Wednesday, 31 December 2014

End of 2014!



So I felt it was only right to write a final blog on the last day of 2014! 

Little recap from last blog. 

I left that admission on the 2nd dec, a little later than I hoped but I started to develope a cold towards the end of my admission and didn't want to end ivs until the latest I could, I had my cousins wedding I needed to be well for, I was determined to walk down the aisle without oxygen! So I left on the Tuesday on a small dose of steriods to get me thru the weekend and arranged a clinic appointment for the following Tuesday. 

It was agreed by myself and harefield that I would be suspended from the list from the Thursday until Monday. I wanted to enjoy the weekend without worrying and life has to go on, although I want that call more than anything I cannot put my life on hold, sadly people die waiting for organs and without sounding depressing I could be one of them and you have to make the most of life aswell, don't want to look back and regret and wait for something that may not happen! 

Anyways.....

I did it though, I walked down the aisle oxygen free looking normal :) , I was rough the Day before the wedding, constantly needing oxygen, the Lake District is a lot colder than sunny Surrey! But when it came to it, on the day I managed the majority of the day oxygen free, it was such a great day, and sadly went so fast! I flaked a bit in the evening, but my dress was very tight as fatty here had put on about 4 kilos since the alterations had been done haha, I spent a lot of the evening with back pain, but seen as though I wasn't on the transplant list I took lots of ibuprofen and paracetamol which got the thru the night! 

I woke up Sunday morning feeling awful, my throat felt like razor blades, I was running a temperature, sneezing, chest was so achy and painful and everything was such an effort! Oxygen didn't leave my side! Stupidity I told my husband to take the home oxygen machine back with him Sunday as I wasn't needing oxygen much-amazing how quick things can change within a few hours! Luckily I had about 4 tanks so they got me thru till Monday afternoon!  
Here's a few photos I have to upload from the wedding! Was lovely to have all the family together, I forgot how much I love the Lake District too! Air is so clear and the place is just so beautiful! 


So as I expected I needed to go back on ivs but as Xmas was only two weeks away and not having brought any presents I really didn't want to be admitted so started home ivs. 

Cut along story short they helped but not much, I needed to come in. I finished home ivs just before Xmas on the 23rd took needle out and booked to come into hospital on the 29th 

Had a lovely Xmas with all the family. We went up to my in laws in lovely Hampshire 
My parents and sisters joined too and had a few Xmas drinks, well they did I was mrs sober obvs! I got absolutely terrorised for wearing my cheesy Xmas jumper that lite up haha but I loved it... I looked "special" apparently and we had lots of fun taking group selfies with my selfie stick-which I would just like to point out I didn't get for Xmas! Ha 
Had lunch with the In laws and afternoon, then Spent the evening at my families playing frustration, with a choc fondue and watching eastenders Xmas special...well I forced the family to put it on! Ha 
Some piccys from Xmas day 


So now Xmas is all over, I'm back in Frimley hospital, I have OFFICALLY transferred here now, was weird leaving the brompton as I have been there since I was about 7 years old, I can't fault how amazing they have been to me, but my health is my top priority now and they have so many patients too look after up there, I need to know I can get into hospital when I need to get in, instead of waiting or fighting for beds, I'm not going to slate the ward or hospital cause they are good, but the staff are under so much pressure up there that the last few times I had been an inpatient, maybe even longer I just felt neglected. 

I also feel like after coming to firmley and how amazing the care is here, that I deserve to be at the best place for myself, got to be selfish, I'm at a stage were I don't want to take risks anymore, it's so stressful being up at the brompton, even just being in the middle of london, stupid things like parking etc you don't have that worry at Frimley, coming here I just feel so relaxed and I don't get angry at silly little things, I've constantly got visitors here, I suppose london puts a lot of people off which I don't blame them, the staff at firmley  are constantly checking on you in here, making you eat, got the joys of normal hospital aswell that you don't get at the brompton that seems so stupid but like a canteen you can go to, or a cafe by enterance with a proper shop that sells redbull  and lucozade so if no1s coming up I can put my oxygen on and go off for a little walk there, it's the little things. Lol 

It was defo the right move for me and all the staff up here are such lovely genuine people, there such a Good team and everyone gets on with everyone! And I love having the army doctors come in with there uniform on, so weird but cool! Ha 

So I am here for the new year,  but with crappy lungs there's not much id be doing on NYE anyways, Ive been really wheezy and tight which is unlike me, so they have upped my steriods which I'm hating cause they make me feel so swollen and neck swells up esp when I cough, I go like purple haha and wake up like a round sumo wrestler but as long as helps my chest I'm being good about it all. Hopefully can start lowering dose early next week and gradually start coming off them again, it's not something I want to be on long term quite yet! 

I'm not doing the whole new me new start, I'm happy with my little life, and the things I want to be new are out of my control! I hope for a healthy year and for things to get better and not worse. I wish the same for the people I care about esp a close friend of mine also waiting for new lungs! Every year I always say I want to help raise more awareness and never do, I may not be big on arranging charity events or doing stuff like that, I don't think that makes me a bad person, by doing this blog I suppose in one way or another it's raising awareness in some ways! But I do want to try more this year, even if it's just telling my story or experience if it encourages more people to donate to the cf trust or gets one more person to sign up for organ donation or just talk about it then that's helping! 

And lastly just want to say a little tribute to the beautiful Emily Thackery who sadly passed away this week. As many people know she was well known in the cf community and done so much for raising awareness for organ donation, she started the charity Live Life Then Give Life along with a friend! She was a great support to me back when I first joined the transplant list in 2011 and throughout the years. I'm so gutted that she didn't get thru her second transplant this past month and chatting to her back in November when things were bad she still was so uplifting and positive, people throw the inspirational word around a lot but Emily really was! Some people are just a ray of sunshine and she was one of them! A true legend! Her daughter will grow up to know what a great mummy she was and will be so proud of her! Rip Hun and my heart goes out to her family and close friends! 

Friday, 28 November 2014

Still in 5*hotel (hospital) Frimley Park!

Day 16.
Was doing great and still am, slight step back as bug season! 
Was due to be discharged on Wednesday, however started feeling feverish and cold like symptoms Tuesday morning so leaving with a potential cold would not be the smartest idea!
Most of the family have been unwell with colds so my mums had to keep away from me for a few days (which has felt like weeks) to get over the worse of it, so she wasn't giving it to me! 
But I don't think I quite escaped it, although mine is a very mild cold, but let's face it as soon as I would come off ivs, the first place it would hit would be my chest so with my cousins wedding a just over a week to go, it wasn't worth taking that risk. 

So now the plan is to stay here until Monday, they have changed my ivs  yesterday and I'm going to go home on some oral antibiotics to tie me over till after the wedding and then just have to see what happens. Be nice if I could get thru till after Xmas and new year but you just never know with these lungs! 

