Rachy's update

A blog post I've been meaning to make for a while now but one I just haven't been able to put into words.

Since becoming an ambassador for LLTGL I received my one and only call for lungs at 4.10am on March 10th 2010. At the time I was desperately ill, relying on a non invasive ventilator to breathe 24hrs a day. I had lost hope that my call was coming, the previous evening texting LLTGL chair Emily saying "I think my time has run out". Once I got the call we grabbed essentials and sped towards the hospital, I was settled in a small sideroom by 5am, not knowing I'd spend the next 14hrs here waiting to hear if the lungs were good enough. waiting to hear if the lungs were good enough 10am

By late afternoon I'd prepared myself for the fact I'd probably be going home, it had been a long time and although members of the transplant team were coming and going they had very little news. Mum and dad left me to get some rest around 5.30pm, after around half an hour an anaesthetist appeared at my door. The transplant was going ahead and he'd come to take me to theatre. I signed my final consent forms in a complete blur, I was physically shaking and could barely hold the pen. By almost 7pm I was in the anaesthetic room with lines in and ready to be anaesthetised, my last pre transplant picture was taken at 6.48pm. The wait then began for mum and dad and after 10 long hours they got a call to say I came out of theatre at 4am on 11.03.10. The team had worked for 20hrs straight to save my life. My donor was non-heart beating, I was one of only 30 recipients in the UK at the time to have a non-heart beating donor and only the third person at my hospital to have such a transplant. recovering post op in ICU

Due to how unwell I was pre transplant my recovery post op was long and complicated. I was in hospital almost 3mths and required an extended stay in intensive care. My recovery is on going and my post transplant life has seen me face new challenges I never thought I'd have to face. I have suffered complications and unfortunately the lungs are now damaged and will not recover. I'm now back on oxygen and reliant on alot of treatment to keep me alive but I do not regret having my transplant for a second. My time had run out the fact I'm still here now is thanks to the hard work of the transplant team, the bravery of one special family and the kindness of an amazing donor. You can keep update with my progress here.

Rachy xx

Our newest Ambassador & keeping up to date.

We are delighted to welcome the lovely Kirstie Mills as a new addition to our LLTGL Ambassadorial team.

Kirstie is 21 years old and has just been told she has been accepted onto the waiting list for a double lung transplant. Kirstie has already started campaigning fiercely and is showing the world that she's a force to be reckoned with! She's doing a fantastic job and we're honoured to have her as part of the LLTGL team.

Our wonderful Ambassadors Tor and Rachy are still working incredibly hard, despite their health battles. You can follow what all three of these incredible women are up to in a variety of ways:

Tor.

Tor has been waiting for almost 4 years now and despite growing progressively more poorly, is still fighting hard. Check out Tor's twitter here, or you can join her facebook group here to add your messages of support. Tor also keeps her own blog here.

Rachy.

Rachy has suffered numerous and severe complications since her transplant. Her optimistic attitude and determination to continue campaigning regardless is inspirational. She is also on Twitter and her blog can be found here.

Kirstie.

Kirstie has only just been listed for transplant but is currently having a very tough time and is in and out of hospital whilst they try to stablise her. She has her own facebook group here and her blog can be accessed by clicking here.

We're hugely grateful to all three of our Ambassadors for everything that they do, both for us at LLTGL and for the entire transplant community.

Reality of waiting for transplant

Apologies to those readers who will be upset/annoyed at this blog post but I am so pent up with emotion at the moment I have got to let it out somehow. I am so unhappy right now I can't even find the words to tell you, nothing has "happened" as such its just a culmination of every single thing making an overflowing load that is just too much to bear.Life is so unbelievably hard everyday and I just don't know how much more I can take of it. I hate myself for even admitting that fact. My body is failing me, breaking down in ways I didn't know were possible and reminding at every point possible that its doing so. I mind my diet all day every day to manage my diabetes, my back and joints and tummy ache often in synch with each other, I don't sleep properly and often have nightmares, I'm nauseous and sick each day, I am exhausted and breathless from the minute I wake up till the minute I lay down, treatment is taking over my entire life and thats the tip of the ice burg. The wedding was a treat, I hardly manage any special occassions, outings etc anymore and when I do I whacked for days after and have to suffer for it. I see events like Christmas and birthdays and they seem so far away. I convince myself that I will have had my transplant by then and will be able to join in properly but then they come and go and I'm still stuck in this limbo.Nothing seems to be going right at the moment, even silly things like buying new furniture or disputes with my uni over something I'm unhappy with are not straight forward and although they are little things they become huge when your life is as small as mine. I feel like I am being blocked at every turn I take, the changes I am so desperate for to make me feel as though I am on the right track just in one insignificant area of my life over which I have no control. I am asking for help, from GP's, doctors, evryone around me, it's not their fault that they don't have the drugs, lungs, answers I need to make things just that bit easier.I am trying so hard to feel better, to keep fighting but I don't know how to put one foot in front of another right now. Its as though everything is willing me to give up, as though they know I'm not supposed to still be here. I won't give up I haven't reached that stage yet but I can't keep this up without some change. "Helpful people" tell me I have to try harder and that things "don't matter/will be sorted out" but they dip in and out of my life knowing certain details and not the whole picture. They go back to their own lives. I feel really alone at the moment, no offence to anyone but its like they are a million miles from where I am now. The internet is my life line but also a curse, it keeps me in touch with others but also exposes me to people doing all the things I dream of while I can only watch with jealousy from the side lines.A wise friend said to me recently that serious illness inevitably has an effect on confidence and self esteem, it's certainly true in my case. I have no confidence in myself now and my esteem is at rock bottom. I feel that somewhere along the way I've lost myself, I never really had chance to find out who "me" is, for as long as I can remember I've had to make huge sacrafices for my health. I never feel happy with my appearance because I go for comfort, and never have the energy to be able to try things on properly. I don't like the person I've become always moaning, wrapped up in my health and putting a downer on everyone around me, I hate that person but can't pretend that things don't matter when they do so badly. Friends will tell you that I've been quiet lately and its because I don't feel like talking, bringing others down or putting on a smile and pretending all is fine. It sounds dramatic but I don't know why anyone would want to be frinds with me right now as I have no people skills or anything of interest to say.I'm sorry for such an out pouring of negativity on here. I needed to get it out somewhere and unfortunately you got lucky! Rest assured I am ok (I know, I know obviously not OK) but I will get back to more solid ground at some point hopefully soon. My life is a gift and whever I have a negative thought I DO remember that, even though it doesnt seem like it.
xx

Get involved

Transplant week was a great success with lots of positive media coverage, tweets about signing the organ donor register and fingers crossed this will result in a lot of sign up's. My friend Jen and I appeared in The Mirror you can view the article here
LLTGL updated their blog with a different transplant related story everyday, showing the many ways that transplants touch lives. Rachy and I would like to say a big thank you to anyone who raised awareness or did something for transplant week, you're stars!
If you missed out but still want to help, it's not too late!!!

• Send a tweet asking people to sign the organ donor register and include the link to sign up http://tinyurl.com/ldkrcz
• Tell all your friends on facebook why it's so important to sign up!
• Talk to people in you're workplace about signing up. Put leaflets or a poster in your staffroom to get them interested. You could even set up computers to the organ donation register so they can sign up then and there.
• Do you write a blog? Why not write a post about organ donation and the difference it can make.
• If you're feeling adventurous take up a challenge event/ make a donation/or have a fundraiser for LLTGL so they can continue their lifesaving work promoting organ donation and supporting transplant patients. Check out their website for more fabulous ideas for getting involved!

It couldn't be simpler to get involved and could literally be the difference between life and death for people like me. Leave us a comment and let us know what you've been up to!

x

Transplant Week

Today kick starts National Transplant Week. As I'm still recovering from my lung transplant I'm going to be doing as much behind the computer screen as I can. So I thought I'd start here with some myth busting. It still surprises me what people believe about organ donation and it just inforces the fact that Live Life Then Give Life are needed to educate people and help get the message across. So here goes.

Myth: If I agree to donate my organs, hospital staff won't work as hard to save my life.
Fact: When you go to the hospital for treatment, doctors focus on saving your life — not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care has nothing to do with transplantation.

Myth: Organ donation is against my Religion.
Fact: All the major religions of the UK support the principles of organ donation and transplantation. However, within each religion there are different schools of thought, which means that views may differ. All the major religions accept that organ donation is an individual choice. NHSBT has worked closely with religious leaders of Buddhism, Christianity, Hinduism, Islam, Judaism and Sikhism to research and produce a series of leaflets explaining organ donation and religious viewpoints and principles. Which are available here.

Myth: I'm too old to be a donor.
Fact: The oldest donor to date was 104yrs old. In the case of cornea and some other tissue, age does not matter. For other organs it is the person's physical condition, not age, which is the deciding factor. Specialist healthcare professionals decide in each case which organs and tissue are suitable. Organs and tissue from people in their 70s and 80s are transplanted successfully.

Myth: I have a medical condition and I'm too ill to be a donor "people wouldn't want my organs".
Fact: Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs and tissues may be fine. Only medical professionals at the time of death can determine whether organs are suitable for transplantation.

Myth: Carrying a donor card is all you need to do to be a donor.
Fact: Cards can and do get lost or damaged and you may not be carrying yours when you are taken to hospital. Adding your name to the register is a more permanent way of expressing your wishes. You can still carry a card if you wish to. And most importantly don't forget to tell your relatives and loved ones what your wishes are.

Rachy update

Forgive me for shameful lack of blogging recently, I am a terrible Advocate! I've been struggling myself recently and finding it difficult to cope because of various things, so haven't been as talkative as usual.
However I do have some fantastic news about my fellow advocate Rachy that I had to share. On Friday she was allowed to leave hospital and start out on her brand new life, isn't that amazing?! From arriving at the hospital to have her transplant, breathless, on oxygen, in a wheelchair, and nearing the end of her life, just a few months later she has been transformed to someone who walked out of the hospital, tube and wheelchair free, with endless possiblities ahead of her. That is the miracle of transplant, I can't say it any clearer than that.
I'm sure Rachy will be along to update you all herself very soon but I wanted to let you all know how well she has done and send big hugs and kisses from all of us here.
xxxx

The other side of the story

It's been a while since I updated once again, life has been a bit hectic lately and I've been getting very tired so blogging has unfortunately suffered. I will definately post about all thats been going on since last time very soon, but today I want to discuss the recent negative stories about organ donation in the press.
On Sunday morning I heard the story on the news and my heart immediately sank. Some donors (those who signed up via their driving licence application) had their wishes recorded wrongly onto the system. Although they had given their consent for their organs to be used after their death, the information about which organs could be used had been wrongly listed. Obviously my heart goes out to those donor families that have been affected by this news. It must be very traumatic for them to hear and to inevitably relive the experience.
In my position it is always so gutting to hear of a negative story that may adversely effect people deciding to donate their organs. There have been conflicting reports in the papers and that doesn't help either, it is completely understandable that readers take it at face value and think "maybe donation isn't for me". Unfortunately what the papers in the most part dont show you is the thousands of people like me whose lives depend on organ donation, those who are waiting and dying everyday. It doesn't tell the public that 3 people waiting for an organ die each day because of the pure lack of donors. It doesn't tell you that you are more likely to need an organ than to donate one.
I want people to have both sides of the story in front of them and to make an informed decision. That is why when GMTV phoned and asked me to appear on Mondays show (yes, 2nd time in under a month!) I jumped at the chance despite feeling pretty rough. It gives the public another view, another side to the story. You can view my interview above.
The NHSBT service are contacting anyone effected by this error to ensure that the information they have is correct and complies with patient wishes. The mistake was made over 10 years ago and the new systems in place are working to prevent this ever happening again. See the link here for LLTGL's post on the basic facts of the story.
Please pass this post on to as many people as you can to give them an insight into what life is like being dependant on someone else to allow you to live. I really hope that the damage caused by this story will be limited and that people will still be willing to donate the gift of life that so many people are hoping for.