IV's

[jfarel]

I've been on IV's for about 11 days. Two or 3 days into the IV's my loose productive cough seemed to leave. Since then I've had a tight chest and shortness of breath. I was prescribed Advair, which made my alread rapid heartbeat worse (I stopped it) and now I am on Flovent in addition to albuterol. The tightness and shortness of breath was getting better but today it is worse, although not as bad as it was at the beginning. This is my third time on IV's and I have never had this happen before. I don't feel congested, and I have trouble bringing up anything, even after doing my vest 3-4 times a day. Pulmozyme doesn't help much and neither does the hypertonic saline.

What do you think could be causing this? Its very annoying and last night I had trouble sleeping for the first time in several days (due to the chest tightness). My RN at the cf clinic thinks it is caused by the inflammation from the infection. I don't want to go on prednisone due to my blood sugar situation. Should I stick with the flovent and just hope it eventually works. Maybe I should try the advair again?

John 26 w/ cf

 

[jfarel]

I've been on IV's for about 11 days. Two or 3 days into the IV's my loose productive cough seemed to leave. Since then I've had a tight chest and shortness of breath. I was prescribed Advair, which made my alread rapid heartbeat worse (I stopped it) and now I am on Flovent in addition to albuterol. The tightness and shortness of breath was getting better but today it is worse, although not as bad as it was at the beginning. This is my third time on IV's and I have never had this happen before. I don't feel congested, and I have trouble bringing up anything, even after doing my vest 3-4 times a day. Pulmozyme doesn't help much and neither does the hypertonic saline.

What do you think could be causing this? Its very annoying and last night I had trouble sleeping for the first time in several days (due to the chest tightness). My RN at the cf clinic thinks it is caused by the inflammation from the infection. I don't want to go on prednisone due to my blood sugar situation. Should I stick with the flovent and just hope it eventually works. Maybe I should try the advair again?

John 26 w/ cf

 

[jfarel]

I've been on IV's for about 11 days. Two or 3 days into the IV's my loose productive cough seemed to leave. Since then I've had a tight chest and shortness of breath. I was prescribed Advair, which made my alread rapid heartbeat worse (I stopped it) and now I am on Flovent in addition to albuterol. The tightness and shortness of breath was getting better but today it is worse, although not as bad as it was at the beginning. This is my third time on IV's and I have never had this happen before. I don't feel congested, and I have trouble bringing up anything, even after doing my vest 3-4 times a day. Pulmozyme doesn't help much and neither does the hypertonic saline.

What do you think could be causing this? Its very annoying and last night I had trouble sleeping for the first time in several days (due to the chest tightness). My RN at the cf clinic thinks it is caused by the inflammation from the infection. I don't want to go on prednisone due to my blood sugar situation. Should I stick with the flovent and just hope it eventually works. Maybe I should try the advair again?

John 26 w/ cf

 

[coltsfan715]

Hi John,

I am sorry you are going through this - I unfortunately know how you feel. It is so frustrating and kind of scary to feel that way so far into IV treatment.

I was having severe chest tightness - what felt like inflammation - and extreme shortness of breath. Extreme to the point of almost hyperventilating with just getting dressed. I felt good other than the chest tightness and the shortness of breath. I was also having this swollen feeling in my throat and my tongue felt inflammed too. I called the doc about it cause it was confusing to me - cause like I said I felt good otherwise. I had seen improvement after the first 2 weeks I was on IVs then BAM week 3 this all started.

I went to the doc on Friday and talked to him about it possibly being a reaction to medication. He decided to take me off of TOBI since I had been on it for an extended period (almost 7 weeks - with 5-6 days off) and he also took me off of Pulmozyme for a week. He took me off the Pulmozyme because he had changed my routine for Pulmo from once a day to twice a day. I will say I noticed a difference within 24 hours. I was still short of breath with some exertion - like prolonged walking - but I was able to bathe, get dressed walk around the house and go to the store and all with no serious problems - which was a total switch from the day before when I wanted to be strapped to albuterol continuously because that was the only time I was getting relief from the shortness of breath. Sunday was a bit better as well - my legs were somewhat weak but overall I felt good - same with Monday.

I was taken off of IVs yesterday because the doc felt I had been on them long enough and thought I sounded and looked well enough to be taken off of them. Today is the first day I have attempted to walk on the treadmill since my shortness of breath episodes - and since I have been off the TOBI and Pulmozyme. I was able to walk just over 2 miles with no real problems and I feel GREAT with my breathing especially.

For me the problem was the TOBI and the increase in the Pulmozyme. I start the Pulmo again this Friday, but just once a day (not twice anymore) and hopefully I will not have problems when I start it again.

I thought my problem may be the Advair as well - I stopped it for several days - the first 24 hours I had stopped it I was still taking the TOBI and Pulmo and was able to notice that not only did my breathing get worse I could connect it directly to the times that I took my treatments. It was worse right afterwards for up to 3-4 hours after my morning dose and evening dose (and yes it did effect my sleeping as well - since Saturday night I have slept like a rock)

I would make a list of your meds and try to mark them off. Meaning list them all and then mark off the ones you KNOW are not causing you problems. Then with the ones you are unsure of check them out - look up side effects, drug interactions, allergic reaction symptoms and so on. I went through and did that with all of my meds when I started having problems cause I just had this gut feeling it was a medication related problem. Luckily the docs were open to listening to me and agreed with my assumption - once they saw me in the office and could see that I was doing well overall.

