So when you're walking you carry the iv bag that your currently using in a bag? And then in your office, where do you put it? Does it have to be at a certain height, or does the pump obliviate that need? My husband and I were joking about the need for a camelbak kind of thing for ivs, but sounds like you're there!
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Do you go into the hospital 3-4 times a year even if your feeling well?
- Thread starter Marcy
- Start date
So when you're walking you carry the iv bag that your currently using in a bag? And then in your office, where do you put it? Does it have to be at a certain height, or does the pump obliviate that need? My husband and I were joking about the need for a camelbak kind of thing for ivs, but sounds like you're there!
So when you're walking you carry the iv bag that your currently using in a bag? And then in your office, where do you put it? Does it have to be at a certain height, or does the pump obliviate that need? My husband and I were joking about the need for a camelbak kind of thing for ivs, but sounds like you're there!
JennifersHope
New member
I always had mixed feelings on this topic until recently.. In both May and obviously August I was hospitalized for non lung related problems. Both times I was put on really strong antibiotics, equal to, if not stronger then what I go on for my lungs.... The first time was for 10 days and then this past time was for 25 days.. My lungs were not that sick either time that I went into the hospital just mildly gunky as per usual... Both times but especially this past time, in the hospital the RT's did vigerous CPT on me and never let me miss a treatment... and like I said I was on IVS... I just had my PFTS checked by my CF clinic a week or so ago, and my lungs were in better shape then ever.
I really do believe there is something to be said for IV antibiotics as maintaince.. if not at the very least orals.. ( if they still work for you) Part of what I feel is that it is better to nip it in the bud before it is nipping you.. and damaging your lungs...
In my own lungs, because of the amount of steroids I am on, my lungs are at a great advantage because they don't get inflammed, meaning I don't get a great deal of puss build up in my lungs.. it prevents damage.... that is kind of how I feel about antibioitcs.. easier to prevent then to repair...
Jennifer
I really do believe there is something to be said for IV antibiotics as maintaince.. if not at the very least orals.. ( if they still work for you) Part of what I feel is that it is better to nip it in the bud before it is nipping you.. and damaging your lungs...
In my own lungs, because of the amount of steroids I am on, my lungs are at a great advantage because they don't get inflammed, meaning I don't get a great deal of puss build up in my lungs.. it prevents damage.... that is kind of how I feel about antibioitcs.. easier to prevent then to repair...
Jennifer
JennifersHope
New member
I always had mixed feelings on this topic until recently.. In both May and obviously August I was hospitalized for non lung related problems. Both times I was put on really strong antibiotics, equal to, if not stronger then what I go on for my lungs.... The first time was for 10 days and then this past time was for 25 days.. My lungs were not that sick either time that I went into the hospital just mildly gunky as per usual... Both times but especially this past time, in the hospital the RT's did vigerous CPT on me and never let me miss a treatment... and like I said I was on IVS... I just had my PFTS checked by my CF clinic a week or so ago, and my lungs were in better shape then ever.
I really do believe there is something to be said for IV antibiotics as maintaince.. if not at the very least orals.. ( if they still work for you) Part of what I feel is that it is better to nip it in the bud before it is nipping you.. and damaging your lungs...
In my own lungs, because of the amount of steroids I am on, my lungs are at a great advantage because they don't get inflammed, meaning I don't get a great deal of puss build up in my lungs.. it prevents damage.... that is kind of how I feel about antibioitcs.. easier to prevent then to repair...
Jennifer
I really do believe there is something to be said for IV antibiotics as maintaince.. if not at the very least orals.. ( if they still work for you) Part of what I feel is that it is better to nip it in the bud before it is nipping you.. and damaging your lungs...
In my own lungs, because of the amount of steroids I am on, my lungs are at a great advantage because they don't get inflammed, meaning I don't get a great deal of puss build up in my lungs.. it prevents damage.... that is kind of how I feel about antibioitcs.. easier to prevent then to repair...
