Sunday, 2 December 2012

How Things Change In A Year!?


so im sitting here in my hospital room and cant sleep so what better time to blog!

In my last blog i was waiting for a bed in the lovely hotel brompton!
iv now been an impatient for 1 week! :) and i have to say this is one of the quickest turn arounds i think i ever had in my whole life!! i was a completely different person after 2 days!
i almost felt like i was a massive "faker" but thats not the case my infection levels were 112 so there defo was an infection.
my lung function starting ivs was at 24% which is new score for me since starting Kalydeco! i havent used oxygen at all this admission...i dont even have the connections in my room for it, my sats have been 96% and my resting heart rate has been 74!! thats incredible, all this considering i have an infection!

knowone knows who i am, hardly anyone has seen me since starting kalydeco...there use to seeing a frail little girl in a wheelchair and on oxygen and who barely left her room the whole admissions...now they have me bopping around the ward at 100mph without oxygen or getting out of breathe, a different surname....and someone also poitned out ive changed my hair colour! so unless im face to face with people or i say hi first knowone reconises me or comes to say hello!

its been a massive eye opener for me really, i mean i know how much better i am but when i hear it form other people and see there shock on there face to see me looking so well you dont really realise it! someone said to me, they have never seen anything like this before...someone get so unwell and see them gradually decline to then improve sooooo much, without a transplant, but even then they dont see them post tx! so i really am a rare species now ;) lol

i always said i would prove them wrong and im proud that i have, and this is only the beginning!

i saw my consultant for the first time since starting special K and ive been wanting to see her since two weeks post starting k! thats when i felt so good straight away and showing off my new lung function, but even then everyone was a bit unsure about how long this would last or if that would be it...
she didnt give much emotions away but i knew she was so pleased, her attitude towards me had changed esp reguarding transplant, before i was convincing them that if i improved i didnt wanna risk a tx yet....but talking to her about it the other day and saying how i feel now about not wanting to go back on the active list was one of the easiest conversations i think ive ever had, she totally agreed with me, she can see my improvements and as my lung function continues to increase, even if its not 10% at a time every little improvement makes the biggets difference, it would be mad to go back on.
they said to me before starting this drug that it was here to stablise me and not take me off the transplant list, im so glad i proved them wrong!
(bit of rank mucus talk but if your interested in the changes of kalydeco its interesting information!)
i also told her how ive been bringing up lots of plugs, thick hard bits, she thinks now that my little air ways that have been clogged up with really thick mucus are now starting to move and unclog because the cloride or something is losening it up. so if that is the case my lung function should increase or thats why my lung function has increased and why i can breathe alot better.

i find it facinating how this drug is working in my little body, and im so thankful that ive been given this chance, its basically saved my life, without this drug who knows if id even be here right now after the way i was declining....my lung function had gone to 12%..thats 12% of my lungs i was using...makes you wonder how that is even possible? how could i survive with such little use... one more bad infection and it could have killed me...i cant even imagine that...and even knowing that this information is true i would have laughed at you if you had told me back then, im very strong minded and would never have given in!!

thinking back to this time last year i was going through my assesment and i was still adjusting to life, i spent alot of time indenial about my decline in health, from an outsiders point of view it prob looked like i dealt with it really easy, but i really didnt.
i use to cry myself to sleep at night worrying about what would happen and the risks of transplant, sometimes i just wanted the floor to open up and drag me in, i didnt let on because i wanted to be strong and didnt want anyone else close to me or anyone to worry, and if i didnt cope well then how would they?...but i just wanted to be a normal 21 year old, i went through a stage where i wouldnt go out the house. i didnt want to be in a wheelchair or on oxygen, people would stare at you and give you that feel sorry for you look- i HATED that, if i wanted to go shopping i would get my mum to drive us miles away out of the area where i didnt no anyone just so i would feel a tiny bit more relaxed and no i wouldnt bump into anyone, it wasnt even the fact i hated having it all so much, i just didnt want people to feel sorry for me or treat me differently or ask what had happened. just wanted to be normal george!
then other times i would just rebble and not use oxygen which would make things a million times worse, putting strain on my lungs didnt help and one 10 minture trip out with nothing on would end up making me house bound for days after.
everything was such a struggle and the hardest part was getting my head around it all. it all seem to happen so quickly, my decline was rapid form my lung collapsing in summer 11 to being on the list, scary really looking back- i eventually gave in and just went out with it all on, gave up even caring what people would think! still felt major awkward when i saw anyone i knew though!

