Friday, 27 February 2009
Me and Emily on our way down to meet Jessica wales who I discussed in an earlier blog and videos from when me and Em filmed with Jess!
Great news, Jess wants to be involved in the campaign and so hopefully she will agree to do some media work that will coincide with the "Donor Day" ! If you are affected by organ donation/ transplantation and are interested in getting involved in this way too... get in touch!
As for the "Donor Day" this is a work in progress... it's main aim is to get as many people to sign the Organ Donor Register in one day... and show their support for my campaign by changing their status and/or profile pictures on their social networks on that particular day!
The day in question is Tuesday 7th April so pencil it in your diary's for now and I will confirm this is the actual date as soon as possible!
Thursday, 26 February 2009
Fear that doctors will not make every effort to save their life tops the list of reasons stopping people becoming organ donors. But according to UK Transplant
"The doctors looking after a patient have to make every possible effort to save the patient's life. That is their first duty. If, despite their efforts, the patient dies, organ and tissue donation can then be considered and a completely different team of donation and transplant specialists would be called in."
Other myths included people being worried about what happens to their body after they die. Again UK Transplant approach this by saying
"Organs and tissue are always removed with the greatest of care and respect for the person. This takes place in a normal operating theatre under the usual conditions. Afterwards the surgical incision is carefully closed and covered by a dressing in the normal way. "
And one in five said they did not want to register as an organ donor as they did not like to think about death. As I said in my previous post about meeting with Jess To all those people who haven’t signed the Organ Donor Register because they don’t want to think about death and dying, you should look at Jess , Everyday she has to face the fact that without a transplant she will die so surely you could think about your own mortality for 2 minutes while you sign the register.
Dr Paul Murphy, an intensive care consultant in Leeds and NHS Blood and Transplants national clinical lead for organ donation, said discussions on issues around death and donation needed to be more open. To read the full article click here.
This survey/article proves that more education and discussion is needed on the subject of organ donation, it is still a somewhat taboo subject but it shouldn't be. People need reassurance their questions about Organ Donation answered so they can then make an informed decision about whether to not sign up or sign up (hopefully the latter).
For more information about Organ Donation and Transplantation, visit the "Your questions answered" section of the UK Transplant website here.
Wednesday, 25 February 2009
I have had my transplant 4months today, I still can’t believe I am able to do all these things now and be so spontaneous! It’s a strange feeling having sore feet before getting out of breath and feeling tired myself! As you can see from the picture my mum and I soaked our feet in the bath when we got back to soothe them a bit!
Tuesday morning we walked from the Travelodge to the underground and then headed into London (Goodge Street) to meet up with the crew from Battlefront and Oli Barrett (my BF mentor) He took us to One Alfred Place where we had a really interesting and productive meeting with Amy McClaren from Colman Getty.
Amy is a PR expert with some great tips on campaigning, press releases and my event in general! I am also excited to say that she has agreed to be an E-mentor for me so I can contact her via email to ask her for help which is great and I will certainly be taking her up on her offer! Lots of things to do with the day were discussed, nothing was set in stone yet but as soon as I know anything of course you will be the first to know!
After the meeting Rosie and Tom from Battlefront drove us to pick up the lovely Emily T from Surrey (stopping for a sausage butty on the way, very glamorous! Haha).
We then travelled on down to Kent to interview Jessica Wales who had kindly offered to be filmed for my campaign, she is currently waiting for a double lung transplant and has been for the past 3 ½ years! In that time she has had 5 false alarms (where the call comes, but the transplant doesn’t go ahead) she is a real tough cookie and has a great sense of humour! Her and her family were so friendly and welcoming, so I would like to say thank you for that.
Jessica has Cystic Fibrosis and was diagnosed at about 4 months old and began the daily medications and treatments to try and keep her well, but she was in and out of hospital regularly with chest infections. When you are listed for a double lung transplant you are usually given a prognosis, Jess was given 2 years without a transplant she has already outlived her prognosis which shows her determination and how desperate she is to survive.
Meeting Jess and hearing about her illness and the restrictions it places on her daily, really hit home with me, I don’t mind admitting I did get a bit emotional watching her struggle to breath (Jess even apologised for making me cry). Although we have “waiting on the list” in common I can never relate it to my situation as I was being kept alive by dialysis, Jess doesn’t have that luxury, for her it really is a matter of life and death.
