Thursday, 16 August 2012

4 weeks on Kalydeco

Thought I'd best start updating this blog a bit more like I use to!

I think now I have settled into life on this new drug, think I'm over the hype of it now and it all being a bit surreal!

Since last week iv had some crap days, yesterday ESP, the night before I was non stop coughing during the night and could not catch my breathe or rest it was such a horrible feeling, felt like I was being choked! And cause of the amount of coughing I was doing after about 20-30 mins solid I started getting chest pains and all I wanted to do was relax and sleep! So decided to take some oramorph which iv not taken since before my hospital admission pre kalydeco. I didn't have a syringe to measure and was so frustrated and knackered so I just poured the liquid into the lid and took that so dunno how much that was but couldn't have been a lot but almost instantly my breathe relaxed and managed to stop coughing and lay down and rest and sift back to sleep! Which was great.....

Until I woke up in the morning!!

Omg I regretted taking the morphine almost instantly. I was overwhelmed with sickness and I couldn't handle it! I've not felt sick in such a long time it was completely alien to my body and I literally felt like the biggest drama queen but I couldn't function!
10am came and it was time to take my dose of kalydeco but I couldn't literally I was heaving and the thought of putting anything fatty near my mouth made me feel even worse, I wanted to force myself but I knew either way I'd be sick and didn't want to sick up the tablet

Didn't no what to do, I need to eat as the longer I left it anyway my body was feeling sick cause I was hungry.. I haven't had to deal with worrying bout sickness in so long I was a bit lost on how to handle the situation lol and I needed to take my tablet!

The only way round it was to try make myself sick but I was too scared haha
So decided to go do some DNase get myself coughing and bush bosh bash I was sick. Lol finally that's the last time I was taking morphine cant handle that feeling, I managed to take my tablet around 12 and eat some pizza with it but I felt so crap the whole day, was so drowsy, had no energy, lifeless George everything was such hard work, it was a flash back to a few months ago... Although breathing is bit easier now.

Thankfully I was back to normal today!

Something that mum and I have noticed, that I think may have something to do with the drug.

I haven't checked in such a long time as never really feel the need to nowadays but I have my own little sats machine at home which measures my heart rate and oxygen. And one thing that really did shock me was my resting pulse rate. For me normally my heart rate at rest is anything from 101-125
That's because my heart is working harder because my lungs are so crap....welllllll when I checked them yesterday my heart rate at rest was 70!! That's crazy for me! I was shocked! That's like a normal persons heart rate! :) happy Sprog!

Not much other to report on health although I'm not feeling as great as I was, keep feeling really tight at times, but then it goes, think I'm being greedy, let's face it I can walk about a lot more than I was and not confined to a wheelchair on oxygen! So I should be grateful but still clear lots and it is early days still :)

Wedding plans are coming along nicely, can't really take any credit for that and I have realised I'm not girly at all really, weddings are so over rated these days...I think people forget what the purpose of weddings are!and there so expensive! So many things i want but unrealistic! But I have found my dress and venue and booked a date so I'm leaving lee and his best man to do the rest!

Mainly Looking forward to my holiday the beginning of oct! Soooo needed and I'm soooo excited! Cannot wait to tan up eat lots of gambas pil pil! Take a trip to marbella and Gibraltar to see the monkeys and just chill! It's been far too long! :)

That's all to update

Love love

20 days since came off transplant list


  1. Be careful of the monkeys they will steal your stuff!!! :) I'm from the US but visited Gibraltar once on a cruise and I enjoyed it a lot. There is a glass making place there with beautiful hand blown colorful items that you should definitely go to if you haven't been before. Great blog and I am so happy that you are doing better! I've been following your blog updates for a while as all the Kalydeco stuff is so encouraging (My boyfriend has DDF508). Hope you continue to improve and have a wonderful wedding and marriage :)

  2. By the way, and I'm starting to see this mentioned elsewhere about Kalydeco, Bacon seems to be the perfect high fat, high sodium vehicle for the drug to attach itself to. I've been serving Dean Bacon with his Kalydeco for months now and it just works really well(and lots of calories too).