able to use anything from me” or “my organs are all wasted”…nonsense, let the professionals decide!

Many say they just haven’t gotten around to it and a lot of people simply don’t like to think about their death.

It seems there are a lot of common misconceptions surrounding organ donation and I think its high time we did something about it. We need to come up with a way to mass educate people about it and get them signed up to the register. I for one absolutely loved the Vinnie Jones CPR video for the British Heart Foundation. Not only was it funny as hell but it was simple, informative and hard to forget! This is the road we need to go down I think as the hard hitting organ donation adverts are a little too hard hitting, even for me sometimes.

Im open to ideas on how we can educate people in the comments below or you can contact me HERE.

On a lighter note for those who dont know, we have decided to move Donna’s Dream forward and start preperations to become a fully fledged registered charity. We now have a dedicated team and will be having our first meeting very soon. From that we will decide on a committee, what role we will play as a charity and, of course, fundraising ideas! All are welcome to share ideas and thoughts .

In the mean time please keep sharing our Facebook page around http://facebook.com/DonnasDreamCampaign and why not join us on Twitter http://twitter.com/DonnasDream

As promised, heres the link to Kirsties Blog:
KIRSTIE TANCOCK: We must face death to save precious life

Kirstie is also an Advocate for Live Life then Give Life who are a very vibrant and well established Organ Donation Charity.

Love, Love

Az x

If you have been inspired by this story please consider joining the NHS Organ Donor Register by clicking the banner below:

Where to start… 29^th June 1988 sounds like a good place.

On the 29^th June 1988 at The Countess of Chester Hospital,  a new bundle of joy was born to Janis and Michael Harrison. Unfortunately before the parents had chance to meet their new baby girl, nurses whisked her way. It was a nerve wracking time for the couple as they were told doctors had been called and tests were being conducted on their baby girl, whom they came to name Leah.

Eventually senior doctors  summoned the couple into a room and proceeded to shatter  their dreams. The test results had shown Leah to have a left ventricle diverticulum. A rare condition affecting the heart muscle, causing it to sag and create an excess pouch causing the heart not to function properly. This tiny helpless baby only a few hours old was given just two months to live.

Fast forward 16 years later and Leah is no longer the same weak and fragile little girl. She amazed doctors by “defeating all odds” and living an active childhood. Throughout her childhood, Leah showed determination and a fighting spirit as she joined in with the other children, running, and climbing, doing all the things the other more healthy children were able to do. Nothing deterred her. At  16 years of age Leah even went abroad with her friend. It was on this holiday that she met Michael.

Michael was 10 months older than Leah. It was his first holiday abroad with his mates. He was tall dark and handsome. The couple first began talking in a bar in Salou, Spain named Charlie Chaplins. Michael was one of a kind, he was charming, caring and courteous. He made a woman feel like a princess.  From the moment Leah returned from her holiday, she knew she had to be with him. Michaels’ feelings were mutual and the couple became inseparable. Leah lived in Chester and Michael lived in South Wales but distance was no obstacle for the couple as they travelled to/ from each others’ home towns. One day Michael noticed Leah taking her medication and asked what the medicines were for. Put on the spot Leah informed him of her heart condition and from that moment on Michael became what she described as “her guardian angel”

Our first summer together

Fast forward three months after the holiday. The couple had returned to normality, Leah attended her hairdressing course at Halton college in Runcorn, Cheshire. Michael had finished and celebrated completing his A-levels in South Wales. He had taken a gap year starting a three year vehicle technician apprenticeship with Ferrari. The couple had been travelling back and forth for three months solid and decided they needed to be together. Michael moved to Runcorn to live with Leah. Work was scarce and Michael became homesick but he didn’t want to leave Leah’s side. Eventually the time came for Michael to return to South Wales to live. This time Leah joined him. The couple began living with Michaels parents before finding a place of their own in Cardiff, South Wales.

