Tuesday, 19 February 2013

Happy lungs = Happy Grace (& a psuedo love story!)

The title of this blog pretty much is what I have to say! My lungs actually are feeling quite happy at the moment :) 
It's two weeks ago today that I first started Kalydeco, the first week not too much difference as I was so ill beforehand I wasn't feeling any different. However, the past 4 days or so I've suddenly just felt like I have so much more energy! It's so strange, I don't even know what to do with this energy..I'm not used to it.  My lungs feel like they're not drowning in so much mucus, which is fabulous and such a good feeling. I've even managed to walk around Wisley for a couple of hours.  My lungs do tend to ache still at the back when I'm doing lots of walking, especially if it's at a quicker pace however I'm not getting the breathlessness which means I can afford to push myself further :) I'm hoping in the next few weeks to start swimming after work a couple of days a week, build up my stamina with that as I always LOVED swimming when I was a child and when I took my GCSEs I left the club I used to belong to so I could focus on my exams.  

On my annual review analysis letter it said my Pseudo growth is now light which I reckon is down to the Cayston neb as I hadn't started Kalydeco then! Which is fab.  If you've been reading my blog a lot, apart from deserving a medal for sticking with me, you will know that Pseudo is basically my lungs best friend/enemy.  Pseudo just wants to be friends with my little lungs but unfortunately they just don't feel the same way and I think they are starting to go their separate ways. I probably wont ever get rid of Pseudo as my lungs are classed as being colonised with it as I've had for years now. But as long as I can keep it to a light growth and try to reduce any Pseudo flare ups then we can try to manage to live side by side!

Another amazing thing to tell you....my morning cough has pretty much disappeared!  If I had a penny for the amount of times I would wake up either in the night or especially in the morning coughing for a good 20-30 minutes, struggling to breath and half the time resulting in me being sick purely from the amount of coughing I would be the richest person in the world! Over the past week this horrible annoying cough has gradually left so yes I still have a cough in the mornings but it's a little one, just for my lungs to let me know they're still doing their job ;)

The other night I did have a couple of panic/anxiety attacks when I was in bed, luckily nowhere near as severe as they used to be.  Haven't had them for AGES and suddenly one appeared from nowhere..I'm not even sure why! My breathing has got better, I'm feeling better and I don't feel that I'm particularly worried about anything.  I know when I had my annual review they said my anxiety score was quite high but I don't know why I would have a mini panic attack over nothing! Anyway, it was so small it kind of feels pretty insignificant now.  One happened the night after too but again, nothing like I used to get where I would sit down hyperventilating, shaking and crying and only my Mum could calm me down and help me to breathe properly.  This I managed to just calm myself down within minutes so I guess it may have been one of those things! I've told my panic/anxiety attacks before that they're not welcome so they know where to go ;)

LASTLY! Sorry for going on for so long. I had clinic today, and in two weeks of being on K my lung function has gone up HALF A LITRE! It's now 1.8litres which is around 60% :) That's amazing it's gone up that quick, I can easily loose a litre in that time but it usually takes me so long to gain that back!  Dr Higton was so pleased with me.  I asked about stopping my steroids, and she said to have 5mg on alternate days for two weeks then stopping.  But if that makes me feel dizzy I'll go back to normal and possibly try an even slower way of ramping them down and getting off them.  I've been on an up and down dose for a year now and they said when you're on them for a while your body stops producing natural steroids so they may need to help it by doing an even more gradual decline but we'll see how that goes.

It's half term this week so I'm making sure I do lots of walking to exercise my lungs, going to see a couple of friends and then Tom at the weekend and FINALLY back to work next week, cannot wait to go back! Very excited! 

That's all for now folks ;) 

Tuesday, 12 February 2013

One week on Kalydeco!

Hey everyone!

My first full week on K and after a few days I was wondering what all the fuss was about as I still wasn't feeling any different to how'd I'd been the past month (although maybe I was thinking miracles would happen!) I was still getting high temperatures, and feeling breathless and coughing so much that it was making me sick half the time. But then I did remember that the nurses said the first week on K can be rough and as I'd been feeling so poorly the past month anyway I don't think I'd really noticed the difference! 

