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 :)