It was a strange feeling, I almost felt guilty that I had had my transplant and questioned why Jess still had not had hers, I know Jess wouldn’t want me to feel like that but I couldn’t help it. I could have survived on dialysis for many more years yet, while Jess, without a transplant will die. I don’t know how she copes but she does with such strength and humour. The afternoon, although serious, was full of gossip and giggles, in fact we got told off for not staying on topic, personally I blame Emily for this!
To all those people who haven’t signed the Organ Donor Register because they don’t want to think about death and dying, you should look at Jess , Everyday she has to face the fact that without a transplant she will die so surely you could think about your own mortality for 2 minutes while you sign the register.
Jessica says “A transplant to me would mean the world. Not only would I get back my life but my family would get back the girl they used to know.”
Jess is 19, she has so much she wants to do with her life, she’s funny and bubbly, has a zest for life and is a true inspiration. She (along with over 8000 other people on the transplant waiting list) is the reason I am doing this campaign, and the reason more people should sign up to be Organ Donors.
Friday, 20 February 2009
It was very intriguing hearing about what happened in preparation for my transplant, being in the pre-theatre room and being anesthetised, which is my last memory of the night of my transplant! We were shown around the scrub room and saw where the instruments and medical equipment are kept and then we were taken into the actual theatre!
I was speaking to Mr Bakran about the aims of my campaign and he seemed really impressed and thought it was great that a young person was campaigning on this topic. It was also great to hear him talk about transplant statistics and why he thought more people hadn't signed up to the Organ Donor Register - he believes that people (especially young people) don't like to talk about their own mortality and death! This is true - it is a bit of a taboo subject amongst young people, but it shouldn't be! Look at what age I became ill (17) it just shows that it can happen to anyone at any age!
He was keen to encourage more people to sign up to the Organ Donor Register and was really supportive of my campaign. I really appreciated him taking the time out to speak to me today! It has spurred me on to make this campaign a huge success and in the process save and transform lives!
I also spoke to the nurse that originally looked after me in clinic once I was discharged! We sprung filming on her but she was really happy to be involved which was great! And finally we spoke to the ward manager Andy who actually looked after me when I was first diagnosed with Kidney failure and again after my transplant. It was interesting to hear him talk about the difference in me from when I was on dialysis and now that I've had my transplant!
I then came home and had a webcam chat with my mentor Oli who again was full of great ideas to take the campaign forward, everytime I speak to him he motivates me! Will keep you updated on our progress!
I am off out tonight (dressed as a nun) for my friend's birthday so that should be fun! One final favour before I go....
I would also appreciate you answering my current poll on my bebo page about whether you would be willing to display the fact that you are on the Organ Donor Register on your networking profiles! You vote by clicking here! Come on get involved....
Sunday, 15 February 2009
Hospital on Monday, which was the usual long wait but the time passed as I met up with a couple of friends that I used to dialyse with!
I then spent Tuesday doing some uni work, fun fun fun! Wednesday I got up early and went to the hospital again, this was for blood tests as the level of Tacrolimus (anti-rejection drugs) was too high in my blood. I was only in the hospital for 10 minutes which was great! I received a phonecall later that afternoon to say that my Tac had to be reduced and so did my steroids (which is good, as I might start looking less like a chipmonk soon). That night I caught up with some more friends that I used to dialyse with, one who has been lucky enough to receive a transplant and one who is still waiting. We went to Fuxion in Elsmere Port for an all you can eat chinese buffet, which was delicious!
Thursday I submitted another piece of Uni work and spent the morning with Abigail and the afternoon was spent baking and decorating cakes for the Live Life Then Give Life Cake sale!
My mum and I sold the cakes in the staffroom at my old school, it was fab to see all my old teachers and they were surprised to see how well I looked! Even more fantastic was that everyone was so generous and we raised over £115 pounds!!! Here are some pictures from the day....
You can see more by clicking here.
In other news...
My surgeon has agreed to be filmed for my Battlefront campaign, along with Jessica Wales who is currently waiting for a double lung transplant, I am really grateful to them both. I am also trying to encourage some of the nurses on the ward to be interviewed and filmed too, I will continue to work on them!!!
Battlefront have also introduced a new feature on my page, it allows you to become members of my campaign, it would be great if you could visit the page and click join! My members currently stand at 303 and I would love it to be much higher if possible!
