Home IVs

Well i came home Thursday night after begging the doctors to let me home, 6 days was by far enough time in hospital after only being in two weeks a week before then. So they said i could go home but only if i do a week of IVs. Normally i would say no as i don't like doing them at home but as i was so desperate to go home i agreed.

There horrible times aswell;

8.30am 3IVs

4.30pm 2IVs

8.30pm 1IV

12.30am 2IVs

Im not good with early mornings lol so its hard for me to go to bed late then up early to set an make them all up! But its worth it all to be home :) Iv got clinic tomorrow afternoon for my lungfuction and see if 10 days will be enough or if they want me to carry on until Friday. My weight is doing well :) i feel very field out lol

My cousin had a baby 8 weeks ago and he was born premature at just 26weeks but  he is a fighter and is coming home Monday :) hes done so very well!

I just wanna say that im so proud of my whole family! Every single member of my family (and there alot of us) are so brave with everything we go through, we really do fight with everything we have and we always do it with a smile. Love them all!

xxx


625 Hours on the list.

Disabled Parking rant...

Well this post is about an issue me and other Cf'ers have troubles with. People stare and shake their heads, give us dirty looks and some even come up to us and tell us how rude we are to park in a disabled parking spot. Iv had loads of trouble with people before, mostly elderly people because i look 'well' and so young.

I was talking to a young CF man today, his lungfuction is like mine very low but high enough to still do things for ourselves. He said he went to his chemist yesterday to pick up his meds and parked in a Disabled spot, he did have his blue badge up so he was 100% aloud to be there. He said as he got out the car an old man with a walking stick came up to him and started shouting that hes wasn't aloud to be there, he told him to move the car and show respect to others that need to park there. the thing that makes me laugh is its always elderly people that have a go at us, when they should know better. They always say how us young people never have respect then they don't even show it! 

I parked in a Disabled spot in town once, i was out of breath from walking as where i needed to be wasn't close to the car park. So trying to get my breath and old man confronted me and told me i wasn't allowed to park there, i never normally am rude to people and don't normally talk back at them, but i was fed up of people thinking the same thing about me all the time. I asked him how old he was he said 87, i said il be lucky if i make that age, i told him im waiting for new lungs and at his age he should know better than to judge people. he said sorry and drove off. I get this nearly every time im on my own and park... When someone else is with me its like there to scared to confront me.

Im so annoyed that this keeps happening, how rude people can be to judge us cos we look well. 

So next time don't judge a person that looks healthy, or worse dont go and tell them what your thinking, their probably already gong through enough and wont need someone telling them there fine when there not does not put us in the best of moods!

Just having a bit of a rant...im aloud im in hospital :) xx 

489 hours on the list

One step forward two steps back..

That what i feel like im doing at the moment, taking one step forward then two steps back. I came home 10 days ago, felt great was doing things all day, keeping busy, eating lots and sleeping well. Last Saturday i had my flu jab, on the Sunday i had a temp of 38 and was in bed all day so didnt go Cambridge as planned :( then i was fine on Monday just coughing a tad more. Then Wednesday i felt terrible, wasn't eating anything and couldn't stop coughing, was very breathless sitting down and very very tired. I rang Papworth to bring my clinic day forward but they said they had a bed available, Which they never normally do I'd normally have to wait 1-2 weeks. So i said il come in, as im now on the list i don't want my infection level getting high.

So im back in, same old meds, same old routine. Think il be in roughly 2 weeks again :(

But all for the good hopefully!

434 hours on the list