Shortness of Breath

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

Well, IMO it could very well be the TOBI... this is part of why I hated TOBI when I was on it and just could not tolerate it at all... I got extremely short of breath and the longer in my cycle I was with it the worse my breathing got. I could barely walk on the treadmill toward the 28th day! It was ridiculous! So, perhaps this is it. You may want to mention that to your doc. According to my CF doc, more and more people are unable to take TOBI as time goes by cause they develop reactions to it (SOB and bronchiospasms and the like)... usually these just develop (as they did with me) after being on TOBI for quite some time (I had been on it and doing fine for a year or so!)... I hope you get answers.</end quote></div>

It took me a long time to realize that the TOBI was making me short of breath because at first it didn't. After awhile I would get so short of breath when I was on my TOBI cycle that I would get winded just talking.
Another thing that I think you already realize is when my blood sugars are high I notice increased SOB too.
I sure hope you can figure out what's causing it. If the SOB gets better after you end your TOBI cycle, then you'll know that that could be the culprit.

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ladybug</b></i>

Well, IMO it could very well be the TOBI... this is part of why I hated TOBI when I was on it and just could not tolerate it at all... I got extremely short of breath and the longer in my cycle I was with it the worse my breathing got. I could barely walk on the treadmill toward the 28th day! It was ridiculous! So, perhaps this is it. You may want to mention that to your doc. According to my CF doc, more and more people are unable to take TOBI as time goes by cause they develop reactions to it (SOB and bronchiospasms and the like)... usually these just develop (as they did with me) after being on TOBI for quite some time (I had been on it and doing fine for a year or so!)... I hope you get answers.</end quote></div>

It took me a long time to realize that the TOBI was making me short of breath because at first it didn't. After awhile I would get so short of breath when I was on my TOBI cycle that I would get winded just talking.
Another thing that I think you already realize is when my blood sugars are high I notice increased SOB too.
I sure hope you can figure out what's causing it. If the SOB gets better after you end your TOBI cycle, then you'll know that that could be the culprit.

 

[LisaV]

Do you have an oximeter?
What are your O2 levels when you are SOB?
Are your O2 levels above or below 91 when you are SOB?

 

[LisaV]

Do you have an oximeter?
What are your O2 levels when you are SOB?
Are your O2 levels above or below 91 when you are SOB?

 

[LisaV]

Do you have an oximeter?
What are your O2 levels when you are SOB?
Are your O2 levels above or below 91 when you are SOB?

 

[coltsfan715]

I do not have an oximeter, but I was short of breath - the same kind of feeling as the past few days - when I went to my appointment last week. They checked my O2 sats then and they were 94. That is pretty normal for me - well at least it has been lately.

I am thinking and feel in my gut this is more of a medicine thing than a sick infection thing. I don't know I just feel good other than the shortness of breath. I am coughing very little - except for minor throat irritation cause my throat has been sore and felt a bit inflammed - which is at its worst when I feel short of breath. I also cough when I do my Saline treatment, but other than that I am coughing very little - even when I do CPT. When I cough stuff up it is vastly improved over what it was - meaning in color (was greenish grey - now whitish yellow), consistency (was thick and sticky - now very thin fluid-y) and there is no taste like there was before. I am feeling okay overall just get fatigued when the shortness of breath hits cause I feel like I can't get a good breath in.

I have spent the night and today - while waiting for the docs office to call me back - looking up lists of side effects for meds, thinking of past problems I have had, and thinking of what I KNOW it is not. I have a handful of possibilities.

1- I thought of the IV antibiotic as I have not taken Cefepime/Maxipime before this IV stint. I do not think in my gut that is the problem as I feel I would start to have onset of symtpoms - or they would be worse as I am administering the med and they aren't.

2- TOBI. I have had problems with TOBI in years past that required me to stop taking it for a while - mainly hemoptysis. I stopped taking it for about 2 years then tried it again last year and no apparent problems. I have been on it now (with 5-6 day break) for about 1.5 months or just over. Thinking that may just be irritating my lungs and causing this reaction.

3- Advair. I have a script for this all the time, but am not that good about taking it. I in the past either forget entirely or have only taken it once a day when I could remember because it made my throat hurt (no matter how much I rinsed my mouth out) and made swallowing difficult when I would use it twice a day.

4- I have thought of asthma attack symptoms - or allergies but am unsure. I had an appointment with an allergist Tuesday and go back next week for allergy testing - I have to wait until I have been off the IVs a few days cause the IV meds can cause a false negative.