The relationship grew stronger and on Christmas Eve 2005 Michael proposed to Leah asking her to do him the honour of becoming is wife. Without hesitation Leah proudly agreed. Before long a date was set for 11^th July 2009 and preparations were underway for what Leah describes as one of the best days of her life. As time passed by Leah’s health deteriorated and in May 2009 she was given the news that a heart transplant was imminent. Leah’s heart was now deteriorated faster than her body could cope with. Medication was increased in an attempt to slow down the process of heart failure this resulted in many visits to the University of Wales hospital. The wedding day came and went and it was a truly memorable and magical day for everyone concerned.

However soon after the couple returned from their honeymoon Leah’s heart condition deteriorated yet further and she now found it impossible to get around. Wheelchair and housebound, Michael cared for her whilst still undertaking his apprenticeship programme. Michael would even travel home during his lunch to check on her and make her lunch.  On one of Leah’s visits to the University of Wales hospital she was informed she needed a pacemaker and defibrillator fitted as her heart could stop at any time. The idea was that should this happen, the defibrillator would kick start her heart giving the paramedics and resuscitation team a chance to get to her. A referral was then made to the Queen Elizabeth Hospital in Birmingham where she was assessed for cardiac transplantation.  Meetings between top heart consultants were conducted and it was decided that Leah was an ideal candidate for transplantation and on 26^th August 2010 Leah signed the consent forms giving surgeons permission to look for a donor heart.

It was whilst waiting for the pacemaker and defibrillator to be fitted that Leah and Michael recieved  a telephone call stating a donor heart had been located. The couple were asked to travel to Birmingham for the operation to go ahead. Unfortunately despite travelling to Birmingham the donor heart was deemed unsuitable. Three days later Leah was scheduled to go into the University of Wales Hospital where a pacemaker and defibrillator would be fitted. An operation that should have taken 3 -3.5 hours to perform, took  surgeons 5 hours as problems occurred due to the size of the heart and adjoining veins. Within 2 hours of Leah returning from surgery a second phone call was received notifying hospital staff a donor heart had been located and arrangements needed to be made to take Leah to Birmingham as soon as possible. Leah travelled the 2 hour journey to the Queen Elizabeth Hospital in an ambulance and again preparations were fast underway for her to receive the donor heart should it be deemed suitable. Unfortunately this heart was unsuitable so Leah was transferred back to South Wales.

Our heroes return party

Prior to Leah’s health deteriorating she had been looking forward to greeting her brother Mark on his return from Afghanistan. There was to be a ‘Family of our Heroes Return Party held in Ripon, North Yorkshire. Leah had bought herself a new dress for the occasion and had been excited at the thought of being there to see her brothers’ safe return. After much consideration and in view of the previous two donor hearts being unsuitable Leah and Michael made the journey to Ripon stopping along the way so that Leah could rest. Once at the army barracks Leah and Michael were joined by Leah’s mum, step dad and younger brother. Celebrations were underway and although Leah could not drink, dance and be merry she enjoyed the experience as if it were her last. Michael joined in the celebrations and had a few beers with his new family. Something he enjoyed doing as he had not drunk any alcohol for some time in case a phone call came from Birmingham.

The night went well and at 11pm Leah and Michael retired to their beds, as the travel and celebration had taken its toll on Leah. No sooner had they got into their bed, they received a phone call on Leah’s mobile informing them a donor heart had been found. Panic stricken the couple notified other family members. Michael struggled with the fact that he could not drive therefore could not get his wife to the hospital. Being surrounded by heroes helped that day as they lived up to their name. Leah’s brother Mark notified his sergeant of the predicament and arrangements were put in place for a driver and a car to transport Leah, Michael and Leah’s family to Birmingham. Michael’s family were also notified and made their way up from South Wales to support them.

Once at the Queen Elizabeth Hospital, Birmingham Leah was immediately taken to the pre-assessment area to be prepped and await confirmation that the heart would be suitable or unsuitable. Waiting throughout the night was torture and at 6am on the 1^st October Leah was given the news that the heart was a good match and the operation would go ahead.