On the plus side my lung function is now 23% which I'm over the moon about, was worried I wasn't going to see that number again! Weight still on the low side but better than it was, it's up to 38.5kg, still aiming for my 40kg! 
I'm still off oxygen at rest at the moment which is so nice, sats sitting around 92%

Not a lot to report other than that, im still loving this hospital, the staff have made me feel like I've known them for years. 

I've nearly met everyone now, it's such a tiny unit but such a good vibe here, which is so good mentally when your stuck in hospital. I've managed to see loads of friends and family and easier for the hubby to get to this place, and easier to get someone to pop in with a mccy d's! Although loving the food here and have a weird addicted to their custard! Lol 

Looking forward to getting home soon though and getting all glammed up for my cousins wedding next weekend! 

Love love xxx
78 days re listed 

Monday, 17 November 2014

Welcome to Frimley Park Cf Unit!

Still Updating on the Health side of things...

The Brompton didn't have a bed for me and was looking to be at least a week until I would be admitted and there's no way I could wait that long! 

Hospital upset me a bit, felt like they thought I simply couldn't be bothered to start home ivs which is never the case, at this stage I'm not going to prevent myself from getting better, but I literally didn't have the energy to get up for 6am ivs and managing to draw the flushes up etc, it has been hard enough to do simple tasks like going to the toilet. 

Also my weight was only 36kg so couldn't afford to loose anymore and for the last 3-4 ivs I've had, sickness has really affected me and I've been put on drips for the first 24 hours of starting ivs, I don't have that at home, I don't have all the treatment to help me with sickness, also being sick takes up all my energy and wipes me out so how am I supposed to deal with all that and make sure all my other treatment is kept on top of. It's just too much to deal with. 

Home ivs are great when your needing a top up or after a week of being on ivs and everything is settled but was just not realistic option for me to start this time, yet I was made to feel like I was refusing to help myself from my hospital. 
So I was told to go to my local which is scary enough and don't trust the healthcare there one bit, when I was admitted last time they blocked my port , I had to flush myself as they just left me and hardly saw anyone wash there hands and I was put onto a ward and I'm so paranoid about bugs these days now I'm on the transplant list, can't have anything ruin my chances!! 

That's what has brought me to Frimley Park Hospital. They have a CF unit here that I have heard about before and know a few girls who go here so I thought well if Brompton won't have me il try get in here. 

So Wednesday I turned up to a&e with my mum around 5pm ish and was seen straight away, done my obs and was on oxygen had a bit of a coughing fit and my Sats dropped quite low and they rushed me into resuss, I knew I was fine it happens everytime I get a coughing fit but they panicked.

 They got me out of wheelchair and straight into bed then done everything to me, stuck a cannula in my arm, bloods, X-ray came to my bay bit, then whacked oxygen up gave me nebs constantly having blood pressure going off, my heart rate and sats made the machine constantly bleep, then they stuck me on fluids.
 Was all a bit mad...all I wanted was a bed on the cf ward 😜 lol can't fault them though the care was ace! 

I managed to avoid blood gases thank god! And then the cf consultant came to see me and it was a fimilar face! Chris he use to work at the Brompton, such a good Dr was sad when he left, he was the one Dr who supported me coming off the transplant  list when I started Kalydeco! Very real Dr you want an honest opinion you'll get it! Defo my type of person anyways so he's now working here so got me on the ward...well had to wait a few hours as my blood pressure was too low and heart rate too high, thankfully they adjusted the scoring otherwise I would never have left a&e lol my resting heart rate is always like 110+ lol 

So got onto the ward around 9.30pm 

So it's now Sunday night/monday and I'm loving it here. The care is amazing! They only have 6 rooms and its a specialist cf unit and there's only 2 of us with cf here. Infection control is so good, they even change my neb mouthpiece after every neb which I thought was a bit OTT but they said well you have an infection so you don't want to keep breathing same bugs back in, suppose makes sense. 

But the BEST thing about the ward is the food, non stop trying to get me to eat, they have a sweet trolley completely free all paid for by the charity. 
The nurses are so friendly and actually happy here, everyone gets on with everyone, cleaners, managers, drs, dietians etc etc there's no attitudes or people treating others differently! 
So nice. And there so friendly to my family and people that visit, offering them drinks. 
So weird getting head around it all so different to the Brompton. And they have specific parking spaces for us cf lot! 


So weird! So not use to this! Anyways I'm very happy here and hope im not transfered back to Brompton, there prob far too busy anyway so won't want to waste beds ESP if I'm in cf unit! 
One thing though, I'm missing my chats and sessions with the lovely Sarah on Tuesday's and Thursday's who does reflexology! She's like my therapist too, so only downside ESP as I have a good relationship with her! :( 

Anyways weather I should or not I've managed already to get off constant oxygen now Sats are 90-92 off them so ivs kicking in and weights gone up to 37.8kg and lung function 19% so after two weeks in here I should be fatter and healthier :) also so many visitors already love being closer to home! Takes pressure off my mum too! :) that's all to report right now 
Will keep it updated xx

Monday, 10 November 2014

2 months today re-listed!

Im terrible at blogging now, this post is so over due! il try keep it simple and not too boring but this blog is like a diary for me too look back on in the future as well so I like to go on ;)

Right so...

Firstly I had such a fun time at my cousins hen weekend, I left hospital on home ivs and the plan was for me to stay on them to keep me stable! and im so glad I did so I could enjoy the weekend, it was a very tame one for me, no drinking but lots of fun and giggles!


On the way back from the weekend I had a really strong chest pain start, I don't usually make a fuss of pains, you get to this stage of CF and having chest pains is quite common, that most of the time I barely mention because it just seems the norm now, its like coughing I wouldn't tell the dr every time I see them I cough a lot, its pretty standard.
anyways this chest pain came over so harsh and sharpe, it felt like I was being stabbed everytime I breathed and coughing was an horrible and exhausting experience, the pain just wiped me out.
nothing helped this pain either!!


Few days later, I had the long awaited phone call on the 10th of September to tell me that I was now back on the active transplant waiting list!


That week I got up to Lind Ward (day ward) to see drs, physios etc as this pain was too much to handle, they gave me some patches called Lidocaine, which were great but didn't really hit the pain much, just took the edge off it. 

The pain continued and over a week later I was struggling so much I started using oramorph which made me feel so sick then I couldn't keep food down and was blocked from the oramorph. 
Anyways long story short, I was admitted into hospital, I had to see the palitive care team to sort out pain meds and anti sickness, I left hospital over two weeks later but stopped ivs as I needed the break from them! 