Jennifer
JennifersHope
New member
I always had mixed feelings on this topic until recently.. In both May and obviously August I was hospitalized for non lung related problems. Both times I was put on really strong antibiotics, equal to, if not stronger then what I go on for my lungs.... The first time was for 10 days and then this past time was for 25 days.. My lungs were not that sick either time that I went into the hospital just mildly gunky as per usual... Both times but especially this past time, in the hospital the RT's did vigerous CPT on me and never let me miss a treatment... and like I said I was on IVS... I just had my PFTS checked by my CF clinic a week or so ago, and my lungs were in better shape then ever.
I really do believe there is something to be said for IV antibiotics as maintaince.. if not at the very least orals.. ( if they still work for you) Part of what I feel is that it is better to nip it in the bud before it is nipping you.. and damaging your lungs...
In my own lungs, because of the amount of steroids I am on, my lungs are at a great advantage because they don't get inflammed, meaning I don't get a great deal of puss build up in my lungs.. it prevents damage.... that is kind of how I feel about antibioitcs.. easier to prevent then to repair...
Jennifer
I really do believe there is something to be said for IV antibiotics as maintaince.. if not at the very least orals.. ( if they still work for you) Part of what I feel is that it is better to nip it in the bud before it is nipping you.. and damaging your lungs...
In my own lungs, because of the amount of steroids I am on, my lungs are at a great advantage because they don't get inflammed, meaning I don't get a great deal of puss build up in my lungs.. it prevents damage.... that is kind of how I feel about antibioitcs.. easier to prevent then to repair...
Jennifer
I am a firm believer in regularly scheduled tune ups. I NEVER use to go into the hospital til I was sick as a dog and then it was so HARD to get back to my baseline because I was starting from such a LOW point due to being so ill.
Now I go in no matter what every fall to gear up for winter. And I do start to feel like it is time by the fall to go in so it all works out.
It is SO MUCH EASIER to get thru the IV's, treatments etc. when you are not sick as a dog!!!!
I am getting ready to go in next week, so wish me luck!
In a nutshell, I highly reccomend tune ups. It keeps the infection down, brings PFT's up or at least stable, more energy and weight gain. It is all just good!!!!
Jennifer 34 years old with CF and CFRD
Now I go in no matter what every fall to gear up for winter. And I do start to feel like it is time by the fall to go in so it all works out.
It is SO MUCH EASIER to get thru the IV's, treatments etc. when you are not sick as a dog!!!!
I am getting ready to go in next week, so wish me luck!
In a nutshell, I highly reccomend tune ups. It keeps the infection down, brings PFT's up or at least stable, more energy and weight gain. It is all just good!!!!
Jennifer 34 years old with CF and CFRD
I am a firm believer in regularly scheduled tune ups. I NEVER use to go into the hospital til I was sick as a dog and then it was so HARD to get back to my baseline because I was starting from such a LOW point due to being so ill.
Now I go in no matter what every fall to gear up for winter. And I do start to feel like it is time by the fall to go in so it all works out.
It is SO MUCH EASIER to get thru the IV's, treatments etc. when you are not sick as a dog!!!!
I am getting ready to go in next week, so wish me luck!
In a nutshell, I highly reccomend tune ups. It keeps the infection down, brings PFT's up or at least stable, more energy and weight gain. It is all just good!!!!
Jennifer 34 years old with CF and CFRD
Now I go in no matter what every fall to gear up for winter. And I do start to feel like it is time by the fall to go in so it all works out.
It is SO MUCH EASIER to get thru the IV's, treatments etc. when you are not sick as a dog!!!!
I am getting ready to go in next week, so wish me luck!
In a nutshell, I highly reccomend tune ups. It keeps the infection down, brings PFT's up or at least stable, more energy and weight gain. It is all just good!!!!
Jennifer 34 years old with CF and CFRD
I am a firm believer in regularly scheduled tune ups. I NEVER use to go into the hospital til I was sick as a dog and then it was so HARD to get back to my baseline because I was starting from such a LOW point due to being so ill.
Now I go in no matter what every fall to gear up for winter. And I do start to feel like it is time by the fall to go in so it all works out.
It is SO MUCH EASIER to get thru the IV's, treatments etc. when you are not sick as a dog!!!!
I am getting ready to go in next week, so wish me luck!
