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Tune ups

W

welshwitch

Guest
Maybe I have too much time on my hands, but since I've never had a "tune up" I of course wonder what they're like.

First of all, what are they? Is it analagous to having IVs?

Second, how do you know you need one? Is it a lung function issue or weight, or both?

Lastly, how do you incorporate these into your life? is it a "big deal" to your friends and family, and how do you realistically educate them on what's going on?

As a proactive CFer, I am trying to educate myself on all CF issues, so I can know what to do if (and hopefully no time soon) the time comes when I need a "tune up."

Cheers to good health!

--welshwitch, 27, female w/ CF
 
W

welshwitch

Guest
Maybe I have too much time on my hands, but since I've never had a "tune up" I of course wonder what they're like.

First of all, what are they? Is it analagous to having IVs?

Second, how do you know you need one? Is it a lung function issue or weight, or both?

Lastly, how do you incorporate these into your life? is it a "big deal" to your friends and family, and how do you realistically educate them on what's going on?

As a proactive CFer, I am trying to educate myself on all CF issues, so I can know what to do if (and hopefully no time soon) the time comes when I need a "tune up."

Cheers to good health!

--welshwitch, 27, female w/ CF
 
W

welshwitch

Guest
Maybe I have too much time on my hands, but since I've never had a "tune up" I of course wonder what they're like.

First of all, what are they? Is it analagous to having IVs?

Second, how do you know you need one? Is it a lung function issue or weight, or both?

Lastly, how do you incorporate these into your life? is it a "big deal" to your friends and family, and how do you realistically educate them on what's going on?

As a proactive CFer, I am trying to educate myself on all CF issues, so I can know what to do if (and hopefully no time soon) the time comes when I need a "tune up."

Cheers to good health!

--welshwitch, 27, female w/ CF
 
W

welshwitch

Guest
Maybe I have too much time on my hands, but since I've never had a "tune up" I of course wonder what they're like.

First of all, what are they? Is it analagous to having IVs?

Second, how do you know you need one? Is it a lung function issue or weight, or both?

Lastly, how do you incorporate these into your life? is it a "big deal" to your friends and family, and how do you realistically educate them on what's going on?

As a proactive CFer, I am trying to educate myself on all CF issues, so I can know what to do if (and hopefully no time soon) the time comes when I need a "tune up."

Cheers to good health!

--welshwitch, 27, female w/ CF
 
W

welshwitch

Guest
Maybe I have too much time on my hands, but since I've never had a "tune up" I of course wonder what they're like.

First of all, what are they? Is it analagous to having IVs?

Second, how do you know you need one? Is it a lung function issue or weight, or both?

Lastly, how do you incorporate these into your life? is it a "big deal" to your friends and family, and how do you realistically educate them on what's going on?

As a proactive CFer, I am trying to educate myself on all CF issues, so I can know what to do if (and hopefully no time soon) the time comes when I need a "tune up."

Cheers to good health!

--welshwitch, 27, female w/ CF
 

mamerth

New member
I did an outpatient round of IV meds only once. No hospitalization but they sure threatened (I was in college and stubborn as ever). My IV meds were due to a flare up of my staph infection. I hate staph!!

I did not incorporate it into my life very well... had to drop classes, quit work... very traumatic. They should have hog tied me and "locked me up" in the hospital, when I look back on that experience.
 

mamerth

New member
I did an outpatient round of IV meds only once. No hospitalization but they sure threatened (I was in college and stubborn as ever). My IV meds were due to a flare up of my staph infection. I hate staph!!

I did not incorporate it into my life very well... had to drop classes, quit work... very traumatic. They should have hog tied me and "locked me up" in the hospital, when I look back on that experience.
 

mamerth

New member
I did an outpatient round of IV meds only once. No hospitalization but they sure threatened (I was in college and stubborn as ever). My IV meds were due to a flare up of my staph infection. I hate staph!!

I did not incorporate it into my life very well... had to drop classes, quit work... very traumatic. They should have hog tied me and "locked me up" in the hospital, when I look back on that experience.
 

mamerth

New member
I did an outpatient round of IV meds only once. No hospitalization but they sure threatened (I was in college and stubborn as ever). My IV meds were due to a flare up of my staph infection. I hate staph!!

I did not incorporate it into my life very well... had to drop classes, quit work... very traumatic. They should have hog tied me and "locked me up" in the hospital, when I look back on that experience.
 

mamerth

New member
I did an outpatient round of IV meds only once. No hospitalization but they sure threatened (I was in college and stubborn as ever). My IV meds were due to a flare up of my staph infection. I hate staph!!

