Four years in and I get it. I get when all the childlike excitement stops of ‘I’m alive’ and the realisation that “oh I’m alive and well sometimes not so well’’ because when you’re not well u can really feel it. I’m not dismissing the ‘choice’ me and my family had to make 4 years ago, what I’m saying is it can never get better from here you’ve signed on the dotted line and you just have to grin and bear it. And so this is what I learnt from our soldier ben who lost his battle from chronic rejection in April. It was still a shock to know that ben had gone even though we all knew, and to be honest I still don’t know what to make of it. Every time I put an oasis song on my page its odd not having ben like it. These little things become very big things but what ben has left and what I’ve learnt from him is invaluable. I used to write and say how I was proud to be a tranny but I’m more proud of the people that I’ve met through this whole tranny train!

These life lessons I feel will continue but also the realisation that I may not be here to do my advocacy work has shown me one thing that I never wanted to do TRUST PEOPLE outside the tranny circle (organ donors, families of organ donors, campaigner’s and carers count in this circle too J) why? You ask, well, this will also be told in my future blogs so I’m not giving too much away! Anyway, I hope these people will be a part of my journey through the abyss that its transplantation/ organ donation. The progress of the ScArBOoK however  has become (aggressively should I say) slow. I’ve got so many ideas in my head of how I want this section of DD’s to be but it means so much to me that the only way I can achieve any of these developments is to trust people outside of the circle and that’s proving to be very difficult but am slowly getting there. Have a lot of brainstorming and exchange of ideas that I want to be observed and turned upside down and rethought about so i can get it just right, but I’m slowly learning that I can’t do this alone. But its timing being ill, home, university and well  LIFE

So just hold on in there people cos I am….

Melanie’s dad, Neil, received a heart transplant at the Queen Elizabeth Hospital, Birmingham in 1998 after suffering two heart attacks which highlighted a hereditary heart condition that, up until then, he was unaware of. Unfortunately Neil was taken ill again in 2007 and sadly past away.

Melanie wants to run the half marathon to say thankyou to the amazing team at the QE who gave her an extra 8 years to spend with her father and who were a big part of their life for that time.

Originally Melanie started with a target of £250 but within a week had to increase her target to £500 due to the amount of people sponsoring her. As I type her current amount raised on the just-giving page she has setup is £328 and rising which is an amazing achievement seeings as the run isn’t until October!

Melanie praises the skilled staff and the kindness of the Organ Donor and goes on to say:

The team were a big part of our life up until Dad was taken ill again in 2007. The second time, we weren’t so lucky, but I take great comfort in knowing that I had him for an extra eight years. He got to see me grow up, and I got to have my Dad tease, embarrass and wind me up throughout my teens (as every girl should!)

So in memory of Dad and to help me say thankyou to a life changing team of people, please dig deep, donate to a great cause to enable them to continue saving lives and don’t forget to sign the organ donor register.

You can visit Melanies Justgiving page to make a donation by clicking here: http://www.justgiving.com/MelCoton

• Sat, 19 May 2012 15:02:02 +0000: So far this page has raised £378.00 - Melanie Coton - fundraising on JustGiving
  
  
  This page is currently live and will accept donations until 04-11-2016
  • Fundraising Page Target : £500.00
  • Total donations to date : £378.00
  • Online donations to date : £378.00
  • Mobile donations to date : £0.00
  • Amount raised offline : £0.00
  The UK Gift Aid scheme

  Justgiving will be able to reclaim and add £89.50 to these online donations thanks to the UK Revenue Service's Gift Aid scheme.
  All donations are paid immediately to Queen Elizabeth Hospital Birmingham Charity.

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

I never wanted to do Childcare as a youngster, I wanted to be a singer (like all other little girls), then I wanted to be a vet because I always thought I had a way with animals, but after I had turned about 15 I realised that my possibilty of having Kids were slim. Honestly, I didnt really feel much attachment towards my younger family, nieces and nephews, dont get me wrong, I loved them all to absolute pieces, I just always wanted to do other things like run about outside and climb scaffolding at the building site around my estate. But as I grew older I knew deep down inside that I would always want my own baby some one to love me just as much as I love them, some one who wouldnt judge me for who I am or what I have been through. At the age of 3 and a half I was told by the doctors that I cant have children due to my heart condition, then after my second operation I was told that there was a possibilty but it would have to be reconsidered at each hospital appointment every 9 months, then, in July of 2009 I was told that I am able to have my own Children with the extra care of professionals throughout pregnancy, then in March of 2011 I was told that I would even be able to withstand a natural birth so you can only imagine the Joy that was going through me when I am hearing this, something that I never thought I would hear.