In a nutshell, I highly reccomend tune ups. It keeps the infection down, brings PFT's up or at least stable, more energy and weight gain. It is all just good!!!!
Jennifer 34 years old with CF and CFRD
Now I go in no matter what every fall to gear up for winter. And I do start to feel like it is time by the fall to go in so it all works out.
It is SO MUCH EASIER to get thru the IV's, treatments etc. when you are not sick as a dog!!!!
I am getting ready to go in next week, so wish me luck!
In a nutshell, I highly reccomend tune ups. It keeps the infection down, brings PFT's up or at least stable, more energy and weight gain. It is all just good!!!!
Jennifer 34 years old with CF and CFRD
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
So when you're walking you carry the iv bag that your currently using in a bag? And then in your office, where do you put it? Does it have to be at a certain height, or does the pump obliviate that need? My husband and I were joking about the need for a camelbak kind of thing for ivs, but sounds like you're there!</end quote></div>
Yup, I guess it is a camelbak setup, no pole or anything. The pump handles all that. I just disconnect one bag of meds and insert another. The pump and meds all fit in a nice purse-sized pouch-thing. They make a specially designed holder for the pump-and-bag combo, but it takes about twice as long to change meds and batteries and such, so I just use the one my wife made for me. I sling it over my neck and under one arm and away I go. I think of it as a cool sash or something <img src="i/expressions/face-icon-small-smile.gif" border="0">
I have a port in my chest, so I tuck the tube in with my shirt and run it out near my belt right near the pouch, so I don't have a hose dangling around everywhere to get snagged on stuff. I basically just wear the thing all day, even if I'm sitting at my desk or whatever. The pump makes some noise, but you can't hear it unless the room is pretty quiet. Sometimes I'll turn the pump off for a little while if I'm in a meeting and it is distracting people, but most of my co-workers are very understanding about it. I guess they would rather have me there working than in the hospital sitting on my bedsores.
So when you're walking you carry the iv bag that your currently using in a bag? And then in your office, where do you put it? Does it have to be at a certain height, or does the pump obliviate that need? My husband and I were joking about the need for a camelbak kind of thing for ivs, but sounds like you're there!</end quote></div>
Yup, I guess it is a camelbak setup, no pole or anything. The pump handles all that. I just disconnect one bag of meds and insert another. The pump and meds all fit in a nice purse-sized pouch-thing. They make a specially designed holder for the pump-and-bag combo, but it takes about twice as long to change meds and batteries and such, so I just use the one my wife made for me. I sling it over my neck and under one arm and away I go. I think of it as a cool sash or something <img src="i/expressions/face-icon-small-smile.gif" border="0">
I have a port in my chest, so I tuck the tube in with my shirt and run it out near my belt right near the pouch, so I don't have a hose dangling around everywhere to get snagged on stuff. I basically just wear the thing all day, even if I'm sitting at my desk or whatever. The pump makes some noise, but you can't hear it unless the room is pretty quiet. Sometimes I'll turn the pump off for a little while if I'm in a meeting and it is distracting people, but most of my co-workers are very understanding about it. I guess they would rather have me there working than in the hospital sitting on my bedsores.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
So when you're walking you carry the iv bag that your currently using in a bag? And then in your office, where do you put it? Does it have to be at a certain height, or does the pump obliviate that need? My husband and I were joking about the need for a camelbak kind of thing for ivs, but sounds like you're there!</end quote></div>
Yup, I guess it is a camelbak setup, no pole or anything. The pump handles all that. I just disconnect one bag of meds and insert another. The pump and meds all fit in a nice purse-sized pouch-thing. They make a specially designed holder for the pump-and-bag combo, but it takes about twice as long to change meds and batteries and such, so I just use the one my wife made for me. I sling it over my neck and under one arm and away I go. I think of it as a cool sash or something <img src="i/expressions/face-icon-small-smile.gif" border="0">
I have a port in my chest, so I tuck the tube in with my shirt and run it out near my belt right near the pouch, so I don't have a hose dangling around everywhere to get snagged on stuff. I basically just wear the thing all day, even if I'm sitting at my desk or whatever. The pump makes some noise, but you can't hear it unless the room is pretty quiet. Sometimes I'll turn the pump off for a little while if I'm in a meeting and it is distracting people, but most of my co-workers are very understanding about it. I guess they would rather have me there working than in the hospital sitting on my bedsores.
