Wednesday, 4 May 2011

Raising Money and Mix-ups.

Since my article in the newspaper last week, things have gone pretty mental.

Firstly, the Evening Star newspaper have chosen CF Trust as their charity for the press ball in June this year. Last year they raised £13,000 and are hoping to do the same again for CF! The editor has also invited me to the event, which is fantastic. So plenty of money will hopefully be raised!

Secondly, Ipswich Pub Poker, which is a non-profit organisation, supports local charities each season. Every player from each game gives £1 to charity and £4 towards prize money, last season the pub I play at (which is one of about 20 pubs) raised £218 for charity over the 14 weeks and the finals day raised around £2000.
As I said they only support local charities so wanted this seasons charity to be a CF unit in Ipswich, however, there isn't one in Ipswich, so they have chosen Papworths CF ward, so all the money will go directly to people affected by CF, hopefully this will be able to help make hospital stays a little more tolerable for those of us who attend Papworth and the money will be used appropriately!

So that is a lot of money being raised as a result of my article! :)

I was also in the paper again tonight as a follow up to my last story, basically it's about me talking about the reaction I've had and how many people have signed the donor register because of my article.
You can read tonights article here:

The Evening Star have also been in contact with the CF trust and the Ipswich Support Group, where they are going to do a big piece on the importance of being a donor and campaigning for more people to sign the register, quotes from my blog and things I've said will be used in the article and hopefully will help make a difference!

I'm already amazed at what has happened so far and it's also giving me something to focus on, I know I'm very unwell and there isn't much that can be done to save me apart from a transplant, but if I can help to try and raise awareness of the importance of organ donation, so that nobody would face the uncertainty I do, or by raising money for CF, I could help towards a cure being found, then in the future lung transplants wouldn't even be necessary and nobody would have to suffer the way I and others in my situation, currently do.

I'm so happy that I decided to make my blog public, it was honestly one of the best decisions I've ever made. I feel like I have people there with me every single step of the way, people are wishing and urging me to get the weight on so I can be listed and hopefully, receive my transplant! I've never felt so determined in my life, I have so much motivation thanks to all the support I have gained :)

In other news, I'm not in hospital and I haven't got an appointment for my feeding tube. There was a mix-up at Papworth and they forgot to book me in for a PICC line (so I can have IV's) and haven't made any arrangements regarding having the tube.
They rung this morning to say they have arranged for me to have my PICC next Wednesday and we have sorted an appointment with Addenbrookes on the 17th May for a consulation regarding the tube.

Things never run smoothly but I will now sit here for another week where my life slips away a tiny bit more. I am now at the point where getting up off the sofa is completely exhausting. IV's aren't a cure, but they sometimes increase my lung function and make me cough less, so I don't feel so ill.
Unfortunately, I have to put up with feeling this bad for another week at least. I'm not going to moan and complain about feeling ill because people don't want to read about negativity and I hate feeling like my blog posts are full of misery.

I will continue keeping this big smile on my face, even though it's a million miles away from what is really going on inside!!

In the mean time, I'm looking into starting a Psychology course at the Open University to occupy my boredom and keep me from going insane and sitting in all day and night being constantly reminded of how unwell I am!

Thank you for reading!

1 comment:

Gemma said...

Hey Kerry, you're doing great raising awareness. I hope you get your picc in ok next week and the IVs help a little. If you need any help with your psychology course give me a bell! I might even have some books you can have as I have no use for them anymore! xx