I would call your doc again - one before the problem gets really bad and two with some of your thoughts if you think it is drug related. Also be completely honest if you have NOT been doing all your meds as recommended. I had to fess up that I thought it may be the advair because I had not done it regularly up until recently (meaning the last month). Though we may be afraid of getting lectured - it helps them to know all the information that way they can get a good assessment of the situation.

I hope you start feeling better and I would really try to see if your doc can see you in the office. Sometimes it is soo hard to express what is going on over the phone. I for one was terrified when my doc wanted to see me last Friday - I thought he was going to be putting me on O2 for sure - but I am so glad that he did because it helped put my mind at ease about things and helped them to understand what I was going through.

I will be thinking of you and hoping you feel better very soon.

Lindsey

Sorry this is sooo long <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[coltsfan715]

Hi John,

I am sorry you are going through this - I unfortunately know how you feel. It is so frustrating and kind of scary to feel that way so far into IV treatment.

I was having severe chest tightness - what felt like inflammation - and extreme shortness of breath. Extreme to the point of almost hyperventilating with just getting dressed. I felt good other than the chest tightness and the shortness of breath. I was also having this swollen feeling in my throat and my tongue felt inflammed too. I called the doc about it cause it was confusing to me - cause like I said I felt good otherwise. I had seen improvement after the first 2 weeks I was on IVs then BAM week 3 this all started.

I went to the doc on Friday and talked to him about it possibly being a reaction to medication. He decided to take me off of TOBI since I had been on it for an extended period (almost 7 weeks - with 5-6 days off) and he also took me off of Pulmozyme for a week. He took me off the Pulmozyme because he had changed my routine for Pulmo from once a day to twice a day. I will say I noticed a difference within 24 hours. I was still short of breath with some exertion - like prolonged walking - but I was able to bathe, get dressed walk around the house and go to the store and all with no serious problems - which was a total switch from the day before when I wanted to be strapped to albuterol continuously because that was the only time I was getting relief from the shortness of breath. Sunday was a bit better as well - my legs were somewhat weak but overall I felt good - same with Monday.

I was taken off of IVs yesterday because the doc felt I had been on them long enough and thought I sounded and looked well enough to be taken off of them. Today is the first day I have attempted to walk on the treadmill since my shortness of breath episodes - and since I have been off the TOBI and Pulmozyme. I was able to walk just over 2 miles with no real problems and I feel GREAT with my breathing especially.

For me the problem was the TOBI and the increase in the Pulmozyme. I start the Pulmo again this Friday, but just once a day (not twice anymore) and hopefully I will not have problems when I start it again.

I thought my problem may be the Advair as well - I stopped it for several days - the first 24 hours I had stopped it I was still taking the TOBI and Pulmo and was able to notice that not only did my breathing get worse I could connect it directly to the times that I took my treatments. It was worse right afterwards for up to 3-4 hours after my morning dose and evening dose (and yes it did effect my sleeping as well - since Saturday night I have slept like a rock)

I would make a list of your meds and try to mark them off. Meaning list them all and then mark off the ones you KNOW are not causing you problems. Then with the ones you are unsure of check them out - look up side effects, drug interactions, allergic reaction symptoms and so on. I went through and did that with all of my meds when I started having problems cause I just had this gut feeling it was a medication related problem. Luckily the docs were open to listening to me and agreed with my assumption - once they saw me in the office and could see that I was doing well overall.

I would call your doc again - one before the problem gets really bad and two with some of your thoughts if you think it is drug related. Also be completely honest if you have NOT been doing all your meds as recommended. I had to fess up that I thought it may be the advair because I had not done it regularly up until recently (meaning the last month). Though we may be afraid of getting lectured - it helps them to know all the information that way they can get a good assessment of the situation.

I hope you start feeling better and I would really try to see if your doc can see you in the office. Sometimes it is soo hard to express what is going on over the phone. I for one was terrified when my doc wanted to see me last Friday - I thought he was going to be putting me on O2 for sure - but I am so glad that he did because it helped put my mind at ease about things and helped them to understand what I was going through.

I will be thinking of you and hoping you feel better very soon.

Lindsey

Sorry this is sooo long <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[coltsfan715]

Hi John,

I am sorry you are going through this - I unfortunately know how you feel. It is so frustrating and kind of scary to feel that way so far into IV treatment.

I was having severe chest tightness - what felt like inflammation - and extreme shortness of breath. Extreme to the point of almost hyperventilating with just getting dressed. I felt good other than the chest tightness and the shortness of breath. I was also having this swollen feeling in my throat and my tongue felt inflammed too. I called the doc about it cause it was confusing to me - cause like I said I felt good otherwise. I had seen improvement after the first 2 weeks I was on IVs then BAM week 3 this all started.

I went to the doc on Friday and talked to him about it possibly being a reaction to medication. He decided to take me off of TOBI since I had been on it for an extended period (almost 7 weeks - with 5-6 days off) and he also took me off of Pulmozyme for a week. He took me off the Pulmozyme because he had changed my routine for Pulmo from once a day to twice a day. I will say I noticed a difference within 24 hours. I was still short of breath with some exertion - like prolonged walking - but I was able to bathe, get dressed walk around the house and go to the store and all with no serious problems - which was a total switch from the day before when I wanted to be strapped to albuterol continuously because that was the only time I was getting relief from the shortness of breath. Sunday was a bit better as well - my legs were somewhat weak but overall I felt good - same with Monday.

I was taken off of IVs yesterday because the doc felt I had been on them long enough and thought I sounded and looked well enough to be taken off of them. Today is the first day I have attempted to walk on the treadmill since my shortness of breath episodes - and since I have been off the TOBI and Pulmozyme. I was able to walk just over 2 miles with no real problems and I feel GREAT with my breathing especially.

For me the problem was the TOBI and the increase in the Pulmozyme. I start the Pulmo again this Friday, but just once a day (not twice anymore) and hopefully I will not have problems when I start it again.

I thought my problem may be the Advair as well - I stopped it for several days - the first 24 hours I had stopped it I was still taking the TOBI and Pulmo and was able to notice that not only did my breathing get worse I could connect it directly to the times that I took my treatments. It was worse right afterwards for up to 3-4 hours after my morning dose and evening dose (and yes it did effect my sleeping as well - since Saturday night I have slept like a rock)

I would make a list of your meds and try to mark them off. Meaning list them all and then mark off the ones you KNOW are not causing you problems. Then with the ones you are unsure of check them out - look up side effects, drug interactions, allergic reaction symptoms and so on. I went through and did that with all of my meds when I started having problems cause I just had this gut feeling it was a medication related problem. Luckily the docs were open to listening to me and agreed with my assumption - once they saw me in the office and could see that I was doing well overall.

I would call your doc again - one before the problem gets really bad and two with some of your thoughts if you think it is drug related. Also be completely honest if you have NOT been doing all your meds as recommended. I had to fess up that I thought it may be the advair because I had not done it regularly up until recently (meaning the last month). Though we may be afraid of getting lectured - it helps them to know all the information that way they can get a good assessment of the situation.

I hope you start feeling better and I would really try to see if your doc can see you in the office. Sometimes it is soo hard to express what is going on over the phone. I for one was terrified when my doc wanted to see me last Friday - I thought he was going to be putting me on O2 for sure - but I am so glad that he did because it helped put my mind at ease about things and helped them to understand what I was going through.

I will be thinking of you and hoping you feel better very soon.

Lindsey

Sorry this is sooo long <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jfarel]

I was calling the doctor 2 or 3 days in row when the shortness of breath was bad, as yours was, but it has improved, although it is somewhat worse today. I think I will monitor the situation today and tomorrow. If its still worse, i will call the doctor back. I did ask her about my sats (the nurse that is) and she didn't seem to think I should worry about that. But like you, if this keeps up, I will feel a lot better getting checked out. It is such a pain though, because I have to drive 2 hours to get to the cf clinic. I guess if I do have to go, I will also have to lug the IV meds with me.

 

[jfarel]

I was calling the doctor 2 or 3 days in row when the shortness of breath was bad, as yours was, but it has improved, although it is somewhat worse today. I think I will monitor the situation today and tomorrow. If its still worse, i will call the doctor back. I did ask her about my sats (the nurse that is) and she didn't seem to think I should worry about that. But like you, if this keeps up, I will feel a lot better getting checked out. It is such a pain though, because I have to drive 2 hours to get to the cf clinic. I guess if I do have to go, I will also have to lug the IV meds with me.

 

[jfarel]

I was calling the doctor 2 or 3 days in row when the shortness of breath was bad, as yours was, but it has improved, although it is somewhat worse today. I think I will monitor the situation today and tomorrow. If its still worse, i will call the doctor back. I did ask her about my sats (the nurse that is) and she didn't seem to think I should worry about that. But like you, if this keeps up, I will feel a lot better getting checked out. It is such a pain though, because I have to drive 2 hours to get to the cf clinic. I guess if I do have to go, I will also have to lug the IV meds with me.

 

[tleigh]

John,<br>
I have had a similar experience.  Depending on where you live
and what time of year-could your body be more susceptible to
environmental allergens?  This time of year is a killer for my
asthma-because of allergies.  Don't know if due to the IV's
your body is not able to combat something.  Just a thought.

 

[tleigh]

John,<br>
I have had a similar experience.  Depending on where you live
and what time of year-could your body be more susceptible to
environmental allergens?  This time of year is a killer for my
asthma-because of allergies.  Don't know if due to the IV's
your body is not able to combat something.  Just a thought.

 

[tleigh]

John,<br>
I have had a similar experience.  Depending on where you live
and what time of year-could your body be more susceptible to
environmental allergens?  This time of year is a killer for my
asthma-because of allergies.  Don't know if due to the IV's
your body is not able to combat something.  Just a thought.