So when you're walking you carry the iv bag that your currently using in a bag? And then in your office, where do you put it? Does it have to be at a certain height, or does the pump obliviate that need? My husband and I were joking about the need for a camelbak kind of thing for ivs, but sounds like you're there!</end quote></div>
Yup, I guess it is a camelbak setup, no pole or anything. The pump handles all that. I just disconnect one bag of meds and insert another. The pump and meds all fit in a nice purse-sized pouch-thing. They make a specially designed holder for the pump-and-bag combo, but it takes about twice as long to change meds and batteries and such, so I just use the one my wife made for me. I sling it over my neck and under one arm and away I go. I think of it as a cool sash or something <img src="i/expressions/face-icon-small-smile.gif" border="0">
I have a port in my chest, so I tuck the tube in with my shirt and run it out near my belt right near the pouch, so I don't have a hose dangling around everywhere to get snagged on stuff. I basically just wear the thing all day, even if I'm sitting at my desk or whatever. The pump makes some noise, but you can't hear it unless the room is pretty quiet. Sometimes I'll turn the pump off for a little while if I'm in a meeting and it is distracting people, but most of my co-workers are very understanding about it. I guess they would rather have me there working than in the hospital sitting on my bedsores.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
So when you're walking you carry the iv bag that your currently using in a bag? And then in your office, where do you put it? Does it have to be at a certain height, or does the pump obliviate that need? My husband and I were joking about the need for a camelbak kind of thing for ivs, but sounds like you're there!</end quote></div>
Yup, I guess it is a camelbak setup, no pole or anything. The pump handles all that. I just disconnect one bag of meds and insert another. The pump and meds all fit in a nice purse-sized pouch-thing. They make a specially designed holder for the pump-and-bag combo, but it takes about twice as long to change meds and batteries and such, so I just use the one my wife made for me. I sling it over my neck and under one arm and away I go. I think of it as a cool sash or something <img src="i/expressions/face-icon-small-smile.gif" border="0">
I have a port in my chest, so I tuck the tube in with my shirt and run it out near my belt right near the pouch, so I don't have a hose dangling around everywhere to get snagged on stuff. I basically just wear the thing all day, even if I'm sitting at my desk or whatever. The pump makes some noise, but you can't hear it unless the room is pretty quiet. Sometimes I'll turn the pump off for a little while if I'm in a meeting and it is distracting people, but most of my co-workers are very understanding about it. I guess they would rather have me there working than in the hospital sitting on my bedsores.
So when you're walking you carry the iv bag that your currently using in a bag? And then in your office, where do you put it? Does it have to be at a certain height, or does the pump obliviate that need? My husband and I were joking about the need for a camelbak kind of thing for ivs, but sounds like you're there!</end quote></div>
Yup, I guess it is a camelbak setup, no pole or anything. The pump handles all that. I just disconnect one bag of meds and insert another. The pump and meds all fit in a nice purse-sized pouch-thing. They make a specially designed holder for the pump-and-bag combo, but it takes about twice as long to change meds and batteries and such, so I just use the one my wife made for me. I sling it over my neck and under one arm and away I go. I think of it as a cool sash or something <img src="i/expressions/face-icon-small-smile.gif" border="0">
I have a port in my chest, so I tuck the tube in with my shirt and run it out near my belt right near the pouch, so I don't have a hose dangling around everywhere to get snagged on stuff. I basically just wear the thing all day, even if I'm sitting at my desk or whatever. The pump makes some noise, but you can't hear it unless the room is pretty quiet. Sometimes I'll turn the pump off for a little while if I'm in a meeting and it is distracting people, but most of my co-workers are very understanding about it. I guess they would rather have me there working than in the hospital sitting on my bedsores.