At 8am it was time to say goodbye to everyone. Leah cannot begin to describe the feeling that overwhelmed her, having to look into each of her loved ones eyes as if it was the last time. The image of them standing there watching as they wheeled her down to the theatre for open heart surgery. Leah always knew the day would come but at the tender age of just 22 years she was about to undergo her biggest challenge yet.

This is my story. My name is Leah… and I have one question to ask you. “What would it feel like if you were faced with losing a loved one, when they could be saved?”. Donors are hard to come by and may be the hardest thing you’ll ever commit to. If you don’t take the time to tell anyone how will they know?The operation was a success and recovery was quick just a mere 14 days and discharged from hospital on day 15.  After care consisted of weekly visits to Birmingham so Michael and Leah had to consider moving back to the area in which she was brought up as it was closer to the hospital. Luckily for them this was all taken care of by family members on both sides who dedicated time and money in helping them relocate, allowing Leah the opportunity to live closer to her mum.  Family members from both sides helped transport all of their furniture to their new property as well as paint and decorate it. When Leah was discharged from hospital Michael and leah were surprised to find that all of the stress had been taken from their shoulders and all they had to do was move in and enjoy their new home.

I have asked to know the identity of the family who lost a loved one that day and I understand that this is not possible, but whoever you are, wherever you are I would like to convey my deepest and most meaningful heartfelt condolences and thank each one of you for your generosity at what must have been such a hard decision to make and see through. I will always be indebted to you.

All my love Leah x

If you have been inspired by this story please consider joining the NHS Organ Donor Register by clicking the banner below:

Courtney love always starts her magazine interviews with the statement ‘I shouldn’t be here’. I’d like to take that statement and say “I REALLY shouldn’t be here.”

On the 28^th September 1984 on a Friday at 9 0’clock in the morning I was born. The doctor had told my mother “She’s not like other, healthier children; you’re going to have to keep an eye on her when she is growing up.” Now I think of it I just think that’s an understatement! So my parents took me home to my older sister and three became four as it were.

Me aged 3

It wasn’t easy for my mom, my parents being 2^nd generation immigrants from Pakistan. My dad had been in the country since the age of 15 but my mom had come over at the tender age of 21 to marry my dad. She had never seen a television or a landline telephone as she lived in a village far from the city life that we here in England are used to seeing on TV.

By 1986 my mom had my brother so we became a 5 piece as it were. We moved into our new home which was a two bedroom house in a predominantly Asian area (there is a reason why I’ve put this and you will see later!)  By now I was not developing like other children I was two when my brother was born, so I should have been able to communicate by talking to people but this was not instead I was quite and would make inaudible noises. So my aunt (moms sister) knew of a therapist close by who specialised in child speech therapy. I vaguely remember the sessions but at the last time I saw him he gave me a farmyard animal set and a box of smarties, which I was pretty chuffed with as mom rarely had money to buy us sweets and toys.

Me aged 6ish I think?!

By the age of 6 I was able to say my first sentence say that someone is at the door in Punjabi, which to this day I’m chuffed with!

By the age of 8 we had no choice but to move, the house was getting too cramped and my mom was expecting another baby that being my little sister. I really did not think anything at the time just that my parents knew best but I knew that I would be leaving and missing a lot of my friends behind. But I thought I’d make new ones and it would be a sense of adventure boy was I wrong! The house was lovely and the neighbours seemed friendly enough but this was the start of the 90’s where the national front were quite popular and had made a name for themselves especially in the area we had moved too. Finding this out, we kept our heads down, noses clean. It almost reads like the Jews in Nazi Germany doesn’t it? Well that’s what it was like. The moment that I actually realised I was different was when me my sister and my brother were playing in out front garden, a very thick white man (no offense to ant Caucasian reading this) asked us “why are you in this country?” my sister answered “because my parents lived here before we were born”. Which I thought for a nine year old was quite a clever answer. This memory will always stick with me because I think it changed me not Asian and it hurts to say but I never (not even today) like my skin to go too brown in case of racial abuse was to occur.

If you have been inspired by this story please consider joining the NHS Organ Donor Register by clicking the banner below:

Christy sent me her story earlier on this week and it goes to show how long some people have to wait until they get a transplant. I do hope Christy’s call comes soon… Az x

My name is Christy Millar and I am a 26 year old dialysis patient. I have been on dialysis for nearly six years, as a result of a burst appendix in 2006 which caused multiple organ failure due to septacaemia and peritonitis (ie. blood poisoning). I had just finished my first degree literally the week before. I was hospitalised initially for six months where I spent much of that in a coma in intensive care.

When I woke up I had to learn to walk again and cope with the fact that my kidneys were unlikely to ever recover. I had a stoma bag and two tracheostomies. I have had approximately 40 operations and have a miriad of scars. Dialysis at first went very quickly as I was so ill, but as the rest of me recovered I learned about how dialysis could affect the rest of my life. I had my stoma reversed in 2007 and contracted MRSA. This plus a chest infection caused my heart to fail and my original dialysis access to fail also.Dialysis puts a strain on the heart and I have suffered heart failure only the once (luckily)  but am lucky in that I have fully recovered. High levels of Potassium are dangerous for the heart as the nurses are constantly telling me.

Currently I dialyse on HD (Haemodialysis) for four hours, three times a week, at my local hospital. This involves sticking two rather large needles in my right arm, into a graft I had to have put in (as my veins are poor, most people have supervessles constructed out of their own veins). This graft is like a fine mesh that the needles go through. This hurts alot and I have numbing cream on for an hour before. It also leaves rather unsightly scars that make me look like a drug user (or so I think!).The main constraint on my life is fluid intake. As I have zero kidney function (some people retain some function), I am limited to a pint of fluid a day. As I have no kidneys this goes straight into my blood stream. I am also limited on the food I may eat. Foods high in Potassium (e.g. Crisps, chocolate, potatoes) and high is Phosphate (e.g. milk, chese, chocolate) are only permitted in small quantities. I have always had lots of trouble with my Potassium and Phosphate levels and have to take tablets to control the latter.
In 2008 I returned to University to do my Masters whilst on dialysis. This was honestly the hardest thing I have ever done.In Oct 2009 I had my husbands (fiancee at the time) kidney as miraculously he was a match. Unfortunately , the kidney lasted only 30 seconds and failed due to a damaged artery in me that stopped blood flow. This was devastating to both of us. In August 2010 we got married with lots of mention of Stevens wonderful act in the speeches! I have been back on the tranplant list since September 2010 (after our honeymoon) and luckily dialysis is the only thing I have to deal with now. Waiting is just very frustrating! Every time the phone rings after 8pm I get my hopes up.

Dialysis three times week is a necessity to keep me alive, and I am glad it exists. But it is tedious, painful at times and exhausting. I read my Kindle on dialysis to pass the time.. The only positive things are the staff and patients you meet.

If you have been inspired by this story please consider joining the NHS Organ Donor Register by clicking the banner below:

You really havent got long if you want bid for some awesome signed Christmas gifts in the CHD-UK Charity Auction.

All proceeds go the the Wallace & Gromit Grand Appeal who help to provide comforts and facilities for patients and their families whilst in Bristol Childrens hospital.

Here are the Details:

Online Auction via Ebay in aid of Wallace & Gromit’s Grand Appeal (Charity Registration No. 1043603)

to buy a Multi-Function Patient Monitor for Bristol Children’s Hospital.

From: Sunday, 27th November at 6pm (GMT) -  Saturday, 3rd December 2011 between 4 pm – 6 pm

What is a Multi-Function Patient Monitor?

A multi-function patient monitor is able to monitor heart and respiratory rate, blood pressure and oxygen saturation levels.

There is currently ONE multi-function patient monitor per FOUR patients; we aim to reduce to this with your help.