They gave me nexium for reflux last week and it has helped with the acid sensation and it helped temporarily with my throat, but my throat is still getting sore and feeling swollen at the end of nebs - around TOBI and my advair as I take the advair when I finish my nebs. Who knows I am hoping the docs office will call back soon, so I can hopefully talk to them about it.

I just hope they don't write it off as me being sick still - cause I don't feel sick just getting this tightness in my chest and throat and am getting concerned with it .. it is happening to frequently throughout the day to be random I know it has to be related to something.

Thanks guys for all the input. I am going to ask them if they want me to get another culture done too. I am just not coughing much of anything up unless I am doing my saline, so I guess I would have to do the saline to induce getting a culture for them. lol If they would even let me do that lol -- who knows we shall see.

Lindsey

 

[coltsfan715]

I do not have an oximeter, but I was short of breath - the same kind of feeling as the past few days - when I went to my appointment last week. They checked my O2 sats then and they were 94. That is pretty normal for me - well at least it has been lately.

I am thinking and feel in my gut this is more of a medicine thing than a sick infection thing. I don't know I just feel good other than the shortness of breath. I am coughing very little - except for minor throat irritation cause my throat has been sore and felt a bit inflammed - which is at its worst when I feel short of breath. I also cough when I do my Saline treatment, but other than that I am coughing very little - even when I do CPT. When I cough stuff up it is vastly improved over what it was - meaning in color (was greenish grey - now whitish yellow), consistency (was thick and sticky - now very thin fluid-y) and there is no taste like there was before. I am feeling okay overall just get fatigued when the shortness of breath hits cause I feel like I can't get a good breath in.

I have spent the night and today - while waiting for the docs office to call me back - looking up lists of side effects for meds, thinking of past problems I have had, and thinking of what I KNOW it is not. I have a handful of possibilities.

1- I thought of the IV antibiotic as I have not taken Cefepime/Maxipime before this IV stint. I do not think in my gut that is the problem as I feel I would start to have onset of symtpoms - or they would be worse as I am administering the med and they aren't.

2- TOBI. I have had problems with TOBI in years past that required me to stop taking it for a while - mainly hemoptysis. I stopped taking it for about 2 years then tried it again last year and no apparent problems. I have been on it now (with 5-6 day break) for about 1.5 months or just over. Thinking that may just be irritating my lungs and causing this reaction.

3- Advair. I have a script for this all the time, but am not that good about taking it. I in the past either forget entirely or have only taken it once a day when I could remember because it made my throat hurt (no matter how much I rinsed my mouth out) and made swallowing difficult when I would use it twice a day.

4- I have thought of asthma attack symptoms - or allergies but am unsure. I had an appointment with an allergist Tuesday and go back next week for allergy testing - I have to wait until I have been off the IVs a few days cause the IV meds can cause a false negative.

They gave me nexium for reflux last week and it has helped with the acid sensation and it helped temporarily with my throat, but my throat is still getting sore and feeling swollen at the end of nebs - around TOBI and my advair as I take the advair when I finish my nebs. Who knows I am hoping the docs office will call back soon, so I can hopefully talk to them about it.

I just hope they don't write it off as me being sick still - cause I don't feel sick just getting this tightness in my chest and throat and am getting concerned with it .. it is happening to frequently throughout the day to be random I know it has to be related to something.

Thanks guys for all the input. I am going to ask them if they want me to get another culture done too. I am just not coughing much of anything up unless I am doing my saline, so I guess I would have to do the saline to induce getting a culture for them. lol If they would even let me do that lol -- who knows we shall see.

Lindsey

 

[coltsfan715]

I do not have an oximeter, but I was short of breath - the same kind of feeling as the past few days - when I went to my appointment last week. They checked my O2 sats then and they were 94. That is pretty normal for me - well at least it has been lately.

I am thinking and feel in my gut this is more of a medicine thing than a sick infection thing. I don't know I just feel good other than the shortness of breath. I am coughing very little - except for minor throat irritation cause my throat has been sore and felt a bit inflammed - which is at its worst when I feel short of breath. I also cough when I do my Saline treatment, but other than that I am coughing very little - even when I do CPT. When I cough stuff up it is vastly improved over what it was - meaning in color (was greenish grey - now whitish yellow), consistency (was thick and sticky - now very thin fluid-y) and there is no taste like there was before. I am feeling okay overall just get fatigued when the shortness of breath hits cause I feel like I can't get a good breath in.

I have spent the night and today - while waiting for the docs office to call me back - looking up lists of side effects for meds, thinking of past problems I have had, and thinking of what I KNOW it is not. I have a handful of possibilities.

