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 

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

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