I recently did 2 weeks in patient clean out. My pfts are lower now than before I went in the hospital. I've spent all evening looking at various compressors. Reading the meds available through foundation care. Wondering if I should be taking more nebs. If I am being aggressive enough w my therapy. If the dr I've seen for years is treating my cf aggressive enough. If my dr is even still right for me after 10+ yrs. Today is just one of those days where it's really hard to have cf. <img src="i/expressions/face-icon-small-sad.gif" border="0">
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Feeling overwhelmed and questioning everything
- Thread starter Andi2007
- Start date
I recently did 2 weeks in patient clean out. My pfts are lower now than before I went in the hospital. I've spent all evening looking at various compressors. Reading the meds available through foundation care. Wondering if I should be taking more nebs. If I am being aggressive enough w my therapy. If the dr I've seen for years is treating my cf aggressive enough. If my dr is even still right for me after 10+ yrs. Today is just one of those days where it's really hard to have cf. <img src="i/expressions/face-icon-small-sad.gif" border="0">
I recently did 2 weeks in patient clean out. My pfts are lower now than before I went in the hospital. I've spent all evening looking at various compressors. Reading the meds available through foundation care. Wondering if I should be taking more nebs. If I am being aggressive enough w my therapy. If the dr I've seen for years is treating my cf aggressive enough. If my dr is even still right for me after 10+ yrs. Today is just one of those days where it's really hard to have cf. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Hi Andi,
Sorry to hear that things are not picking up for you. <img src="i/expressions/face-icon-small-sad.gif" border="0">
I've had the same thing happen to me in the past...I went in for I.Vs my lung function had not always picked up after treatment- the way I've wanted it too. And it can leave you feeling really down about the whole thing.
Just a few questions. What kinda nebulized meds are you on? How many times a day are you having them?
Do you exercise?
Since upping my exercise (which I find is a real effort) I'm finding it's helped with feeling better in the lungs. Just a suggestion though.
I really hope things start getting better for you Andi.
*Hugs*
Sorry to hear that things are not picking up for you. <img src="i/expressions/face-icon-small-sad.gif" border="0">
I've had the same thing happen to me in the past...I went in for I.Vs my lung function had not always picked up after treatment- the way I've wanted it too. And it can leave you feeling really down about the whole thing.
Just a few questions. What kinda nebulized meds are you on? How many times a day are you having them?
Do you exercise?
Since upping my exercise (which I find is a real effort) I'm finding it's helped with feeling better in the lungs. Just a suggestion though.
I really hope things start getting better for you Andi.
*Hugs*
Hi Andi,
Sorry to hear that things are not picking up for you. <img src="i/expressions/face-icon-small-sad.gif" border="0">
I've had the same thing happen to me in the past...I went in for I.Vs my lung function had not always picked up after treatment- the way I've wanted it too. And it can leave you feeling really down about the whole thing.
Just a few questions. What kinda nebulized meds are you on? How many times a day are you having them?
Do you exercise?
Since upping my exercise (which I find is a real effort) I'm finding it's helped with feeling better in the lungs. Just a suggestion though.
I really hope things start getting better for you Andi.
*Hugs*
Sorry to hear that things are not picking up for you. <img src="i/expressions/face-icon-small-sad.gif" border="0">
I've had the same thing happen to me in the past...I went in for I.Vs my lung function had not always picked up after treatment- the way I've wanted it too. And it can leave you feeling really down about the whole thing.
Just a few questions. What kinda nebulized meds are you on? How many times a day are you having them?
Do you exercise?
Since upping my exercise (which I find is a real effort) I'm finding it's helped with feeling better in the lungs. Just a suggestion though.
I really hope things start getting better for you Andi.
*Hugs*
Hi Andi,
<br />
<br />Sorry to hear that things are not picking up for you. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />I've had the same thing happen to me in the past...I went in for I.Vs my lung function had not always picked up after treatment- the way I've wanted it too. And it can leave you feeling really down about the whole thing.
<br />
<br />Just a few questions. What kinda nebulized meds are you on? How many times a day are you having them?
<br />Do you exercise?
<br />
<br />Since upping my exercise (which I find is a real effort) I'm finding it's helped with feeling better in the lungs. Just a suggestion though.
<br />
<br />I really hope things start getting better for you Andi.
<br />
<br />*Hugs*
<br />
<br />
<br />
<br />Sorry to hear that things are not picking up for you. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />I've had the same thing happen to me in the past...I went in for I.Vs my lung function had not always picked up after treatment- the way I've wanted it too. And it can leave you feeling really down about the whole thing.
<br />
<br />Just a few questions. What kinda nebulized meds are you on? How many times a day are you having them?
<br />Do you exercise?
<br />
<br />Since upping my exercise (which I find is a real effort) I'm finding it's helped with feeling better in the lungs. Just a suggestion though.
<br />
<br />I really hope things start getting better for you Andi.
<br />
<br />*Hugs*
<br />
<br />
Pulmozyme 1x day. 7% hts 1x day. Vest 1x day. A couple months ago I was exercising 3x a week. Didn't result in pft increase. I walk my dog but since the hospital stay I haven't restarted regular exercising. My energy just seems drained. I used to be able to mow our lawn front and back and the front is uphill. That was last summer. Now just the thought of it seems impossible.
Pulmozyme 1x day. 7% hts 1x day. Vest 1x day. A couple months ago I was exercising 3x a week. Didn't result in pft increase. I walk my dog but since the hospital stay I haven't restarted regular exercising. My energy just seems drained. I used to be able to mow our lawn front and back and the front is uphill. That was last summer. Now just the thought of it seems impossible.
Pulmozyme 1x day. 7% hts 1x day. Vest 1x day. A couple months ago I was exercising 3x a week. Didn't result in pft increase. I walk my dog but since the hospital stay I haven't restarted regular exercising. My energy just seems drained. I used to be able to mow our lawn front and back and the front is uphill. That was last summer. Now just the thought of it seems impossible.
OMG, I totally hear you! I used to have a lung function that was pretty functional for me, even though it was low. I've recently had to mow my own yard(s) now and it is a HUGE battle. Like you, I need to mow the front and back and the front is uphill. It takes me hours to do it because it's so hard for me. My lung function is pretty crappy and I've been on IVs for almost 8 months now and I've had no change. I have mycobacteria, so I knew going into this that the IVs would be quite a long course...I expected to feel better, though and that has yet to happen. I'm at the point where I'm questioning what my CF doc (who I've been seeing for over 20 yrs) is thinking in terms of treatment and medicine. Is he right for me? Should I see someone else? Is this really how things are supposed to be going? etc. etc.
I don't know, I'm sorry I don't have anything productive to say, I just wanted to agree with you and let you know that I totally understand what you're feeling right now. Hope things look up for you soon!
I don't know, I'm sorry I don't have anything productive to say, I just wanted to agree with you and let you know that I totally understand what you're feeling right now. Hope things look up for you soon!
OMG, I totally hear you! I used to have a lung function that was pretty functional for me, even though it was low. I've recently had to mow my own yard(s) now and it is a HUGE battle. Like you, I need to mow the front and back and the front is uphill. It takes me hours to do it because it's so hard for me. My lung function is pretty crappy and I've been on IVs for almost 8 months now and I've had no change. I have mycobacteria, so I knew going into this that the IVs would be quite a long course...I expected to feel better, though and that has yet to happen. I'm at the point where I'm questioning what my CF doc (who I've been seeing for over 20 yrs) is thinking in terms of treatment and medicine. Is he right for me? Should I see someone else? Is this really how things are supposed to be going? etc. etc.
I don't know, I'm sorry I don't have anything productive to say, I just wanted to agree with you and let you know that I totally understand what you're feeling right now. Hope things look up for you soon!
I don't know, I'm sorry I don't have anything productive to say, I just wanted to agree with you and let you know that I totally understand what you're feeling right now. Hope things look up for you soon!
OMG, I totally hear you! I used to have a lung function that was pretty functional for me, even though it was low. I've recently had to mow my own yard(s) now and it is a HUGE battle. Like you, I need to mow the front and back and the front is uphill. It takes me hours to do it because it's so hard for me. My lung function is pretty crappy and I've been on IVs for almost 8 months now and I've had no change. I have mycobacteria, so I knew going into this that the IVs would be quite a long course...I expected to feel better, though and that has yet to happen. I'm at the point where I'm questioning what my CF doc (who I've been seeing for over 20 yrs) is thinking in terms of treatment and medicine. Is he right for me? Should I see someone else? Is this really how things are supposed to be going? etc. etc.
<br />
<br />I don't know, I'm sorry I don't have anything productive to say, I just wanted to agree with you and let you know that I totally understand what you're feeling right now. Hope things look up for you soon!
<br />
<br />I don't know, I'm sorry I don't have anything productive to say, I just wanted to agree with you and let you know that I totally understand what you're feeling right now. Hope things look up for you soon!
Has your doctor check for mycobacteria? When I had this a few years ago, I just always felt like crap and tune-ups were not helping....my lung function just kept going down. There was no rhyme or reason and it turned out to be MAC, which is treated over 18-24 months of oral drugs.