1- I thought of the IV antibiotic as I have not taken Cefepime/Maxipime before this IV stint. I do not think in my gut that is the problem as I feel I would start to have onset of symtpoms - or they would be worse as I am administering the med and they aren't.

2- TOBI. I have had problems with TOBI in years past that required me to stop taking it for a while - mainly hemoptysis. I stopped taking it for about 2 years then tried it again last year and no apparent problems. I have been on it now (with 5-6 day break) for about 1.5 months or just over. Thinking that may just be irritating my lungs and causing this reaction.

3- Advair. I have a script for this all the time, but am not that good about taking it. I in the past either forget entirely or have only taken it once a day when I could remember because it made my throat hurt (no matter how much I rinsed my mouth out) and made swallowing difficult when I would use it twice a day.

4- I have thought of asthma attack symptoms - or allergies but am unsure. I had an appointment with an allergist Tuesday and go back next week for allergy testing - I have to wait until I have been off the IVs a few days cause the IV meds can cause a false negative.

They gave me nexium for reflux last week and it has helped with the acid sensation and it helped temporarily with my throat, but my throat is still getting sore and feeling swollen at the end of nebs - around TOBI and my advair as I take the advair when I finish my nebs. Who knows I am hoping the docs office will call back soon, so I can hopefully talk to them about it.

I just hope they don't write it off as me being sick still - cause I don't feel sick just getting this tightness in my chest and throat and am getting concerned with it .. it is happening to frequently throughout the day to be random I know it has to be related to something.

Thanks guys for all the input. I am going to ask them if they want me to get another culture done too. I am just not coughing much of anything up unless I am doing my saline, so I guess I would have to do the saline to induce getting a culture for them. lol If they would even let me do that lol -- who knows we shall see.

Lindsey

 

[coltsfan715]

Okie Dokie -- I am going to the doc tomorrow afternoon for them to check things out and possibly do a breathing test. The are intrigued and bothered at the fact that I am having the shortness of breath this far into IV treatment.

I will let you all know how it goes. Thanks again for the ideas and input guys. We shall see what happens tomorrow.

Lindsey

 

[coltsfan715]

Okie Dokie -- I am going to the doc tomorrow afternoon for them to check things out and possibly do a breathing test. The are intrigued and bothered at the fact that I am having the shortness of breath this far into IV treatment.

I will let you all know how it goes. Thanks again for the ideas and input guys. We shall see what happens tomorrow.

Lindsey

 

[coltsfan715]

Okie Dokie -- I am going to the doc tomorrow afternoon for them to check things out and possibly do a breathing test. The are intrigued and bothered at the fact that I am having the shortness of breath this far into IV treatment.

I will let you all know how it goes. Thanks again for the ideas and input guys. We shall see what happens tomorrow.

Lindsey

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>coltsfan715</b></i>

Okie Dokie -- I am going to the doc tomorrow afternoon for them to check things out and possibly do a breathing test. The are intrigued and bothered at the fact that I am having the shortness of breath this far into IV treatment.



I will let you all know how it goes. Thanks again for the ideas and input guys. We shall see what happens tomorrow.



Lindsey</end quote></div>

Look forward to hearing how things go. Thanks for keeping us posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>coltsfan715</b></i>

Okie Dokie -- I am going to the doc tomorrow afternoon for them to check things out and possibly do a breathing test. The are intrigued and bothered at the fact that I am having the shortness of breath this far into IV treatment.



I will let you all know how it goes. Thanks again for the ideas and input guys. We shall see what happens tomorrow.



Lindsey</end quote></div>

Look forward to hearing how things go. Thanks for keeping us posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>coltsfan715</b></i>

Okie Dokie -- I am going to the doc tomorrow afternoon for them to check things out and possibly do a breathing test. The are intrigued and bothered at the fact that I am having the shortness of breath this far into IV treatment.



I will let you all know how it goes. Thanks again for the ideas and input guys. We shall see what happens tomorrow.



Lindsey</end quote></div>

Look forward to hearing how things go. Thanks for keeping us posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[coltsfan715]

Well I had my appointment this afternoon.

The doc thinks I sound good and look good. He said by all accounts the IV meds have worked I am not coughing as much - if at all really unless doing CPT or the Saline, I am moving air well by his listening to me and the fact that my sputum is much improved he is pleased and I am still up a bit on my weight from what I was when admitted.

He also asked about my getting sick this past weekend and said that he thinks it is possible that I had food poisoning, but unlikely because the antibiotics I am on should have killed any salmonella bacteria that got in my system. He thinks that I rather picked up some nasty viral infection somewhere that had to run its course.

As for the shortness of breath - he took me off of TOBI for 28 days. He said that since I had been on it so long (just under 7 weeks now - with 5 days off) that may be a large part of the problem. I have had problems with TOBI in the past - i.e. hemoptysis - so he discontinued that for 28 days as usual. He also took me off Pulmozyme for a week. They started me on Pulmozyme twice a day when I went on IVs and he thinks the switch from once a day to twice a day may have been too much. So the Pulmozyme and the TOBI combined he said are most likely what is causing the shortness of breath. I start the Pulmozyme up again next week - just once a day like I used to do.

I had other symptoms that developed last night and this morning that led him to think it was the pulmo along with the TOBI I think. My throat was feeling swollen and my tongue felt enlarged and I was having some difficulty swallowing as well.

I also mentioned that my legs felt a little weak and he said he thinks it is just from the fact that I have been short of breath and he thinks my body is just worn out from all the antibiotics - as I have never been on IVs longer than 2 weeks before and today was week 3. I will end IVs on Monday and that will be a total of 24 days on them. They kept me on them an extra week because of my getting sick last weekend and the fact that I didn't eat for about 24-36 hours.

As for the visit, it went well considering. My weight was down from last week - but I went those 24-36 hours without really eating so that was to be expected (I am still 3-4 pounds more than I was before IVs). My O2 sats were at 92 - which was down from last week (which was 94) - but I was huffing and puffing from being SOB when I went this afternoon so all in all that isn't bad. They didn't do PFTs as they didn't want to induce the SOB in any way - I had just managed to get it under control when the doc came in - so they chose against them.

The doc said that if indeed the Pulmo and TOBI were the problem that I should be feeling really good come Monday - once they are really out of my system and I have had a few days break. I should also get some relief in my throat. If I am not feeling better obviously I will be going back to see them next week. I am thinking that I will feel better though - as I felt okay this morning BEFORE my nebs - and didn't really get SOB until after I finished them.

Well thanks all for your thoughts, input and concern. I really do appreciate it - I was a bit scared by this ordeal. I am looking forward to the weekend and just resting. I know a bit of a switch but the doc told me to lay off of the walking for a few days that I just need to rest up and too see how I feel maybe Sunday, and if I don't feel up to walking do NOT push it - just wait til I feel better.

Thanks again guys,
Lindsey

 

[coltsfan715]

Well I had my appointment this afternoon.

The doc thinks I sound good and look good. He said by all accounts the IV meds have worked I am not coughing as much - if at all really unless doing CPT or the Saline, I am moving air well by his listening to me and the fact that my sputum is much improved he is pleased and I am still up a bit on my weight from what I was when admitted.

He also asked about my getting sick this past weekend and said that he thinks it is possible that I had food poisoning, but unlikely because the antibiotics I am on should have killed any salmonella bacteria that got in my system. He thinks that I rather picked up some nasty viral infection somewhere that had to run its course.

As for the shortness of breath - he took me off of TOBI for 28 days. He said that since I had been on it so long (just under 7 weeks now - with 5 days off) that may be a large part of the problem. I have had problems with TOBI in the past - i.e. hemoptysis - so he discontinued that for 28 days as usual. He also took me off Pulmozyme for a week. They started me on Pulmozyme twice a day when I went on IVs and he thinks the switch from once a day to twice a day may have been too much. So the Pulmozyme and the TOBI combined he said are most likely what is causing the shortness of breath. I start the Pulmozyme up again next week - just once a day like I used to do.

I had other symptoms that developed last night and this morning that led him to think it was the pulmo along with the TOBI I think. My throat was feeling swollen and my tongue felt enlarged and I was having some difficulty swallowing as well.

I also mentioned that my legs felt a little weak and he said he thinks it is just from the fact that I have been short of breath and he thinks my body is just worn out from all the antibiotics - as I have never been on IVs longer than 2 weeks before and today was week 3. I will end IVs on Monday and that will be a total of 24 days on them. They kept me on them an extra week because of my getting sick last weekend and the fact that I didn't eat for about 24-36 hours.

As for the visit, it went well considering. My weight was down from last week - but I went those 24-36 hours without really eating so that was to be expected (I am still 3-4 pounds more than I was before IVs). My O2 sats were at 92 - which was down from last week (which was 94) - but I was huffing and puffing from being SOB when I went this afternoon so all in all that isn't bad. They didn't do PFTs as they didn't want to induce the SOB in any way - I had just managed to get it under control when the doc came in - so they chose against them.