Artist of the week during first year of my A-Levels

During my Last year of my A-Levels, when I  was about 17 I realised that I really wanted to have a child, at the time it wasnt a possibility so instead I wanted to something that I thought would kind of, fulfill my want for a child, and obviously, Childcare came to mind. So I finished my A-Levels, and went to College and studied NVQ Level 3 in Childcare, I loved every minute of it, I did placement in a Childrens Nursey working with babies from about 4 months old, to the age of 12. I must have done a good Job as i got place in the Nursery at working level when my course finished. I love every minute of my job, yes there are ups and downs with my job, health wise, both physically and mentally, but it is very enjoyable, with the children you need to have a lot of patience otherwise oyu would be pulling your hair out half of the time haha. It’s easy to feel under pressure in any work place, but as most of you know, feeling the pressure is a different matter when you have a heart condition, or any other health problem as u feel it 10 times harder than the average person. Simple tasks such as lifting a child, or pkaying football with the children are quite daunting as running or jumping can leave me breathless and add to the palpitations, whilst lifting to quickly can cause me to go light headed. This is something I will need to speak about at my next appointment with my cardiologist but I dont think it’s too worrying considering all my poor body has been through haha.

To look at me I know that you wouldnt think I am ill, and Honestly a lot of the time I dont feel it, but when I am working or messing with my nieces and nephews, (who I love to absolute pieces by the way), or even laughing, I do sometimes feel the difference health wise, with silly things such as breathlessness, palpitations and dizzyness, it all takes its toll, so I need to remember to take my time and enjoy what I have without trying to rush it, good things happen in time, if we had everything handed to us on a plate we wouldnt appreciate them when we try for them.

In july 2012 myself, Leah Biggs, Rhys Llewellyn and friends and family are challenging ourselves to climb Snowdon to raise money for our favourite Charities.

Up until recently Rhys & Leah were fighting for their lives waiting for lifesaving heart transplants and now they want to say thankyou to their donors by taking up this huge challenge! Whats more the 14th July is not only Donna’s birthday but also the 2nd Anniversary of the start of Donna’s Dream!

You can keep upto date with our individual fundraising below and donate by clicking their links:

LEAH’S PAGE

• Sat, 19 May 2012 15:02:03 +0000: So far this page has raised £155.00 - Leah Biggs - fundraising on JustGiving
  
  
  This page is currently live and will accept donations until 22-02-2017
  • Fundraising Page Target : £500.00
  • Total donations to date : £155.00
  • Online donations to date : £75.00
  • Mobile donations to date : £10.00
  • Amount raised offline : £70.00
  The UK Gift Aid scheme

  Justgiving will be able to reclaim and add £17.50 to these online donations thanks to the UK Revenue Service's Gift Aid scheme.
  All donations are paid immediately to British Heart Foundation.

RHYS’S PAGE

• Sat, 19 May 2012 15:02:03 +0000: So far this page has raised £531.52 - Rhys Llewellyn - fundraising on JustGiving
  
  
  This page is currently live and will accept donations until 27-03-2017
  • Fundraising Page Target : £500.00
  • Total donations to date : £531.52
  • Online donations to date : £385.52
  • Mobile donations to date : £51.00
  • Amount raised offline : £95.00
  The UK Gift Aid scheme

  Justgiving will be able to reclaim and add £102.63 to these online donations thanks to the UK Revenue Service's Gift Aid scheme.
  All donations are paid immediately to British Heart Foundation.

AZ’S PAGE

• Sat, 19 May 2012 15:02:03 +0000: So far this page has raised £93.00 - Az Mansell - fundraising on JustGiving
  
  
  This page is currently live and will accept donations until 06-04-2017
  • Fundraising Page Target : £500.00
  • Total donations to date : £93.00
  • Online donations to date : £85.00
  • Mobile donations to date : £8.00
  • Amount raised offline : £0.00
  The UK Gift Aid scheme

  Justgiving will be able to reclaim and add £17.50 to these online donations thanks to the UK Revenue Service's Gift Aid scheme.
  All donations are paid immediately to Queen Elizabeth Hospital Birmingham Charity.

