Well as you may have noticed I'm not on the "kalydeco high" I want it back! Feeling a bit beaten at the moment, pretty tired a lot of the time, chest feels so full!
It sometimes crosses my mind weather the hospital have made a mistake and maybe I don't have the G551D gene...I do snap out of this train of thought!
I just feel pretty let down at the moment from K and I feel stupid for even thinking like this as my lung function is still 20% and that's way better than it has been before!
Just want that burst of energy, I want that high, I want to not constantly be coughing up, it's secretly getting me down a bit now! Wanna rewind to the first two weeks of K!
I started using my oxygen again at home sometimes, and at times it has given me that burst of energy to witch then Iv completely blitzed the house clean... When I write stuff like this I then feel stupid for complaining and being negative cause lets face it I couldn't tidy the house before even if I had been on oxygen!
Think my expectations are a bit high, lets face it my lung function is still only 20% I think I just need to adapt and go with my body instead of feeling let down by it! However I refuse to settle for this! I want to be running around like a loon again, and I'm on a mission to get to the gym!!
Think the stress of the wedding isn't helping...god knows what I'd be like trying to organise a massive wedding!
Holiday next week so maybe a good bit of Spanish clear sea air and lots of sun will do the trick! Also need to put weight on I'm looking skinny at the moment and don't feel good about myself at all!
A pretty depressing blog!
Sorry haha il try be more upbeat in the next one....
Monday, 24 September 2012
Wednesday, 19 September 2012
plodding along...
So my last blog turn into a complete rant..sorry about that, back into reality now and not focusing so much on being the "ill person" means things begin to pee me off again! haha
So i finished my two week course of ivs end of last week and was up at the hospital on friday to have lung function and fit to fly tests done!
well my appointment was at 9.30am which was hard enough as it is being up that time, let alone being in london and about to basically do a work out for my lungs!
i havent done proper lung function with all the fancy machines since may 2010, i find them so much harder than the usual ones you get in clinic, and they always push you soooo much its a killer!
my results from that came out that my lung function was 20% which was a bit disapointing, considering after two weeks being on kalydeco my lung function was 23% and pre ivs it was 21% so its not exactly going in the right direction at the moment..but it could be so much worse therefore i cant complain too much!
im hoping im just having a rough patch at the moment and this will pass and il continue to start increasing again, im still bringing up Loads than i did before K and the whole point of this tablet is to thin the mucus and mine is no where near thin yet so im guessing my lungs are still in the clearing out stage! its not even been 3 months yet! and lets face it, im not on oxygen and not in a wheelchair so that alone is a mega plus!
I caught a cold over the weekend thanks to mr Lee passing me his lurges!! haha so thats been a bit of a knock and still feeling pretty rubbish from that, poxy dry cough, headaches, feeling exhausted- no fun!
Had some really sad news also this week, a childhood CF friend sadly passed away peacefully in her sleep early hours of the morning. this came as a bit of a shock to me as i was unaware that she was so unwell and hadnt seen her for many years, we use to go to the same hospital as children but as adults i went to the brompton and she went to frimley, so the last time i saw her was in our local shopping centre where she use to work in mc donalds! she was always a bundle of fun and as a child myself her and bianca would get up to mischef on the childrens ward...running away from physios, hiding in cupboards, squirting the nurses with seringes full with water and throwing water balloons made with gloves at the nurses and staff!! and not forgetting the wheelchair races at early hours of the morning because we would refuse to go to sleep in our rooms!!
quite frankly we were little shits!! haha lots of good memories!
I think she got quite ill after having her little boy this year and never really recovered as well and had spent the last 3 months in hospital. my heart goes out to her family and her beautiful little boy which her memory will live on through.
This last 18 months has been horrible with friends losing there lives to CF, all young girls from the age of 18-26! its been so heart breaking and just shows how awful this illness can be!
how ever this gives me the drive to be more positive and fight harder!
i never thought 6 months ago id be feeling how i am today without a transplant or if id even be alive and no1 nos what the next 6 months will bring!
onto some less depressign news!.... finally wedding plans are coming together and i finally got my engagment ring! which i loveeeeeeeeeeeee so me!! and its so tiny, litterally the size of a 5p lol
heres a little piccy
xxx
54 days off the transplant list.
65 days on kalydeco
So i finished my two week course of ivs end of last week and was up at the hospital on friday to have lung function and fit to fly tests done!
well my appointment was at 9.30am which was hard enough as it is being up that time, let alone being in london and about to basically do a work out for my lungs!
i havent done proper lung function with all the fancy machines since may 2010, i find them so much harder than the usual ones you get in clinic, and they always push you soooo much its a killer!
my results from that came out that my lung function was 20% which was a bit disapointing, considering after two weeks being on kalydeco my lung function was 23% and pre ivs it was 21% so its not exactly going in the right direction at the moment..but it could be so much worse therefore i cant complain too much!
im hoping im just having a rough patch at the moment and this will pass and il continue to start increasing again, im still bringing up Loads than i did before K and the whole point of this tablet is to thin the mucus and mine is no where near thin yet so im guessing my lungs are still in the clearing out stage! its not even been 3 months yet! and lets face it, im not on oxygen and not in a wheelchair so that alone is a mega plus!
