Sunday, 23 December 2012

One Christmas wish...

On Friday I went up to the hosp to have my final flush and the needle that accesses my port taken out. I did a lung function too and my results were 77% and 105%!! :D so happy- great early Christmas gift! Now I can enjoy Christmas, New Year and the move whilst being able to breathe :)

Also, soooooo excited that I am going to start my dog grooming course on Jan 7th 2013!!! Cannot wait! It's a 20 day course and I'll be finished on 18th Feb- just hope I pass! So I've got to try so so soooo hard to keep well until that end date. Physio and meds are going to be done even more thoroughly than I already do them and I'm going to try not to over do myself..!

Only 2 days until CHRISTMAAAASSS!!!!!! EEEEEEKKKKK!!!! And 10 days until we moooove! Such an excited few weeks coming up :D Still need to pack a lot of things and give the house a thorough clean and paint a few bits...

* * * * * * 

I love giving gifts at Christmas, probably more than receiving them to be honest. If I could give only one gift this Christmas, it would be to a young woman called Kerry who has CF and is in desperate need of lungs. And I don't mean desperate as in she'll be OK as long as she gets them within the next 6 months or something; I mean desperate as in she needs them within the next few days! :( I've been following her blog (you can too, just look at my blog list --->) and her body is so exhausted and frail from CF, it's so sad and scary to read. She needs these lungs more than anything and it would truly be a Christmas miracle if she received them. If you read her blog, you will understand how important it is to become an organ donor. You will save lives. Please, if you haven't already and you agree with it, sign up to organ donation. There's a link on my organ donation page. It literally takes about a minute to do. Thank you, have an amazing Christmas!!! Lots of love xxx

Wednesday, 19 December 2012

2 weeks of IVs later...

I've had nearly 2 weeks of IV antibiotics to treat my chest infection and I'm feeling great. I am coughing a lot less, eating a lot more, and have more energy. Love the feeling after being on IVs <3 feel so well! Been eating really fatty things too over the last few days- bacon sarnies drenched in oil, pints and pints of milk, loads of angel delights, and I'm sure over Christmas I will be stuffing my face too :D Hopefully my good health will last a bit longer this time.

The doc has suggested I re-try Tobi through my nebs again. I haven't had it in about a year because I felt the effects were wearing off; however, now that I haven't had it in a long time there is a good chance it will be able to keep my infection at bay again.

It's 6 days till Christmas and 2 weeks until me and Al move into our second home!! :D can't wait. I'm also trying to get onto a dog grooming course for the new year. I really really hope I get on it, it's my absolute dream to work with dogs. If I do get onto the course, next year is looking gooooood!

----    BREAKING NEWS    ----

I've just heard that Kalydeco (the amazing new drug that is saving lives of people with CF with the gene type G551D) has now been made available for anyone over the age of 6 with the right gene type. This is down to the brilliant campaigning that families and the CF Trust have done to convince the government to let us have it. And my friend George told me that they are currently trilling another drug for another gene type. I'm not sure which gene type I am (need to find this out!) but either way it's the best news ever! Finally, we may be able to breathe <3


Saturday, 8 December 2012

bad week for breathing

This last week my health has gone downhill. I have been feeling so tired and coughing non-stop. My appetite has completely vanished and I'm only eating like one choc bar and one small meal a day. So I e-mailed the hosp and was seen yesterday; I had my bloods done and an x-ray, as well as the usual tests. My weight had dropped to 47.09 kg, not too bad thankfully as I let the hosp know as soon as I noticed such a decline in my appetite. My lung function was 57% and 91%- couldn't believe the 91 part! my oxygen levels were only 91% too. However, the CRP levels (the infection level in your blood) was only 57. A bad CRP level generally is anything about 70+ ish. I was really shocked with the results as I've been feeling so poorly. Barbara the doc decided it was best for me to go on IVs anyway, as she could see how much I was struggling. It was such a relief when she said IVs because I thought that she might tell me just to have oral meds, and I know by the way I'm feeling, that orals wouldn't do much.

Anyway, so now I'm on Meropenum IVs again and resting lots and lotssss! Fingers crossed I'll be better for Christmas :)

Other than health stuff, we've started to have people view our flat for next year, and Alex decided on 2nd Dec that it would be a good idea to pack up the house- even though we're not moving for another month! So we're now living out of boxes :/ Cheers Al. xxx

Saturday, 1 December 2012

Ups and downs of the week...

This week has had a lot of highs and lows. A high was seeing my friend Ashley and staying at her uni overnight. We always text and call each other and stuff, but hadn't actually seen her in months, so it was good to catch up :D

Then a low was that my health declined a lot this week. Coughing constantly and now need my wheelchair a lot if we're going out. Sadly my appetite is going too, but trying to force myself to eat as much as I can to keep my weight stable, at least. I have a docs appointment in 17 days so hopefully I can keep rested and as well as possible until then, then maybe get some oral meds from them for over xmas.

A high point was getting our new place! We'd seen a few that were so small and un-homely. Then we came to "the one"! It's being refurbished at the moment and when we were there, the builders were finishing putting up lovely wallpaper in the bedroom and were about to start putting up the brand new fitted wardrobe. The place is bigger than ours at the moment and there are cute little features, like the fireplace and the lights- we have a chandelier! :P Can't wait until we move in.

Then as always, when money's tight, Steve our car broke down. Thankfully it was right outside Al's mum's place, but it has added to the stresses of life at the moment :/ Should be getting it fixed today- fingers crossed.

The final high is that today we can start ADVENT CALENDERS!!!!!!!!!!!! :D eeeekkkk not long till christmas!!!