The doctor said that she was tacky cardic, she had a slight heart murmur and that she sounded like she had a heart defect, probably just a hole, but he told us not to worry and to take her to our local hospital in the morning for some tests. I phoned Matt and he came home from work to help me sort out things for the next day, we arranged for Matt’s mum to have Aaron (Jade’s older brother) and gave Jade a nice bath, which she didn’t like. She went bluer in colour and was squeaking like a mouse but we just thought that she didn’t like the bath.

We arrived at Southend Hospital the next day and taken to a side room, where doctors started to do lots of tests on Jade. Over the next few hours Jade’s condition got worse, they couldn’t get a blood pressure reading, found it hard to get bloods and she didn’t want any milk or water. Things were not looking good for Jade. The doctors came in and said that they were going to transfer her to the Royal Brompton Hospital in London but they couldn’t see her until the morning so they made the decision to send Jade to Great Ormond Street instead. The next few hours were a blur, us not really knowing what was going on, Jade getting more and more distressed and the doctors and nurses running all over the place then at last we were on our way.
Jade was blue lighted up to GOSH and arrived just before 6pm where the doctors tried to find out what was wrong. By 8pm we knew, Jade had Hypo Plastic Left Heart Syndrome, a rare heart condition where the left side of the heart doesn’t form properly and if not treated with surgery the child would die. Jade’s life hung in the balance, they said if she survived the night that they would operate on her the day after, the next 36 hours was crucial.
Jade was 8 days old when she went for her first surgery, stage one of the Norwood procedure and after 12 hours in theatre she came back to ITU with her chest open but at least she had made it. Over the next few days the doctors started to reduce some of the medication and things were looking up but then Jade had a setback when they closed her chest. At 18 days old she went back into theatre to have a left BT Shunt done. We were back on the waiting game to see if she would be ok. Again she pulled through and things started to look a lot brighter. After 3 weeks on ITU Jade was moved to the high dependency ward, she still wasn’t feeding properly so she was getting her feeds through an ng tube but soon she started to get stronger and started to put on some weight. Things were finally looking up for Jade.

After 6 weeks at GOSH we finally took Jade home. We knew that she would need further surgery but that wasn’t going to be for a while, so we planned to enjoy ourselves and took Jade to Clacton to meet the family and I started to go back to the mother and toddler group that I went to before all this began. For the next 9 weeks or so everything seemed so normal, apart from the NG feeds, vomiting and lack of sleep, Jade was home and we were a family.
September 23th was the start of Jades next journey, one of survival. Jade’s paediatric nurse came out to check on Jade and noticed that in the last few days she had gained a lot of weight, again I was pleased, where I should of been worried. We went back to our local, where after a scan, it showed that Jades heart had started to go into heart failure. All the weight that Jade had put on was fluid and it was putting too much pressure on her heart. So back to GOSH for the cardiac team to have a look. Our fears were confirmed, Jade had gone into severe heart failure. Over the next 24 hours they tried to get the fluids down, to see if that helped but it didn’t so on the 24th September the doctors came round with the transplant team and said that Jade’s only hope was a transplant. She was 4 months old.

Great Ormond Street was going to be our home, Jade was placed on the active list and the waiting began. In the months to follow Jade had a Hickman line put in, we spent her first Christmas and New Year on the ward, then in January Jade had a respiratory arrest and was put on a vent for a week. She overcome that but still desperately needed a heart. Jade was constantly blue and her sats were, on a good day, up to 75 but mainly they were in the 60’s. By now her other organs were starting to weaken, we had days left. We didn’t want to give up but Jade was now so poorly we didn’t even know if she would survive a transplant.

February 24th 1996, we had just come back from watching the lottery and the Transplant team came and saw us by Jade’s beside, they had the news that we had been hoping for, for the last 5 months, Jade was going to get her new heart. Mixed emotions came over us, joy for Jade was going to be given her second chance but also sadness at another family’s loss of their loved one. How could we ever thank them enough for what they are doing for Jade.
Jade went down to theatre just before midnight and she came back to us at just after 9am the following day, 25th February 1995 was the start of Jade’s new life. The first thing that we noticed was that she was a lovely pink colour and her lips were so bright it all seemed so unreal. Over the next 48 hours they turned down the vent to wean Jade off and get her breathing for herself, which worked , she was starting to laugh, smile and kick her legs about, as she didn’t move about that much before, it was amazing to watch her improve. The day came for the doctors to remove the vent and see how Jade would cope; she didn’t so the vent went back on. They tried another couple of times over the next 2 weeks but still no luck. Jade was taken back to theatre for a broncospy, to check for any damage to her airways. The news wasn’t good, Jade had vocal cord palsy the only chance for her to come of the vent was to have a tracheotomy put in her neck. So a month after her successful transplant Jade was back in theatre. Over the next 2 months Jade is weaned down to just having a small amount of oxygen via her trachy and we can start to think about going home.