Which brings me to now, I've managed avoiding hospital since the 9th October prob left it a bit longer than I should have! I thought at first I wasn't needing ivs I just had crappy lungs but for the past 2 weeks I've had night sweats which is usually a sign of infection for me! 

Before I headed for hospital I wanted to meet My cousins baby that was over a week late, luckily he came into the world a week ago today which was also 2nd wedding anniversary so an extra special day now the 3rd nov and we traveled up to Manchester to meet him, plus I needed to have a final bridesmaid dress fitting!
The belly cast I made for my cousin of her pregnant belly weeks ago! 

He's gorgeous, Sebastien Bentley De Le Vingne! 

So had hospital today and I was prepared to be admitted, had a bag packed and brought my duvet cover in car ready, but typically everytime I bring stuff up to hospital when I think there's a chance il be admitted there's no beds! 

My lung function was 17% which wasn't as bad as I thought, weight was really low 36kg :(, Sats were 93% on oxygen, had X-ray and bloods and they wanted me to start home ivs until a bed comes available, but I literally don't have the energy to do it at home, and I struggle so much these days with sickness and being dehydrated when I start ivs, I didn't want to make myself weaker at home! 
And I cannot afford to loose anymore weight at the moment! It upsets me at there reaction sometimes, I feel they think I just can't be bothered and don't want to help myself which is far from the truth. Anyways I'm on the urgent list to go in so see what happens hopefully get in this week, chuck them smokers out 😜

I have just over 3 weeks till my cousins wedding which I'm a bridesmaid for so need to be fit and well for that! 

That's all from me, il try not to leave it too long next time! X


Monday, 1 September 2014

Signed and Ready!

Just wanted to say that I really appreciate the fact that people even bother reading my blog, and again I'm sorry for my terrible spelling and grammar, but you get the jist of things! 

Anyways so I have been to harefield last Wednesday and I was surprisingly very calm and relaxed. I can't take credit for that completely. I may have mentioned in my blog before that on a Tuesday and Thursday we have this lovely lady called Sarah that comes onto the ward and does reflexology, for anyone that doesn't know what it is, I strongly advised you research it and find your nearest salon/place that offers it! 
Very relaxing and very good for your body. But Sarah is so much more than just that, she's emotionally helped me through the past month and I can say hand on heart my head wouldn't be this clear and focused without her! 

So I had my lovely mum stay with me the night before the harefield appointment, just made sense as we had to be there so early and get through london traffic. 
So had my morning ivs at 6am and off we went around 7.30 to harefield. 

Well we got there just after 8! Wasn't a single bit of traffic haha but was nice to be early and had a lovely full English in the cafe before the clinic! 
For anyone going to harefield or wondering about the cafe, it's lovely, always had great food there! 

Found out at the start of clinic there was only myself and another girl pre transplant being seen that day as dr carby was away. 
There was no surprise in clinic to spot which girl she was, the small petite young girl in a wheelchair was a give away, and everyone else was defo post transplant, all looked very healthy and full of life! (Always a boost seeing them, gives you a glimpse of what life could be like) 

Anyways because I'm an impatient at the Brompton and everything's on the same system, I didn't need to do X-ray. Had my bloods done, lung function and thankfully it was the quicker and easier lung function this time. 
Lung function came out at 22% so not too bad for me! 
Had ECG and then echo! 
Defo almost fell asleep having my echo, apart from the fact I was having my ribs and heart side boob poked with a hard jelly stick, it was so relaxing, dark and warm room and the sound of my heart beat now and then! After waking up at 6am I was exhausted! 

Then we was free until 1.30, so we poped to my aunties, who live near by and had some lunch and snuggles with my cousins baby until it was time to go back. 

I was worried about seeing the dr because I'm so used to dr carby, but the lady I saw was more than lovely. 
We went through how things have declined over the last 4-6 months and more so in the last month and we all agreed that it was time to be listed again.

Got a bit tearful, esp after talking about my fears and thinking of a dear friend of mine I lost after he received his new lungs, but once I had a good old cry I was ready to crack on! 

The transplant coordinator took me into another room after as I had to do my afternoon i.v drugs and we spoke a bit more about what happens next for getting me back on the active list. 

As I was on the list in 2011/2012 there wasn't any problems they thought about getting me listed again, but needed to check latest ct scan and make sure with surgeons, speak to dr carby, and do a few more tests, my favourite 24 hour urine collection!! 
Also because it's been over two years since I was on the list, I have forgotten a lot and felt like I needed to go through it all again so I know exactly what I need to know. 
As it was a lot to go through and didn't want to overload me with information she suggested that they come and visit me on foulis ward to give me time to read the booklet and be ready to go ahead and sign everything. 

Which brings me to today! 
I'm signed up! After a two hour meeting/conversation with Brian and tom, explaining every detail and procedure of the operation, the donor information, the recovery and general bits I need to know. Also answered the questions I had and many poped up! 

So now I just wait for the call to see when I'm listed again. I've signed the paperwork to say I will accept any lungs! 

Because I'm so small I have also signed that I will accept a lobar transplant, which means instead of transplanting a full 5 lobes, they can transplant 3 from a large person to fit into my tiny body! 

There was another option but I can't remember the name, something like a reduction transplant (not correct term) but means they can cut down lungs to fit me, or give them a trim! (I think)

And also they will add me to the children's list, as I have a child size body, if lungs become avaliable and no other child my size fits them, i will be considered. 
I might be small but I'm in a good blood group (A) and have no anti bodies 
If it's meant to be it will be! 

No doubt I will blog once I'm listed and the waiting game begins! Just need some new pjs and a little transplant bag ready for whenever that call comes!! My positive head is back on!!

Good news is my lung function today was 23% so it's going in the right direction, and should be released on Friday for lots of hen weekend fun! 

Was also my baby sisters 15th birthday today so we had a lovely evening finishing the day off with a lovely my old Dutch pancake down the kings road! 


Love love xx

Here's a few Piccys from tonight :) 


Monday, 25 August 2014

A massive catch up!

It's taken me a while to get my head around the last few weeks. I've wanted to blog so many times, it's all in my head, but didn't know how to word it. I'm not even sure I do now, so I apologise in advance if this blog doesn't make much sense!

Right so since my last post I've actually had my admission im in no and a 16 day admission after not lasting long from my last admission, think it was a month. 
Was struggling a lot, it was around the time when it was sooooo hot and humid and I physically couldn't handle the heat. 
I spent most of my days before being admitted, laying on the sofa attached to oxygen, when I really would rather have been out enjoying what I now know was the last of our British summer. 

