Hello all! Iv been in hospital a week today, its gone quite fast, iv been doing some nail orders to keep me busy :) So as i told you in my last blogg my infection lever was 51 im happy to say its gone down to 17 :) Yay... i was hoping that would be low enough to finish my IVs Thursday but the Dr said he wants me on stay on them until Christmas eve, he said i can go home Thursday but do them myself over the weekend. Normally i wouldn't mind, but iv been planing this weekend for ages now and i don't want to be tied down to meds and times... and i don't fancy travelling to Pappy and back Xmas eve.. So i asked the nurse to ask them to change there minds and he said they will have a meeting Wednesday and met me know. Also they want me to have my Annual review Thursday before i go, which im not happy about, iv been here all week and they wanna do it the day i go home.. they said il be done early but i know what these are like, i have them every year and i am never done on time, im always here for the whole day. Its my brothers birthday Thursday so i want to be home early to see him. Soo i have lots of begging to do!
Fingers crossed i can go home off IVs :)
2,172 hours on the list
Monday, 17 December 2012
Friday, 14 December 2012
Panic Attack & Pee... haha
So i came in for IVs on Monday after ringing Pappy and telling them im not feeling good.. i wanted to make sure id be well for Christmas too, so they said id have to wait a while because there so busy for beds.. I said i wouldn't mind starting them at home but they said they didnt even have any room for me to wait to pick up my IVs. So i waited almost a week which wasn't to bad but i could feel my chest had got worse in that week.
Last Friday i had a panic attack, iv never had one before so this scared me alot! I took my gramps up to sainsburys and i waited in the car for him. I parked up and just put some crimbo tunes ons. I knew i wanted to cough so i got my tissues ready, but as soon as i started coughing i couldn't take a breath in, i just couldn't catch my breath...it felt like ages, i knew it was only seconds but i just couldn't calm myself i opened my car door to get fresh air and then struggled to get to my oxygen which was behind me, i finally got it on but i still couldn't breath so i whacked my oxygen up to 6Lts (didnt see that at the time). Then where i was panicking i started to wee!!! i was so embarrassed! i couldn't stop! Its funny to look back at it now and laugh but at the time it was horrible! i finally caught my breath and drove home to get changed... after that i was to scared to cough again, i spent the rest off the day in bed feeling sorry for myself. But im okay about it now and just have to be more prepared in case it happens again.
So i came in on Monday when they told me too, they said come in at 3 and your bed will be ready...Ha! i will never believe them again.. I got here at 3 like a good little lamb and i went to walk into the room they said id be in and they shouted at me not to go in there as someone was there.. The room i was going in was not ready at all, there was a young girl still in there waiting to go home. So i had to wait in the corridor until she went, an hour went by and she left then i had to wait for the cleaners to come the took another hour! So after two hours of sitting in the corridor i was aloud in! Then much to my disgust they tell me the internet doesn't work in this room! So i have no internet and no phone signal to talk to anyone! but to top it off my telly also broke the next day... i was having no luck what so ever haha but now they have moved me to a different room with internet and signal so i can be social again! hehe
My CRP (infection levels) were 55 when i came in, the dropped down to 44 but are now back at 51 for some reason, i feel like iv pick up a bit of a cold while iv been here so hopefully in a few days time it will go down and il be home for Christmas! I wanna get in the Christmas mood and its hard to when your stuck in here... Iv got my Brother and Nans birthday next week i wanna be home for, and i need to have my nails done asap!! haha
Well my weights not changed much staying the same which is good :) And i have now been on the Transplant list 3 months! wow its gone so fast! I keep having nightmares about it though..every few nights il have a dream about it and wake up all sweaty and feeling sick.. but i just have to try and not fixate on them..
So thats all folks! Il let you know when il be coming home & my crp ect.. :)
xxx
2,096 hours on the list
Last Friday i had a panic attack, iv never had one before so this scared me alot! I took my gramps up to sainsburys and i waited in the car for him. I parked up and just put some crimbo tunes ons. I knew i wanted to cough so i got my tissues ready, but as soon as i started coughing i couldn't take a breath in, i just couldn't catch my breath...it felt like ages, i knew it was only seconds but i just couldn't calm myself i opened my car door to get fresh air and then struggled to get to my oxygen which was behind me, i finally got it on but i still couldn't breath so i whacked my oxygen up to 6Lts (didnt see that at the time). Then where i was panicking i started to wee!!! i was so embarrassed! i couldn't stop! Its funny to look back at it now and laugh but at the time it was horrible! i finally caught my breath and drove home to get changed... after that i was to scared to cough again, i spent the rest off the day in bed feeling sorry for myself. But im okay about it now and just have to be more prepared in case it happens again.
So i came in on Monday when they told me too, they said come in at 3 and your bed will be ready...Ha! i will never believe them again.. I got here at 3 like a good little lamb and i went to walk into the room they said id be in and they shouted at me not to go in there as someone was there.. The room i was going in was not ready at all, there was a young girl still in there waiting to go home. So i had to wait in the corridor until she went, an hour went by and she left then i had to wait for the cleaners to come the took another hour! So after two hours of sitting in the corridor i was aloud in! Then much to my disgust they tell me the internet doesn't work in this room! So i have no internet and no phone signal to talk to anyone! but to top it off my telly also broke the next day... i was having no luck what so ever haha but now they have moved me to a different room with internet and signal so i can be social again! hehe
My CRP (infection levels) were 55 when i came in, the dropped down to 44 but are now back at 51 for some reason, i feel like iv pick up a bit of a cold while iv been here so hopefully in a few days time it will go down and il be home for Christmas! I wanna get in the Christmas mood and its hard to when your stuck in here... Iv got my Brother and Nans birthday next week i wanna be home for, and i need to have my nails done asap!! haha
Well my weights not changed much staying the same which is good :) And i have now been on the Transplant list 3 months! wow its gone so fast! I keep having nightmares about it though..every few nights il have a dream about it and wake up all sweaty and feeling sick.. but i just have to try and not fixate on them..
So thats all folks! Il let you know when il be coming home & my crp ect.. :)
xxx
2,096 hours on the list
Thursday, 29 November 2012
2weeks home!
Two weeks iv been home now, and iv had a cold most of the time. yukky!
The day after i came home i was feeling very short of breath and just put it down to me moving around more and walking, but i continued to feel the same on the Monday and Tuesday. I spoke to one of my CF friends and she was feeling the same, so we thought we could both be feeling like this because of the cold weather. I have to remember my lungfuction has never been this low in this weather before so im going to feel a difference. So i rang Pappy to bring my clinic forward to this week, but i didnt go as i am a scaredy cat about driving in the dark lol so my dad is driving me next week :)
Iv had a cold all this week, coughing and sneezing. iv now lost my voice too :( But im not staying in bed im still up and about doing things :) i like to keep busy!
Iv now been on the Transplant list 10 weeks, gone so very fast! Im still jumping to my phone every time it rings lol don't think il every get used to it.. One of my friends friends had his lung transplant yesterday after waiting a very long time! so hope he has a fast recovery :)
Thats all for now :) xx
1,734 hours on the list
The day after i came home i was feeling very short of breath and just put it down to me moving around more and walking, but i continued to feel the same on the Monday and Tuesday. I spoke to one of my CF friends and she was feeling the same, so we thought we could both be feeling like this because of the cold weather. I have to remember my lungfuction has never been this low in this weather before so im going to feel a difference. So i rang Pappy to bring my clinic forward to this week, but i didnt go as i am a scaredy cat about driving in the dark lol so my dad is driving me next week :)
Iv had a cold all this week, coughing and sneezing. iv now lost my voice too :( But im not staying in bed im still up and about doing things :) i like to keep busy!
Iv now been on the Transplant list 10 weeks, gone so very fast! Im still jumping to my phone every time it rings lol don't think il every get used to it.. One of my friends friends had his lung transplant yesterday after waiting a very long time! so hope he has a fast recovery :)
Thats all for now :) xx
1,734 hours on the list
Thursday, 15 November 2012
Need your Prays...
One of my friends is having a hard time at the moment.. Shes on the Transplant list and has been for nearly 6 months now. This is a post from her fiancé -
Hi guys it's Josh updating here on behalf of Kerry:
We have had the GP come to visit Kerry today as she took a bit of a bad turn through the night and he has confirmed she has pneumonia which explains all her symptoms and he is helping her to get a bi-pap machine which should allow her to have a break from the exhausting task of breathing and it could have a good impact on her quality of life.
We
Hi guys it's Josh updating here on behalf of Kerry:
We have had the GP come to visit Kerry today as she took a bit of a bad turn through the night and he has confirmed she has pneumonia which explains all her symptoms and he is helping her to get a bi-pap machine which should allow her to have a break from the exhausting task of breathing and it could have a good impact on her quality of life.
We
also have the hospice consultant coming to visit tomorrow to see about making her more comfortable because right now she is struggling a lot.
I know for a fact she is overwhelmed by all your messages after seeing the smile on her face every time I read her the kind, supportive comments from you guys, it really does brighten her up and keeps her positive head on, so thank you for that.
One thing for sure, as you all know, Kerry is a fighter (she doesn't know I've added this to the comment) but I'm so proud to call her my fiancé and even with everything she puts up with, she never ceases to amaze me with her positive attitude. And I want her to know that the puppies and I are so proud of how far she's come and the progress she's made despite the obstacles she's faced particularly this year (multiple lung collapses etc) and as two years ago we were told she wouldn't even be here right now so the fact she is still with us and her weight certainly wouldn't be where it is today, just goes to show she really is determined to get her new lungs (or stubborn depending on how you look at it lol!)
With this positive spirit, the amazing support and the love from her family and friends, I know she WILL get through this.
I know for a fact she is overwhelmed by all your messages after seeing the smile on her face every time I read her the kind, supportive comments from you guys, it really does brighten her up and keeps her positive head on, so thank you for that.
One thing for sure, as you all know, Kerry is a fighter (she doesn't know I've added this to the comment) but I'm so proud to call her my fiancé and even with everything she puts up with, she never ceases to amaze me with her positive attitude. And I want her to know that the puppies and I are so proud of how far she's come and the progress she's made despite the obstacles she's faced particularly this year (multiple lung collapses etc) and as two years ago we were told she wouldn't even be here right now so the fact she is still with us and her weight certainly wouldn't be where it is today, just goes to show she really is determined to get her new lungs (or stubborn depending on how you look at it lol!)
With this positive spirit, the amazing support and the love from her family and friends, I know she WILL get through this.
Please keep her in your thoughts and prays.
Wednesday, 14 November 2012
Christmas & Hospital!
Iv been getting alot of different feeling lately. I was doing a bit of Christmas shopping this week and it hit me that i could get my lungs before Christmas, then i thought what if the op didnt go to plan and that was it? So i want to make this Christmas very special! Iv nearly done all my Crimbo shopping!! Its so organised for me haha...
Im going to take my little brothers to scottsdales soon, i cant wait!! Going to take one of my youngest brothers to see Father Christmas :) Being there gets me so excited for Christmas, Im in charge of decorating the house this year!! YAY! hehe
So hospital news .. Im still in hospital day 7, my infection levels have gone from 45 to 19 so on the right track :) Iv been extremely bored this time round but feeling good! Chest feel clearer, hope my lungfuction is higher than 20% this time... well even if it stays the same il be happy :)
iv now been on the Transplant list 8 weeks!! Gone so fast!
1,370 Hours on the list
Im going to take my little brothers to scottsdales soon, i cant wait!! Going to take one of my youngest brothers to see Father Christmas :) Being there gets me so excited for Christmas, Im in charge of decorating the house this year!! YAY! hehe
So hospital news .. Im still in hospital day 7, my infection levels have gone from 45 to 19 so on the right track :) Iv been extremely bored this time round but feeling good! Chest feel clearer, hope my lungfuction is higher than 20% this time... well even if it stays the same il be happy :)
iv now been on the Transplant list 8 weeks!! Gone so fast!
1,370 Hours on the list
Friday, 2 November 2012
Nearly 3 weeks!
Oh my gosh! its been nearly 3 weeks since i finished my IVs!! Yaaay :) Haven't gone that long without going into hospital in ages.. since June time i think, wow! So iv been enjoying my time at home, relaxing and trying to keep busy. I had my Button changed to a bigger size last week, i had a nurse come out to do it for me and she blooming hurt!!
i had to lay flat and she took out my old button easy, it felt very strange though, then she got the new button but it wouldn't go in...she tried for a while to get it in. It was so sore and very painful. I nearly ended up biting my nans hand lol. So it wouldn't go in, so she got some olive oil to put around it to help. She finally got it in. 'we have to be cruel to be kind' she said. Wasn't her blooming belly going through all this though! lol.
I also went shopping in a wheel chair for the first time last week. I had been dreading this for ages, but i done it and it really wasn't bad, although it was in a place where i didnt know anyone. Think id feel different if it was in town. But i done it and im proud lol
So iv got clinic on Monday and iv got IVs planned on the 12th for two weeks. Il update after then!
Thank you for reading again :)
1,082 Hours on the Transplant list
i had to lay flat and she took out my old button easy, it felt very strange though, then she got the new button but it wouldn't go in...she tried for a while to get it in. It was so sore and very painful. I nearly ended up biting my nans hand lol. So it wouldn't go in, so she got some olive oil to put around it to help. She finally got it in. 'we have to be cruel to be kind' she said. Wasn't her blooming belly going through all this though! lol.
I also went shopping in a wheel chair for the first time last week. I had been dreading this for ages, but i done it and it really wasn't bad, although it was in a place where i didnt know anyone. Think id feel different if it was in town. But i done it and im proud lol
So iv got clinic on Monday and iv got IVs planned on the 12th for two weeks. Il update after then!
Thank you for reading again :)
1,082 Hours on the Transplant list
Sunday, 14 October 2012
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.
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.
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