What do I do?

jfarel

New member
I've been on IV's for almost three weeks. I was in the hospital for about 5 or 6 days. It all started with a virus on Christmas eve. I was feeling better than I had in a long time on December 23rd, even though prior to that I had not been doing great. I felt like I was on the mend. I had IV's for three weeks starting around Thanksgiving. They seemed to do the trick.

I had a g-tube put in on Dec. 13. After a painful 10 days I thought I was doing better. The virus hit on Dec. 24. My doctor told me to try and battle through it since I just came off IV's. The home health nurse told me about ten days later that I needed to call the doctor. My respirations were high and I sounded congested.

I went into the hospital for about 5 days (Jan 6-11). After some IV's I no longer felt sick, but I've been battling shortness of breath since then. It's been 9 days since I got out of the hospital. Some days I feel like I'm doing better, but a few hours or the next day the shortness of breath will come back. My appetite is good and I don't feel sick, but the SOB is so restricting, I have hard time doing anything, much less leaving my apartment.

I told the doctor and they asked me if I wanted O2 monitoring. Since I have ordered a monitor, I said I would hold off. My Sats have been running 87-91 with out o2. This is what is so frustrating. I've never had this problem before. My sats have always been 92-95 when I am on IV's and/ or feeling well. I just can't get them back up. I know its because of this shortness of breath/chest tightness.

As I said, I feel good besides being SOB. I asked the doctor about prednisone because in the past that has really helped me. I usually do 5 days and then stop. I've never done prednisone while on IV's and have never needed it.

I just don't know what else to try. This is so unusual for me. I've always bounced back after IV's. I don't why its not working.

Sorry this is so long, but I needed to vent.
 

jfarel

New member
I've been on IV's for almost three weeks. I was in the hospital for about 5 or 6 days. It all started with a virus on Christmas eve. I was feeling better than I had in a long time on December 23rd, even though prior to that I had not been doing great. I felt like I was on the mend. I had IV's for three weeks starting around Thanksgiving. They seemed to do the trick.

I had a g-tube put in on Dec. 13. After a painful 10 days I thought I was doing better. The virus hit on Dec. 24. My doctor told me to try and battle through it since I just came off IV's. The home health nurse told me about ten days later that I needed to call the doctor. My respirations were high and I sounded congested.

I went into the hospital for about 5 days (Jan 6-11). After some IV's I no longer felt sick, but I've been battling shortness of breath since then. It's been 9 days since I got out of the hospital. Some days I feel like I'm doing better, but a few hours or the next day the shortness of breath will come back. My appetite is good and I don't feel sick, but the SOB is so restricting, I have hard time doing anything, much less leaving my apartment.

I told the doctor and they asked me if I wanted O2 monitoring. Since I have ordered a monitor, I said I would hold off. My Sats have been running 87-91 with out o2. This is what is so frustrating. I've never had this problem before. My sats have always been 92-95 when I am on IV's and/ or feeling well. I just can't get them back up. I know its because of this shortness of breath/chest tightness.

As I said, I feel good besides being SOB. I asked the doctor about prednisone because in the past that has really helped me. I usually do 5 days and then stop. I've never done prednisone while on IV's and have never needed it.

I just don't know what else to try. This is so unusual for me. I've always bounced back after IV's. I don't why its not working.

Sorry this is so long, but I needed to vent.
 

jfarel

New member
I've been on IV's for almost three weeks. I was in the hospital for about 5 or 6 days. It all started with a virus on Christmas eve. I was feeling better than I had in a long time on December 23rd, even though prior to that I had not been doing great. I felt like I was on the mend. I had IV's for three weeks starting around Thanksgiving. They seemed to do the trick.

I had a g-tube put in on Dec. 13. After a painful 10 days I thought I was doing better. The virus hit on Dec. 24. My doctor told me to try and battle through it since I just came off IV's. The home health nurse told me about ten days later that I needed to call the doctor. My respirations were high and I sounded congested.

I went into the hospital for about 5 days (Jan 6-11). After some IV's I no longer felt sick, but I've been battling shortness of breath since then. It's been 9 days since I got out of the hospital. Some days I feel like I'm doing better, but a few hours or the next day the shortness of breath will come back. My appetite is good and I don't feel sick, but the SOB is so restricting, I have hard time doing anything, much less leaving my apartment.

I told the doctor and they asked me if I wanted O2 monitoring. Since I have ordered a monitor, I said I would hold off. My Sats have been running 87-91 with out o2. This is what is so frustrating. I've never had this problem before. My sats have always been 92-95 when I am on IV's and/ or feeling well. I just can't get them back up. I know its because of this shortness of breath/chest tightness.

As I said, I feel good besides being SOB. I asked the doctor about prednisone because in the past that has really helped me. I usually do 5 days and then stop. I've never done prednisone while on IV's and have never needed it.

I just don't know what else to try. This is so unusual for me. I've always bounced back after IV's. I don't why its not working.

Sorry this is so long, but I needed to vent.
 

jfarel

New member
I've been on IV's for almost three weeks. I was in the hospital for about 5 or 6 days. It all started with a virus on Christmas eve. I was feeling better than I had in a long time on December 23rd, even though prior to that I had not been doing great. I felt like I was on the mend. I had IV's for three weeks starting around Thanksgiving. They seemed to do the trick.

I had a g-tube put in on Dec. 13. After a painful 10 days I thought I was doing better. The virus hit on Dec. 24. My doctor told me to try and battle through it since I just came off IV's. The home health nurse told me about ten days later that I needed to call the doctor. My respirations were high and I sounded congested.

I went into the hospital for about 5 days (Jan 6-11). After some IV's I no longer felt sick, but I've been battling shortness of breath since then. It's been 9 days since I got out of the hospital. Some days I feel like I'm doing better, but a few hours or the next day the shortness of breath will come back. My appetite is good and I don't feel sick, but the SOB is so restricting, I have hard time doing anything, much less leaving my apartment.

I told the doctor and they asked me if I wanted O2 monitoring. Since I have ordered a monitor, I said I would hold off. My Sats have been running 87-91 with out o2. This is what is so frustrating. I've never had this problem before. My sats have always been 92-95 when I am on IV's and/ or feeling well. I just can't get them back up. I know its because of this shortness of breath/chest tightness.

As I said, I feel good besides being SOB. I asked the doctor about prednisone because in the past that has really helped me. I usually do 5 days and then stop. I've never done prednisone while on IV's and have never needed it.

I just don't know what else to try. This is so unusual for me. I've always bounced back after IV's. I don't why its not working.

Sorry this is so long, but I needed to vent.
 

jfarel

New member
I've been on IV's for almost three weeks. I was in the hospital for about 5 or 6 days. It all started with a virus on Christmas eve. I was feeling better than I had in a long time on December 23rd, even though prior to that I had not been doing great. I felt like I was on the mend. I had IV's for three weeks starting around Thanksgiving. They seemed to do the trick.

I had a g-tube put in on Dec. 13. After a painful 10 days I thought I was doing better. The virus hit on Dec. 24. My doctor told me to try and battle through it since I just came off IV's. The home health nurse told me about ten days later that I needed to call the doctor. My respirations were high and I sounded congested.

I went into the hospital for about 5 days (Jan 6-11). After some IV's I no longer felt sick, but I've been battling shortness of breath since then. It's been 9 days since I got out of the hospital. Some days I feel like I'm doing better, but a few hours or the next day the shortness of breath will come back. My appetite is good and I don't feel sick, but the SOB is so restricting, I have hard time doing anything, much less leaving my apartment.

I told the doctor and they asked me if I wanted O2 monitoring. Since I have ordered a monitor, I said I would hold off. My Sats have been running 87-91 with out o2. This is what is so frustrating. I've never had this problem before. My sats have always been 92-95 when I am on IV's and/ or feeling well. I just can't get them back up. I know its because of this shortness of breath/chest tightness.

As I said, I feel good besides being SOB. I asked the doctor about prednisone because in the past that has really helped me. I usually do 5 days and then stop. I've never done prednisone while on IV's and have never needed it.

I just don't know what else to try. This is so unusual for me. I've always bounced back after IV's. I don't why its not working.

Sorry this is so long, but I needed to vent.
 

Giggles

New member
Did you doctor do a sputum culture to make sure your are on the right drugs? the reason I ask is cause my usual cocktail has not been really doing the trick and now my latest culture showed I am resistant to the drugs so my doc is using different ones that are more aggressive this year on me. I have has the same problems of not bouncing back GOOD after IV's. It is sooooo disappointing cause you go through all that and you still do not feel great! I feel your pain. I would try talking to doc about the drugs. I also feel ALOT better when I am done with the meds and back to exercising, sleeping and eating. It takes about 3-4 weeks for me as I have gotten older.

Good luck and feel better! Keep a positive attitude cause the brain is a huge factor in how you feel!

Jennifer 35 years old with Cf and CFRD

PS I have had some nice results with Foradil and you breathe it in. Ask doc maybe?
 

Giggles

New member
Did you doctor do a sputum culture to make sure your are on the right drugs? the reason I ask is cause my usual cocktail has not been really doing the trick and now my latest culture showed I am resistant to the drugs so my doc is using different ones that are more aggressive this year on me. I have has the same problems of not bouncing back GOOD after IV's. It is sooooo disappointing cause you go through all that and you still do not feel great! I feel your pain. I would try talking to doc about the drugs. I also feel ALOT better when I am done with the meds and back to exercising, sleeping and eating. It takes about 3-4 weeks for me as I have gotten older.

