Saturday, 21 July 2012

5th full day of kalydeco

Thought I'd do a blog before I go to sleep as its been one of the most noticeable days today!

Tonight has been dose 10!

So last night I had a really restless night and quite frankly I was hating it, thought that it possibly could have been due to kalydeco but was pissed off as all I wanted to do was sleep! I was none stop coughing, but it wasn't a loose cough it was an annoying dry one and quite tight and I kept waking up on and off until about 2am then it calmed down....
Until about 5am when it came back with a vengeance lol but thankfully this time looser and manage to clear! LOADS! But was still fed up and just wanted to sleep.

Woke up around 9ish to get myself up in plenty of time to take my 10am
Dose with a nice curry lol after practically being up all night I was pretty tired so knew the day would be a right off and planned to chill on the sofa watching crap tv!
Caught up on big brother done a face mask and then started feeling more energetic and wanted to get out the house so jumped in my car and went to meet the family in Woking for a bit of shopping, well just planned to get my finger measured. (for engagement ring)

On the way I was doing some serious multi tasking whilst driving, mixture of coughing up, holding the steering wheel and driving and having a drink so my throat wasn't so dry...and they say girls can't multi task! Pfft Lol

So got into Woking and actually felt pretty good, I didn't bring oxygen and didn't want to use wheelchair and surprisingly enough I felt good.

I didn't get tight, or out of breathe thinking bout it...I don't even think I coughed? I certainly didn't get into any embarrassing coughing fits! :-)

Spent at least an hour walking from shops to shops with my little sister and felt fine, the only reason I couldn't quite keep up at times wasn't because of my chest but cause my legs ached a bit...I got to point where I barely walked anywhere so need to build up the muscle in my legs again!

Its weird I want to say I feel amazing and I think I generally do...it's not until I sit back and realise what Ive done and how Iv handle it I think wow I couldn't do that a few months ago that I really can say its amazing!

After shopping I came home, put away shopping, tried on clothes I'd brought, cooked myself some food, washed up, then decided to unwrap and sort out my new medicine basket draws thing, fill it up with my drugs, then put that on the shelve, then decided to clean the bathroom....

Last few months if I'd gone out shopping with my fam in my wheelchair and oxygen getting pushed around a shopping centre I'd be exhausted once coming home!

It's very surreal!

I just seem to have this energy and can do things...surely it's the drug? If its not whatever's going on its amazing!!

Funny cause each day so far has been different cause yesterday I had energy but I sounded awful! My mum said I sounded like I should have been heading back into hospital and I was literally coughing up throughout the day but even though I was coughing up it wasn't tiring me out it was easy!

This evening I got some weird chest pains like right down at the bottom
Of both of my lungs. I lent forward and did about 10 deep deep breathes to try shift whatever could have been stuck and got lee to tap where the pain was, it must have worked cause the pain went...made me wonder is there old crap starting to move!!
I really hope it is!!

Also my weights been really good! Even though I have hardly eaten my weights gone up from weekend! I was 38.4kg in the evening and this morning I was 39.3kg so hopefully that will go up some more! Not done my feeds I know it's naughty but I don't wanna throw up everywhere ESP on my new carpet! Lol
If weight carries on improving maybe won't have to bother with feeds fingers crossed!

I'm hoping il get some rest tonight as I'm picking up my pup finally 2moz now so that alone il need all the energy I can!

Will up date again and hopefully things will carry on improving! :-)

Love love

5,074 hours, 6 months 28 days on transplant list


  1. Hardly eaten eh... I couldn't eat a curry for breakfast!! Lol keep it up! xxx

  2. That sounds amazing..only 5 days in. From what I have heard, you will keep coughing up junk for another week or two, and some of it will be OLD junk (eugh!). But once it's gone...it's gone, and you will really start to feel it. Keep us all posted :)

  3. George - You're our hero! So inspiring and giving everyone hope! xx

  4. sound awsome. So intresting to read!!! Have my fingers crossed for more x