Or so we thought, after spending Jades first birthday still at GOSH and Jade still not eating and continually being sick we then discovered that Jade had a hiatus hernia, she needed her diaphragm sorted out and she had a nissans operation, where they put in a gastrostomy tube into her belly to help her feed. Heart wise she was perfect but it seems that the wait for her heart has put so much pressure on her other organs they need more time to heal.
When Jade was 14 months old we finally got home, 5 months after transplant and 10 months after going into heart failure. She still had the trachy and her gastrostomy but she was happy and that was all that mattered. Jade continued to grow, slowly and as her medicines started to reduce things started to get a bit easier.

Over the next 3 years Jade continued to do well, Matt and I had another baby, Becky, perfect in every way and we have since discovered that Jade has some learning difficulties but at this stage we were not sure to what level. We have started to learn a few simple signs and Jade is getting stronger and is able to stand on her own now. We were coping with her trachy and gastrostomy on a day to day basis and living life as normal as possible, then in January 2000 Jade developed Haemolytic Anemia. A big setback as this could have cost Jade her spleen or even her life. After a short stay at GOSH, blood and some very high doses of steroids we went home again. Then in March of that year Jade had a bronchoscopy to see how her vocal cords were doing, all looked good so they planned to take them out within the next few weeks. After yet another minor setback and 6 months later, success the Trachy is out after 4 years, now we just have to get rid of the gastrostomy.

Jade started school just before her 5th birthday, where she continued to thrive and do well. Her speech is coming on very slowly and her mobility is improving and heart wise yet again no problems. Then by her 7th birthday Jade is walking and eating and even saying a few more words. The Gastrostomy is out and with fewer trips to the hospital we are finally beginning to feel like a family.

Jade is now 16 years old and very happy, she still has learning problems and her speech is limited but she is here 15 and a half years post heart transplant. From going from having only a few days left to live and then maybe only having an extra 5 years after transplant Jade has proved everybody wrong. We know that time is not on our side but we are going to enjoy every minute of it. Don’t ever give up the fight

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

A little while ago we posted a story from Leah Biggs who finally received a new transplanted heart after a condition called ‘left ventricle diverticulum’ caused her heart to fail. Leah had two false alarms whilst waiting for her transplant but finally received her new heart in October 2010.

Nearly 18 months on Leah has a new lease of life that she could only dream of before the operation and has decided to challenge herself to climb Snowdonia in memory of Donna to raise money for the British Heart Foundation!

Please dig deep and help Leah smash her target and raise bags of cash the guys over at the BHF!

Leah has setup a ‘JustGiving’ profile to raise money which is a safe and easy way to send money and whats more, the money gets sent immediately straight to the Charity. Even better than that, if you are a UK Taxpayer they will also pay an extra 20% straight to the British Heart Foundation!

You can Visit Leah’s JustGiving Page and Donate here -> www.JustGiving.com/Leah-Biggs

And keep up to date with her progress here:

• Sat, 19 May 2012 15:02:03 +0000: So far this page has raised £155.00 - Leah Biggs - fundraising on JustGiving
  
  
  This page is currently live and will accept donations until 22-02-2017
  • Fundraising Page Target : £500.00
  • Total donations to date : £155.00
  • Online donations to date : £75.00
  • Mobile donations to date : £10.00
  • Amount raised offline : £70.00
  The UK Gift Aid scheme

  Justgiving will be able to reclaim and add £17.50 to these online donations thanks to the UK Revenue Service's Gift Aid scheme.
  All donations are paid immediately to British Heart Foundation.

Leah has also joined her JustGiving page to the Donna’s Dream Team Page which means that whatever she raises will be added to the grand total raised by members of Donna’s Dream! If you would also like to raise money for your favourite charity as part of the Donna’s Dream Team simply create your fundraising profile at http://www.justgiving.com then visit our team page at http://www.justgiving.com/teams/DonnasDreamTeam and click “Join The Team”

People, to my dismay, notice it all the time. It’s hard for me to go shoppin without someone looking down at my chest. God know’s I’d look if it were something I didn’t recognise. I dont blame people for wondering, and i do feel privileged when asked on it, when they recognise that it’s a scar.