I was admitted with lung function of 15% rubbish sats dropping down in the 80s, no apeteite etc etc the typical cf crap sign of infections, crp of over 100s.
Things didn't pick up at all for the first two weeks and finally after starting hypotonic saline my lung function increased to 25% and few days later I left. 
But this time I felt weaker, the whole admission I was asked when would I be visiting harefield next, and that I should be thinking about the transplant route again,I felt very emotional the last admission, everything seemed to be taking longer, recovering from infection, my energy levels, I needed oxygen again to walk about even when well. 
And gettin my head around it all was one of the hardest parts, I just cried 80% of the time and if you know me well! I'm not a cryer! not because I don't feel emotions! I just talk things thru a lot with people closest to me, so I don't bottle things up therefore crying doesn't happen :) not this time, with all the talking, it made the crying happen more....one big cry baby hahaha
When I tell peopl this, a lot of people have asked me if the new drug (kalydeco/ivacaftor) isn't working anymore, that's not th case, I just have very damaged lungs and unfortunately the drug doesn't undo damaged that is already there! I am and always will be so very greatful for these past two years extra I have had being on kalydeco, I've had the best two years and appreciated my life so much! So whatever happens, it's always Been for the best!

Anyways so I left that admission an emotional wreck and scared at the thought of transplant creeping back up on me!

Well 6 days later I started struggling badly again, no ernergy, full time oxygen, barely got out of bed or was stuck to the sofa.... I couldn't believe it...6 days that was a joke, that was worse than pre kalydeco days! But if anything it made transplant decisions a little easy to think and talk about.

So I went clinic last Friday. Sats were rubbish, weight had dropped, lung function back down to 15% and I was so breathless and wheezy. They weren't letting me go home without I.vs
They tried to admit me, but I had booked to do a hd brow course on Sunday just gone, so I wanted to do that and come into hospital after, there was no way I was missing it, I would have to be on deaths door! 
So starting I.vs was the compromise lol. Transplant was mentioned again and I had come around to the idea of waiting until after my cousins wedding in December, as I am bridesmaid, but the dr basically said to me that I've dipped a lot and I'm so small so could be waiting a while for lungs and can't waste anymore time. I prefer people being straight with me, so she helped clear my head up a bit more, it was also discussed that I am now staying on long term I.vs until I can become stable enough, so could be a few months and then see if I can plan to go in hospital without dipping too much each time.

Well karma hit me, Friday night, laying in bed, lee fast asleep next to me, I couldn't relax my breathing went tigher than normal, so tight, I couldn't catch my breathe, and I just thought sod the course my lungs are more important than a course I could do any time. 
I tried squeezing lees arms to wake him up as I couldn't even speak, then He woke up all shocked with glazed eyes and I just said ambulance! ( such a drama queen I know haha) I knew it would be easier and safer than going by car to a&e. So he called my mum and then called the ambulance, my little sister drove my mum over and ambulance turned up, gave me loads of ventolin which them turned me into a shakey crackhead haha and off mum and I went to St. Peter's a&e. Have to admit I was a lot calmer then and spent the whole journey from mine to St. Peter's worrying about a wasp that was stuck in the back with us! That's the last thing I wanted, a nice big wasp sting! Lol

Got to a&e, Spent hours there, being attacked with blood test and blood gases and more antibiotics ( which I refused) and fluids, x rays and felt much better and prob more relaxed knowing I wasn't sat at home. Then I got moved to a ward around 4.30am it was a long night. (I was actually out on a ward and in the same bed as my nan had previously stayed in before when she was alive, we had spent Xmas day with her, was very strange!)

Few hours later I was woken up to have my morning I.vs and my portacath line was blocked, thanks to the guy in a&e he never flushed it after using it and it wasn't budging. Long story short I missed my morning and afternoon drugs because no1 likes being told or advised what to do by patients in general hospital, they also don't like communicating with your specialist hospital for advice. Finally got a cannula in around 5pm and got my ivs then.

That evening I was told I would be transferred to the brompton the next morning first thing. I couldn't wait, I didn't see one nurse wash there hands there, they just left my cannula with out flushing it after my drugs went thru, so as I had no other acess, I was pretty precious over this cannula, so took it upon myself to flush it off, but at the same time making a point that she hadn't done it. The care was just awful and some vulnerable old ladies are just left in there and it's so sad, I may have crappy lungs but at least I can speak up and do something about my care!

Anyways so that brings me to now, I'm settled, I've been very spoilt with visitors, I have a lot of special people that care about messaging me or coming to see me already! My cousins came down from Manchester today, was amazing to see them, I love them so much and hate they live so far away, also one of them is preggers and has 8 weeks to go and feeling her little one moving around made me even more excited! My hubby came up this evening and us 4 went out for a lovely pub dinner down the kings road! 

Get to see the girls again tomorrow before they head back and then the countdown until the hen party for the non preggers one next week! So I need to get these lungs in good shape for that weekend! Although me and preggers will be the chilled ones out of all the hens, but I'm still so excited!! 

So that's me up to date, I will prob post after my harefield appointment on Wednesday to see what the situation is.

Sorry for the essay, lots to catch up on 

Love love 


Friday, 27 June 2014

Still here..

To all my fellow bloggers, don't you want to scream with frustration when you spend a while writing a post and you have really gone into detail and written so much then pow the iPad crashes and and you go back on it and it's disappeared....yeah that just happened and yeah I do want to scream the ward down! ......ANYWAYS!! 

So I'm day 7(8 depending on what time I post this entry now) 
And usually at this point I've either packed my bags and ready to go, or left already buzzing full of energy and feeling on top of the world!! 

So that hasn't quite happened yet, things seems to be taking a little longer to get sorted. All the numbers are showing the right stuff, infection markers are right down in the 30s, my lung function has increased to 22% even though the drs aren't sasitified with that, they want it higher, but I'm not not feeling like I've had a weeks worth of ivs, today admitidly I have felt my best! I've been stuck on an aminophylline drip since Monday night and it's doing my head in now, I'm just stuck in bed 24/7 because what else can I actually do, I have the worse pump stand with wheels that seem to have a mind of there bloody own, even going to the toilet is a battle with this stupid thing! 

There refusing to take me off it unless I agree to steriods which is a big NO NO, I'm sick of relying on steriods just to get well, it's a false effect, they just replace one problem for about 3-4 other problems. I feel like a ticking time bomb on steriods like I'm just going to argue or snap all the time, they depress the hell out of me, my skin always feels tender and sore on them, I obviously get a very sexy round moon shape face, and I'm just not feeling that right now, I don't need steroids to get better there just a quick fix but once you come off them you get unwell again cause your body relys on it! So until these drs break I'm stuck on this drip, but were reviewing it tomorrow which could mean I get my own way, I'm fed up of peeing every 5 mins from all the fluids and having to have bloods every day just to check the levels!! Lol 

Anyway like I said I felt better today so managed to get off the drip for a few hours as I requested from the drs, for my sanity I needed to escape, mum and I went to the cinema down Fulham road and watched "the fault in our stars" such a good film and lots I can relate too, I read the book last week, would defo recommend!  It's got me thinking a lot but that's a post for another night, I'm in the middle of my ivs and I can feel myself getting sleepy now. 

