What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

How often do you go to the hospital ?

A

anonymous

New member
Hey Id just like to ask how much time do ye guys spend in the hospital ?
Is it every 4mths or what ? Does your FEv1 come up while in hosp ?
What are the usual procedures? How much weight do you gain? ...So Ill tell you bout my year so far ....

I have been admitted to hosp in April as my "yearly clear out" ! I usually go about 9-12 mths each time!

Then again 3 wks later .... I wasnt fully recovered !

Then again 6 wks later .... gets confusing ... no exact dates !

Then about 7 wks later because I was going on Holiday!

Just out of hosp a week since yesterday !!!!!!!!!!!!!!

Now they want to bring me in Dec to get me well for Christmas !

Does anyone else have "phases" like this! My Fev1 has been as low as 48% and stayed around 57-62% for a while and a week ago it was 76% my highest in 3 yrs!
I know its a progressive disease but has anyone else had periods like this! I am hoping I can return to "normal" and carry on as I did prior to April !

So I would just people to summarise their year in regards to health! I only culture Heavy Staph and Light Pseudo rarely and the odd haemophilus (rarely) ! I have had Pseudo but I can seem to get rid of it quite easliy !

17 yr old w/cf
 
A

anonymous

New member
Hey Id just like to ask how much time do ye guys spend in the hospital ?
Is it every 4mths or what ? Does your FEv1 come up while in hosp ?
What are the usual procedures? How much weight do you gain? ...So Ill tell you bout my year so far ....

I have been admitted to hosp in April as my "yearly clear out" ! I usually go about 9-12 mths each time!

Then again 3 wks later .... I wasnt fully recovered !

Then again 6 wks later .... gets confusing ... no exact dates !

Then about 7 wks later because I was going on Holiday!

Just out of hosp a week since yesterday !!!!!!!!!!!!!!

Now they want to bring me in Dec to get me well for Christmas !

Does anyone else have "phases" like this! My Fev1 has been as low as 48% and stayed around 57-62% for a while and a week ago it was 76% my highest in 3 yrs!
I know its a progressive disease but has anyone else had periods like this! I am hoping I can return to "normal" and carry on as I did prior to April !

So I would just people to summarise their year in regards to health! I only culture Heavy Staph and Light Pseudo rarely and the odd haemophilus (rarely) ! I have had Pseudo but I can seem to get rid of it quite easliy !

17 yr old w/cf
 
A

anonymous

New member
Hey Id just like to ask how much time do ye guys spend in the hospital ?
Is it every 4mths or what ? Does your FEv1 come up while in hosp ?
What are the usual procedures? How much weight do you gain? ...So Ill tell you bout my year so far ....

I have been admitted to hosp in April as my "yearly clear out" ! I usually go about 9-12 mths each time!

Then again 3 wks later .... I wasnt fully recovered !

Then again 6 wks later .... gets confusing ... no exact dates !

Then about 7 wks later because I was going on Holiday!

Just out of hosp a week since yesterday !!!!!!!!!!!!!!

Now they want to bring me in Dec to get me well for Christmas !

Does anyone else have "phases" like this! My Fev1 has been as low as 48% and stayed around 57-62% for a while and a week ago it was 76% my highest in 3 yrs!
I know its a progressive disease but has anyone else had periods like this! I am hoping I can return to "normal" and carry on as I did prior to April !

So I would just people to summarise their year in regards to health! I only culture Heavy Staph and Light Pseudo rarely and the odd haemophilus (rarely) ! I have had Pseudo but I can seem to get rid of it quite easliy !

17 yr old w/cf
 
J

JazzysMom

New member
Last year from March to August my health was in total turmoil. During March, April, May, June & July no matter what we did I would only improve to a certain point & I never actually felt good. Between being inthe hosptal & on home iv's I truly thought that was as good as it gets. Then something happened over the summer last year. I started to actually feel better. I started making improvements & could see the fruit of my hard work. In October of last year I was able to be Matron of Honor at my best friends wedding. In May of last year I missed being in another friends wedding so this was important. We still dont know to this day for sure why I had such problems & it took a toll emotionally. I think many of us have had those moments. The times where nothing seems to work in our favor. Dont give up. Just go with the flow & work hard. Things will finally fall into place!
 