They said about the headaches/sinus pain you can get, especially for the first couple of weeks. After a couple of days I'd had nothing so was getting a bit cocky and thought maybe it wouldn't affect me that way then BAM at the weekend I was in agony! Plenty of nurofen, paracetamol and cooling patches for me! 

Today is the first day I've actually thought 'wow I might be able to do things, go for a walk' and have felt like I've had a lot more energy and focusing less on breathing. So let's hope K keeps on doing it's magic and hopefully by the end of this week I'll be absolutely buzzing and my lungs will do what they're told! I've got a check up next Tuesday to see what my lung function is doing..although I'm feeling better in myself and I'm not coughing as much, I don't think lung function would be too good as if I do a deep breath in I cough and splutter! But we'll cross that bridge when we come to it :) 

I still managed to see some family to celebrate mine, my dad & Auntie's birthdays which were all at the beginning of Jan but because of snow and then a few other things we couldn't meet up until now! However I did slap on a smile as during the meal my lungs suddenly became really sore and I felt so shitty with the temperature but never mind, carry on as normal!
Also, I'm really missing work :( Cannot wait until after half term when I can go back! 

Yay for beginning to feel 'normal' again! And as it's pancake day I'm off to go and cook lots of yummy pancakes to eat. Hope you all have some scrummy pancakes too!

Thursday, 7 February 2013

Day 2 on Kalydeco & a mini 'get it off your chest' session!

It's only day 2 on Kalydeco so I wasn't expecting miracles, everything has been a bit up and down really! I took the 1st dose on Wed night but today is the second full day on K. 
Yesterday I woke up (I must admit I had fingers crossed I'd wake up and suddenly feel amazing!) but I had a temperature of 38.2 and my lungs weren't being cooperative either so I came down stairs and laid on the sofa and mum got me painkillers, and nebs and everything. I still wasn't feeling hungry but managed some lunch and then just fell asleep for about 3/4 hours as I was just exhausted! As the evening came I felt better. ALWAYS the way lately, mornings and early afternoons I feel awful and can't do a thing and as late afternoons/evenings come I feel better. I went and relaxed in the bath, nothing better than having tonnes of deep baths after your gripper has come out...only CFers know the true satisfaction of a post-IV bath! Hehe :)
This morning I woke up, took my Kalydeco tablet at 7.15 and went back to sleep for a while. Did my nebs, temp was 37.7 so took some nurofen as those seem to be the only thing to help bring my temperature down. At about 11ish I realised I was actually feeling a lot better all of a sudden..so I had some lunch, still not very hungry but again managed to eat, and thought I'd try some of my new pilates DVD that I bought..realised how unflexible my legs are, I can't touch my toes or sit up straight with my legs flat, the knees rise up and bend! So if anybody reading this has any tips to make legs more flexible please feel free to leave a comment, tweet me, facebook me or anything! It was good though nevertheless and a nice little workout! 

I'm really hoping that I continue to feel better and keep improving but I always think that in the evenings and the morning comes and I feel awful again so we will have to see what tomorrow brings :) 

I am really sad though as I've had to inform work that I wont be able to come back until after half term (which means next week off work as week after that is half term) which I am just gutted about, I miss the students in my class and the staff loads, I would do anything to go back :( but with me feeling so up and down I can't afford to go in and make myself ill. Even if I am starting to feel better, going out for an hour to have a look in a shop or whatever really tires me out so I need to build up my strength and endurance after spending a month so ill! However I do feel like I'm coming out of the clouds now and heading back to feeling better so let's hope it continues and Kalydeco does its magic ;) It's hard to know if I'm starting to feel better because I've been ill & it's time to feel better or if K is working or both!