I caught a cold over the weekend thanks to mr Lee passing me his lurges!! haha so thats been a bit of a knock and still feeling pretty rubbish from that, poxy dry cough, headaches, feeling exhausted- no fun!
Had some really sad news also this week, a childhood CF friend sadly passed away peacefully in her sleep early hours of the morning. this came as a bit of a shock to me as i was unaware that she was so unwell and hadnt seen her for many years, we use to go to the same hospital as children but as adults i went to the brompton and she went to frimley, so the last time i saw her was in our local shopping centre where she use to work in mc donalds! she was always a bundle of fun and as a child myself her and bianca would get up to mischef on the childrens ward...running away from physios, hiding in cupboards, squirting the nurses with seringes full with water and throwing water balloons made with gloves at the nurses and staff!! and not forgetting the wheelchair races at early hours of the morning because we would refuse to go to sleep in our rooms!!
quite frankly we were little shits!! haha lots of good memories!
I think she got quite ill after having her little boy this year and never really recovered as well and had spent the last 3 months in hospital. my heart goes out to her family and her beautiful little boy which her memory will live on through.
This last 18 months has been horrible with friends losing there lives to CF, all young girls from the age of 18-26! its been so heart breaking and just shows how awful this illness can be!
how ever this gives me the drive to be more positive and fight harder!
i never thought 6 months ago id be feeling how i am today without a transplant or if id even be alive and no1 nos what the next 6 months will bring!
onto some less depressign news!.... finally wedding plans are coming together and i finally got my engagment ring! which i loveeeeeeeeeeeee so me!! and its so tiny, litterally the size of a 5p lol
heres a little piccy
also have my wedding dress just getting that altered this week cause im a midget lol, and then just to bring on the 3rd november!!
less than two weeks till im off to spain which i think im more excited about than the wedding hahaha cannot wait for gambas pil pil and sunning it up in the beautiful costa del sol!
think thats all thats going on in my little life at the moment. xxx
54 days off the transplant list.
65 days on kalydeco
Tuesday, 4 September 2012
Frustrated!!
Bit fed up at the moment. Don't seem to be on such a high from special K at mo! Feel so tired, no energy, no motivation!
I went up to the brompton the other day in my head to start ivs, as feeling like this made me think I might have an infection, it's so hard to tell these days as kalydeco brings up so much and gives me a few mixed signals...all so new to me..so knowing if I had a chest infection coming on was a bit tricky.
Well got up there and everyone still said how great I'm looking (health wise) and I have to remember that they been so use to seeing me with oxygen and in a wheelchair for the past year that although I was feeling bit rubbish that I'm a million times better than what I was months ago.
This was first time in years id come up to the hospital on my own...not that my mum neglected me lol I wanted to do it on my own like old times!
That again was a bit of a shocker for everyone think they were expecting me to say "she's gone to get a coffee" or "she's parking the car" lol
So did sats and blood pressure which was all good resting sats we're 95% on air ;) weight was 38kg lol stabilising could be better I suppose...
Then dr came to do me lung function it had dropped slightly from 23% last clinic to 21%....hardly worth worrying bout seen as though I was only 19% pre K so all good. I wanted to do home ivs as orals never work for me and wanna be best I can, and needed port flush anyway, so started on cef and Tobi home intravenous antibiotics (ivs)
They didn't bother doing x ray for some reason said they never bother for home ivs...bit of a shock for me as I always have x rays, did try get her to request one as I was intrigued to see what the difference was from now to pre k but she weren't haven't it, so gave up had bloods done though!
After a few hours waiting around for drugs and having first dose and getting assessed on how to do it even though I've been doing home ivs on and off since god knows how young they have to check each time or every 6 weeks! Lol I got my nurse to check my crp (infection levels) and to my shock they were only 20!! I couldn't believe it! After having ivs in hospital before I started kalydeco my crp was 70 odd when i finished ivs and I think for a normal well person they have to be between 4-11, so I was pretty over the moon about that...which made me doubt my decision for starting home ivs now...kalydeco is clearly working and maybe I should have held off the ivs until I over came this "bad patch" but I went with my natural instinct....
Although im feeling very zoned out at the moment weird how it can affect me the older I've got it happens a lot now, they make me sleepy and dazed and there not even strong ivs just standard normal ones! Also first time in a long time I've not had anti sickness iv with it!-So far so good so fingers crossed it stays that way!
I'm hoping il start feeling a bit brighter in next few days...feel like a drugged up breathless tired George at the moment and not particularly enjoying it...want my special K high back!
