Wednesday, 9 November 2011

Clinic and gerneral update

Ok so Iv been having a few hiccup with my pseudo, but to be expected. I went to harefield on the 24th and started a course of Cipro, it sort of helped but as soon as i came off it, wham back to how I felt before. I don't feel ill, a bit tired but then I am doing alot, which ill get to later, my lung functions not been greatly affected it did a small drop but its back up now, its the persistent cough, which everyone says sounds like my cf cough, so you can see It got me worrying. I'm also productive but its small plugs of flem that just rattle there all day and are impossible to cough up and when I do they are disgusting. So I went to see my cf doc today, my lung function was 97% fv1 and 91% fev1 which is great, but he is slightly concerned about the sound of my upper airways and its quit obviously getting me down, he prescribed more Cipro and pulmozym a neb which will break up the flem. Iv already raised my mucodine myself, which also breaks up flem but its  a tablet. So hopefully this will knock it on the head. I'm starting the pulmozyn in clinic tuesday as i have to have a trial dose.

Another thing that my mum and Stu have mentioned and I have noticed to, Its hard not to. My memory, It has become really bad, substantially so, I used to know roughly what lessons, class's I had in a day most of the time id be able to tell you exactly know, now i have to make a real conscious effort and even then I forget, I have students randomly turning up and i check my diary and apparently its not so random. I talked about it with my Doc and he checked all my meds for symptoms of memory loss, there arnt any. So the other thing it could be is ecmo and bypass. They believe It may have caused the problem, I suppose you could call it v minor brain damage. Apparently its happens in older people with heart by pass surgery but he hasn't heard of it with young transplant patients, but he did advise me to ask my TX doc when I see them next, but hes going to relay with them anyway. The other thing he doesn't know is if it will get better, so apparently Iv got to get on the wii and do some brain training.

Yesterday we had a meeting to discuss the charity bike ride, we have preliminary dates, the Charity's chosen, LLTGL, EDCF/CFT and Harefield hosp. We have all of my CF team taking part, my doctor is arranging the route as he is a cycle enthusiast, from there we need to arrange stop points, food, accommodation, then from January were holding an open meeting at the RD&E where people who want to take part can find out more. Were going for the more the better and were informing the local authorities so they can sign post the route warning cars about us. So its going to be big!!! Anyone can get involved, if you live along the route you can join us, as long as you get sponsorship. When more has been organised I will update you all.

Tomorrow I'm off to London, Iv been asked to speak at a seminar for junior doctors explaining my journey through transplant and how my quality of life has changed. I'm so nervous, but really excited to.I 'going to write a few questions down to prompt myself but otherwise I'm thinking off the cuff, My director Mel is coming to film as we are starting to film for a second documentary.

Which brings me to Donor family network, They are holding a event where lots of donor family's come and remember there loved one, theres a point where transplant patient's poems ect about there donor are read out, I'm attending to read a poem and piece about my donor and how they saved my life. I think this is going to be extremely emotional but a brilliant event and Mel is filming there as well.

Other then that I have been working out hard, 5 fitness class's a week,  LBT, core stability, 2lots of Stretch and tone, Fitball next week I'm doing 2 lots of LBT, I must be crazy I also do an hour cardio before or after and then one day a week I do a full 2 hour work out. Its going really well, I feel fit and it makes me feel good.

I'm Also back teaching pole, but wanting to increase the lessons I'm doing as I didn't start the charity fundraising job in the end I simply have to much coming up with the doc and charity work, so I'm doing more pole lessons as there more flexible and i can simple ram a load of lessons in one or two days and have the rest of the week free for all the media stuff I'm doing. I'm hoping to do some work experience in PR with RD&E, CFT and a possibly a hospital nr Harefield and I also have some behind the camera work, which My director Mel is arranging. So bizy bizy

10th chat
14th Zest
Reveal date not know yet
bbc news
This morning
TV times I'm presuming the week of the doc

Finally the ball, I have started arranging a ball, for LLTGL The ball is hoping to have some celeb comedians and great bands.

So I'm going to leave it there, I'm still waiting on Stuarts blog, hes finding it a bit hard, but as soon as he writes it I'm posting it.


  1. That cycle ride sounds like it's going to be amazing hun! And the ball - check you out, very impressive missus! x

  2. Memory loss is common, I've mentioned it a few times in my blog! It'll be the bypass machine. I forget lots, my short term memory is rubbish!!

  3. I had a kidney transplant 2 years ago and my memory is now rubbish. I've been told this could be due to the combination of drugs I'm taking including the immunosuppresants.

  4. I agree wiv Tori...memory loss is part and parcel for some of us and can be contributed to so many things. Its scary to admit but yeh. I was a primary school teacher and travel consultant pre transplant so my memory was pretty damn good. I work on it daily tho and has got loads better! I'd read about it pre transplant and so was prepared. Ive gone back to work and learned sign language, photography so I reckon can be worked on itjust takes tm :-)