Will update again to finish this post, bit of a pointless one but I've gone from having this all in my head what I want to write and feeling wide awake to my eyes literally barely staying open-the joys of drugs!! The originally post being lost didn't help!! Lol
Night all much love 

Saturday, 21 June 2014

A&E, Ascot and back in the Brompton


Welllll I'm back in hospital! It's no surprise really it's just so shit, sorry but right now there is no other word to describe it other than shit!! Lol 
After my post on Monday I've just gone downhill. 
Everyday I had woken up feeling really swollen on my face, my head felt like I was going to pop from the pressure, my neck was fat and two massive veins on each side of my neck would be pumping and on display, was a horrible feeling and I thought it was just a side effect of steriods, I didn't think much of it as it had been happening the past few days and usually went once I took done anadin and/or inbuprofen. 
However Tuesday was a different story I woke up with this same feeling, took the tablets etching but it didn't go down, all day the pressure in my head was horrible, it got to the evening and it felt like it was getting worse, I asked my husband to bring my oxygen concentrator down from upstairs and sat on 3 litres of oxygen hoping it would ease the pressure in my head-it didn't! 
This was really unusually and scared me to be honest so I sent my mum a little pic of my face and said I don't feel right shall I contact the Brompton. She called the on call doctor and like she assumed they would say, they told us to go to our local  a&e to get checked out. 
So off I went with my mum around 9pm and got seen almost straight away, the Brompton doctor had called thru to a&e to let them know I would be arriving. The done my obs, Sats were 89-90% and they could see I was not right, they took me thru for bloods straight away- tried to put in a cannula which obvs I refused to have, and then they put me into the majors area. 

I can't fault the drs in a&e that night they were amazing and restored my faith in St. Peter's as I've had some bad experiences there in the past! They did ECG, echo, chest x ray and some other tests can't member names of but everything came back fine, they wanted me to stay in over night so they could do more tests the following morning as the radiologist wasn't there at that time of the night and they wanted to admitted me onto the ward. Buttt....
I refused and discharged myself, it prob wasn't the smartest or safest decision at that time but I had ascot that morning and I wasn't going to miss it for anything even if it was the death of me I would die a happy satisfied girl!! 

So Wednesday came ascot day..I woke up with a face the size of the moon!! And felt crap and I knew my body was telling me to not go but mind of matter, I got washed, I put my make up on and done my hair and grabbed my outfit and off I went to pick up my beauty squad and to enjoy the day I been wanted to do for years!! One to tick off my bucket list!! 
My face and swelling went down as the day went on and I took tablets to help and although there was shot loads of walking in heels might I add which I am terrible at walking in, once we got in I sat down most of the day! My friends were amazing and helpful I can't fault them, they made the day so special and glad I spent it with them!! 
We got a lot of looks and comments as we "didn't look disabled" the staff at ascot were awful and very discriminating against us cause we "didn't look I'll" if only they knew less than 12 hours before I was in a&e- bastards! 
Didn't let it ruin it and to be fair was fun winding up the old people who weren't aloud in the gomey area!! Ha!! 
The old people are the worst, at least you have the chance to get old!! 
And was told by the old guy letting people in the disabled area that, ok il let you but if someone with a wheelchair comes you'll have to leave...er no mate I'm disabled and have every right to be there, my bloody wheelchair was in the car aswell! 

Anyways we had fun and got chatting to a lovely middle aged lady who have us a few tips on what horses to bet! 
Group and 

So Thursday morning I got a phone call from bed manager to say there was a bed for me. I was so releaved, I really pushed myself the day before and I knew everyone at the Brompton would be angry but I literally didn't care, you don't know what will happen in future or where I will be this time next year so making the most of it! Lol 
I got on the ward and they all asked if I enjoyed ascot lol and then said the needed to put a cannula in so they could do a ct scan and inject dye into my veins to check for clots!
Scan was no problem but I hate cannula a, my veins are so rubbish, years as a chd growing up being attacked every few months with long lines and cannula etc! Anyways he got one in after an hour of numbing cream on (yes I am a woose) lol 
I felt so dramatic with it in, like those people I critise who can't move there arms, I was such a baby and couldn't wait up get it out. 
Had the scan which the dye felt so weird going in, my insides went so hot and tinglely and I felt like I had wet myself(I hadn't and was warned I'd feel like that) 

Results came back fine, no clots, it's a mystery to why I was feeling like that. 

So I'm not well anyways whatever is going on in my body needs to sort itself out. Lung function is down to 17% my infection markers are down again which is good, there 63 I think he said. They changed one of my ivs too Fosphomycin which is 4 times a day and takes an hour to go thru, I think it's making me so sleeping all I want to do is sleep, my lungs are aching so much and keep getting episodes of feeling cold shivery and feverish, I'm glad I'm here I need the rest and I just want to be well now! 


Tuesday, 17 June 2014

Rubbish health/Rip Freya

First week of home ivs completed, and was hoping for a nice positive "it's going great" blog post...not the case! 
Nope I'm pissed off to say the least!! 

So I went up to Lind ward (day ward at the Brompton) last Monday knowing I needed to either be admitted or start home ivs, typically there were no beds so home ivs were the only option-see I have royal ascot on the 18th June (Wednesday) so I knew I needed to be well as it's my first time going and I have spent a lot of money on an outfit so these stupid lungs of mine were no way going to stop me from enjoying this event! 

Anyways my lung function was 19%, weight was good considering I hadn't really eaten much the past week it was 40kg my crp (infection levels) came back at 53 so slight infection but nothing alarming! I started aztronam and tobi ivs-and reluctantly started a small dose of steriods, I don't want this to become a new thing now everytime I have ivs, however I needed a quick fix/boost for race day approaching! Also didn't want a round face for ascot!-shallow but it is important to me!!

Anyways so that brings me to now, a week on and I should by now be feeling amazing or at least on the right track...

Nope, Im not functioning unless I start my day with two little anadin tablets, last few nights I've had to sleep with oxygen, I started getting feverish again, energy levels should be much better than they are, most of the energy I'm using at the moment is out of pure determination to not be sat at home, giving in and feeling sorry for myself..

However knowing I feel like this I was up at the hospital today, had to go on my own which I thought I could manage better than I actually did lol, turned up there and to start my day off I couldn't find a bloody parking space...then I found one I couldn't get my car in...then I found two more..happy days..or not as it turned out!! 
I pulled into it, then this foreign couple pulled up next to me and looked at me like I was a piece of poo, clearly didn't think I was "disabled" I put my window down and asked what they wanted, to which they replied they wanted to get in space in front and told me to reverse back which I was already in the middle of doing, they stressed me out (which I'd like to point out I'm on steroids and it doesn't take much) anyway I can't really blame them for what happened next as I just wasn't paying attention and got myself all worked up but I reversed into the parked car behind!! FML anyways the car was fine and these annoying people got in the space Infront of me but completely blocked me in...I just wanted to curl up in a ball..and I still had a long old walk up to Lind ward yet!!

