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Hospitalizations
- Thread starter smbriggs
- Start date
Emily65Roses
New member
I don't go in very often, but I go on IVs twice a year (give or take 1). I am just able to do them at home unless I'm going on a new med (where they need to monitor possible side effects), and that hasn't happened in over a year, I believe. It'll happen the next time they want to try a new IV med, but for the time being, they're satisfied just using the ones I've already been on (Gentomycin, Tobramycin, Ceftaz, Zosyn, and Meropenem).
Emily65Roses
New member
I don't go in very often, but I go on IVs twice a year (give or take 1). I am just able to do them at home unless I'm going on a new med (where they need to monitor possible side effects), and that hasn't happened in over a year, I believe. It'll happen the next time they want to try a new IV med, but for the time being, they're satisfied just using the ones I've already been on (Gentomycin, Tobramycin, Ceftaz, Zosyn, and Meropenem).
bgchastain
New member
I usually go into the hospital once a year. This past year was a little worse for me than usual, I had to be on home IV's for 3 weeks on top of my once a year stay, but hopefully 2006 will be better.
bgchastain
New member
I usually go into the hospital once a year. This past year was a little worse for me than usual, I had to be on home IV's for 3 weeks on top of my once a year stay, but hopefully 2006 will be better.
Interesting that you say this. I had the same thought / shock when I started visiting this site. Was amazed their were adults in the 90's.
I don't go into the hospital.
If I have too I would do home IV's. Personally I find the people that do the care for you in hospitals (nurses) generally totally incompetent and with the Boston (I think it was) outbreak /cross contamination of b. cepacia - thanks anyway. Anyone else get freaked out by the thought of being hospitalized? I'd rather get up in the middle of the night to do my treatment than have some stranger in the dark inserting who knows what in the bag. It's sad I don't trust working America in general. Now I know some of you probably have great nurse stories but personally I am 100% compliant and frankly can do a better job taking care of myself (#1) than someone that has to take care of who knows how many people and still look out for themself. Things like getting my drip started 30 min. late really irritates me because if I was at home I'd of started it and am not allowed to do it myself in the hospital. Another thing is how they want to control all the med's you take when I'm good at dispensing / taking my own meds. I had to tell them no way when they didn't want me to use my birth control pill pack I was half way through because they needed to dispense it.
All I can do is hope that my diligence pays off and keeps me healthy because if I have to depend on US healthcare I'm going to feel that I am on shaky ground. Thank God for a husband that will also represent my rights /needs in the case that I can not.
Here's my history:
born 1978
hospitalized 1979, 1980
then not until 1999 - home IV
hospitalized 2000 - my mom thought it would be a good idea to start 'tune-ups' since I saw a big loss in lung capacity with the '99 pneumonia I had (90's down to 70's)
In retrospect this wasn't such a hot idea, was healthy, and didn't up my numbers. For good or bad, I found out I was allergic to cephalasporins (Ceftax) due to a hive breakout and also grew my distaste for hospitals during this short 4 day stay (when I req. that I go home to finish my IVs).
I don't go into the hospital.
If I have too I would do home IV's. Personally I find the people that do the care for you in hospitals (nurses) generally totally incompetent and with the Boston (I think it was) outbreak /cross contamination of b. cepacia - thanks anyway. Anyone else get freaked out by the thought of being hospitalized? I'd rather get up in the middle of the night to do my treatment than have some stranger in the dark inserting who knows what in the bag. It's sad I don't trust working America in general. Now I know some of you probably have great nurse stories but personally I am 100% compliant and frankly can do a better job taking care of myself (#1) than someone that has to take care of who knows how many people and still look out for themself. Things like getting my drip started 30 min. late really irritates me because if I was at home I'd of started it and am not allowed to do it myself in the hospital. Another thing is how they want to control all the med's you take when I'm good at dispensing / taking my own meds. I had to tell them no way when they didn't want me to use my birth control pill pack I was half way through because they needed to dispense it.
All I can do is hope that my diligence pays off and keeps me healthy because if I have to depend on US healthcare I'm going to feel that I am on shaky ground. Thank God for a husband that will also represent my rights /needs in the case that I can not.
Here's my history:
born 1978
hospitalized 1979, 1980
then not until 1999 - home IV
hospitalized 2000 - my mom thought it would be a good idea to start 'tune-ups' since I saw a big loss in lung capacity with the '99 pneumonia I had (90's down to 70's)
In retrospect this wasn't such a hot idea, was healthy, and didn't up my numbers. For good or bad, I found out I was allergic to cephalasporins (Ceftax) due to a hive breakout and also grew my distaste for hospitals during this short 4 day stay (when I req. that I go home to finish my IVs).
Interesting that you say this. I had the same thought / shock when I started visiting this site. Was amazed their were adults in the 90's.
I don't go into the hospital.