The doc said that if indeed the Pulmo and TOBI were the problem that I should be feeling really good come Monday - once they are really out of my system and I have had a few days break. I should also get some relief in my throat. If I am not feeling better obviously I will be going back to see them next week. I am thinking that I will feel better though - as I felt okay this morning BEFORE my nebs - and didn't really get SOB until after I finished them.

Well thanks all for your thoughts, input and concern. I really do appreciate it - I was a bit scared by this ordeal. I am looking forward to the weekend and just resting. I know a bit of a switch but the doc told me to lay off of the walking for a few days that I just need to rest up and too see how I feel maybe Sunday, and if I don't feel up to walking do NOT push it - just wait til I feel better.

Thanks again guys,
Lindsey

 

[coltsfan715]

Well I had my appointment this afternoon.

The doc thinks I sound good and look good. He said by all accounts the IV meds have worked I am not coughing as much - if at all really unless doing CPT or the Saline, I am moving air well by his listening to me and the fact that my sputum is much improved he is pleased and I am still up a bit on my weight from what I was when admitted.

He also asked about my getting sick this past weekend and said that he thinks it is possible that I had food poisoning, but unlikely because the antibiotics I am on should have killed any salmonella bacteria that got in my system. He thinks that I rather picked up some nasty viral infection somewhere that had to run its course.

As for the shortness of breath - he took me off of TOBI for 28 days. He said that since I had been on it so long (just under 7 weeks now - with 5 days off) that may be a large part of the problem. I have had problems with TOBI in the past - i.e. hemoptysis - so he discontinued that for 28 days as usual. He also took me off Pulmozyme for a week. They started me on Pulmozyme twice a day when I went on IVs and he thinks the switch from once a day to twice a day may have been too much. So the Pulmozyme and the TOBI combined he said are most likely what is causing the shortness of breath. I start the Pulmozyme up again next week - just once a day like I used to do.

I had other symptoms that developed last night and this morning that led him to think it was the pulmo along with the TOBI I think. My throat was feeling swollen and my tongue felt enlarged and I was having some difficulty swallowing as well.

I also mentioned that my legs felt a little weak and he said he thinks it is just from the fact that I have been short of breath and he thinks my body is just worn out from all the antibiotics - as I have never been on IVs longer than 2 weeks before and today was week 3. I will end IVs on Monday and that will be a total of 24 days on them. They kept me on them an extra week because of my getting sick last weekend and the fact that I didn't eat for about 24-36 hours.

As for the visit, it went well considering. My weight was down from last week - but I went those 24-36 hours without really eating so that was to be expected (I am still 3-4 pounds more than I was before IVs). My O2 sats were at 92 - which was down from last week (which was 94) - but I was huffing and puffing from being SOB when I went this afternoon so all in all that isn't bad. They didn't do PFTs as they didn't want to induce the SOB in any way - I had just managed to get it under control when the doc came in - so they chose against them.

The doc said that if indeed the Pulmo and TOBI were the problem that I should be feeling really good come Monday - once they are really out of my system and I have had a few days break. I should also get some relief in my throat. If I am not feeling better obviously I will be going back to see them next week. I am thinking that I will feel better though - as I felt okay this morning BEFORE my nebs - and didn't really get SOB until after I finished them.

Well thanks all for your thoughts, input and concern. I really do appreciate it - I was a bit scared by this ordeal. I am looking forward to the weekend and just resting. I know a bit of a switch but the doc told me to lay off of the walking for a few days that I just need to rest up and too see how I feel maybe Sunday, and if I don't feel up to walking do NOT push it - just wait til I feel better.

Thanks again guys,
Lindsey

 

[CowTown]

Well that's great Lindsey! Sounds like it all went pretty well. Nothing too crazy. I hope you feel much better by Sunday! Take it easy.

By the way....what in the world does SOB mean? I just keep thinking of 'son of a beatch!'

 

[CowTown]

Well that's great Lindsey! Sounds like it all went pretty well. Nothing too crazy. I hope you feel much better by Sunday! Take it easy.

By the way....what in the world does SOB mean? I just keep thinking of 'son of a beatch!'

 

[CowTown]

Well that's great Lindsey! Sounds like it all went pretty well. Nothing too crazy. I hope you feel much better by Sunday! Take it easy.

By the way....what in the world does SOB mean? I just keep thinking of 'son of a beatch!'