Good luck and feel better! Keep a positive attitude cause the brain is a huge factor in how you feel!

Jennifer 35 years old with Cf and CFRD

PS I have had some nice results with Foradil and you breathe it in. Ask doc maybe?
 

Giggles

New member
Did you doctor do a sputum culture to make sure your are on the right drugs? the reason I ask is cause my usual cocktail has not been really doing the trick and now my latest culture showed I am resistant to the drugs so my doc is using different ones that are more aggressive this year on me. I have has the same problems of not bouncing back GOOD after IV's. It is sooooo disappointing cause you go through all that and you still do not feel great! I feel your pain. I would try talking to doc about the drugs. I also feel ALOT better when I am done with the meds and back to exercising, sleeping and eating. It takes about 3-4 weeks for me as I have gotten older.

Good luck and feel better! Keep a positive attitude cause the brain is a huge factor in how you feel!

Jennifer 35 years old with Cf and CFRD

PS I have had some nice results with Foradil and you breathe it in. Ask doc maybe?
 

Giggles

New member
Did you doctor do a sputum culture to make sure your are on the right drugs? the reason I ask is cause my usual cocktail has not been really doing the trick and now my latest culture showed I am resistant to the drugs so my doc is using different ones that are more aggressive this year on me. I have has the same problems of not bouncing back GOOD after IV's. It is sooooo disappointing cause you go through all that and you still do not feel great! I feel your pain. I would try talking to doc about the drugs. I also feel ALOT better when I am done with the meds and back to exercising, sleeping and eating. It takes about 3-4 weeks for me as I have gotten older.

Good luck and feel better! Keep a positive attitude cause the brain is a huge factor in how you feel!

Jennifer 35 years old with Cf and CFRD

PS I have had some nice results with Foradil and you breathe it in. Ask doc maybe?
 

Giggles

New member
Did you doctor do a sputum culture to make sure your are on the right drugs? the reason I ask is cause my usual cocktail has not been really doing the trick and now my latest culture showed I am resistant to the drugs so my doc is using different ones that are more aggressive this year on me. I have has the same problems of not bouncing back GOOD after IV's. It is sooooo disappointing cause you go through all that and you still do not feel great! I feel your pain. I would try talking to doc about the drugs. I also feel ALOT better when I am done with the meds and back to exercising, sleeping and eating. It takes about 3-4 weeks for me as I have gotten older.

Good luck and feel better! Keep a positive attitude cause the brain is a huge factor in how you feel!

Jennifer 35 years old with Cf and CFRD

PS I have had some nice results with Foradil and you breathe it in. Ask doc maybe?
 

JORDYSMOM

New member
I'm sorry you are still struggling. I was going to ask you exactly what Jennifer asked. Maybe you are growing something new or it has become resistant? Something is sure going on there. Do you have an asthma component to your CF? My son Jordan does, and he is on asmanex twice a day. It makes a big difference for him. Just a thought. Whatever it is, I hope you figure it out soon, and feel better.

Stacey
 

JORDYSMOM

New member
I'm sorry you are still struggling. I was going to ask you exactly what Jennifer asked. Maybe you are growing something new or it has become resistant? Something is sure going on there. Do you have an asthma component to your CF? My son Jordan does, and he is on asmanex twice a day. It makes a big difference for him. Just a thought. Whatever it is, I hope you figure it out soon, and feel better.

Stacey
 

JORDYSMOM

New member
I'm sorry you are still struggling. I was going to ask you exactly what Jennifer asked. Maybe you are growing something new or it has become resistant? Something is sure going on there. Do you have an asthma component to your CF? My son Jordan does, and he is on asmanex twice a day. It makes a big difference for him. Just a thought. Whatever it is, I hope you figure it out soon, and feel better.

Stacey
 

JORDYSMOM

New member
I'm sorry you are still struggling. I was going to ask you exactly what Jennifer asked. Maybe you are growing something new or it has become resistant? Something is sure going on there. Do you have an asthma component to your CF? My son Jordan does, and he is on asmanex twice a day. It makes a big difference for him. Just a thought. Whatever it is, I hope you figure it out soon, and feel better.

Stacey
 

JORDYSMOM

New member
I'm sorry you are still struggling. I was going to ask you exactly what Jennifer asked. Maybe you are growing something new or it has become resistant? Something is sure going on there. Do you have an asthma component to your CF? My son Jordan does, and he is on asmanex twice a day. It makes a big difference for him. Just a thought. Whatever it is, I hope you figure it out soon, and feel better.

Stacey
 
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