J

JazzysMom

New member
Last year from March to August my health was in total turmoil. During March, April, May, June & July no matter what we did I would only improve to a certain point & I never actually felt good. Between being inthe hosptal & on home iv's I truly thought that was as good as it gets. Then something happened over the summer last year. I started to actually feel better. I started making improvements & could see the fruit of my hard work. In October of last year I was able to be Matron of Honor at my best friends wedding. In May of last year I missed being in another friends wedding so this was important. We still dont know to this day for sure why I had such problems & it took a toll emotionally. I think many of us have had those moments. The times where nothing seems to work in our favor. Dont give up. Just go with the flow & work hard. Things will finally fall into place!
 
J

JazzysMom

New member
Last year from March to August my health was in total turmoil. During March, April, May, June & July no matter what we did I would only improve to a certain point & I never actually felt good. Between being inthe hosptal & on home iv's I truly thought that was as good as it gets. Then something happened over the summer last year. I started to actually feel better. I started making improvements & could see the fruit of my hard work. In October of last year I was able to be Matron of Honor at my best friends wedding. In May of last year I missed being in another friends wedding so this was important. We still dont know to this day for sure why I had such problems & it took a toll emotionally. I think many of us have had those moments. The times where nothing seems to work in our favor. Dont give up. Just go with the flow & work hard. Things will finally fall into place!
 
S

Scarlett81

New member
Something should click in for some reason-it seems like its never going to end, and then for no apparant reason you start to feel better as melissa said.
I typically go 3-4 weeks of IVs at home. But until I've stopped IVs I don't feel 100% back to myself.
 
S

Scarlett81

New member
Something should click in for some reason-it seems like its never going to end, and then for no apparant reason you start to feel better as melissa said.
I typically go 3-4 weeks of IVs at home. But until I've stopped IVs I don't feel 100% back to myself.
 
S

Scarlett81

New member
Something should click in for some reason-it seems like its never going to end, and then for no apparant reason you start to feel better as melissa said.
I typically go 3-4 weeks of IVs at home. But until I've stopped IVs I don't feel 100% back to myself.
 
H

HairGirl

New member
My health can be like that, I had major episodes of hemoptysis about 4 years ago, was in the hospital for 2 weeks and then a couple days every week for 4 more weeks! I had 7 Emblizations in those 6 weeks, my pft's went down 20% and haven't gone back up since. Then things got better only getting sick 3 times a year, then it was only in Oct. and Jan. and then I was doing really really well!!!!!! And then BOOM! I've had the worst hospitalization and recovery of my life so far. My pft's went down another 20% so I'm in the twenties and really need to get them back up again!!! after being on IV's for 8 out of the last nine weeks I'm finally feeling better!

So don't get discouraged somethings going on with your body that is taking a long time to get better. I know I will and so will you.
 
H

HairGirl

New member
My health can be like that, I had major episodes of hemoptysis about 4 years ago, was in the hospital for 2 weeks and then a couple days every week for 4 more weeks! I had 7 Emblizations in those 6 weeks, my pft's went down 20% and haven't gone back up since. Then things got better only getting sick 3 times a year, then it was only in Oct. and Jan. and then I was doing really really well!!!!!! And then BOOM! I've had the worst hospitalization and recovery of my life so far. My pft's went down another 20% so I'm in the twenties and really need to get them back up again!!! after being on IV's for 8 out of the last nine weeks I'm finally feeling better!

So don't get discouraged somethings going on with your body that is taking a long time to get better. I know I will and so will you.
 
H

HairGirl

New member
My health can be like that, I had major episodes of hemoptysis about 4 years ago, was in the hospital for 2 weeks and then a couple days every week for 4 more weeks! I had 7 Emblizations in those 6 weeks, my pft's went down 20% and haven't gone back up since. Then things got better only getting sick 3 times a year, then it was only in Oct. and Jan. and then I was doing really really well!!!!!! And then BOOM! I've had the worst hospitalization and recovery of my life so far. My pft's went down another 20% so I'm in the twenties and really need to get them back up again!!! after being on IV's for 8 out of the last nine weeks I'm finally feeling better!

So don't get discouraged somethings going on with your body that is taking a long time to get better. I know I will and so will you.
 
You must log in or register to reply here.
Top