I'll keep you all updated with how I am over the weekend and next week. I really hope Kalydeco works soon and I can finally look forward to things, I can make plans without being scared that I'll have to cancel. That's one thing I hate about CF is not being able to plan for things..not being able to book holidays for the Summer as I just don't know how I'm going to feel. And when I'm poorly I can't even make plans for the next few days as I just don't know what will happen and it just hurts to not know what to future holds, everyone seems like they can plan for everything in the future whereas I just don't know what will happen and to be honest, I do think about that a lot as it doesn't just involve me, it affects my family, my closest friends and my boyfriend. But I keep going in the hope that my lungs decide they do feel like working properly and Kalydeco will help stop me feeling this ill as often and the amount of IVs will reduce which mean I can plan for things and I can look forward to my future, not dreading what will happen the older I get, which is what it does feel like sometimes. The unknown. That's the scary part. One person once said to me 'just have a lung transplant and you will be cured' My mouth just dropped right open. Do they not realise HOW sick you have to be to get on the transplant list and even then the painful 
wait? I know people on the list and I've read blogs of those who are on the list or have had their transplant and you just wouldn't wish that on anyone. PLUS it still does not mean you are cured?! I think people in schools need to possibly be educated a bit more, but also think before they speak?! Obviously lung transplant is a thought that comes up a LOT in my head, especially with how I have been lately, unable to walk up the stairs, struggling with every breath. I know that I am not sick enough often enough to warrant being on the transplant list, no way. But when my lung function is 30% I know that if you are like that for 6 months you can be assessed for transplant. Mines only been like it for a couple of weeks, and then 40% and slowly going up. I know I'm a long long way off from that option at the moment but it's a terrifying thought that I've just sort of come to terms with that maybe one day that will be my only option and if it is and I am lucky enough to receive someones lungs then that is what is meant to happen. I am however hoping with Kalydeco that possibility is going to be lowered, or at least put off for a long while! 
Anyway, I'm very sorry, sort of went off on a tangent and mini outburst there. 

Thank you again to anyone who reads this, I really appreciate the fact people take time to sit & read my blog :) and to those who share it on facebook and twitter too :)

Tuesday, 5 February 2013

I HAVE KALYDECO! Plus hospital appt & dodgy oxygen levels!

Hello lovely readers, fellow bloggers & CFers!

FINALLY I have amazing news and I have got Kalydeco! I was planning on getting it tomorrow but I had a hospital appointment today anyway, did the exercise test as the physio had time & therefore they said I could leave today with K! 

So yay! I must say though before a million people ask, there is a link on my Kalydeco page which explains how it works as thats better explaining it than I am. It is NOT a cure, I've had quite a lot of people say that now I'll 'be cured' or 'wont have meds' anymore and that isn't the case. Yes, this little blue tablet is bloody amazing and does mean better lung function, stable weight, less time in hosp or on IVs but I still need to do ALL my meds, nebs and I will still have IVs, get sick and be in hospital. K just means that hospital and IVs will be less often and the scarring from infections will be less :) 

As the tablets have to be 12 hours apart I need to fit it in with work etc so my first dose will be 7.15 tonight! Very excited :):):)

My hospital appointment on the hand did not go so well in some ways. My lung function had gone back down - boo hoo :( - and for some reason my SATs (oxygen levels) decided to muck around..they were 92 at rest (mine are usually 99) so was a bit worried, as I did the exercise test they started dropping to mid 80s. I spoke to Judith & explained that I get awful headaches when I wake up in the mornings or if I've had a nap during the day..she said hopefully K will sort it out but if in 2 weeks when I go back it's still the same - or gets worse in the mean time - they might keep me in for an overnight observation to see what my SATs are doing when I'm asleep and also when I'm walking etc. Fingers crossed it sorts itself out please! :)
They said I could come off IVs as after a couple of weeks I seem to plateau, so Dr Higton said lets try a break, K might kick in a help, if not I'll go back and try new IVs/stay in hospital for a bit.

So there's my exciting news, finally joined the Kalydeco Club ;) I'll be updating my blog quite often probably over the next couple of weeks on how I'm doing so keep checking back if you're not bored of all my ramblings yet!

Lots of love