Tuesday, 20 November 2012

Clinic Update (taken from Facebook post)

Had a very long, very exhausting day at Papworth yesterday for clinic as I had many tests done. (including a pregnancy test!!! As I've gained so much weight and been sick etc, it was negative thankfully lol) anyway I am still adamant I want to stay at home unless there was something such as another lung collapse, then I would have had no choice but thankfully no collapse! 

Pneumonia + flu it seems, either one has led to the other so I've taken a double hit. You'd think this would be enough (along with my broken wrist) but no there is more.... I also have a cracked rib from coughing so much, ahhh lol. Really come on life, keep chucking your obstacles at me - I will keep beating them, I'm not going anywhere, lol.

Pap are liaising with my local hospice and GP so I can be cared for and ensure I can stay at home, my morphine doses have been dramatically increased so I'm high as a kite at the moment haha! But on a serious note, I'm not stupid and I know if I really need to, I will go into hospital, right now I'm still in a very poorly state, unsure whether I'm going to get better or not, I guess time will tell but I'm determined to get through it and have a great Christmas!

Oh and also, no bi-pap, tried every route, local hospital, gp, nobody can get me one :( so still without one, may end up looking into buying one! I know it could make a difference to my quality of life and I don't have that option :( so I don't know what to do, or where to go from here, I have my 6 month check up at Harefield beginning of Dec so will bring it up with them there, maybe they can help, also may be changing my care over to the Brompton hospital. 

Anyway, thanks as always for the support, it really is so overwhelming :') lots of love to all xxx

Thursday, 15 November 2012

Update on Kerry (from Josh her fiancé)

Hi guys it's Josh updating here on behalf of Kerry: 
We have had the GP come to visit Kerry today as she took a bit of a bad turn through the night and he has confirmed she has pneumonia which explains all her symptoms and he is helping her to get a bi-pap machine which should allow her to have a break from the exhausting task of breathing and it could have a good impact on her quality of life.
We also have the hospice consultant coming to visit tomorrow to see about making her more comfortable because right now she is struggling a lot. 
I know for a fact she is overwhelmed by all your messages after seeing the smile on her face every time I read her the kind, supportive comments from you guys, it really does brighten her up and keeps her positive head on, so thank you for that.
One thing for sure, as you all know, Kerry is a fighter (she doesn't know I've added this to the comment) but I'm so proud to call her my fiancé and even with everything she puts up with, she never ceases to amaze me with her positive attitude. And I want her to know that the puppies and I are so proud of how far she's come and the progress she's made despite the obstacles she's faced particularly this year (multiple lung collapses etc) and as two years ago we were told she wouldn't even be here right now so the fact she is still with us and her weight certainly wouldn't be where it is today,  just goes to show she really is determined to get her new lungs (or stubborn depending on how you look at it lol!)
With this positive spirit, the amazing support and the love from her family and friends, I know she WILL get through this x

Monday, 12 November 2012

An Update (taken from my Facebook post)

UPDATE: I just wanted to update everyone on my situation, I'm still extremely unwell with the flu and general CF too. I'm very poorly and we are all still unsure whether I'm going to get through this, it's extremely scary and with a lung function of 11% I can't take any more drops. My body is completely weak, exhausted and I haven't had the energy to even walk to the toilet the past few days. With the flu, it seems there are like 3 stages the first being muscle pains and high temperatures, the second phase is the same but with cold-like symptoms, now I've just started the 3rd week of having the flu, this is the scariest because it's the phase when you have the first symptoms a little less but you have literally 0 energy and are basically bed-bound. It's definitely true, I've barely left my bed or moved from the sofa, it's taken all my energy just to keep my eyes open at the moment :(

Already being as sick as I am with CF and feeling exhausted and
 sick most of the time this is proving to be exactly as difficult and scary as I imagined (and was warned by my GP and CF team) they have warned me this could be it for me if I don't get through it, but with all the hope and tiny amount of energy I do have I'm fighting, literally with everything I have. And to those who wonder why I'm not in hospital, it is because I have 'wishes' and 'plans' in place regarding end of life and I don't want my life to end in hospital, a place I've always tried to avoid and to end my life there would be against everything I wish for, I want to be at home, comfortable, surrounded by my loved ones, with my pups and I'm under the care of the hospice if things do go that way so we have plans in place - but I'm still positive, even with everything life is throwing at me right now, the flu, broken wrist and some other personal issues - I will beat it all and get through everything, no obstacle will get in my way - it's new lungs or nothing I'm afraid :D 

But anyway, I ask you all, please help me to get through this, pray, wish, cross yours fingers - whatever works, please do it and help me keep going strong because I'm still hopeful my lungs will come, a friend told me recently just when everything seemed like life was going to pot for them and they were slipping away, life was near the end, the call came, their new lungs came just in time. I'm hoping this is how it will work for me too. 

I'm sorry this post is so long but I feel I've let people down not updating my blog regularly or posting many status/replying to messages but now you know why, I'm probably asleep lol.
Thanks for the support and hopefully my next update will be better, either I've overcome it and beat the flu, or even better - I've got 'the call!'