Join Donna’s Dream for National Transplant Week July 2014

I want to be an organ donor donnas dreamEvery year the NHS Blood & Transplant host national transplant week  to raise awareness for organ donation in the UK in the hope of getting more people to sign up the organ donor register.

July 7-14th is the date for this years Transplant week and we hope to get in on the action with an event all of our own. It’s top secret at the minute and we are keeping our cards pretty close to our chests but trust me it’s going to be fun and something everyone can get involved in.. it’s also free and easy to do and literally wont take more than a few minutes to take part.

The more people we can get involved the better so keep your eyes peeled for when we launch the event as we really need you to help us share the event and get as many people involved as possible.

Finally, are you doing something yourselves for transplant week or do you know of any events going on in your local area? Let us know as we will add it to our events calender which will be shared on the website, Facebook and Twitter!

Much Love

– Az

p.s. Want to know details about the event first? Add your emails to our mailing list…

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Record number of organ transplants in 2013 helps nearly 3500 critically ill people

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The NHS has revealed that a record number of people on the transplant waiting list received life saving organs last year.

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YOU KNOW YOU’RE A TRANSPLANT PATIENT WHEN….

If you have received an organ transplant it stands a good chance you will recognise some of these. See how many of these relate to your experiences and if you have any you can add… and please, do share with your friends!

This list was originally written by My wife Donna who is the inspiration behind Donna’s Dream. Donna did amazing work promoting organ donation while she, herself, was very ill and her memory lives on in the charity we run. – Az.

1. You take copious amount of pills every day.

Transplant anti rejection Tablet

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Eloise’s heart transplant story

Eloise Allen Heart TransplantEloise was born on the 7th September 2000, at 32 weeks weighing a healthy 4lb 15oz. She was fit, well and heart healthy. She had an echo during my pregnancy and one at birth because I have a mild CHD. These tests showed she had a normal heart.

Eloise thrived and grew into a happy toddler. In April 2002 she caught hand, foot and mouth virus very mildly from Nursery, she wasn’t really ill. On the 23rd of May she woke up unwell, laboured breathing, blue tinge to her lips so I rang the GP for advice. He advised taking her to Bristol Children’s Hospital to be assessed. Off I went thinking worse case scenario admitted for intravenous antibiotics to treat a chest infection.

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Louise’s story – Proud to teach about Blood, Organ and Bone Marrow Donation

Last week I posted about Donna’s Dream becoming a registered charity and what we would like to do. I mentioned helping to fund projects that educate students about donation and that ‘Register & Be a Lifesaver’ would be one of those projects. I’ve been in contact with Louise Wilson who is a volunteer for R&Be and here is her story and why she is proud to teach about Blood, Organ and Bone Marrow Donation.

 

Thankyou Louise…

We are so proud to be a part of R&Be (Register & Be A Lifesaver) it helps us so much to do something positive.

I became involved after hearing about the then fledgling project as I sat one morning, cup of tea in hand, watching the BBC breakfast news.

There on the red sofa sat an amazing young man “Adrian Sudbury” who was explaining to the nation all about his inspirational idea of educating young adults regarding the importance of stem cell donation. This struck a very personal note with me as two years earlier we had lost our precious son to Acute Myeloid Leukaemia, he was aged just 23.
Michael was diagnosed in February 2005 and he fought the most amazing fight against this debilitating disease. After months of chemo we were given the wonderful news that he had achieved remission but in order to prevent possible relapse the search began for a stem cell donor.

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REGISTER AND BE A LIFESAVER

Let me tell you about a chap i’ve been speaking to just lately about organ donation education. His name is Keith Sudbury and his son Adrian campaigned exhaustively for more organ donors and for organ donor education. Adrian had Leukaemia and received a bone marrow transplant but sadly lost his battle in 2008.

Adrian’s dad Keith went on to start Register & Be a Lifesaver (R&Be) and not long after began delivering presentations about blood, bone marrow and organ donation in schools just as Adrian had wished. R&BE is now funded by Anthony Nolan, the worlds first stem cell donation register and the UK’s first dedicated cord blood bank, in partnership with the NHSBT.

Before I go any further i’ll explain why i’m going into detail. For a while now i’ve been looking for ways to get more schools to teach our young adults about organ donation, and blood and bone marrow, and so far have been hitting my head against a brick wall with regards to schools local to me. I looked at starting a project myself then realised i’m not the greatest public speaker in the world. When i stumbled across R&Be I decided that, with the amazing followers and friends Donna’s Dream has, we could help fund projects like this through various kinds of events and fundraisers. Don’t forget, last year we raised over £8.5k for organ donation related charities in the UK without even breaking a sweat. OK, so maybe a couple of us did, but that’s besides the point!

My initial vision is to get ourselves registered as a charity, register a JustGiving Charity account and then go like the clappers raising money which can be used to fund various projects like this. Obviously it takes time to start a charity so i’m going to start the ball rolling now but for the time being i’m going to start blogging about the various projects I would like us to fund. I also have some ideas of my own and i’m always open to ideas from everyone else, so shout them out to me!

Anyway! More about Register & Be A Lifesaver..

So far R&Be have made over 1000 presentations to over 60,000 young people. Yes, that’s 60 Thousand. And the feedback from them, and their teachers, has been extremely positive. Trained volunteers deliver the facts during a thought provoking presentation lasting no more than 35-50 minutes ensuring young adults make an informed decision about becoming a blood, bone marrow or organ donor.

It’s simple isn’t it really. Without funding this project just wouldn’t exist. How many more projects like this are there around the UK that are struggling to get off the ground? Wouldn’t it be amazing if Donna’s Dream and the awesome people connected with it could raise valuable funds to get this kind of thing moving? What do you think? Shout out in the comments box below.

Much Love
Az x

Don’t just take my word for it, download the R&Be Info pack here….

Register and be a lifesaver | Organ Donation Education
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Dear Reader: Dealing with Cardiomyopathy and life on the Transplant waiting list from the perspective of a loved one

In 2011 I posted a story from Christopher Cooke who had Dilated Cardiomyopathy and was waiting for a life changing transplant heart transplant. Chris is still on the transplant waiting list and through all the ups and downs of waiting for that new lease of life we often overlook the people who are also going through the situation too, the loved ones. This update to Christopher’s story has been written by his girlfriend Marlene and certainly brings back alot of memories for me as i’m sure it will for anyone who has been or is currently going through the same thing whilst someone close to them is waiting for that life changing call. And i do hope Chris’s call comes soon. – Az x

Dear Reader,

My name is Marlene Jørgensen, and I’m in a relationship with Christopher Cooke who since the age of 17 has been suffering from a severe heart condition known as Cardiomyopathy. I’m writing this now for everyone to get a better picture of how serious illness is coped with from a loved one’s perspective. Getting a deeper understanding of how it is to deal with serious illnesses that leave your body helpless in defending itself is crucial, and when you know that about 10,000 people are on a waiting list for a new organ, then think of the people who are closest to those 10,000.


Depending on the individual, those 10,000 who are suffering and fighting a daily fight within themselves, are sharing it with family, friends and loved ones. As an example you can say that every single one of the 10,000 is close to 5 people each, with whom they either live or just confide in. So we get to 50,000 people in the UK who are affected daily by events they can’t do anything about to change. They are affected by worries and sorrow, and have nothing to comfort them other than the wonders of modern medicine. You have roughly 65 million citizens in the UK, so 50,000 is just a tiny fraction in comparison, but doesn’t at all mean that it doesn’t need attention.

65 million is such a large number, it’s impossible for me to comprehend. Where do you put them all? I’m from Denmark. Tiny little country with 5 million citizens but I still have difficulties imagining that many people living here.

This brings me to my first challenge: Long Distance Relationship.

Most people have said to me they could never do it. Well, I feel like I didn’t have a choice. You don’t choose who you love, it just happens. Being so far away from someone you just want to spend every waking second with, is absolutely devastating. Being so far away from someone who lives with an LVAD, on medication daily and needs to rely on electricity to function within the normal parameters that his disease restricts him to, is a whole other level of devastation. It’s intensified by hundreds. If he gets “the call”, meaning that there’s a heart waiting for him to have, then I have absolutely no shot at getting there in time. The thought that I can’t be the last person to tell him I love him before he goes into surgery is just unbearable. As things are now as I’m writing this, I’d have to rely on phone calls to know if the surgery went well, plus I’d want all the follow-up information about his recovery.  In other words; things that would be simple for other couples to do, is for us impossible. When we finally get to spend time together, it can only be 7-14 days at the time, but those are counted as the best days of my life. The rest of the year I’m only waiting to get to go again. We just really enjoy each other so much and it’s the greatest of contrasts in my head when one second I think about how happy he makes me, and the next it’s “Will I ever see him again?”
I feel horrible when I think like that, I feel like something is wrong with me since I can’t be in a positive state of mind when it’s most desirable, which bring me to Worries.

Christopher and I have way too many worries for people our age. We share the worries of his illness, the present, the future. On top of that comes all the worries everyone has in daily life. Money, job, education.
To me education has become a luxury-thing. I could get one here in Denmark, but it would take minimum 3 years, but I’m done waiting around to be with him. So that’s something I feel like I have to put aside for a while.

Christopher will sometimes tell me he’s in pain. And those pains are highly unpredictable.  It could be anywhere really, an arm, leg, foot, knee. Or sometimes it’s numbness. For the sake of not worrying so much of why his arm is hurting or why his lips are numb all of a sudden, I wish I knew so much more about his condition at the level of any cardiologist. Not knowing is just terrifying and I can’t do anything but to tell him to see his doctor, to which he either replies “I’ll just wait and see.” or “Nah,  I’m sure it’s nothing.” Frustrating as that is, I can’t make him, and it is his body, so I have to trust him if he feels like it’s nothing to bother with really. I just have to take comfort in the fact that he knows his body the best and most of the pains he experiences aren’t new to him, so with painkillers at least I don’t have to worry that he’ll be too affected by it.

The Future is a split term for both of us. We often talk about that one fine day when we’re living together, and not just living together but making a living. We’d get a dog, have jobs, pay rent and complain about the bad weather, like any other normal couple. The pain-filled past of hospitals, worries and waiting lists will be long gone. Christopher has family living in Australia, and it’s a shared dream that we might one day go and live there ourselves. So many joys ahead. But where there is happiness, sadness follows. They often go hand in hand. Like our conversations of the future, I admit, we talk about the good future most often but at times it feels like we have to at least address the darker one too.  The darker future is the one I hate to the core of my soul. I can’t even think of it without crying so this is very painful to sit and write down, knowing everyone can read it, especially Christopher.

In that future, as you might imagine, things just don’t go the way we all hope it will. Death is something no one wants to think about and is considered only to be a worry of the elderly. I consider this to be one of the reasons people are having trouble signing up as organ donors, yet the fact is, that we’re all going that way, we’re all headed there, and some faster than others. So as Christopher is on a waiting list, and being aided by an LVAD you might think of it as him having been forced upon the fast-track in life. Not like he’s trying to win a game, he’s trying to beat it. Beat the odds.

I think of Az, the creator of Donnas Dream, all the good things he has done to promote organ donation in the memory of Donna Mansell and that’s despite going through losing the love of his life. I can’t for one second imagine what it’s like to go through a loss that great, but if I try really hard and force myself, it all looks very grim and I know that I would be in a very bad place for a very long time. It would change who I am and it would take away reason to go on. I know Christopher wants to hear that I’ll be alright in the end, and I probably will, but I know that it would take years.
So how does one recover from having sunk into the depths of one’s imagination?

Hope.

You hope that it won’t come to that, and you hope hard. They say hope is the last thing a person can lose, but in Christopher’s case I hope for him aswell, so maybe that counts. He can’t lose hope twice, so I’m always ready to lend him some when he feels like he’s running out. Hope is what drives us, and the reason we could ever have allowed ourselves to begin our relationship in the first place. So for that I am forever thankful.
It is also my hope that maybe in writing this, readers could get a different perspective on the affects of organ shortage. And I invite you all to consider the possibility of signing up.

At the end of the day, when I’m done feeling sorry for myself, and for Christopher, I consider myself to be one of the luckiest people in the world.
I got to fall in love with the most wonderful person I’ve ever met…
…and he loves me back.

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