first full day free of ivs!!

Well it was good not having to get up to do my iv's this morning, but I still ended getting up at 9.20 due to some builders outside. Your probably thinking 'wish I got to stay in bed until 9.20!', well haha, yes it was very nice!!

The meal last night was good, the first pub we went to wouldn't let babies in so we went to another. Our nephew was good all the way through the meal anyway, he hardly made a noise! He's getting quite big now and is smiling! He's really cute!! I want one but Pete won't let me!! :o(

Before the meal Pete's sister and mum came into the flat as his sister has never seen the flat, I used the opportunity to get Alfie used to having strangers in the house (Alfie has behavioural issues and we have seen a specialist who has given us a plan to follow...). He barked at them and they gave him some treats whilst looking away (apparently looking a a dog when they are barking is threatening) and eventually he calmed down abit which was good.

Now i've finished my iv's I need to start on my nebulised antibiotics again, I have some tobi left over so i'll use them first and then move onto promixin. I became resistant to promixin so had to move onto tobi, but now im sensitive to promixin again. Tobi is pretty expensive so unless it works better than promixin, they prefer you to have the promixin. Since i've been ill recently I don't think the tobi works that well for me! plus it makes you get a croaky voice and tastes gross, and it takes longer to go through. I took some pictures to illustrate how the nebuliser works, I use an i-neb, others with cf may use an e-flow but they all do the same thing but in different ways. So anyway, the tobi gets squirted into the chamber.

Then a lid goes on and then the mouth piece


Then I have to breath in and it squirts a mist into my mouth, I keep breathing in until it vibrates or for as long as I can. Each time I manage to breathe in until it vibrates, it makes me breathe in for abit longer the next time and keeps doing this, if I cant breathe in for that long the next time it reduces the time abit until it finds the right time for me. I keep doing this until it beeps and the smiley face comes up


Then with Tobi I have to do it again, overall it takes under 15 minutes if I can breathe in for a long time but tobi can make me cough and get tight chested. I've got my Dnase down to about 5 breathes which is great, it takes about 2 minutes! Once completed I take it apart, put the bits in the container, give it a rinse then stick it in the steriliser

I called the travel insurance today for when we go to Greece. Getting travel insurance to cover your cf is a NIGHTMARE! most people wont cover you or will for £100's. I managed to get insurance with a company for £86 for me and Pete for the year for worldwide cover as we went to Africa in April, I found this off someone on the cf forum, thank you! ps - people with cf do not use Endsleigh, they say they cover any pre-diagnosed condition but they don't cover cf even if they assure you that they do! Anyway back to my insurance I have, I had to sign a declaration saying I had not been in hospital for 12 months which at the time I hadn't. But since March I have been in hospital twice, so I had to call them to see if they would still cover me. I was so scared they would say no, they asked me like a million questions such as 'do I have blood in my sputum' (no), 'am I on antibiotics' (yes) etc, very specific to cf which makes me think they must have researched it very well!! Anyway they have agreed to cover me as I booked the holiday before I went into hospital. Phew! But if I book another holiday, i'm not sure if they will cover me. She did tell me, but I was so nervous I didn't take in everything she said. She's sending me it all in the post anyway. So that's a relief!

Met up with my friend today, we went to the pub for a light lunch and took Alfie so we sat outside. We then took Alfie for a walk an got an icecream as it was quite sunny. Then coming home it started raining and we had to stop and put the roof up on my car lol! I'm meeting my friends again tonight for a few drinks.

Alf with my friend in the car

Me eating my icecream! (not one of my best pictures!!)