It is hard living with it, growing up I wasnt as aware of it as I am now as its something I’ve had since my earliest memory. When I was a child, and was asked about it, i would simply say “It’s my Zip” and smile politely.

But, I have had some people look at it and think of it to be something else. A girl once told me that I should “Keep an eye one that rash incase it’s contagous” Me, not being as mature as i am about it as I am now, looked away from her, told her it was a scar and walked on. I didn’t know whether I should have been angry for someone assuming that it was a digusting Rash, or whether i should cry, it hurt me to meet someone who was ignorant to what some people live with, for judgeing. But, I held my head up high and got on with my business. Although deep down i felt that hurt and annoyed i knew that crying or going mad wouldnt make the situtation better, it would just create more fuss around the situation, which i was trying to avoid. Later, she did apologise and we put it behind us.

Another time, just a few weeks ago, while I was waiting for the bus, a man approached me and said “Woah, did u try to cut yourself?” not understanding what he meant i looked at him puzzled, when he indicated to his own neck, my heart sank when I understood he meant my Scar, shocked, i didnt know what to say to him, I told him that I had a heart condition and had undergone 2 operations. “At your age??” was his responce, not knowing how to react to this comment, I said that I needed to catch my bus and walked away.

Now, after knowing a dear friend, God Rest Her Soul, I am aware, that people like me, who have had both full transplants, and like me, homeographs which is like a transplant of one part of an organ rather than the whole organ, are here to show that no matter what is going on with us, we must not dwell on it, we should thrive, and make the best of a bad situation. When approached by  the two people above, I should have explained my situation and thanked them for their concern, and bidded them good day, but like everything else, I dont think of these things untl the moments past ..

But what I really wanted to say is that Yes, my scars can be daunting, and of course i have days where i feel that I hate them and don’t want them there, but do you know what, if i didnt have them I wouldnt be who I am today, if none this hadnt happened I wouldnt have my blog, as i do now, and i wouldnt be organising my charity event or have the plans I have today ..

By Chloe

(Updated:7/5/12)
I had been through an odd job interview, first thing I was asked was “wow, how did you get that scar?” so I explained that I have a heart condition without using the words “chronic heart disease”. The whole interveiw, which lasted about an hour consisted of being asked about my condition and when my next operation is, how long ago was my last one, blah blah blah, followed by one or two questions of my work ethic. I was told at the end of the interview that I would recieve a phone call by the end of the following week. I never recieved this phone call. I would like to think that this is because I had my phone switched off or because I had no signal but I know it was not. Inside I know that it is because the employer didn’t want to have to ring me and say that I havnt got the position and when I ask why not not having a reasonably excuse. I had all the desirable qualification and experience required as well as the essentail criteria, I also had outstanding references as my resferee’s told me of this. Is it right that anyone with CHD should be discriminated against due to their label? I dont think so, I think that if I wasnt able to work due to CHD I wouldnt, I am well enough to work so I will work all I like. Also is it right that i should have to cover up my scar in order to have a normal job interview? If I were to say nothing about my heart condition and covered up my scar, surely that would be false advertising?

Also, I have recently recieved hate mail due to being proud of wearing my scar, for supporting organ donation, and for sharing my story. I would like to take this opportunity to say a few words on this matter. Without sounding too harsh, I am who I am. I have been through hell and back to get the life I have been blessed with, my scar shows that I have been through a personal war and my smile shows that I have won the battle. Although I have not had a full heart transplant, if not for an organ donor I would not be alive to share my story. I agree with Organ Donation 100%, I support it and promote it, but i would never force it on anyone. If you do not agree with organ donation i would appreciate that you either think about my life, do u think I didnt deserve a second chance to share my story, and if not then please do not waste your time in contacting me to tell me that I am a “disgusting person who should not parade a horrible mark for the world to see” (meaning my scar). Please do not tell me that it is wrong to tell people about my own life and how I have coped living with a “disease” because I have shared my story to offer support to those who are going through the same situations and for their families to understand how their loved ones may be feeling even if they try to hide it. I have been called an inpiration for having the courage to speak up and help these families, just think, how many time has someone called you an inspiration?
Also, (if u are squeamish then dont read this part) I would especially appreciate if you would not share your thoughts on how u hope my scar “opens in my sleep so that my “deformed” heart falls out.” One, I know that this is not something that would happen, and two, I already have nightmares about this but the sheer fact that you have suggested this makes me realise that it is something that would only happen in the movies. You are the sick one, not me.
It is people like yourself that give me even more drive to share my story, to promote organ donation and to wear my scar with even more pride. Simply because it is you that is the sick person and not me, I am who I am . If you dont like dont speak to me, if you dont like what i have to say, dont listen and if you dont like what I have to write, dont read it. Simple