then there was other parts of my life i wasnt happy with, i hated living in those flats, it was such a struggle trying to get from the carpark to my front door...and i refused to wear oxygen which again didnt help! i wanted a dog which i couldnt have in the flat, i wanted a little gardeni wanted my own front door, wanted to make my house my own and decorate and i couldnt do any of this. cause i was so unhappy with that, it didnt help with health either!

so looking back over this year my life has changed more this year than it has in the last 22 years!! lol everything i wanted in life i got in the last 12 months!
i got a beautiful bungelow
i got a gorgeous puppy
i got engaged
i got married
i got to go on holiday again
and obviously most importantly i got this amazing drug which has improved my life
and now im off the transplant list :)...FOR GOOD

all of this aside wanted to explain the realistic side of things too with kalydeco or not so much the drug but my life style.

people might think oh how comes shes in hospital again if she on this new drug that makes her well.
some people can be quite niave sometimes. dont get me wrong as you all know from me saying how amazing i feel which is true. but theres also the fact that i still only have 24% lung function compared to the normal 100% i could have if i was normal lol although im alot healthier than i was, i still have Cystic Fibrosis and unfortunately there is alot of damage already there that no matter what amazing drugs they make i cant undo 22 years of constent infections. so i do still get days or times when normal day to day challenges are hard like walking around or washing, and even if ive been out all day walkign around fine and coping fine...it means in that evening or next day im totally wiped out!
and im never the person to let on how much im struggling....even when its completely ovbious i am, you ask me and il reply "im fine" ha its like a reflex reaction lol

anyways just thought id add that little bit because i dont want to think its all a complete transformation because there are still days that are bloody hard work and i get the days where i think sod iti cant cope, but i wouldnt change my life for anything and if i can carry on like this how i am now for rest of my life without declining, then id rather be like this than have a transplant! because this life style im use to and it comes with alot less risks than tx :)

thats all from my little head tonight.

im having a ct scan on monday to compare my lungs from before kalydeco to now, i asked to have it caused im interested to see if theres obvious changes, hopfully il get some piccys of it, il persuade the nice drs or night staff to print it off or email to me :) oh and got to keep an eye on my sugar levels, had a little hypo yesterday my own fault hadnt eaten much and they dropped to 2.6...dotn really understand all these sugars etc but the nurses told me off for not letting them no, but they were busy and the only nurse that was free i hate with a passion so id rather suffer than get her help! haha

anyways laterzzz



  1. So happy that you proved the doctors wrong and dont need to be on the transplant list now! I hope your health and pfts keep improving xx

  2. It's been a hugeeeee year for you George and I am soooo happy for you. i can't even imagine how inspirational you must be for others with CF, reading this stuff must bring so much hope and confidence for their futures too !! Hope to see you again soon. Sarah Haskins xx ps you are a stunning bride !!!!!!!

  3. This is such an amazing blog post! I really hope Kalydeco can become readily available to all who would benefit from it!
    So glad u got to do so much this year!! Keep it up hon!
    Sam xx

  4. I've just read this post while sitting on my hospital bed waiting for my ivs to finish. It has brought a tear to my eye ( in a good way!) And, while "special K" won't work for me, it has made me hopeful for the future. Thank you for cheering me up on a very boring Sunday, seeing all the things you have achieved has given me a massive boost and I am so pleased for you.

  5. Thank you for posting your experiences. It really helps other CF people more than you realize. I am so happy to hear this drug works for you. I don't know you but yet, I know exactly what your struggle feels like because of this disease. Way to keep on fighting. People who get up and fight this disease make a choice everyday not to give up. You are an inspiration and you should be proud of yourself.
    Thank you for all your posts!!!!!!