One multi-function patient monitor costs £5,000.00.

There are a total of 17 items including:

• Australian Rugby Shirt – handsigned
• Handsigned Rugby Ball by Australia
• Tickets to a Saracens Rugby Club Match at Wembley
• Handsigned: The Vampire Diaries Mini Poster for Series
• Warriors British Fighting Forces. Handsigned by Ross Kemp
• Bolton Wanderers Football – Handsigned
• Purple rondels and beads necklace with matching earring
• Sunset by Nicola Feltham Photography
• John Snow Tie and signed Photograph
• SWIM: A Memoir – Handsigned – by Bill Coon
• Jon Snow Tie plus signed photograph
• The Autobiography ‘Lion Man’ – Handsigned by Ian McGee…
• Garden Nature by Nicola Feltham Photography
• Wooden Heart
• Necklace with matching Earrings
• Scented Candles in a red glass packaged in a blue round supplied by Donna’s Dream!
• Family or Friends Photoshoot

The following items are listed on Ebay for the online auction.  If you would like to bid for one or several of the items, you can do so by clicking the links below:

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If you have been inspired by this story please consider joining the NHS Organ Donor Register by clicking the banner below:

This story is one ive been waiting for for a while now!

I had the pleasure of meeting Chris when Donna was still around and only really knew about him what she had told me and what i learned that day. Im so glad he took the time to write and share his story of waiting for a transplant. Enjoy..

Az

I can’t begin to express how many times I’ve put off writing this story, it has been a long time coming and I guess my main excuse, and you could say fear, is that I feel my story isn’t quite finished yet, but then again when is anyone’s? Given the amount of attention Organ Donation has been given in recent weeks I think it’s probably time for me to knuckle down and write it, it’s also the least I can do for the amazing people who represent Donna’s Dream. I do actually like to do my own bit of writing but it’s of the fictional variety, so you must understand this is all pretty new to me, but I thank you very much for taking the time to read this.

My name is Chris, I am 26, I suffer from a condition called Dilated Cardiomyopathy and I am currently waiting for a heart transplant and have been for the last 3 years. My story though does not begin there, nor is it as simple as that, it really began a long time ago, back when I was 9 years old and when I was first introduced to hospitals and heart problems.

Everything up until the age of 9, everything was, near enough, standard for most families of the 20^th century. I had a mother and father who divorced when I was around the age of 4 and I had two Brothers, Desmond and Daniel, who were both older than me. After the divorce I lived with my dad and led a mostly sheltered life with nothing much to define my early years, that was until my brother Daniel (pictured on the right) was admitted to hospital in 1995 at the age of 19, with shortness of breath and severe swelling of the ankles all caused by an enlargement of the Left Ventricle, AKA Dilated Cardiomyopathy.

The years following my brother’s diagnosis of the condition consisted of regular visits to see him in hospital following frequent re-occurrence of his heart failure. I remember that I spent most of my summer holidays inside hospitals with my brother; it became normality in all honesty. Medications were never really enough to consistently control his condition, but he was never considered ill enough to be placed on the Heart Transplant list. I often wonder how he would have been now, had he ever been placed on the list and what he would be doing with his life?

In February 2001 my brother passed away and effectively that’s where his story ended, I don’t think I will ever really forget the night he died, the feelings and emotions you are subjected to can’t be replicated by anything else in life. It really does feel like the world is turned on its head, I can still remember every move I made that night when I got home, even odd things like staring out of my bedroom at nothing in particular just stick in your head. It’s like your brain is working on another level completely.

The two years that followed were quiet and sombre really, except in 2002 when my niece Brieana was born. I think her arrival really helped my Mum and Dad, as neither of them were quite the same after the death of my brother, no parent ever would be. I didn’t really have a lot of opportunity to see my niece, as around this time I started to become ill.