Yes, I am in the hospital every 3-4 months, usually I am feeling crappy enough to want to be admitted to the hospital. This last time, I think I waited too long. I developed pneumonia, had a temp of 103 and my WBC's were 30,000. I grew out PA, steno and of course cepacia so the docs had to be aggressive. I was on 4 types of antibiotics at one point. The point is, I should never have waited until I felt that bad. Usually, it takes about 3 months and then I start to feel pluggy with no mucus moving. No matter how good I am with my CPT and meds, I can't get anything up because the gunk in my lungs turns to cement. Once I am in the hospital and they start all of those meds, that vile stuff breaks up and the mucus is non stop and colorful. After 3 weeks of antibiotics, I feel much better and am ready to go home.
I used to do IV's at home, but since medicare, it is hard. The part D covers the meds but not the supplies. The last time I did IV's at home, I got a bill for over $2000 for 6 weeks of therapy! How much does portacath needles cost? How about the dressing kits? MY point is, they charged way too much for the supplies. IF only Medicare part D and B got together and covered both meds and supplies, then I could afford to do the meds at home.....hopefully someday the gov't will figure out that doing home IV's is much cheaper than staying in the hospital for 3 weeks or more. (I stay in the ICU because of my vent...imagine what a 3 week bill costs)...Okay, enough ranting!
But all in all, I do believe in tune ups, especially if you colonize alot of cooties, mine just get out of control and cause trouble.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
I used to do IV's at home, but since medicare, it is hard. The part D covers the meds but not the supplies. The last time I did IV's at home, I got a bill for over $2000 for 6 weeks of therapy! How much does portacath needles cost? How about the dressing kits? MY point is, they charged way too much for the supplies. IF only Medicare part D and B got together and covered both meds and supplies, then I could afford to do the meds at home.....hopefully someday the gov't will figure out that doing home IV's is much cheaper than staying in the hospital for 3 weeks or more. (I stay in the ICU because of my vent...imagine what a 3 week bill costs)...Okay, enough ranting!
But all in all, I do believe in tune ups, especially if you colonize alot of cooties, mine just get out of control and cause trouble.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Yes, I am in the hospital every 3-4 months, usually I am feeling crappy enough to want to be admitted to the hospital. This last time, I think I waited too long. I developed pneumonia, had a temp of 103 and my WBC's were 30,000. I grew out PA, steno and of course cepacia so the docs had to be aggressive. I was on 4 types of antibiotics at one point. The point is, I should never have waited until I felt that bad. Usually, it takes about 3 months and then I start to feel pluggy with no mucus moving. No matter how good I am with my CPT and meds, I can't get anything up because the gunk in my lungs turns to cement. Once I am in the hospital and they start all of those meds, that vile stuff breaks up and the mucus is non stop and colorful. After 3 weeks of antibiotics, I feel much better and am ready to go home.
I used to do IV's at home, but since medicare, it is hard. The part D covers the meds but not the supplies. The last time I did IV's at home, I got a bill for over $2000 for 6 weeks of therapy! How much does portacath needles cost? How about the dressing kits? MY point is, they charged way too much for the supplies. IF only Medicare part D and B got together and covered both meds and supplies, then I could afford to do the meds at home.....hopefully someday the gov't will figure out that doing home IV's is much cheaper than staying in the hospital for 3 weeks or more. (I stay in the ICU because of my vent...imagine what a 3 week bill costs)...Okay, enough ranting!
But all in all, I do believe in tune ups, especially if you colonize alot of cooties, mine just get out of control and cause trouble.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
I used to do IV's at home, but since medicare, it is hard. The part D covers the meds but not the supplies. The last time I did IV's at home, I got a bill for over $2000 for 6 weeks of therapy! How much does portacath needles cost? How about the dressing kits? MY point is, they charged way too much for the supplies. IF only Medicare part D and B got together and covered both meds and supplies, then I could afford to do the meds at home.....hopefully someday the gov't will figure out that doing home IV's is much cheaper than staying in the hospital for 3 weeks or more. (I stay in the ICU because of my vent...imagine what a 3 week bill costs)...Okay, enough ranting!
