Saturday, 6 June 2009

I'm still here!

Yes it has been a while...

If I don't blog it can only be a good sign, it means I am busy enjoying life and not spending as much time sat in front of the computer!

I'm not going to write to much about it here as it is personal but I wrote to my donor family, it was the hardest letter I have ever had to write but I am so pleased I wrote it and even more so when I found out (from my transplant coordinator) that they had received it and were so grateful for it and wanted to pass on their thanks to me. I am so thankful to them and they are never far away from my thoughts.

On the health front, I went for blood tests on Wednesday I was hoping to hear that they could reduce my steroids but a phonecall that evening showed my Tacrolimus (immunosuppresant drug) levels were too low at 5.4 (It has to be between 6 and 8) so they had to up my dose of this, this now means that I have to wait again for it to be stable before they can reduce my steroids! Everthing else is fine though... I will soon see if its not as I am off to clinic on Monday afternoon! I'm a bit disappointed as this is one of the days we look after my neice and I usually snuggle up with her on the sofa for an afternoon nap! Ah well may have to have a morning one instead!

I am enjoying reading NON university books at the minute! And I am on my 3rd in as many weeks, the first one I read was "The Self Preservation Society" which was ok, not the best book I have read but it was a nice easy read. The second book is the best book I've ever read "My Sister's Keeper" the theme running through it is blood/bone marrow and organ donation! Its full of many moral issues, I won't spoil it here, you will have to read it yourself to find out what happens! If books and reading aren't your thing then you will be pleased to know that film of it is being released on the 26th June, you can see the trailer for it here. I'm really looking forward to watching it and seeing how it differs from the book. A fellow LLTGL advocate came up with the great idea of writing to local cinemas to ask if they would be willing to display organ donation leaflets in their foyers to coincide with the release of the film, so I will be doing that. I am hoping to send out 10 on behalf of LLTGL and 10 on behalf of The Gift of Life.

I have been doing research over the past couple of days for my meeting with the Department for Children Schools and Families. I am nervous but excited about the meeting and I have been reading up on what the DCSF have already put in place to promote organ donation in the past. I hope to praise them on their work so far and suggest what may useful for them in the future and hopefully see how we can work together and support each other in getting the message out about how important organ donation is to the younger generation.

I'm off down to London early on Tuesday morning for a meeting at 2.30, my mentor Oli Barrett is coming with me, so it will be great to see him again. Me and my folks are then hoping to see a show in the west end that night by getting last minute tickets from the box office in Leceister Square. Then back home on the Wednesday... I will be sure to update you next week about how I got on at clinic and how the meeting with the DCSF went.

1 comment:

  1. Congratulations on making contact with your donor family, that initial letter must have been difficult to write. My donor's sister first made contact with me just a few months after my transplant and now we email each other on special occassions or with updates. Each time I write it becomes a bit easier, but it's still difficult. I sent my donor's sister a long overdue update on my progress yesterday and some photos of me.

    Sorry to hear that your steroids can't be reduced yet, but hopefully it wont be long now. My Tac level has been quite stable for a while now (my target is currently 5 to 8), but I remember when it used to vary greatly. I hope your clinic goes well on Monday.

    I think I am going to see My Sister's Keeper when it's released at the cinema, but need to find someone to watch it with as I think it would be too sad for my mum. I like the idea of asking cinemas to display organ donation leaflets in their foyers. My local cinema is a big multiplex so I think I might write to them about it.

    Good luck with your meeting with the DCSF on Tuesday, but I'm sure it'll go really well as you're so prepared. I look forward to hearing about it later next week. I hope you can get tickets for a west end show :)

    Moll x x