I did not incorporate it into my life very well... had to drop classes, quit work... very traumatic. They should have hog tied me and "locked me up" in the hospital, when I look back on that experience.
 

sue35

New member
I am about to have a tune up and I had one the same time last year. I know I need to because I was sick and now I am still coughing much more and my lungs hurt. I never go into the hospital because I hate them and can't handle being there. I am going to go to work the day after I get them and will be up and about the whole time. Not the best idea but I can't take the time off work. The only problem is I stand all day so that isn't so smart as I should be resting.

They are not too bad, I feel much better after them!
 

sue35

New member
I am about to have a tune up and I had one the same time last year. I know I need to because I was sick and now I am still coughing much more and my lungs hurt. I never go into the hospital because I hate them and can't handle being there. I am going to go to work the day after I get them and will be up and about the whole time. Not the best idea but I can't take the time off work. The only problem is I stand all day so that isn't so smart as I should be resting.

They are not too bad, I feel much better after them!
 

sue35

New member
I am about to have a tune up and I had one the same time last year. I know I need to because I was sick and now I am still coughing much more and my lungs hurt. I never go into the hospital because I hate them and can't handle being there. I am going to go to work the day after I get them and will be up and about the whole time. Not the best idea but I can't take the time off work. The only problem is I stand all day so that isn't so smart as I should be resting.

They are not too bad, I feel much better after them!
 

sue35

New member
I am about to have a tune up and I had one the same time last year. I know I need to because I was sick and now I am still coughing much more and my lungs hurt. I never go into the hospital because I hate them and can't handle being there. I am going to go to work the day after I get them and will be up and about the whole time. Not the best idea but I can't take the time off work. The only problem is I stand all day so that isn't so smart as I should be resting.

They are not too bad, I feel much better after them!
 

sue35

New member
I am about to have a tune up and I had one the same time last year. I know I need to because I was sick and now I am still coughing much more and my lungs hurt. I never go into the hospital because I hate them and can't handle being there. I am going to go to work the day after I get them and will be up and about the whole time. Not the best idea but I can't take the time off work. The only problem is I stand all day so that isn't so smart as I should be resting.

They are not too bad, I feel much better after them!
 

lightNlife

New member
Yes, a tune up is basically a round of IV therapy combined with very regimented chest physiotherapy and nebulizer treatments. I used to do a pre-emptive tune-up every 6 months from the time I was 14 to when I was 22. Usually what triggered a need for a tune-up was an increased cough and weight loss. Weight loss is t usually the first major sign that a CFer is fighting off an infection.

Tune ups are generally 2-3 weeks depending on what bug you culture in a sputum sample. Many doctors like to start a tune-up in the hospital so that they are in charge of making sure you actually do your CPT with the respiratory therapists. The advantage to being in the hospital (although it's a major bummer) is that your levels of antibiotics are easily monitored and adjustments can be made more easily than if you're on home therapy. My doctor usually looks for a notable increase in my FEV1 before he agrees to send me home on IVs.

We CFers have a tendency to push our limits, and sometimes time away from the stress of keeping up with our meds does us good. When you're in the hospital, the nurses administer your drugs, and you don't have the worries of trying to keep up with housework, etc. As much as I hate the hospital, I do see how it has benefitted me in the past. When I've been on home IVs, there's just too much temptation for me to try to keep doing everything I'm used to, even though my body is protesting that it needs to rest.

Sometimes family members may "freak out" at the mere thought of you being in the hospital. That's normal. Many are put at ease when they see that you're not down and out, and that you're sitting up in bed, talkative and not on oxygen or anything freaky like that. You may need to let them know that hospitalizations, IV and so forth are not a scary thing, but are just one of the ways you are being proactive about your health. Let them know that a tune up is a way to jump start you and keep you from getting sicker. Remind them that 2 weeks of preventive maintanence can translate into months of good health.

You can usually schedule a tuneup around your own schedule. IV therapy generally requires that you receive an infusion every 8 to 12 hours. Each medication will run anywhere from 20 minutes to an hour or so. Generally this works well for me and my work schedule. If I get meds every 8 hours, I do one at 6 am while I get ready for work. Then at work I'll take a late lunch and do my next infusion at 2pm. My last dose will be at 10pm after which I climb into bed. If you're on a 12 hour schedule that's even nicer because you won't have to interrupt your day much at all. Just do the IVs at 7am and 7pm.