But all in all, I do believe in tune ups, especially if you colonize alot of cooties, mine just get out of control and cause trouble.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
Yes, I am in the hospital every 3-4 months, usually I am feeling crappy enough to want to be admitted to the hospital. This last time, I think I waited too long. I developed pneumonia, had a temp of 103 and my WBC's were 30,000. I grew out PA, steno and of course cepacia so the docs had to be aggressive. I was on 4 types of antibiotics at one point. The point is, I should never have waited until I felt that bad. Usually, it takes about 3 months and then I start to feel pluggy with no mucus moving. No matter how good I am with my CPT and meds, I can't get anything up because the gunk in my lungs turns to cement. Once I am in the hospital and they start all of those meds, that vile stuff breaks up and the mucus is non stop and colorful. After 3 weeks of antibiotics, I feel much better and am ready to go home.
I used to do IV's at home, but since medicare, it is hard. The part D covers the meds but not the supplies. The last time I did IV's at home, I got a bill for over $2000 for 6 weeks of therapy! How much does portacath needles cost? How about the dressing kits? MY point is, they charged way too much for the supplies. IF only Medicare part D and B got together and covered both meds and supplies, then I could afford to do the meds at home.....hopefully someday the gov't will figure out that doing home IV's is much cheaper than staying in the hospital for 3 weeks or more. (I stay in the ICU because of my vent...imagine what a 3 week bill costs)...Okay, enough ranting!
But all in all, I do believe in tune ups, especially if you colonize alot of cooties, mine just get out of control and cause trouble.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
I used to do IV's at home, but since medicare, it is hard. The part D covers the meds but not the supplies. The last time I did IV's at home, I got a bill for over $2000 for 6 weeks of therapy! How much does portacath needles cost? How about the dressing kits? MY point is, they charged way too much for the supplies. IF only Medicare part D and B got together and covered both meds and supplies, then I could afford to do the meds at home.....hopefully someday the gov't will figure out that doing home IV's is much cheaper than staying in the hospital for 3 weeks or more. (I stay in the ICU because of my vent...imagine what a 3 week bill costs)...Okay, enough ranting!
But all in all, I do believe in tune ups, especially if you colonize alot of cooties, mine just get out of control and cause trouble.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
I've only gone in when I'm feeling "crumier" than usual (usually my FEV1 is long at that point). This usually happens about once a year or a bit longer if I can stay "well". I'm surprised, it seems I am in the minority not going in unless necessary, but I've gone to 3 clinics around the country and they have all done tune ups only when necessary for me. I am curious why certain clinics take these very very different approaches. I mean, I know WHY, but its just so interesting that clinics treat patients so very differently.
I personally never thought I should go in unless getting sicker, cause I am terrified of antibiotic resistance and am still sensitive to a bunch of meds (I credit this to not being on them too often). I guess now I am re-thinking since it seems most docs seem to put people on IVs either way.
*********************************
When I've been on IVs in the past when I feel "sicker", my FEV1 levels and "feel good" feeling usually only lasts a week or so and I am back to around my baseline (which makes me think I wasn't all that "sick" to begin with). So, I feel better after IVs for longer, but my numbers go back down almost right away. Anyone else have this happen? Strange.
I personally never thought I should go in unless getting sicker, cause I am terrified of antibiotic resistance and am still sensitive to a bunch of meds (I credit this to not being on them too often). I guess now I am re-thinking since it seems most docs seem to put people on IVs either way.
*********************************
When I've been on IVs in the past when I feel "sicker", my FEV1 levels and "feel good" feeling usually only lasts a week or so and I am back to around my baseline (which makes me think I wasn't all that "sick" to begin with). So, I feel better after IVs for longer, but my numbers go back down almost right away. Anyone else have this happen? Strange.
I've only gone in when I'm feeling "crumier" than usual (usually my FEV1 is long at that point). This usually happens about once a year or a bit longer if I can stay "well". I'm surprised, it seems I am in the minority not going in unless necessary, but I've gone to 3 clinics around the country and they have all done tune ups only when necessary for me. I am curious why certain clinics take these very very different approaches. I mean, I know WHY, but its just so interesting that clinics treat patients so very differently.
I personally never thought I should go in unless getting sicker, cause I am terrified of antibiotic resistance and am still sensitive to a bunch of meds (I credit this to not being on them too often). I guess now I am re-thinking since it seems most docs seem to put people on IVs either way.