By time I got on to the ward I felt liked I'd walked about 10 miles stopped and had to sit down twice, coughed so much I was busting for the loo which was being cleaned, then door wouldn't lock- was turning into such a palava!! 

Anyways so done lung function which was 21% was surprised it was up as didn't reflect how bad I felt, Sats were same as when starting ivs, weight had gone up to 41kg and that's prob just all on my face haha saw dr, told her how I felt, said after ascot if I still hadn't improved can I go on bed list to go in as I need the rest and want to be proper well not just mask the problem, she kinda poo pooed the idea, wanted to start me on oral anti biotics to help boost things but see how I get on in a few days before starting them. So that was it really, didn't have the energy to kick up a fuss and tbh lung function gone up and weight so to her things were going in right direction...went and had bloods done to check all my bits and pre tobi levels and went home....

Well few hours later I get a voicemail from dr to tell me my bloods had come back and my infection levels had gone up to 113 that's over double than when I first started!! And she had spoken to consultant so going on bed list! As stupid as it sounds I was glad they had gone up, I don't make a big deal about how I feel unless I'm not good, I don't wanna spend time in that place if it can be avoided! But at least I knew I wasn't over reacting and that explains why I was feeling so rubbish and not felt like id improved!! 

So I'm going to enjoy ascot on Wednesday and then rest up lots get myself well again hopefully I don't have to wait too long for a bed, just want to be well now! 
Plus there's a few things I need to see them about and actually see my consultant feel like I'm just another number up there at the moment completely off the radar!! 

So that's me... Want to end this little post by paying my respect to a friend who sadly passed away the other week! We weren't mega close but we had are own little bond and use to have a little moan to each other, she was my Brompton Kalydeco buddy!! We both were the first ones at the Brompton who weren't on the trials to get Kalydeco!! I've always been very grateful to her parents too for pushing for the drug, without there help I wouldn't have got it as soon as I did, and who knows if I'd even still be hear to this day!?
Sadly Freya couldn't have a transplant because she grew a nasty bug called Mycobacterium, so Kalydeco really did an amazing job, It kept her going ALOT longer and pulled her through some nasty infection, sadly not this time though. My heart breaks to know shes gone and I can't just text her anymore to have a little chat, to see how's she's doing and how's her little blue pills treating her!! My thoughts go out to her lovely parents belinda and peter! 

Rip Hun xxx


Thursday, 29 May 2014

Moan And Celebrations

Moany post! 

I feel crap, since clinic ive just started slowly feeling worse and worse and now im just fed up! Today i actually got dressed and left the house, the last few days ive just stayed in my pjs all day and felt sorry for myself. 
I struggle breathing more and energy levels are like zero!! My appetite is non existent and fitness has not happened at all....my head really wants to get back on the treadmill and get all energetic again but my body just cant handle it, just opening and closing the boot of my car today had me gasping for breathe!! 

Im hoping im just having a rubbish few weeks and il start picking up again soon, quite frankly i have lots of social events coming up so i dont have time to be ill lol.

Today i went to put in a proscription to my new local pharmacy, ive lived in Cobham over two years but finally moved to my new drs in my area (only because they chucked me out of my old one) lol but ive never had to pay for prescriptions before but has Cystic Fibrosis isnt covered on the NHS for free prescription and it is £8.04 per item and need to purchase something called a PPC which is a pre payment certificate so i just pay either £30 for 3 months or £104 for a year. but i haven't got this yet and i thought i could get it from pharmacy...well i was wrong i have to apply for it then i can use it, so if i had put my prescription in today there is well over 15 items so i couldn't afford to do that...well i could but it would be mad to waste money...i can go a few days without a few drugs, ive got a weeks worth left any ways!

Also joining my new GP and adding on all my repeat drugs, there were drugs that they wouldn't add on because they were too expensive lol one of them was Pulmyzine...didn't even realise that was expensive, then they came to my Kalydeco and i just laughed and said well thats £350 per tablet so if they wont let me have pulmyzine there's no way thats going to be added!

Luckily the drugs that i cannot get from my GP i get delivered from a different company now, which now seems to be the nebs and kalydeco. 

i shouldn't really moan at least apart from £30 every 3 months i don't have to pay more!! 

Anyway on a brighter note, i was feeling a bit brighter last Sunday and managed to go into London for lunch with my mum to meet some fellow CF friends we had meet over the internet.

When Kalydeco was first mentioned back in april/may 2012 to us my mum decided to go on the internet to look into it a bit more and find out how people were on it and got in touch with people on a fb group, that is were Teresa contacted my mum to tell her how great the drug was and they were fighting for it for there daughter savannah.

So we had the lovely pleasure of meeting the both of them whilst they were over here in the UK visiting.
We had a lovely lunch and some bubbles to celebrate us both being on Kalydeco and how well were doing!! 

That is all...
Much Love!!
xxx



Tuesday, 13 May 2014

Deflated after clinic

So had my little clinic appointment today which I was kinda looking forward to as I've been working my arse off to be healthy at the moment plus exercising which is so unlike me, since leaving hospital I haven't had any days were I've just sat In all day and done nothing, but it's felt good. 

So last few days I haven't been feeling as well as I could be but still kept going, despite this I had high hopes for clinic results! 

So I get there, get weighed that was highest for me In God knows how long 41.2kg! So I was thinking sweet that's good bring on lung function...

Physio comes in, I'm all buzzing to tell her that I've actually carried on with exercise at home and not given up like I usually do after leaving hospital! So I do my lung function-22% 😔I thought right stand up really go for it first one might be a warm up..22% again 😭 proper gutted! 

I'm trying not to be too hard on myself, Rome wasn't built in a day and it's just numbers, I'm better than I have been in a while it's just so frustrating when you want something so bad, my last lung function was 26% but I was on steroids and ivs so I knew it would drop a bit just was hoping not that much. 

Anyways onwards and upwards it's just going to push me to work these lungs harder and my weights good so that's a boost! 

That's all from me 

Love love 

Xx

Saturday, 10 May 2014

Fighting Fit!

A little update from last blog post!


As usual thanks to kalydeco and maybe a little help from steroids this tim and a mix up of different ivse, I made a quick turn around and left hospital on day 7 to continue another 3 days of ivs at home!