You never really assume things like this will ever happen to you, In fact when you are a teenager you have this bizarre notion of indestructibility. I signed up to be a donor in late 2002 after my teacher came and told us the good we could possibly do for others. (Incidentally, I really do think that this should be part of the curriculum in schools and colleges, as education is a powerful tool!) I only managed to donate blood once, and the feeling I got from knowing I could be saving someone’s life was, well, pretty damn good! I got home after that and watched the episode of Dad’s Army where they give blood; you could say I was hooked by the whole thing.

Early 2003, was when all of my symptoms began to develop, but at first I never assumed for one moment it was the same condition my brother had, as it was later on that the family discovered it was genetic. I noticed my journeys to college became massively difficult, I could no longer walk and talk at the same time nor could I arrive there without feeling massively tired. In certain lessons my vision began to distort, an almost sensation of light-headedness. My ankles started to swell up after trying certain over-the-counter medicines failed to help with my inability to keep food down. It was after a night spent trying to sleep on a window sill, that I really felt it was time to visit my GP.

Fair play to the man, he knew straight away what my problems were, it was pretty obvious to me too, but I guess like I said before, you never really want to believe it can happen to you too. He wasted no time in getting me straight up to Hereford County Hospital, and there began all of the associated heart failure tests. My mum sat in with me when I had my Echocardiogram (basically an ultrasound for the heart) and she had become very upset by it, I should think that she felt completely helpless at the thought of another one of her children having to go through the same thing. My Dad tried to be relaxed but it was clear he wasn’t, he never really said much but I know he wanted to try and re-assure me.

The night of April 17^th 2003 was the first ever night I had spent in hospital, and it was one of the very few nights before then that I didn’t sleep in my own bed. I remember being half awake and half asleep, just not quite one way or the other. The next day the cardiologist had decided that I should be sent up to Queen Elizabeth hospital in Birmingham as soon as possible. When I arrived there it was basically the same procedure as in Hereford but I could never realise that it was here I would have my very own brush with death.

After a month of receiving treatment at the QE my condition had yet to stabilise, in fact I was suffering from Hypokalemia, which is basically a dangerous lack of potassium in the body brought on by being on so many diuretics to help offload my heart. Late morning on the 17^th of May I started experiencing severe pains in my arm and chest so I alerted the nearest nurse and the last thing I remember was the blood pressure cuff being put round my arm. It was at this point I suffered a cardiac arrest.

I never saw a bright tunnel of light nor did I see Angels with harps on clouds, all I remember was the indescribable blackness, it was like being asleep but being quite conscious within that sleep state but not dreaming. It’s quite hard to describe, but it’s not really something I would care to repeat that’s for sure. From out of the blackness I heard the voices of people saying my name, who I can only assume were the doctors and nurses resuscitating me and eventually I remember being fully conscious.

It was very much a week spent balancing on a knife edge, I didn’t realise until months later that my family had been told I had a week left to live unless I had a heart transplant. The possibility of a transplant had only been mentioned briefly a week or so prior to my cardiac arrest, during a meeting with the QE’s transplant co-ordinator Sharon, who appeared to be mortally feared by some nurses, but I found her quite friendly and straight forward. But like I said, it was only mentioned as a possibility at that point but now it seemed it was my final option, and over the next few days of being confined to bed in CCU and on masses of drugs to keep me alive, all of the tests needed to assess me for transplant suitability were performed and I was accepted for placement on the transplant waiting list.

That week in CCU is quite a distant and faded memory and all that is left are memories of all the tests and of course, the first time Sharon came and told me that they had found a heart for me. I can’t actually remember crying very much during my stay in hospital, but I do remember that at that point I did, for the best part of 10 seconds; it was a very strange emotion and one that can only be felt by someone else who has been in the same situation. My Mum, Dad and brother turned up less than an hour later and from that point we continued to wait for the final confirmation from Sharon, which felt like an unending eternity from my point of view. Sharon eventually arrived at my bedside but I could tell straight away from her expression that the heart wasn’t going to be mine, it just wasn’t viable. I can’t really remember how I felt but I do remember that I was allowed a cup of tea which I later threw back up again.