I am sorry if anyone finds these last paragraphs offensive, but it is something that I needed to get of my chest, (so to speak) and get it out of my sytem so I can focus on the tasks ahead. Thank you for all of the support guys and dont forget, what doesnt kill you makes you stronger

By Chloe

This made me think carefully of the motives of DD’s and I came up with the thought of how I had felt when I was 22 and couldn’t even go out with my ‘friends’ or comb my own hair due to feeling weak after the stroke and unbeknownst to me suffering from heart failure. I was given a support group number and I actually rang it with the response of ‘well its Sunday the man that you want to talk to is not in for you to speak to’ I thought I may not be here on Monday you silly woman! That’s not what I want DD’s to be, I want somebody who feels that the only way of survival is to give in and just reach out and just admit ‘I’m lost and I want somebody to help me find my voice can you help?’ just like I had 2 years ago and a flood of friends came along with their love and support and still do and that’s all thanks to donna. You see I’m not a part of this campaign because the white people have shown me the way of organ donation which contrary to popular opinion people will say that so just to clear things up, it was actually my Asian cardiologist who informed me that there weren’t a lot of black and Asian donors. I don’t plan on changing the world just people who will listen and take the out to understand. I don’t do this for popularity, fame or money. I have had a camera shoved down my throat (literally) so I really don’t fancy having 1 shoved in my face thanks! I support DD’s because it’s the right thing to do and I guess I do it because its major payback for the voice of that Donna found for me. So if any of you hear any different then there wrong DD’s will and shall remain a campaign/charity that helps people whether that’s to find there voice in the cruel disease that is organ failure.

I was always told, when growing up not to do any exercise, other that walking short distances when needed. I have never participated in any Sports day activities other than watching from the side line.

The reason being, I have a CHD. One of which I was born this. It wasn’t until I was 13 weeks old that my mum was told I had a heart murmur. My mum knew something wasn’t quite right with my heart murmur. After years of my mum being told to stop being silly by the hospital nearby, she went on to Oxford Children’s Hospital when I was 3 and a half years old. I was took to the hospital and given an EKG on a Thursday, and nothing of significance showed, then, the next day, a man came to mums door saying that I had an appointment in Oxford Hospital on Tuesday, and giving mum a bottle of Propananol with instructions for giving me it. We went to the appointment and that Thursday I Had surgery to correct a Sub-aortic Stenosis.

This Operation was only a temporary Measure as I was to grow and the Surgery would need to be corrected, so on the 27th October 2003 just 4 days before my 12th Birthday, I underwent a Ross Procedure.

The Ross Procedure is a type of specialized aortic valve surgery where the patient’s diseased aortic valve is replaced with his or her own pulmonary valve. The pulmonary valve is then replaced with cryopreserved cadaveric pulmonary valve. In children and young adults, or older particularly active patients, this procedure offers several advantages over traditional aortic valve replacement with manufactured prostheses.

So, now I am 20, well alive and kicking, I am awaiting word for my 3rd operation, but I still have about 2 years to wait.

I always wake up in the morning and forget that I am different to other people, it’s only when I look down and see my scar or as I used to call it, my zip, that I remember what I’ve been through. This is not a life I would wish for anyone, but this is who I am. Yes, I get fed up having restrictions, but the restrictions don’t last forever, I was always told never to exercise and now I walk up the mountains, I’m trying to pluck up the courage to learn to swim, I’m horse riding, I’m dancing, and I’m working. I can honestly say that I am Happy with who I am today, and this goes with an ABSOLUTE MASSIVE THANKS to my mum Tasha, and my dad Mick, for all my Sisters and my brothers for supporting me, a special thanks to my best friend Cat who has been through the most of it with me and who gives me the kick up the backside I need to see the light sometimes.
If you want to become and organ donor go to: www.organdonation.nhs.uk.

Az – Chloe has also started her own facebook page for people who suffer with CHD which you can find here : Heart to Heart

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

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: