Friday, 29 June 2012

little catch up

Well iv now been out of hospital 6 weeks, which is the first time since last August!! Since then iv been in Papworth every 3-4 weeks.. So I'm happy with this!! :) Iv got clinic Monday and will be doing my lungfuction for the first time since my PEG op, when I last done it it was 22%, although at that time I had tonsillitis and a very sore mouth so it hurt to do it, I'm hoping that's why it was so low, I'm usually around the 30% Mark. The last few times iv been to clinic iv avoided doing it because iv been to scared for the results, but I do need to do it now. I need to know where I'm at now. This last week iv been very tired and sore, my chest has been aching where I'm coughing a lot. I haven't been sleeping well, i wake up coughing every night, I don't remember the last time I slept all the way through. So where I'm coughing its aching my chest and iv also pulled a few mussels in my back which is hurting like mad. Iv been sick a lot from coughing which is giving me belly pain, AND strangely my eye is hurting from coughing!! My eye?! Lol I don't know how but it does lol so this week Iv just been exhausted from all this aching and nit sleeping. I think maybe il be going in pappy soon for some ivs, get a bit of a rest and a boost :) So I got my date through to see the transplant team :) Friday the 13th! As soon as I heard the date I thought great, of course I would get that date lol I was worrying about it for a while, I know it just a date and I shouldn't be silly over it but I couldn't help it, I got diagnosed with cf when in was 5 on Friday the 13th, but my dad said to me 'it's lucky I found out I have this then, cos if I didn't I wouldn't be here' which is true so that's made me feel better, and it's also in transplant week which has got to be a good thing :) Il post again after my clinic :) thank you for reading! Xxx

Monday, 18 June 2012

Just waiting...

Sorry i haven't blogged in a while, but iv had nothing to blogg about! 

I came home on the 19th May and have had one clinic since then..which is very good for me because normally now im starting to get ill and getting ready to go back in to hotel Pappy. 

My weight is just going up and up!! I cant stop (nor do i want to) it! Its amazing, having this PEG put in was the best thing iv done, so glad i did it too cos i got to a point where i really didnt want to go through with it..But its in and it works :D I was 6 stone on April the 23rd, and today im 7stone and 7lbs :D a stone and a half on!! wooo! The transplant team wanted my weight to be 7 stone before they do anything else... I rang them 4 weeks ago to tell them i was at my target weight now and they said they would phone me that day and tell me whats going to happen next.... i still haven't heard a thing from them!! I rang them twice more and they said the same thing 'we will ring you back' and nothing. So i rang again today and got the same thing said, im not happy now, iv waited 4 weeks to find out what to do now and in them 4 weeks i could of had tests done and be out on the list by now! Its time being wasted. Iv done what they wanted me to do now its there turn. Im starting to think il never get on the list now.

Iv been using my Oxygen when walking for long amounts of time now, Me and Ben went Cambridge shopping and i used it then, brought myself a new bag for the Oxygen cylinder to go in :) I was nervous using it, i had visions of people staring and pointing at me lol but it was okay, i had a few looks, and had two women just stating at me as they walked past, then even turn around to have another look! that got Ben a bit angry, but i was okay with it which surprised me, i thought i would be breaking down in tears lol but i was doing good with it, keeping up with Ben walking normally not stopping or sitting to catch my breath and i even tackled the TOPMAN stairs!!! i hate these stairs and always avoid using them, but i done it! Got all the way to the top :) And we walked back to the car, normally i have a massive coughing fit where im sick from doing so much walking but nothing... not even a tiny cough :) it does help massively. I just got to use it around town next, haven't used it in front of people i know from around town yet, or sainsburys... thats my next step! 

Oooh we've ordered our new Car! Were getting an Audi A1 sport :) its sooo nice, we went for a test drive the other week and to pay our deposit, £849 for a £17,000 car isnt to bad! lol The car is all ready for us and we can pick it up on the 25th July :) were just thinking of a name for it now...Obviously has to be named after someone from Harry Potter! So far we have Albus the Audi... lol 

Nothing else has happened really, just going to keep bugging the Transplant team with alot of phone calls until i know whats happening next :) 4 weeks out of hospital now and still feeling good, next clinic is on the 2nd July, hopefully by then i will know whats going on :) 

Thank you for reading again :) xxx