My sats stabilised back up to 94-96%, lung function increased to 26% that's the highest its been since starting kalydeco and a great increase on my admission of 18% ,my weight jumped up to 40kg within a few days of being on steroids!
I continued my steroid dose at home until I finished ivs then lowered the dose by 1 tablet every 3 days until I finished.


I have been non stop since I left hospital, I haven't sat down, I love this feeling of having so much energy and lungs not stopping me so much from doing things...or at least as much, I still sound awful but feel great so I don't care!
I have to admit after finishing steroids I have noticed my energy levels dipping and I have gone slightly tight but im not relying on steroids, I never have and I never will until I have a transplant!


So im really trying to keep healthy at the moment and push my body, like I said I haven't sat down or had any "bad days" really yet apart from being a bit hung over after the bank holiday haha


ive started using my parents treadmill. now to others it wont seem a lot but for someone who does NO fitness its a start and im not running before I can walk! so I been doing 20-40 mins every other day 2 mins of fast walking then 2 mins of slow walking on oxygen as I cope better and already im starting to feel the benefit! my legs feel bit stronger and its like doing an extra physio session which is good for these old lungs of mine!
also sometimes I wonder when im walking around and getting tired if its not only my lungs but lack of fitness, it must play a part so hopefully doing this little bit of exercise will help me a lot!
I have clinic next week so really hope my lung functions still up or would be a miracle if it had gone up even more!! thinking positive!


that's all I have to report


:)

Friday, 18 April 2014

A reason to blog- stuck in hospital! :(

I actually have a reason to write instead of feeling the need to not neglect this once very active blog! 

So my health situation recently...

As I mentioned in my previous post about going to see a gynaecologist to help with chest infection relating to pre period etc. So he agreed that was the best idea to start me on a pill called microgynon. Had to wait for my first day of cycle to take course.

Anyways after that appointment I started feeling unwell surprise surprise I was leading up to my period but was generally more chesty and didn't have much energy so decided to start home ivs to give myself a boost-I also thought then I'd be on top form for starting this pill to see if it really would stop me from getting unwell each month due to flare up with Pseudomonas. 

So I went up to Lind ward to be seen by drs and get needle accessed, can't remember what my infection markers were- don't think they were that high but slight dip in lung function if 21% ( my best is 25%) and weight was 39kg so I was started on two weeks of ceftazidime and tobramycin, and started feeling much better, I finished on the two weeks as felt so much better. 

So that was the Friday 4th April. 
Before finishing ivs I started the pill on the 1st April. 

On the 7th I started feeling more breathless, tired, walking upstairs was exhausting, But thought maybe was having a bad day or possibly had something to do with the pill because it was all the signs I get before starting my period each month, and stupidly read up the side effects and it all added up, basically gives you that period feeling again anyway so contacted hospital to say I'm stopping it, make sure they were happy for me to do so...the next day I had the strangest thing happen to me. 

Around 7pm  I randomly started having a sneezing fit, followed by my eyes becoming extremely itchy and watering, then my lungs felt itchy on the inside (I know very odd) so itching my chest ribs etc was doing nothing to help they felt really warm, then my legs became itchy and my feet, I started panicking because it was a feeling I'd only ever experienced before after a drug reaction, I called lee and said I feel weird, something's  not right!! 
Then I took a hayfever tablet, then my nose became more itchy, the front of my chest and neck went all red and warm and unbelievably itchy, then my throat went itchy, then everything just closed up my troat felt swollen I couldn't breathe. So lee ran and got my oxygen. I kept coughing so hard which helped with the itchy throat, I sat on the oxygen. I'd run out of portable oxygen so couldn't go to a&e...I'm organised as ever! 

After about 5 mins I got lee to get my Sats monitor to see what they were, but they were in 80s and I normally react to oxygen well so I started thinking this wasn't right, almost called ambulance but then I just thought by time they get here il prob be fine and I hate wasting there time! 
Anyways after hour or so my Sats came up to 96% on oxygen. 

It was so random, I hadn't taking anything, I'd literally been sat there watching hollyoaks...mystery. 

So I decided to contact hospital cause I felt lifeless the rest of the week, I'd already told them I wasn't feeling great but blamed the pill lol. 
Was adiment I wasn't going back on ivs- felt cheated I just done two weeks of them and felt so good, would no way of finished if I thought I wasn't well enough! 

So that brings me to Wednesday. I actually had felt a bit better that day it was the previous day on Tuesday I looked and felt like dealth!!

I've been struggling with hayfever which I've never had in my life ever since that "smog" happened a few weeks back. I was getting really bad night sweats, I literally would wake up in the middle of the night and it was like someone had thrown me in a pool! I was feverish all the time, feeling freezing with temperature. Chest was just awful, Sats would be ok then just drop to 85% I normally sit at 96-97% resting. 

So I went to Lind ward like I said on Wednesday in hope to go home on some orals to try get over whatever's going on. 

I'd lost more weight that was 38kg. 
Sats were 93% which isn't too bad. 
Saw doctor and she said I need to start ivs again and come in or do home ivs. I really didn't want to do either, it was so frustrating!! anyways she said let's see lung function, after I'd done X-ray and bloods. 

My lung function is what changed my mind. It was 18% I was shocked tbh it was worse than before ivs- I just broke down into tears (hormones all over the place I don't normally cry ha) I knew I needed to do ivs then. 
But then they wouldn't let me go home on them I had to come in, she said I looked drained! But typically there was no beds on foulis, but they had a side room on Lind ward, I had no idea they do there little sleep studies on people between monday-Friday so I stayed up there, the staff were lovely and I got a massive room with TV, felt bit sorry for the people outside on the ward but hey Ho, the only down side was the toilet was a bit far and no kitchen on the ward. 

So was moved to foulis yesterday afternoon. 

My infection levels are 89 so not too bad but not great either, white blood count 26? Still don't understand all that lol. 

They have started me on tobramycin again but put me on aztreonam to give me a break from cerf, also started 20mg of prednisolone steroids to help-I'm so anti steroids but I need a boost and hoping to get off them quickly once it all kicks in! So il have a nice fat round swollen face in a day or so! Sexy!! 

I'm a bit worried about my Sats- I know to others i should be lucky but they seem to be staying at 89-91% just resting and after being on oxygen, not like me at all so hoping as I'm only day 2 things will all start kicking in and this chest picks up ASAP I'm so exhausted from coughing all night I ache just breathing, so let's see what the weekend brings! 

Love love 

Saturday, 8 March 2014

Random chitty chatty

Feeling a moan or just to talk utter shite so I suppose having a blog is a good place to let it all out!! 

So I'm basically just pissed off with my body at the moment, it's not living up to "George standard" lol 

Ever since I started the drug Kalydeco I never get that horrible sick feeling and barely get sick, and trust me, leading up to transplant and whilst waiting I spent many days, months and years suffering it!! I was on every anti sickness going! 

But since Kalydeco like I said I don't get any of that luckily anymore...well up until recently and my god I forgot how awful it is! It's no way as bad as it use to be and I managed to get pass the sickness and still eat but I literally can't deal with it lol I'm eating my dinners at night mainly and just before I sleep I end up chucking it up!? It's not every night but it's unusual for me now.

I have had such a bad chest pain since 15th feb in my top left side lung, I've been to a&e, my hospital had X-rays and ct scan and nothing is showing up, fed up with it now tbh! I get chest pains all time but they tend to go within a few days arghh. But at clinic the other day my weight was good almost 40kg and my lung function was 23% which isn't bad for me either!? So over all pretty good so god knows what's going on at the mo! 

Had an interesting convo with the doctor at clinic aswell. Now I'm not a baby person, I'm not maternal, nor do I want kids, thankfully the feeling is mutual  between myself and my hubby! However I'm quite realistic about life and how things can change, I know I've changed a lot since I was a teen and my opinions could very well change again, although I really can't see it happening anyways so I know I could never have a baby naturally- thank god the whole process freaks the hell out of me, but I have thought about freezing my eggs, or at least asked about the process, you just don't know what could happen in future and whilst my health is stable I thought if it's something I'm serious about then I should see if it's possible. 
So I asked but I've heard my consultant isn't too keen and it does sound like an uncomfortable and horrible process, and you have to be put under a general anaesthetic which is not very safe for someone of my lung function, I'd have to talk to the right people and be serious about everything as it's not something easy. I just want to make sure as I'm getting older I'm not going to live in regret! 

Anyways I have a lovely appointment at Chelsea and Westminster hospital this month with a gynaecologist to help me for my periods as they are making me so unwell each month, apparently they have recognised that for CF woman each month they are due on it actually makes pseudomonas worst which makes you feel or actually have a chest infection or something along them lines, so at least now I know why I get so unwell I can do something about it! 

All fun and games having CF as if us ladies don't have it hard enough!! haha 

That's enough chitty chatty 

Bye! 

Monday, 13 January 2014

New Year, Same ME!

Happy 2014 to anyone that might stumble upon this blog!

its mad to think how much of a rollercoaster my life has been since I started this blog a few years ago, I barely blog any more but it is interesting reading back on my earliest of entries!

so whats going on in the world of sprog...well not much, id like to say im running around making the most of life and my lungs are doing amazingly, but there not- but im still alive and breathing so that's a good thing surely haha!

ive had a lot on my mind for about a month or so now, and been wanting to blog ALOT but for first time in my life I think I kept a lot in for a while, even from my mum and husband, I didn't want to talk to anyone or let anyone know how much was really on my mind, been massively worrying and I think the only person I really felt I could open up to was my best friend who happens to be on the other side of the world at the moment!

so as we all know in the cf world winter season is the worse time of the year for us! there's bugs and colds everywhere and the cold weather just hits us like a ton of bricks, so recently ive been struggling a lot, and ive needed to go into hospital prob since before xmas but as I was only in there in October the thought of another admission so soon was killing me so ive put it off and put it off until last week I decided I couldn't handle feeling like this anymore and got in touch with the hospital.

but since feeling like this, struggling more, using oxygen and wheelchair, sleepless nights, constant coughing or struggling to catch my breathe and progressively getting worse, lee (my husband) has been making a few comments casually in in normal convos like "well in future when you have your new lungs" or "once you have a transplant" bla bla bla its got the thinking about a lot.
and basically scaring the crap out of me.

when I first started this blog, I know exactly how unwell I was, I could see how unwell I was and I knew my only choice left in life was to get listed and wait for some shiny new lungs to give me my life back, it wasn't an easy choice, but its something I accepted and was well prepared for, I made a lot of friends who were in the same situation as me and I had a lot of support and my head was totally in the right place, positive thinking and all that.

then kalydeco was thrown into the equation...which don't get me wrong I am so thankful for, its saved my life, there was no certainty that I was going to get a transplant, I had already been on the list for 7 months with no calls. but kalydeco turned my life around, it got me off my oxygen all the time, it gave me some independence back and most importantly it gave me hope that I wasn't dying as such anymore, there was still life left in me and I wasn't going to let it slip away, I had my second chance without going thru transplant, I got engaged, married holidays and much more and here I am year and half later.

but now what happens. I hate that my heads feeling like this cause im not negative but I cant help but think well how long is it going to last, is that it now, im beginning to se myself getting more periods of becoming unwell again, maybe its because its winter but maybe its not. I mean kalydeco hasn't un-done any damage to my lungs, its just stopped anymore damage from being caused. at my best I still only have 24% lung function which drops to 16% when unwell, that's 76% of my lungs when im well that ive lost!
my heads all over the place I worry so much about my future now...I know that as great as kalydeco is im not superhuman and this lungs wont last me forever, I just wish I had a crystal ball to give me a heads up! lol although I have struggled more generally at the moment I think well im still alive, im not attached to machines 24/7 ok if im going out at weekend I no I need to basically stay in all week to prepare myself and then after have some days at home too but I can still push my body to enjoy special times!

will I ever know when the right time is to think this could be it now? now its time to get back on that transplant list.

or will life catch me off guard?? you hear about those people that one minute there ok next minute infection just wipes them out and there dead...

see what im dealing with in my head? haha

thennnn... ok I go down the transplant route again at the stage I am now, I have a transplant which is such a precise gift, and Im one of the unlucky ones that gets rejection straight away or after a year and theres nothing anyone can do and I no that's it il be dead, before I was happy to take that chance because I knew I was getting worse and worse but if that happens now would I regret ever having a transplant knowing I would have lived longer without one.
also before going down the transplant route I didn't know much about rejection and didn't know of anyone that had it, I heard all the good stories and great out comes, which is exactly what you want to hear, gives you that hope, in some ways I was naive, now ive read up so much about the worse case of what happens, and the side effects and everything to put you off basically- not one of my best moments!

I hate the uncertainty in my head, ive always known growing up my life would be shortened, but now im older, and I have the best life, my husbands amazing my family's amazing my in laws are amazing I have the best friends. I love it, I want to enjoy it forever, I want to grow old and grey.

my plan since starting kalydeco was to do as well on it for as long as poss and by the time I need new lungs I was hoping they had learnt how to grow your own lungs stem cell and all that, well I read up about it online recently and im a bit early for all that, apparently its more our grandchildren's, children will be doing that....so that's that plan out the window :(

god this really is a depressing blog sorry bout that just have to get it off my chest, and I don't want this to seem like a negative blog towards transplant and organ donation because its truly one of the best gifts ever and I see the people who are doing amazingly and I think wow like why am I even worried!
but always going to be honest about how I feel in my blogs and this is how im feeling

xx