I haven't been updating my blog, I'm not sure why as i have been in hospital alot since TX and have had the time but i guess i don't what to moan about being in hospital more now then i was before i got my new lungs. i don't want to seem ungrateful in any way because I'm not, far from it in fact, I'm so happy I'm not on oxygen and not in a wheelchair anymore, i love the fact i can play for hours with Connor without getting tired and out of breath, i can walk my dog Roxy every day, i can do the house work and even love doing it after all these years of sat on the sofa while Matt cleans, i love the fact i don't cough and that i just feel well every day that i wake up.
but with all that I'm still in and out of hospital alot. its not the lungs, there in great condition and the Dr couldn't be happier with them but the anit rejection pills I'm on have messed my bloods up a bit so until that gets sorted out it looks like papworth is going to be my 2nd home for a few months yet.
i came in on the 8th this stay and its now the 25th and I'm still here and looking at another week or so yet.
fingers crossed i don't go mad before then.
In other news Connor started school 2 weeks ago, the Dr let me home on his 1st day so i could walk him to school and back but then i had to come back to the hospital and have only seen Connor 4 times after that :( i miss him but if i don't get my bloods sorted out he wont have a mummy to walk him to school so because of that i need to stay here.....it isn't making it easier knowing that.
I'm going to start work at my dads next month doing 16 hours a week while Connors at school, i cant wait as i haven't been to work in years and years. I'm really looking forward to it, makes me feel like I'm doing something with my life and not just sat wasting it.
I'm going to try and up date this blog every week now as i think it will help me with all the hospital stays.
Showing posts with label Hospital. Show all posts
Showing posts with label Hospital. Show all posts
Sunday, 25 September 2011
Friday, 18 June 2010
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.
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.
Sunday, 21 March 2010
Blog From Room 2
All my blog seemed to be is about me being ill these last few months lol
I came back in hospital on Friday for some i.v's and was meant to be going on on the Saturday, that's didn't go to plan when i had another turn on the i.v's, this time it was from Mero i.v. as gemma's words....evil i.v
so i got a temp over 40 and was so cold i couldn't stop shacking, they stripped me down and pulled my cover off and even put the air con on to cool me down! i wasn't happy at all as i was so cold to start with but they said if i didn't cool down then i could have a fit.
So i should be starting to have more i.v's on Monday and then they want to keep me till Wednesday to make sure everything is ok then i can go home and do the rest of the i.v's at home.
My friend Victoria had her 8th false call for a TX last night so that was really upsetting for me coz i just want her to get that new life so much, she is so strong and never shows that it has upset her or anything. it will be this year...it has to be.
9 weeks and 5 days till I'm a MRS! not long, there is so much i still need to do that we haven't sorted yet coz I'm not feeling gr8 but once I'm out of here i will get alot more done.
Connor came to see me today in hospital and we went out for lunch (with Matt, mum and dad too) i wont get to see him now till I'm home as he has pre-school on Mondays and Wednesday. i don't mind to much coz i know he don't like it here and gets bored easy so its not fair to keep him up here just for me.
When we came up here there was a note saying that we cant have flowers on the ward anymore :( Matt laughed and said it got him out of buying me them now! not that he did much before!
The new rooms are really nice, i'll have to get some photos before i leave. the toilet light just comes on when you open the door i love it! its all big and open, its gr8.
Going to go now but will blog again with what the next lot of i.v's are.
I came back in hospital on Friday for some i.v's and was meant to be going on on the Saturday, that's didn't go to plan when i had another turn on the i.v's, this time it was from Mero i.v. as gemma's words....evil i.v
so i got a temp over 40 and was so cold i couldn't stop shacking, they stripped me down and pulled my cover off and even put the air con on to cool me down! i wasn't happy at all as i was so cold to start with but they said if i didn't cool down then i could have a fit.
So i should be starting to have more i.v's on Monday and then they want to keep me till Wednesday to make sure everything is ok then i can go home and do the rest of the i.v's at home.
My friend Victoria had her 8th false call for a TX last night so that was really upsetting for me coz i just want her to get that new life so much, she is so strong and never shows that it has upset her or anything. it will be this year...it has to be.
9 weeks and 5 days till I'm a MRS! not long, there is so much i still need to do that we haven't sorted yet coz I'm not feeling gr8 but once I'm out of here i will get alot more done.
Connor came to see me today in hospital and we went out for lunch (with Matt, mum and dad too) i wont get to see him now till I'm home as he has pre-school on Mondays and Wednesday. i don't mind to much coz i know he don't like it here and gets bored easy so its not fair to keep him up here just for me.
When we came up here there was a note saying that we cant have flowers on the ward anymore :( Matt laughed and said it got him out of buying me them now! not that he did much before!
The new rooms are really nice, i'll have to get some photos before i leave. the toilet light just comes on when you open the door i love it! its all big and open, its gr8.
Going to go now but will blog again with what the next lot of i.v's are.
Friday, 15 January 2010
Weekend Leave
I'm home from hospital now for the weekend, I'm so happy to be home with Matt and Connor and be able to eat!
Never been so happy to eat before.
I got a get well Teddy from Victoria while i was in too, i have never been so spoilt before while i have been in lol
Thank you Vic!!!!!!!!!!!
Some very said news to report on to, Jess who after waiting for over 4 years for new lungs got the called she needed at the last hour only for the wait to be to long for her. Jess passed away after fighting for nearly two weeks.
R.I.P Jessica xxx
Never been so happy to eat before.
I got a get well Teddy from Victoria while i was in too, i have never been so spoilt before while i have been in lol
Thank you Vic!!!!!!!!!!!
Some very said news to report on to, Jess who after waiting for over 4 years for new lungs got the called she needed at the last hour only for the wait to be to long for her. Jess passed away after fighting for nearly two weeks.
R.I.P Jessica xxx
Monday, 4 January 2010
Compliance With Treatments
Gemma got me thinking about my CF today and how compliant i am with it.
The fact of the matter is that i have let it slip big time, i can sit here and say "oh but i cant fit it all in because i have Connor to look after" but its not that at all really, i should be doing it because it is my life and if i want to be here to see Connor grow up then I'm just going to have to suck it up and start doing them more.
What i do at the moment is insulin and night time times manly oh and Creon but i never miss Creon. i am missing out on my TOBI Neb's (do them once in a blue moon) and my DNAEs Neb's, morning pills and phyiso 2x a day.
and I'm hit and miss with my inhaler.
I'm so angry with my self and i cant keep going like this as i wont get on the TX list when i need to because you have to be fully compliant or they don't do the TX.
I have got a book and have done a page with all my meds in and then i can tick them or put a cross if i miss them.
I'm really going to try, i have done it before so i know i can if i put my mind to it.
Other news I'm waiting for a bed at papworth because I'm so tired and out of breath, i need a good rest and looking after.
I'm looking forward to some ME time too but will miss Connor more then words can say but its this or stay ill and just sit there and not playing with him or anything.
I don't want to be that kind of mum.
I'm going to join the gym soon too, well i think it will be opening up soon as it looks done. i cant wait, i hear its very good for your lungs and so is swimming so that will be what I'm doing over the next few months.
Connor is going to a new play school once I'm out of hospital as I'm fed up with the one that he is at now, there cr*p and its not good enough for him, were sending him to one that nearly twice the amount of money but its so much better for him and my dad and Matt's dad will be paying for it anyway so we don't have to worry about that at all and when he is 3 he will get it for free so its not for long.
Right I'm going and have a rest, I'll post next once I'm in hospital.
p.s happy new year everyone x
The fact of the matter is that i have let it slip big time, i can sit here and say "oh but i cant fit it all in because i have Connor to look after" but its not that at all really, i should be doing it because it is my life and if i want to be here to see Connor grow up then I'm just going to have to suck it up and start doing them more.
What i do at the moment is insulin and night time times manly oh and Creon but i never miss Creon. i am missing out on my TOBI Neb's (do them once in a blue moon) and my DNAEs Neb's, morning pills and phyiso 2x a day.
and I'm hit and miss with my inhaler.
I'm so angry with my self and i cant keep going like this as i wont get on the TX list when i need to because you have to be fully compliant or they don't do the TX.
I have got a book and have done a page with all my meds in and then i can tick them or put a cross if i miss them.
I'm really going to try, i have done it before so i know i can if i put my mind to it.
Other news I'm waiting for a bed at papworth because I'm so tired and out of breath, i need a good rest and looking after.
I'm looking forward to some ME time too but will miss Connor more then words can say but its this or stay ill and just sit there and not playing with him or anything.
I don't want to be that kind of mum.
I'm going to join the gym soon too, well i think it will be opening up soon as it looks done. i cant wait, i hear its very good for your lungs and so is swimming so that will be what I'm doing over the next few months.
Connor is going to a new play school once I'm out of hospital as I'm fed up with the one that he is at now, there cr*p and its not good enough for him, were sending him to one that nearly twice the amount of money but its so much better for him and my dad and Matt's dad will be paying for it anyway so we don't have to worry about that at all and when he is 3 he will get it for free so its not for long.
Right I'm going and have a rest, I'll post next once I'm in hospital.
p.s happy new year everyone x
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