So plans for this week are; visiting the hospital for clinic tomorrow, it is also my dads birthday so we will probably go out for tea somewhere nice! I am at Uni on Tuesday and Thursday as well as being busy doing some Battlefront filming and research! All this will have to be fitted around some Uni work and work on my dissertation!!!! I am also treating myself and my folks to a night at the theatre to see Joseph at the Liverpool Empire! Soooo much to do so little time, I am really appreciating all the little things (and the big things) that I can now do post transplant, I don't know how I had time to fit dialysis in before! I am hopefully going to London next week to do some filming with my mentor Oli and Shaa (who I mentioned in a previous post) as well as the filming with Jess in Kent, which I am really looking forward to as we have never met. None of this would have been possible before... I am so pleased I can now use my new found freedom to help others who are in a similar situation to what I was in less than 4 months ago, by raising awareness of the importance of Organ donation through my Battlefront campaign....
Monday, 9 February 2009
Live Life Then Give Life is a non-profit Charity that rely on your generosity and support to enable them to keep doing what they do. LLTGL works hard to raise awareness about the greatest gift of all: The Gift of Life by informing the public about organ donation and to support those in need of a transplant. Without funds generated by people like you, we cannot carry out the work, talks, presentations, campaigns and support which we need to do to raise more awareness and save more lives.
This valentines day How about doing something different? How about using Valentine's Day to do a good deed and make a difference?
Brighten up the day before - Friday 13th February - with a red-themed cake sale!
By selling your baked goodies in aid of LLTGL you can help us help the thousands of people out there desperately waiting for a transplant that could save their lives.
To find out more and to download promotional materials visit The Great Valentines Cake Bake page or join the facebook event!
I will be sure to post pictures of my cake sale, which I am holding in the staffroom at my old school! Will be great to see all my old teachers, should be lots of fun and hopefully they will notice a difference in me since my transplant!
Before I go there is another great way to support LLTGL for me to tell you about if you are buying flowers why don't you visit http://www.bunches.co.uk/aff/lltgl. If you follow this link LLTGL gets 10% from each bunch of flowers sold!
Sunday, 8 February 2009
Well filming for Battlefront began on Thursday... Rosie and Tom from the team arrived at 12.00noon and we got cracking straight away! We did an interview in my room and then the "cribs" tour of the house, going into each room and looking at funny things, whether it be related to Battlefront or me in general, so that was quite amusing! At this point my folks and I didn't know if we were going to make it down to London as it was saying on the news not to travel as the snow was really bad there! Thankfully we heard the roads were clear and Rosie and Tom left and so did we about half an hour later! I was a bit apprehensive at this point, as I have not travelled this far since being diagnosed with Kidney Failure 4 years ago, as I was never really well enough to travel and often got travel sick!
So we set off and the journey was fine, we stopped at some services along the way and had a bite to eat and eventually arrived at the travelodge around 8.30!
The next morning we got up early ready for a busy day of meetings and filming, the journey into London was a bit of a nightmare, it took us over 2 hours as there were delays due to signals failing! But we arrived in Camden town and Mum and Dad left me with Rosie and Tom, ready to meet my mentor Oli Barrett in a cafe up the road!
I was nervous at first, I didn't know what to expect! I was soon put at ease, he is a lovely chap, really motivating and inspiring! We talked about the aims of the Gift of Life campaign which are;
1. To raise awareness of Organ donation and educate people on the importance of it, clearing up misconceptions along the way.
2. Get as many people to sign up to the Organ Donor Register as possible
We devised an action plan and certain things to focus on including creating a viral game to encourage more people to sign up as well as national sign up day which will hopefully involve some celebrities! Oli asked me ideally who I would like and I said Take That in particular Gary Barlow, visualise it and it will happen Oli said so fingers crossed hey! I can wish anyway....
I don't remember how long we were talking for, it went by in a flash and I was so engrossed in the conversation that I completely forgot to take notes!!! I left the meeting feeling like I needed to get cracking and go and do a million and one things! Oli was really supportive, passionate and motivating, it's great to have him on board and I'm looking forward to our next meeting and working together to get more people on the Organ Donor Register!
So after that we left the cafe and headed to Waterloo to meet the fabulous and also insiprational Miss Emily T! I haven't seen her since my transplant, so we had a lot to catch up on! Emily did (and is continuing to do) a great job in helping me with my campaign, it's great to have her on board as I know she is as passionate about this subject as I am! There were lots of giggles and chatting, as well as a massive chip butty (you can see evidence of this on my Battlefront page when the video goes up)! Filming with Emily was great, I think the more people hear personal stories about people receiving transplants and waiting on the list the better, they are more likely to do something about it!