Days went by and those days turned into weeks, I had managed to fight through it all and start up a slow road to recovery. I was finally moved from CCU and was allowed back on the ward and given my slightly more stable condition, I was allowed to be transferred back to Hereford county hospital which, you could say, was a step closer to home. I remained on the transplant list in Hereford whilst being closely monitored via the telemetry system in the hospital, just in case I was to suffer another arrest.

I had learnt during my stay in hospital that this family heart condition went far deeper than my brother Daniel and me, I had actually lost two cousins to sudden deaths from suspected heart conditions and my second cousin had had a heart transplant in the QE. My diagnosis of Cardiomyopathy led to genetic testing throughout my mother’s side of the family, but to this day the gene responsible has yet to be found but it is pretty certain this is all familial.

By late June I had received a further two calls for a heart transplant, and had been rushed back to the QE on both occasions, but neither had led to a transplant. The closest I came was when I was wheeled down to the theatre and various tubes and wires had been inserted all over my body, you could say I was within a hair’s breadth of being transplanted and to this day, that is the closest I ever came. I often think about the ‘what ifs?’, and how things could have been so much different today, but it was clear it just wasn’t meant to be.

On July 4^th, Ironic given it was Independence Day for the American readers; I had recovered enough to be allowed to go home. Institutionalised just isn’t the word to describe how I felt after being in hospital for 3 months, it took a fair while for me to get used to being back home. I had changed in ways I just can’t describe; it was like I had gone through a mental regeneration as was as a physical degeneration, my need for independence had increased dramatically and I was no longer that inexperienced young lad who had never even cooked for himself. Things had begun to change in lots of ways.

I remained relatively stable over the course of the year, with several re-admissions to Hereford Hospital with fluid retention, each time roughly lasting 2 weeks. By late 2004 I had reached a level of fitness which, although medicated by various heart failure medicines, I hadn’t experienced before and I was happily removed from the transplant list. With this period of fitness, came the slow deterioration of my Dad. In effect I had become his carer now, regularly making trips in to town for shopping and paying bills. A reversal of roles had taken place in the household and thankfully I kept healthy enough to look after him.

In January 2005 my Dad passed away, followed two days later by my Nan who I felt I was particularly close to. Needless to say this was a very dark and depressive time in my life, but fortunately Cardiomyopathy had not decided to rear its ugly head like it had so inconveniently in the past. Times were hard then, and what I had gained with my physical health, I had lost in my emotional health.  Though I had lost so much this year, I had become much closer to my brother Des and his family, and I had even moved back in with my mother, who I hadn’t lived with since I was 6 years old.

Between the years 2005-2008, you could say I lived a near normal life. I had received a Biventricular pacemaker during this time, in an attempt to keep my heart in working order, and to be fair it did help for a while. I managed to keep a job for this period and felt as if things were going ok even though I always had the underlying illness. As 2008 went by, my medications, in particular diuretics, were gradually being increased to cope with a slow and steady re-deterioration of my heart again. By September of that year I found myself being re-assessed for heart transplant and it’s from there I started my current 3 year wait.

I would love to be saying that my wait has been uneventful, that I had managed to scrape my way through with relatively good health and remain stable, but unfortunately things didn’t happen that way for me. In September of 2009 after managing to wait a whole year, I was hospitalised due to my other organs, especially my kidneys, beginning to fail. I was placed in CCU in the Queen Elizabeth hospital, a place I had not been in for nearly 5 years, and given intravenous inotropes to keep my heart beating and allow my kidneys to rest from all of the diuretics.

I have to admit that during this period was probably one of the tensest times of my life, I can only guess the inotropes caused a reaction which made me feel overly stressed all the time but I really did find it massively difficult to settle, rest or even have much of an appetite. I hated the fact I wasn’t well, it was like I lost control again and all my years of hard work had gone to waste.  I had gained quite a few friends over the previous few months via Facebook, who were transplantees, including a certain young lady called Donna, and they all really helped me during this time and I will always be grateful for all of their kind words which helped keep me positive. Unfortunately, no hearts became available during this time, so it was necessary for a mechanical alternative to be considered.