Something that's really starting to piss me off at the moment and can't help but write about it is certain CF people (mainly boys/men with cf) are talking about how fitness is the key to not being I'll and never having ivs or EVER being admitted into hospital....don't want to dig or come across as jealous...well to be honest yeah I am pretty jealous who wouldn't be in my situation...living a life without hospitals, admissions, needles agg after agg, of corse I envy that...but the thing that REALLY pisses me off is when they come out with comments like, "people who don't do fitness that's why there in hospital etc etc"
For the record I was in and out of hospital with endless infections before the age of 2 years old.... Now please inform me what child of that age or shall I say "infant" does exercise?? So how could I have prevented myself from these chest infections?
It's bollocks they get all high and mightly expressing these opinions and say how we must not have looked after ourselves, purely because they haven't experienced a life of cf like myself and many others...it's insulting and makes it look like we don't try or take care of ourselves or that we choose to be "I'll"
Plus it's a known fact that once cf girls hit teenage years with our hormones etc that it affects girls a lot more and can make them a lot iller.(sorry bad English)
One thing that's very hard to understand ESP as there is so little in the public eye about cf as it is, but there are sooooo many different levels of cf, not every person is the same and not everybody's experiences are the same.
so for those of you who have made stupid ignorant remarks, if you haven't lived a certain way...then you shouldn't comment about it or have such strong opinions!
Rank over! I'm off to sleep feel better now haha
39 days off tx list
49 days on kalydeco
I went up to the brompton the other day in my head to start ivs, as feeling like this made me think I might have an infection, it's so hard to tell these days as kalydeco brings up so much and gives me a few mixed signals...all so new to me..so knowing if I had a chest infection coming on was a bit tricky.
Well got up there and everyone still said how great I'm looking (health wise) and I have to remember that they been so use to seeing me with oxygen and in a wheelchair for the past year that although I was feeling bit rubbish that I'm a million times better than what I was months ago.
This was first time in years id come up to the hospital on my own...not that my mum neglected me lol I wanted to do it on my own like old times!
That again was a bit of a shocker for everyone think they were expecting me to say "she's gone to get a coffee" or "she's parking the car" lol
So did sats and blood pressure which was all good resting sats we're 95% on air ;) weight was 38kg lol stabilising could be better I suppose...
Then dr came to do me lung function it had dropped slightly from 23% last clinic to 21%....hardly worth worrying bout seen as though I was only 19% pre K so all good. I wanted to do home ivs as orals never work for me and wanna be best I can, and needed port flush anyway, so started on cef and Tobi home intravenous antibiotics (ivs)
They didn't bother doing x ray for some reason said they never bother for home ivs...bit of a shock for me as I always have x rays, did try get her to request one as I was intrigued to see what the difference was from now to pre k but she weren't haven't it, so gave up had bloods done though!
After a few hours waiting around for drugs and having first dose and getting assessed on how to do it even though I've been doing home ivs on and off since god knows how young they have to check each time or every 6 weeks! Lol I got my nurse to check my crp (infection levels) and to my shock they were only 20!! I couldn't believe it! After having ivs in hospital before I started kalydeco my crp was 70 odd when i finished ivs and I think for a normal well person they have to be between 4-11, so I was pretty over the moon about that...which made me doubt my decision for starting home ivs now...kalydeco is clearly working and maybe I should have held off the ivs until I over came this "bad patch" but I went with my natural instinct....
Although im feeling very zoned out at the moment weird how it can affect me the older I've got it happens a lot now, they make me sleepy and dazed and there not even strong ivs just standard normal ones! Also first time in a long time I've not had anti sickness iv with it!-So far so good so fingers crossed it stays that way!
I'm hoping il start feeling a bit brighter in next few days...feel like a drugged up breathless tired George at the moment and not particularly enjoying it...want my special K high back!
Something that's really starting to piss me off at the moment and can't help but write about it is certain CF people (mainly boys/men with cf) are talking about how fitness is the key to not being I'll and never having ivs or EVER being admitted into hospital....don't want to dig or come across as jealous...well to be honest yeah I am pretty jealous who wouldn't be in my situation...living a life without hospitals, admissions, needles agg after agg, of corse I envy that...but the thing that REALLY pisses me off is when they come out with comments like, "people who don't do fitness that's why there in hospital etc etc"
For the record I was in and out of hospital with endless infections before the age of 2 years old.... Now please inform me what child of that age or shall I say "infant" does exercise?? So how could I have prevented myself from these chest infections?
It's bollocks they get all high and mightly expressing these opinions and say how we must not have looked after ourselves, purely because they haven't experienced a life of cf like myself and many others...it's insulting and makes it look like we don't try or take care of ourselves or that we choose to be "I'll"
Plus it's a known fact that once cf girls hit teenage years with our hormones etc that it affects girls a lot more and can make them a lot iller.(sorry bad English)
One thing that's very hard to understand ESP as there is so little in the public eye about cf as it is, but there are sooooo many different levels of cf, not every person is the same and not everybody's experiences are the same.
so for those of you who have made stupid ignorant remarks, if you haven't lived a certain way...then you shouldn't comment about it or have such strong opinions!
Rank over! I'm off to sleep feel better now haha
39 days off tx list
49 days on kalydeco
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