Mum and Dad then came to meet us at the cafe and spent the afternoon with Emily while I went off with Rosie and Tom to meet up with Oli again, he wanted me to meet with someone that afternoon! I wasn't being told much about who it was or what was happening, I was intrigued! We went to a place called 1 Alfred Place, a posh members only club (I felt a right scruff bag when I went in)! So I met up with Oli there who then took me over to another set of offices (the home of smarta.com) where I met some other really helpful people including Shaa Wasmund...
Oli and I quizzed her on the best way to get the message about my campaign out there... she said the two main things were to get a celebrity on board and to get it into the media! We didn't film with Shaa but she said she would be willing to be filmed in the future if we needed too, which is great! But Shaa wasn't the person Oli had planned a meeting with, that just happened by chance. The person he wanted me to meet was the founder of Bebo Michael Birch!
What a great person to ask about social networking sites and how to get my campaign out there! It was fascinating chatting to him, he was really down to earth and helpful. He liked the idea of a viral game and suggested ways in which we could promote the campaign and Organ donation! Oli finished the meeting asking Michael if he knew Gary Barlow, my eyes lit up when he said yes, turns out it wasn't THE Gary Barlow... shame!
So that topped off a really busy and inspiring day! I can't wait to get cracking on with the campaign and organising the sign up day!
I met up with Mum, Dad and Emily at Waterloo (kindly escorted by Tom) we sat down for a quick cuppa and a chat but I felt like I could just drop off to sleep there and then. So about half an hour later we said goodbye to Emily and got on the train back to the travelodge... where I spotted a funny sign which said... "Peak hours may necessitate that you let other people sit on your lap"Thankfully no one did, well I wouldn't have said no to Gary Barlow!
We got back and had an early night ready for the journey home yesterday! We were originally going to back into London but I couldn't face the journey back in. Hopefully it won't be too long before I am back down again and can do all the touristy things! Instead we stopped off at Windsor for a bite to eat and a walk round the shops... I'll leave you with a few pics...
What a tiring but fantastic trip, I would never have been able to do this before my transplant... I must have walked miles! I remember the last time I went to London I was one of those people standing on the right of the escalators, this time I was on the left walking up the escalators! Little everyday things like that, that people take for granted... thanks to my donor and their family I can now do those things!
Saturday, 7 February 2009
So there is a new video up on my Battlefront page...
It is an emotional video where Sammy-Jo talks openly about her friend Sam who suffered from Cystic Fibrosis and was on the waiting list for a double lung transplant. Sadly that call did not come in time and Sam didn't make it, she died waiting.
You can watch the video by clicking here
This shouldn't be happening, people needlessly dying, it may have been prevented if more people signed up to the Organ Donor Register!
You are more likely to need a transplant than to ever become a donor after you have died.
So do something today.. sign up and save a life!
Visit my Battlefront page to sign up to the Organ Donor Register and find out more about my campaign!
PS - Thanks Sammy-Jo for agreeing to be filmed, I can't imagine how difficult it must have been for you.
Tuesday, 3 February 2009
I got lots of uni work done but still loads to get through! Talking of which, I passed my first assignment! A position paper on childhood obesity, I was a bit worried that I wouldn't pass as I did it not long after I was discharged and my head wasn't the clearest at that time! Anyway 1 down many more to go (including my dissertation!)
Other stuff going on....
I'm attempting another trip down to London this week, Battlefront are doing some filming at my house on Thursday and then I'm traveling down Thursday afternoon for meetings on Friday! It's very exciting stuff, really hoping to get the campaign moving! With its two main aims to educate people on the importance of Organ Donation (clear up myths and misconceptions) and to of course get as many people as possible to sign up to the Organ Donor Register! Hopefully culminating in a big event, not sure what it will consist of yet, but it will have to capture peoples attention and imagination! Feel free to throw some ideas over to me... they will be gratefully received!
Also another favour to ask... If you are reading this and are waiting for a transplant, would you be willing to be filmed to help me with my campaign?! Get in touch if so... either via here, the Battlefront page or you can email me at the address on the right hand side!
Thanks in advance, and I can't wait to update you on my trip to the big smoke and give you the latest on the campaign!