I hope that's not too much information! Good luck!
 

lightNlife

New member
Yes, a tune up is basically a round of IV therapy combined with very regimented chest physiotherapy and nebulizer treatments. I used to do a pre-emptive tune-up every 6 months from the time I was 14 to when I was 22. Usually what triggered a need for a tune-up was an increased cough and weight loss. Weight loss is t usually the first major sign that a CFer is fighting off an infection.

Tune ups are generally 2-3 weeks depending on what bug you culture in a sputum sample. Many doctors like to start a tune-up in the hospital so that they are in charge of making sure you actually do your CPT with the respiratory therapists. The advantage to being in the hospital (although it's a major bummer) is that your levels of antibiotics are easily monitored and adjustments can be made more easily than if you're on home therapy. My doctor usually looks for a notable increase in my FEV1 before he agrees to send me home on IVs.

We CFers have a tendency to push our limits, and sometimes time away from the stress of keeping up with our meds does us good. When you're in the hospital, the nurses administer your drugs, and you don't have the worries of trying to keep up with housework, etc. As much as I hate the hospital, I do see how it has benefitted me in the past. When I've been on home IVs, there's just too much temptation for me to try to keep doing everything I'm used to, even though my body is protesting that it needs to rest.

Sometimes family members may "freak out" at the mere thought of you being in the hospital. That's normal. Many are put at ease when they see that you're not down and out, and that you're sitting up in bed, talkative and not on oxygen or anything freaky like that. You may need to let them know that hospitalizations, IV and so forth are not a scary thing, but are just one of the ways you are being proactive about your health. Let them know that a tune up is a way to jump start you and keep you from getting sicker. Remind them that 2 weeks of preventive maintanence can translate into months of good health.

You can usually schedule a tuneup around your own schedule. IV therapy generally requires that you receive an infusion every 8 to 12 hours. Each medication will run anywhere from 20 minutes to an hour or so. Generally this works well for me and my work schedule. If I get meds every 8 hours, I do one at 6 am while I get ready for work. Then at work I'll take a late lunch and do my next infusion at 2pm. My last dose will be at 10pm after which I climb into bed. If you're on a 12 hour schedule that's even nicer because you won't have to interrupt your day much at all. Just do the IVs at 7am and 7pm.

I hope that's not too much information! Good luck!
 

lightNlife

New member
Yes, a tune up is basically a round of IV therapy combined with very regimented chest physiotherapy and nebulizer treatments. I used to do a pre-emptive tune-up every 6 months from the time I was 14 to when I was 22. Usually what triggered a need for a tune-up was an increased cough and weight loss. Weight loss is t usually the first major sign that a CFer is fighting off an infection.

Tune ups are generally 2-3 weeks depending on what bug you culture in a sputum sample. Many doctors like to start a tune-up in the hospital so that they are in charge of making sure you actually do your CPT with the respiratory therapists. The advantage to being in the hospital (although it's a major bummer) is that your levels of antibiotics are easily monitored and adjustments can be made more easily than if you're on home therapy. My doctor usually looks for a notable increase in my FEV1 before he agrees to send me home on IVs.

We CFers have a tendency to push our limits, and sometimes time away from the stress of keeping up with our meds does us good. When you're in the hospital, the nurses administer your drugs, and you don't have the worries of trying to keep up with housework, etc. As much as I hate the hospital, I do see how it has benefitted me in the past. When I've been on home IVs, there's just too much temptation for me to try to keep doing everything I'm used to, even though my body is protesting that it needs to rest.

Sometimes family members may "freak out" at the mere thought of you being in the hospital. That's normal. Many are put at ease when they see that you're not down and out, and that you're sitting up in bed, talkative and not on oxygen or anything freaky like that. You may need to let them know that hospitalizations, IV and so forth are not a scary thing, but are just one of the ways you are being proactive about your health. Let them know that a tune up is a way to jump start you and keep you from getting sicker. Remind them that 2 weeks of preventive maintanence can translate into months of good health.

You can usually schedule a tuneup around your own schedule. IV therapy generally requires that you receive an infusion every 8 to 12 hours. Each medication will run anywhere from 20 minutes to an hour or so. Generally this works well for me and my work schedule. If I get meds every 8 hours, I do one at 6 am while I get ready for work. Then at work I'll take a late lunch and do my next infusion at 2pm. My last dose will be at 10pm after which I climb into bed. If you're on a 12 hour schedule that's even nicer because you won't have to interrupt your day much at all. Just do the IVs at 7am and 7pm.