I was given a choice between having an ITU based mechanical assist device called a Berlin heart and continue to wait for a transplant, or there was the alternative of being transferred to Harefield hospital to have the more portable alternative called a Heartmate II. The latter alternative meant I would no longer be classed as urgent and I would be suspended from the transplant list, but there was the possibility that the Heartmate would heal my heart, which could negate the need for a transplant completely. Given my youth, I really did expect that I would be one of the lucky ones who would get their old heart back, so I took the gamble and was transferred there. I am often plagued by yet another ‘what if?’ situation here.

On October 6^th I arrived at Harefield Hospital with my mother and was just in time to catch the surgeon before he went home for the night. The Operation began at around 10:30pm that night and ended at around 4am the day after. I have little or no recollection of events just before or following the operation, in a way I see this as my pseudo-transplant, as I am sure the experience is quite similar.

My first memories after waking were blurred and unusual. I always remember seriously believing that my mum had bought a pizza and was eating it behind the curtain around my bed and not offering me a piece, which is quite unusual seeing as she doesn’t like pizza. Apparently my language after having the intubation tube removed from my throat was pretty foul and course. I also remember having a conversation about Filipino tribesmen in the late 19^th century with a nurse who was looking after me in ITU. To this day I haven’t a clue if that was real.

As the drugs began to wear off, I found myself staring down and seeing the new addition to my anatomy, the Left Ventricular Assist Device known as the Heartmate II. It basically acts as a pump that takes the blood from the damaged part of my heart and pumps it back into my Aorta thus completing the cycle that my damaged heart is unable to do. When the doctors were happy with my recovery I was moved onto the main ward and introduced to the functions of the device, as well as undertaking cardiac rehabilitation.

Due to the fact I had gained a slight chest infection during my operation, my hospital stay lasted until November, when they were finally satisfied that my infection was clear, I was finally allowed to go home. During this period I was encouraged by the VAD team to partake in as much exercise as I could and to eat healthily, I had actually lost a massive amount of weight during the last couple of months so it was quite fortunate my appetite came back. This was all to promote the possible healing of my heart, but unfortunately this too was not to be. After a couple of months it was clear to the Cardiologists that my heart wasn’t showing sufficient amounts of healing, my heart had been subjected to many years of both minor and major heart failure and it just wasn’t strong enough to regain its own function. There were however, various signs that my heart began some sort of recovery as this was the case with most VAD patients.

After being subjected to the heart transplant reassessment which I had taken so many times during my adult life, the decision was made to re-list me for transplant. Two years after having the VAD implanted, my heart continues to show some minor signs of recovery, though nothing that could mean the actual removal of the VAD. Whether or not some medical breakthrough in the near future with stem cells or another alternative medicine takes place, it’s quite clear that my only current option remains a heart transplant. I really do try and remain positive about my outlook, and I have formed many special bonds with people around me who keep my mind away from all the negative thoughts that creep in after 3 years of waiting. I have no real Idea what tomorrow will bring for me, but I am fully aware of the massive shortage of donor organs, especially hearts, and I am realistic about my prospects. I am just massively thankful that there are those out there, like Donna’s Dream, who continue to fight the corner of those like me who continue to wait in hope of a better life.

Good luck and best wishes to all who have read my story.

Chris

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Just had this email:

Hi donna’s dream team,

Just a quick one to let you know about our new film ‘Love on the Transplant List’ on Monday at 9 on BBC 3 (we also made Heart Hospital on ITV1)

It’s had some really good reviews – 5/5 TimeOut and Cosmo said ‘it’s an absolute must-see’

Here’s a link to a BBC piece about it – please spread the word:

http://www.bbc.co.uk/news/health-15794278

If you have been inspired by this story please consider joining the NHS Organ Donor Register by clicking the banner below: