Thursday, October 30, 2008

On Tuesday, Oli and I went to see a very special couple. Nyila and Zulf live in Coventry, and had agreed to chat to us and to have their story filmed so we can use it for raising awareness.

Fantastic stuff. Of course we have many fab volunteers stepping up to share their story, because they want to raise awareness about their plight. But Nyila and Zulf are different, because their story has already had it's very sad ending.

Their son, Ubaid, developed complications with the digestive system and liver when he was born. He lived in hospital for most of his life, on many treatments including TPN to keep him alive.

They described him in such a passionate way I could imagine him really clearly - his mischevious personality and cheeky smile captured in dozens of photos we went through. They laughed over fond memories - such as the fact that he apparently struggled to hold his milk bottle yet would quite happily wave a 2 litre (empty) coke bottle around!

Nyila and Zulf were told that Ubaid's liver was failing and he was put on the transplant list. They waited and hoped, week after week, staying positive that the call would come. But 8 months later, Ubaid ran out of time. They spoke clearly and passionately about their son, and at times during the interview I was wiping away my tears, trying to remain professional.

I cannot express how much I am in awe of Nyila and Zulf - they are so determined to stop other families going through what they have and are intent on supporting us inspite of their grief. Their story is so moving, it cannot fail to motivate people to think and talk about the subject of organ donation.

It is, of course, a reminder that sadly children need transplants too. Children like William, like Bethany. The concept of organ donation here becomes even more emotionally fraught; could you donate your child's organs? I'd love to hear some opinions about this.

Oli is putting together a video at the moment, featuring Ubaid and Nehal's stories, which I will be using on Saturday when I speak at a dance festival called Kalaalayyam. Who knows how many lives might be saved by these people speaking out about their experiences - without real life stories, Live Life Then Give Life would not be as strong as it is; we need you to help us help others. And as for me personally, I can't think of anything more motivating to remind us why we do what we do.

Monday, October 27, 2008

On Saturday, Oli and I joined our advocate Nelly in Uxbridge to walk 5k. Why? Because of the World's Biggest Walk, that's why!

Nelly had organised everything and at midday we set off round her town, decked in bright blue UK Transplant balloons to raise awareness about organ donation. It felt rather strange but great knowing people all over the world were walking at the same time as us and the weather was kind, holding off from raining until we finished.

It was the first time I'd ever met Nelly and her family and I was struck by how tight-knit they were; it reminded me very much of my family, and I know for a fact I would have gone insane without my family's support during the long wait for transplant.

Nelly is of Asian descent, therefore faces a much longer wait due to the critical shortage of Asian donors and the fact that people from that background are three times as likely to need a kidney transplant. Her kidney failure has caused rickets which means she is now wheelchair bound. Yet during the entire day, I didn't once see that girl without a smile on her face.

The walk was fantastic, Nelly's family and friends so lovely and eager to do everything they could to raise as much awareness as possible. Oli filmed the event (with our brand new LLTGL filming equipment - woohoo!) and I tried to look impressive by carrying the boom mic around. It was a fantastic day and I did notice at the end how inspite of a) walking 5k and b) wearing stupid and inappropriate shoes I felt fine at the end. How lucky am I.

Tomorrow, the Oli/Emily filming duo disappear off to Coventry to film a rather incredible couple...they lost their son a few months ago and have agreed to talk to us about why organ donation is so important. I think it will be an incredibly emotional day and I am nervous as I don't want to get too upset and make anything worse for them. They sound like truly amazing people and I am very much looking forward to meeting them.

I shall leave you with a few pics of the Saturday. YAY!

Oli Nelly and myself
Team Nelly!

Sunday, October 26, 2008


One of our superstar advocates, Holly Shaw, has got her new kidney!

It's very early days, but so far so good. If you get a minute please do pop along to her blog to leave a message of support - I know it will mean so much to her when she reads them.

Thank you.

Friday, October 24, 2008

It's been a sad 24 hours as we lost Toria (above) after a long and valiant struggle with CF. Toria leaves behind not only a grieving family but an 8 month old little boy. Take a look at her blog at some point; she was an extremely talented and open writer and it’s well worth a read. Along with feelings of heartache for her family, it has raised some hot emotions and some frank confessions.

I don’t really want to write too much on the subject as the most important thing is to remember Toria and what a wonderful vibrant and strong person she was, but to the Anon commenter on Oli’s blog, his feelings were only as judgemental as yours. Humans feel deeply and passionately and sometimes feelings are driven by emotion. No one can help that; that is why you wrote what you wrote and why Oli felt what he felt (which he is shrewd enough to observe about himself in his blog). As far as Toria goes, I’m just so saddened; she was a truly feisty woman who I was privileged enough to talk to on many occasions, and will be greatly missed by everyone who knew her. Thinking of her wonderful family, L and E at this sad time.

Moving on....I had another blood test last week which brought me back down to earth with a bump as my creatin (or apparently creatinine? Did I make the first up?) has risen again to 134 – highest it’s been. Humph. I am awaiting further instruction from Harefield. I’m feeling great (yay!) but I suspect they will want to try this new Immuno and have to confess I’m scared. Scared because I have been so so lucky. No rejection so far (touches wood 1000 times) which is almost too good to be true. And the cyclosporin is the only drug which I have been on consistently since day one, so it’s hard not to attribute my good fortune to this.

As always, the most important thing is to listen to my team, so this is what I am planning on doing. They’ve seen all this before and have told me already it’s a fairly common side-affect of cyclosporin, so whatever they say goes. Even if I do have a bit of a pout about it. My potassium was too high to but a) I don’t know what that means and b) apparently it can be caused by the “trauma” of taking the blood (I had 5 attempts with two people trying) so they’re just going to re-do the blood tests; probably nothing at all to worry about.

Lung-wise? They are awesome. Work wise? I am happy, busy and feeling very fulfilled. Life wise? It rocks and I love it.

Monday, October 20, 2008

I've had one of those weekends where you're just doing bits and bobs, but loads of wonderfully lovely bits and bobs.

Catching up with friends, visiting people you've been meaning to go and see but keep not getting round to, cleaning the house and feeling the satisfaction of it being all sparkly and tidy, seeing family, resting and relaxing in front of guilty-pleasure TV...

It's weekends like that when I reflect back on how it used to be. There was no option to suddenly decide to go and see people or head to the pub for lunch. I couldn't pop round to my family then rush back as I had to head off somewhere else. Everything was unconfirmed, waiting to see if I was well enough, if I had enough oxygen, and if it as a yes it was a military operation to get me out of the house. lucky am I!? At this point I'd like to mention a friend of mine, Rachy, who is not as lucky. Any support you can give her is greatly her and by me.

I am off to Manchester later on to stay with our lovely Advocate Holly. I assure you it's all for work purposes, I am spending all Tuesday at a study day at the Manchester Royal infirmary, hosting a LLTGL stand, and giving a presentation about our charity and of course about me. It'll be a long day but I'm really looking forward to it; I've so been bitten by the "giving talks" bug again since doing the Justgiving one.

Just give me an audience, and I'll talk at them...who knew that my teachers' biggest concern at school ("Emily talks too much". "Emily is a bright student but needs to concentrate more and not get distracted") would turn into such a bonus? woohoo!

Oh and one final random comment - can anyone involved in design and/or fashion please drop me an email? Thanks muchly.

Thursday, October 16, 2008

Click here to see a photo of me being extremely professional at the Justgiving Talk. Suggested captions in comments section on the LLTGL blog appreciated ;)

Monday, October 13, 2008

Last week I did a talk at the Justgiving away day. For those of you who don't know, justgiving is an online service that facilitates charitable donations online. I have been using them for years for the CF Trust, and LLTGL is now registered with them as well.

The talk went really well, and I loved meeting everyone from the JG team - a very friendly bunch who kept bringing me cups of tea and were just very sweet, thanking me for coming to speak to them about my personal fundraising experiences. You can read their account of the day on their blog.

One of the organs which seems to be surrounded by the most misconceptions is the liver. (By the way I am off on one about transplants in case you hadn't gathered)

Unfortunately I have met people who have said they have said no to donating their liver on their organ donor card as they "don't want some alcoholic to waste it". Whilst I see that this is an understandable concern it saddens me. After all, perhaps if my donor had declined to donate their lungs in case a smoker ended up with them I would have died.

It's all so personal, so dependant on perspective, belief and choice. I actually find it really interesting how some people seem to be more reluctant to give certain organs. I know a few of my friends find the idea of donating their corneas too much to contemplate. I also never realised (until I read this blog) how important it is to tick "all" as some things (such as the small bowel) which I would have assumed was an organ do not have their own box on the organ donor card.

So anyway, this video I think demonstrates just why the liver is such an important organ and shows just who is waiting and hoping for that call, and who you actually might end up damaging by not ticking that box.

Click to watch a video on Bethany's Transplant Assessment. Speakers on...

Thursday, October 09, 2008

Apologies for the slight delay in blogging, I have had a very busy (but fantastic) 2 weeks being a Tour manager around London and France. Anyhoo, back to the world of the real (as opposed to eating dinner with Minnie Mouse, pic hopefully to follow) and things are no less hectic back here!

Without going into too much detail I had a not very pleasant couple of months a while back, and was finding myself crushed under things which gave the pretence of being vitally important but which in actual fact, weren't. It's easy to lose perspective when someone is in your ear persuading you to dedicate all your time and energy to something that if you stood back and took a look, was never really that important to you in the first place, and certainly wasn't helping anyone (something I have since realised is pretty vital to me for fulfilment purposes).

Now I look back I am surprised at how easily my confidence was crushed; I would have thought I'd have more emotional strength than that but then again it is a new world now, one in which I feel I don't have much experience in and certainly less than my peers, so it was easy to believe that when told. It feels like it would be so easy to now say "I want to stick to things that I know I can do" but I think it would be much healthier to keep on trying new things, and learn what else is out there.

I think I might have mentioned before an advert I've seen on the tube which says something like "there are a million different ways to change the world. Find yours." I've already found mine, I know what it is and what I'm good at and what I love to do with all my heart and soul. And when I am kept so busy that I don't have time to even glance at it, I become frustrated and unsatisfied. I just now need to work out how to balance necessities of life with doing what I love: helping people and raising awareness for a cause that is so near and dear to my heart.

I'm still a little lost, but I'm getting there. I have a map now (I think) but it's in Spanish and it's upside down, but at least it's there and I'll slowly start figuring it out. I'm learning that I am good at stuff again, and feeling more confident and gathering myself together again, to how I was. Surely nothing is worth losing your sense of self over is it.

A little cryptic? Sorry. As often happens this blog is more for my own benefit than for my readers. Have a picture to make up for it.