I hope that's not too much information! Good luck!
 

lightNlife

New member
Yes, a tune up is basically a round of IV therapy combined with very regimented chest physiotherapy and nebulizer treatments. I used to do a pre-emptive tune-up every 6 months from the time I was 14 to when I was 22. Usually what triggered a need for a tune-up was an increased cough and weight loss. Weight loss is t usually the first major sign that a CFer is fighting off an infection.

Tune ups are generally 2-3 weeks depending on what bug you culture in a sputum sample. Many doctors like to start a tune-up in the hospital so that they are in charge of making sure you actually do your CPT with the respiratory therapists. The advantage to being in the hospital (although it's a major bummer) is that your levels of antibiotics are easily monitored and adjustments can be made more easily than if you're on home therapy. My doctor usually looks for a notable increase in my FEV1 before he agrees to send me home on IVs.

We CFers have a tendency to push our limits, and sometimes time away from the stress of keeping up with our meds does us good. When you're in the hospital, the nurses administer your drugs, and you don't have the worries of trying to keep up with housework, etc. As much as I hate the hospital, I do see how it has benefitted me in the past. When I've been on home IVs, there's just too much temptation for me to try to keep doing everything I'm used to, even though my body is protesting that it needs to rest.

Sometimes family members may "freak out" at the mere thought of you being in the hospital. That's normal. Many are put at ease when they see that you're not down and out, and that you're sitting up in bed, talkative and not on oxygen or anything freaky like that. You may need to let them know that hospitalizations, IV and so forth are not a scary thing, but are just one of the ways you are being proactive about your health. Let them know that a tune up is a way to jump start you and keep you from getting sicker. Remind them that 2 weeks of preventive maintanence can translate into months of good health.

You can usually schedule a tuneup around your own schedule. IV therapy generally requires that you receive an infusion every 8 to 12 hours. Each medication will run anywhere from 20 minutes to an hour or so. Generally this works well for me and my work schedule. If I get meds every 8 hours, I do one at 6 am while I get ready for work. Then at work I'll take a late lunch and do my next infusion at 2pm. My last dose will be at 10pm after which I climb into bed. If you're on a 12 hour schedule that's even nicer because you won't have to interrupt your day much at all. Just do the IVs at 7am and 7pm.

I hope that's not too much information! Good luck!
 

lightNlife

New member
Yes, a tune up is basically a round of IV therapy combined with very regimented chest physiotherapy and nebulizer treatments. I used to do a pre-emptive tune-up every 6 months from the time I was 14 to when I was 22. Usually what triggered a need for a tune-up was an increased cough and weight loss. Weight loss is t usually the first major sign that a CFer is fighting off an infection.

Tune ups are generally 2-3 weeks depending on what bug you culture in a sputum sample. Many doctors like to start a tune-up in the hospital so that they are in charge of making sure you actually do your CPT with the respiratory therapists. The advantage to being in the hospital (although it's a major bummer) is that your levels of antibiotics are easily monitored and adjustments can be made more easily than if you're on home therapy. My doctor usually looks for a notable increase in my FEV1 before he agrees to send me home on IVs.

We CFers have a tendency to push our limits, and sometimes time away from the stress of keeping up with our meds does us good. When you're in the hospital, the nurses administer your drugs, and you don't have the worries of trying to keep up with housework, etc. As much as I hate the hospital, I do see how it has benefitted me in the past. When I've been on home IVs, there's just too much temptation for me to try to keep doing everything I'm used to, even though my body is protesting that it needs to rest.

Sometimes family members may "freak out" at the mere thought of you being in the hospital. That's normal. Many are put at ease when they see that you're not down and out, and that you're sitting up in bed, talkative and not on oxygen or anything freaky like that. You may need to let them know that hospitalizations, IV and so forth are not a scary thing, but are just one of the ways you are being proactive about your health. Let them know that a tune up is a way to jump start you and keep you from getting sicker. Remind them that 2 weeks of preventive maintanence can translate into months of good health.

You can usually schedule a tuneup around your own schedule. IV therapy generally requires that you receive an infusion every 8 to 12 hours. Each medication will run anywhere from 20 minutes to an hour or so. Generally this works well for me and my work schedule. If I get meds every 8 hours, I do one at 6 am while I get ready for work. Then at work I'll take a late lunch and do my next infusion at 2pm. My last dose will be at 10pm after which I climb into bed. If you're on a 12 hour schedule that's even nicer because you won't have to interrupt your day much at all. Just do the IVs at 7am and 7pm.

I hope that's not too much information! Good luck!
 
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