*********************************
When I've been on IVs in the past when I feel "sicker", my FEV1 levels and "feel good" feeling usually only lasts a week or so and I am back to around my baseline (which makes me think I wasn't all that "sick" to begin with). So, I feel better after IVs for longer, but my numbers go back down almost right away. Anyone else have this happen? Strange.
I personally never thought I should go in unless getting sicker, cause I am terrified of antibiotic resistance and am still sensitive to a bunch of meds (I credit this to not being on them too often). I guess now I am re-thinking since it seems most docs seem to put people on IVs either way.
*********************************
When I've been on IVs in the past when I feel "sicker", my FEV1 levels and "feel good" feeling usually only lasts a week or so and I am back to around my baseline (which makes me think I wasn't all that "sick" to begin with). So, I feel better after IVs for longer, but my numbers go back down almost right away. Anyone else have this happen? Strange.
I've only gone in when I'm feeling "crumier" than usual (usually my FEV1 is long at that point). This usually happens about once a year or a bit longer if I can stay "well". I'm surprised, it seems I am in the minority not going in unless necessary, but I've gone to 3 clinics around the country and they have all done tune ups only when necessary for me. I am curious why certain clinics take these very very different approaches. I mean, I know WHY, but its just so interesting that clinics treat patients so very differently.
I personally never thought I should go in unless getting sicker, cause I am terrified of antibiotic resistance and am still sensitive to a bunch of meds (I credit this to not being on them too often). I guess now I am re-thinking since it seems most docs seem to put people on IVs either way.
*********************************
When I've been on IVs in the past when I feel "sicker", my FEV1 levels and "feel good" feeling usually only lasts a week or so and I am back to around my baseline (which makes me think I wasn't all that "sick" to begin with). So, I feel better after IVs for longer, but my numbers go back down almost right away. Anyone else have this happen? Strange.
I personally never thought I should go in unless getting sicker, cause I am terrified of antibiotic resistance and am still sensitive to a bunch of meds (I credit this to not being on them too often). I guess now I am re-thinking since it seems most docs seem to put people on IVs either way.
*********************************
When I've been on IVs in the past when I feel "sicker", my FEV1 levels and "feel good" feeling usually only lasts a week or so and I am back to around my baseline (which makes me think I wasn't all that "sick" to begin with). So, I feel better after IVs for longer, but my numbers go back down almost right away. Anyone else have this happen? Strange.
Hey everyone, i have been hospital free for about a year and half. which is really good, but i am in that study for the eflow which is just like tobi, on for 28 days off for 28 days. But i have been congested on and off for like 3mths but not bad enough to go in. I have been goin to get my lung test done every 4wks for the study thing and they have been normal. so my whole thing is this, i have a 2yrs old and i think i want to go in get the picc line and see if i can just come home with it since im really not sick sick, I don't want to get to the point where I'm to sick and be able to take care of her, cuz that happen her 1st christmas i couldn't even help her open presents so i was a mess and kept crying telling my mom i don't want to do this anymore, i want to be ther for her and everything else. So do u think i should just call my doc and say hey i think i should just get a tune up for the sake of my baby. or just wait till they tell me. He is also the kinda of doctor that will put me on anti pills first and if that doesn't work then i get the picc line.
Hey everyone, i have been hospital free for about a year and half. which is really good, but i am in that study for the eflow which is just like tobi, on for 28 days off for 28 days. But i have been congested on and off for like 3mths but not bad enough to go in. I have been goin to get my lung test done every 4wks for the study thing and they have been normal. so my whole thing is this, i have a 2yrs old and i think i want to go in get the picc line and see if i can just come home with it since im really not sick sick, I don't want to get to the point where I'm to sick and be able to take care of her, cuz that happen her 1st christmas i couldn't even help her open presents so i was a mess and kept crying telling my mom i don't want to do this anymore, i want to be ther for her and everything else. So do u think i should just call my doc and say hey i think i should just get a tune up for the sake of my baby. or just wait till they tell me. He is also the kinda of doctor that will put me on anti pills first and if that doesn't work then i get the picc line.