Transplant and Car's

This well has been one of the most scary, hard, upsetting, exciting, stressful weeks of my life.

Last Monday i went for my first TX clinic with Matt, it was good and i know a bit more about what I'm going to be letting myself in for but what i will be getting back far more out weights the bad.
The Dr, Jas was his name, was a very softly spoken middle aged man with white hair and prada shoe's!
He made me feel very at ease with the whole thing and gave me all the facts and info and asked if i wanted to go away and think about what i wanted to do next but i said no i already know, i had been thinking about this for around a year now or so and my mind had always been in the same place, pro TX.
I have never once quested if i should really have one or not, i only have to look at Connor to make me stronger, there is no way that i will ever stop trying to stay alive because if i did that i was giving up on him in a way. I wasn't ever going to do that.
After talking to Jas i had to have some bloods done (5 bottles!) and they didn't have the baby blue butterfly needles that they use on the CF ward so it took 2 trys and and big needle for him to get the blood that the nurse needed. (i still have the bruises to show for it)
When that was all done with Matt held the cotton wool on my hand to stop the blood and im not sure if it was him holding my hand or just the fact someone was but i just started to cry, i felt so silly coz i wasn't upset with anything that Jas had said and i wasn't in pain, i just started crying.
The nurse was lovely he rubbed my back and said that it had been a big step for anyone and that it was good to let it out and have a good cry once in a while, after that i was fine.
Like nothing had happened.
I have just today got my app for my 2 day stay for the TX test, 14th march till 16th march. scary.

We also ordered my new motabiliy car this week, were getting a new C-Max and it will have my number plate on that my mum and dad got me for my 26th birthday last year.
I cant wait, its in panther black and looks fab!
We should be picking it up on he 23rd of may so a few months yet and we added a extra pack on that comes with...
Active Park Assist (Ultrasonic sensors confirm whether a gap is large enough to park in, and then operate the steering while you control the pedals)
Front And Rear Parking Sensors,
And comes with Power Fold Door Mirrors.

Cross Stitch

Forgot to say in the other post, I'm not in to cross stitching!
I'm doing pretty good so far, I'm doing a forever friends one for my friends little girl. it was for her 1st birthday but that was a week ago and I'm still only half way lol so she may be getting it for her 2nd birthday at this rate.
you would think i would have got it done with not working but i have to be in the mood for it and not too tired to do it.
i will put a photo up of it once its all done

Unsure

I'm very unsure about to moz app with the TX dr's...i don't know what to except or if they will do any test, i think the thing that is getting to me the most is that they could turn around and say no or that I'm too well.
Half of me thinks I'm to well but that half of me is the half that sits on the sofa all day bored, the only hard thing I'm doing is breathing and most of the time i don't think about it unless i get up and walk, but then if i do get up and say go to the toilet or fill the dishwasher or even make Connor something to eat i feel it, i feel so tired or breathless and just not well.
New lungs is the light at the end of the tunnel because i would hate it if this is all my life is, not living just surviving from day to day.
I cant work, i cant play with Connor, i cant take the dog out for a walk, i haven't been shopping since before Xmas and even that was with me in a chair with some one pushing me.
day to day life is getting hard.

Lost In The Post....

My last six months plus of blog updates must have got lost in the post...

I don't know how i have left it so long without blogging, it wasn't like i didn't think about doing it i guess i just never had the time to and this today wont be a long one as i just need to get my swing back in it to i think, slow and steady.

Ok here is a few small things that have been going on in the H household, we have got a puppy (well she is 6 months old now) Matt has given up work to look after me and i got my letter today for the date of my transplant talks...that is but a few things and i will fill you in more in the next instalment of my blog.

Feeds

I'm now on feeds now i have my PEG in, still a tad bit sore when i twist or bump it and i cant sleep on my belly anymore but I'm still really glad its in and I'm now doing feeds.
when i left the hospital they sent me home with a weeks worth of feeds and bits, i was all set to do 2 bags on my 1st night home but the hospital had forgot to give me the bit of tube that connects the 2 bags together so for the last week i have only been doing one bag a night but have got that down to having it over 2 hours so that's great.
i do my feeds around an hour or 2 after my dinner as i cant stand doing them overnight as the tube gets in the way and I'm always worried that I'm going to pull it out in my sleep or something.
Anyway i got my 1st lot of feed and bits today from homeward (suppliers) so i can now start and do 2 bags of feed a night!!!!
I weighed myself but it seems i have lost a kg! i think from that it shows that i do need 2 bags a night (2000 cal's) and maybe need to keep a better eye on my BM's and maybe need to tweak my nova rapid a bit, I have just got this new app on my iPhone for BM's and that so that should help as i always forget to write down what they are and then forget when the hospital ask me!

Going to do my 1st gym workout on Monday when Connor is at school, well i hope anyway! have to see if the working men are coming to change the front door on Monday or Tuesday. cant wait to have a lovely nice clean white door and not the nasty paint peeling brown wooden one that lets all the cold air in.

Me and Connor did some cooking today and been playing in the garden, i got the swimming pool out for him but it seemed a bit cold to let him get in it, it isn't as hot as it was yesterday but he was at school all day yesterday so he couldn't use it then.
Today he has mainly stayed in just his pants! i don't mind as its hot, I'm still in my PJ's today so how can i tell him to get dressed!

Really hungry and cant wait for my dinner today! going to make pork chops with baby new pots and salad i think for me and Connor, Matt is going to the gym tonight so he wont be eating till around 9pm when he gets in and i will be on my feed by then so i eat dinner with Connor now and not Matt in the week and at the weekend we all eat dinner together.

Its All Go!

Well the hospital rang me yesterday to ask if i wanted my PEG fitted on Tuesday! as if i would say no to that, they wanted to know how my chest was and i said it was ok but would prob need i.v's in 2 weeks at my next clinic app.
They wanted to ask the Dr what was going to happen and if i would need i.v's before the op so said they would ring me back.
An hour later my CF nurse rang me back and asked if i could go to clinic today so the Dr could see how i was and then i would come in Monday or Tuesday and the op doing on Tuesday!

I'm happy that its getting done but also a little off coz its so fast and now i cant go to the gym for around a month? and cant go swimming now for 3 months or when they put my button in and take the tube out.

Anyway I'm going to go and start getting ready.

Mrs

I'm now a married woman!
The day was great and i loved every minute of it, everyone said it was a fab day and they all had a lovely time. my dad got upset reading his speech out and Russ (best man 2) got lots of laughs!
in the evening i changed out my dress in the jeans and t-shirt!!!!! only i could do that on my wedding day as so many people told me.


I'll add some photos of the day for you all...

Few things have been going on this last few weeks,

1st off were getting a new bathroom and a new front door were just waiting for the builder to get back to us with a start date, when the bathroom is all done I'm going shopping and getting new towels and bits to go in there so its all lovely and nice!

2nd we have a dishwasher now!!!! my brother fitted it for us yesterday and I'm on my 2nd load of dishes in it (might have put things in that didn't need washing so i could use it) it isn't very loud so that's good and its also a slimline one so its really very cute looking!

3rd joined up with the gym last night in an attempt to get my LF up and out of the 30% range as I'm really not liking it being there, next papworth app isn't until 2 weeks today so that's a nice few weeks without having to worry about my LF and gives me chance to get it up with the gym. I'm starting swimming and the bike 1st and think i might join a class or two of yoga for something.

4th got my PEG date for around the end of Aug so I'm pretty angry with that as they said it would be 2 weeks after the wedding and so i thought they would be booking it in march for June time but nope they didn't book it till just now grrr!
but on the + side of things i get to enjoy swimming without a button for 2 months before not going swimming for 3 months due to having the tube in.

don't really have much more to say at the mo, I'll blog again with my 1st day at the gym next week!!!