If I have too I would do home IV's. Personally I find the people that do the care for you in hospitals (nurses) generally totally incompetent and with the Boston (I think it was) outbreak /cross contamination of b. cepacia - thanks anyway. Anyone else get freaked out by the thought of being hospitalized? I'd rather get up in the middle of the night to do my treatment than have some stranger in the dark inserting who knows what in the bag. It's sad I don't trust working America in general. Now I know some of you probably have great nurse stories but personally I am 100% compliant and frankly can do a better job taking care of myself (#1) than someone that has to take care of who knows how many people and still look out for themself. Things like getting my drip started 30 min. late really irritates me because if I was at home I'd of started it and am not allowed to do it myself in the hospital. Another thing is how they want to control all the med's you take when I'm good at dispensing / taking my own meds. I had to tell them no way when they didn't want me to use my birth control pill pack I was half way through because they needed to dispense it.
All I can do is hope that my diligence pays off and keeps me healthy because if I have to depend on US healthcare I'm going to feel that I am on shaky ground. Thank God for a husband that will also represent my rights /needs in the case that I can not.
Here's my history:
born 1978
hospitalized 1979, 1980
then not until 1999 - home IV
hospitalized 2000 - my mom thought it would be a good idea to start 'tune-ups' since I saw a big loss in lung capacity with the '99 pneumonia I had (90's down to 70's)
In retrospect this wasn't such a hot idea, was healthy, and didn't up my numbers. For good or bad, I found out I was allergic to cephalasporins (Ceftax) due to a hive breakout and also grew my distaste for hospitals during this short 4 day stay (when I req. that I go home to finish my IVs).
I don't go into the hospital.
If I have too I would do home IV's. Personally I find the people that do the care for you in hospitals (nurses) generally totally incompetent and with the Boston (I think it was) outbreak /cross contamination of b. cepacia - thanks anyway. Anyone else get freaked out by the thought of being hospitalized? I'd rather get up in the middle of the night to do my treatment than have some stranger in the dark inserting who knows what in the bag. It's sad I don't trust working America in general. Now I know some of you probably have great nurse stories but personally I am 100% compliant and frankly can do a better job taking care of myself (#1) than someone that has to take care of who knows how many people and still look out for themself. Things like getting my drip started 30 min. late really irritates me because if I was at home I'd of started it and am not allowed to do it myself in the hospital. Another thing is how they want to control all the med's you take when I'm good at dispensing / taking my own meds. I had to tell them no way when they didn't want me to use my birth control pill pack I was half way through because they needed to dispense it.
All I can do is hope that my diligence pays off and keeps me healthy because if I have to depend on US healthcare I'm going to feel that I am on shaky ground. Thank God for a husband that will also represent my rights /needs in the case that I can not.
Here's my history:
born 1978
hospitalized 1979, 1980
then not until 1999 - home IV
hospitalized 2000 - my mom thought it would be a good idea to start 'tune-ups' since I saw a big loss in lung capacity with the '99 pneumonia I had (90's down to 70's)
In retrospect this wasn't such a hot idea, was healthy, and didn't up my numbers. For good or bad, I found out I was allergic to cephalasporins (Ceftax) due to a hive breakout and also grew my distaste for hospitals during this short 4 day stay (when I req. that I go home to finish my IVs).
Thru my child good I averaged 7 years inbetween. In the my teens over 7. In my twenties about every 5 years. In my thirties (more so since having my daughter) I went to every 3 years. Now I average 18 months tho last year was 2 times in 3 months plus all the home iv's. I think I have stabalized myself. My body has changed a lot & I need to be more aware of things starting to brew then I use to. This has made it much easier to catch things before they are bad enough requiring hospital stays!
Thru my child good I averaged 7 years inbetween. In the my teens over 7. In my twenties about every 5 years. In my thirties (more so since having my daughter) I went to every 3 years. Now I average 18 months tho last year was 2 times in 3 months plus all the home iv's. I think I have stabalized myself. My body has changed a lot & I need to be more aware of things starting to brew then I use to. This has made it much easier to catch things before they are bad enough requiring hospital stays!
thelizardqueen
New member
I'm lucky that I've only been in hospital once in my life, and that was when I was 16. I have CF very mildly in my chest, and only need inhaled meds and cipro when I am sick.
thelizardqueen
New member
I'm lucky that I've only been in hospital once in my life, and that was when I was 16. I have CF very mildly in my chest, and only need inhaled meds and cipro when I am sick.
I have never had to stay in the hospital for iv's or anything else. I am 22 and had actually to do iv once but i would just stay there for 2 hours at a time and come back home leading a normal life for those 2 weeks. That was about 5 years ago. Im not sure if mine is a mild form of the disease. I cough a little bit everyday in the morning especially,but if i have to work or go to school or something like that, my cough wont affect me at all, I only cough more if im doing my treatment. I do get more tired than other people, not being able to run, for example, for like more than a few minutes.. I am on pulmozyme everyday and on Tobi. No oral antiobiotics unless i get a cold. For my surprise anyway, my pft's are incredibly low.
I have never had to stay in the hospital for iv's or anything else. I am 22 and had actually to do iv once but i would just stay there for 2 hours at a time and come back home leading a normal life for those 2 weeks. That was about 5 years ago. Im not sure if mine is a mild form of the disease. I cough a little bit everyday in the morning especially,but if i have to work or go to school or something like that, my cough wont affect me at all, I only cough more if im doing my treatment. I do get more tired than other people, not being able to run, for example, for like more than a few minutes.. I am on pulmozyme everyday and on Tobi. No oral antiobiotics unless i get a cold. For my surprise anyway, my pft's are incredibly low.
JennifersHope
New member
HMM.. This makes me scratch my head and it also makes me realize how much my Addison's must play into this disease as well because I am considered "mild" CF and am mild because of the fact my lungs don't show any damage really.. The theory is ...the steroids are doing this...
BUT
I am in the hospital every three to four months, just lately I am finishing my IVS at home, but I always go in for at least 7 to 10 days...usually two weeks or so... I am overloaded on God aweful amounts of steroids till I am about to burst becauseI get horrible wheezing and my O2 sats go down, but mainly because I am coughing so hard...then when my airways open up.. I can go home on IVs...but I am so predictable now, About three months off IVs, I start to cough more, get more SOB, I go on orals for about two to three weeks without any real improvment, I get higher and higher fevers, I go to the doctors office.. and walaaaaaaaaaaaa next thing you know.. I am in the Big House....
Anyway, I always think I am a so odd for having Mild CF and being in the hospital so much,
Jennifer
BUT
I am in the hospital every three to four months, just lately I am finishing my IVS at home, but I always go in for at least 7 to 10 days...usually two weeks or so... I am overloaded on God aweful amounts of steroids till I am about to burst becauseI get horrible wheezing and my O2 sats go down, but mainly because I am coughing so hard...then when my airways open up.. I can go home on IVs...but I am so predictable now, About three months off IVs, I start to cough more, get more SOB, I go on orals for about two to three weeks without any real improvment, I get higher and higher fevers, I go to the doctors office.. and walaaaaaaaaaaaa next thing you know.. I am in the Big House....
Anyway, I always think I am a so odd for having Mild CF and being in the hospital so much,
Jennifer
JennifersHope
New member
HMM.. This makes me scratch my head and it also makes me realize how much my Addison's must play into this disease as well because I am considered "mild" CF and am mild because of the fact my lungs don't show any damage really.. The theory is ...the steroids are doing this...
BUT
I am in the hospital every three to four months, just lately I am finishing my IVS at home, but I always go in for at least 7 to 10 days...usually two weeks or so... I am overloaded on God aweful amounts of steroids till I am about to burst becauseI get horrible wheezing and my O2 sats go down, but mainly because I am coughing so hard...then when my airways open up.. I can go home on IVs...but I am so predictable now, About three months off IVs, I start to cough more, get more SOB, I go on orals for about two to three weeks without any real improvment, I get higher and higher fevers, I go to the doctors office.. and walaaaaaaaaaaaa next thing you know.. I am in the Big House....
Anyway, I always think I am a so odd for having Mild CF and being in the hospital so much,
Jennifer
BUT
I am in the hospital every three to four months, just lately I am finishing my IVS at home, but I always go in for at least 7 to 10 days...usually two weeks or so... I am overloaded on God aweful amounts of steroids till I am about to burst becauseI get horrible wheezing and my O2 sats go down, but mainly because I am coughing so hard...then when my airways open up.. I can go home on IVs...but I am so predictable now, About three months off IVs, I start to cough more, get more SOB, I go on orals for about two to three weeks without any real improvment, I get higher and higher fevers, I go to the doctors office.. and walaaaaaaaaaaaa next thing you know.. I am in the Big House....
Anyway, I always think I am a so odd for having Mild CF and being in the hospital so much,
Jennifer
Hi Stephanie,
I have 'mild' CF and am starting to go in more often then I used to. For many years (since late teens) it was once every 2 to 2.5 years for 2 weeks at a time. In the last 2-3 years, it's creeping in and I'm going once every 1 to 1.5 years. It sucks. I think for me I just need to start excercising my behind off like I used to!
Kelly
I have 'mild' CF and am starting to go in more often then I used to. For many years (since late teens) it was once every 2 to 2.5 years for 2 weeks at a time. In the last 2-3 years, it's creeping in and I'm going once every 1 to 1.5 years. It sucks. I think for me I just need to start excercising my behind off like I used to!
Kelly
Hi Stephanie,
I have 'mild' CF and am starting to go in more often then I used to. For many years (since late teens) it was once every 2 to 2.5 years for 2 weeks at a time. In the last 2-3 years, it's creeping in and I'm going once every 1 to 1.5 years. It sucks. I think for me I just need to start excercising my behind off like I used to!
Kelly
I have 'mild' CF and am starting to go in more often then I used to. For many years (since late teens) it was once every 2 to 2.5 years for 2 weeks at a time. In the last 2-3 years, it's creeping in and I'm going once every 1 to 1.5 years. It sucks. I think for me I just need to start excercising my behind off like I used to!
Kelly