What other bacteria do you grow? I am shocked that you are not on TOBI, Casyton or Colisten. Do you take oral antibiotics like zythromax or any anti-fungals like V-Fend (voriconizole)?
I am also surprised that you don't mention albuterol, or doing your Vest at least 2-3 times a day, as well as maybe getting some manual PT in there.
In my opinion, you should amp up your treatments to at least 2 x's if not 3 x's a day, increased nebs, and EXERCISE! My lung function is 25%, and I work out at least 3 x's a week for 45 minutes. Ya it sucks and ya it's hard, but it's increased my stamina and lung function by 3%. I'm still totally breathless but it keeps me STRONG. This may be why you don't have energy, because you stopped moving =) It's sooooo hard at first, but after time, you'll say to yourself "why the hell wasn't I doing this all along!"
Speak up at your clinic visits and insist your doctor take a more vested interest in your care! Only you can be your own advocate.
Good luck! Stay strong!
What other bacteria do you grow? I am shocked that you are not on TOBI, Casyton or Colisten. Do you take oral antibiotics like zythromax or any anti-fungals like V-Fend (voriconizole)?
I am also surprised that you don't mention albuterol, or doing your Vest at least 2-3 times a day, as well as maybe getting some manual PT in there.
In my opinion, you should amp up your treatments to at least 2 x's if not 3 x's a day, increased nebs, and EXERCISE! My lung function is 25%, and I work out at least 3 x's a week for 45 minutes. Ya it sucks and ya it's hard, but it's increased my stamina and lung function by 3%. I'm still totally breathless but it keeps me STRONG. This may be why you don't have energy, because you stopped moving =) It's sooooo hard at first, but after time, you'll say to yourself "why the hell wasn't I doing this all along!"
Speak up at your clinic visits and insist your doctor take a more vested interest in your care! Only you can be your own advocate.
Good luck! Stay strong!
Has your doctor check for mycobacteria? When I had this a few years ago, I just always felt like crap and tune-ups were not helping....my lung function just kept going down. There was no rhyme or reason and it turned out to be MAC, which is treated over 18-24 months of oral drugs.
What other bacteria do you grow? I am shocked that you are not on TOBI, Casyton or Colisten. Do you take oral antibiotics like zythromax or any anti-fungals like V-Fend (voriconizole)?
I am also surprised that you don't mention albuterol, or doing your Vest at least 2-3 times a day, as well as maybe getting some manual PT in there.
In my opinion, you should amp up your treatments to at least 2 x's if not 3 x's a day, increased nebs, and EXERCISE! My lung function is 25%, and I work out at least 3 x's a week for 45 minutes. Ya it sucks and ya it's hard, but it's increased my stamina and lung function by 3%. I'm still totally breathless but it keeps me STRONG. This may be why you don't have energy, because you stopped moving =) It's sooooo hard at first, but after time, you'll say to yourself "why the hell wasn't I doing this all along!"
Speak up at your clinic visits and insist your doctor take a more vested interest in your care! Only you can be your own advocate.
Good luck! Stay strong!
What other bacteria do you grow? I am shocked that you are not on TOBI, Casyton or Colisten. Do you take oral antibiotics like zythromax or any anti-fungals like V-Fend (voriconizole)?
I am also surprised that you don't mention albuterol, or doing your Vest at least 2-3 times a day, as well as maybe getting some manual PT in there.
In my opinion, you should amp up your treatments to at least 2 x's if not 3 x's a day, increased nebs, and EXERCISE! My lung function is 25%, and I work out at least 3 x's a week for 45 minutes. Ya it sucks and ya it's hard, but it's increased my stamina and lung function by 3%. I'm still totally breathless but it keeps me STRONG. This may be why you don't have energy, because you stopped moving =) It's sooooo hard at first, but after time, you'll say to yourself "why the hell wasn't I doing this all along!"
Speak up at your clinic visits and insist your doctor take a more vested interest in your care! Only you can be your own advocate.
Good luck! Stay strong!
Has your doctor check for mycobacteria? When I had this a few years ago, I just always felt like crap and tune-ups were not helping....my lung function just kept going down. There was no rhyme or reason and it turned out to be MAC, which is treated over 18-24 months of oral drugs.
<br />
<br />What other bacteria do you grow? I am shocked that you are not on TOBI, Casyton or Colisten. Do you take oral antibiotics like zythromax or any anti-fungals like V-Fend (voriconizole)?
<br />
<br />I am also surprised that you don't mention albuterol, or doing your Vest at least 2-3 times a day, as well as maybe getting some manual PT in there.
<br />
<br />In my opinion, you should amp up your treatments to at least 2 x's if not 3 x's a day, increased nebs, and EXERCISE! My lung function is 25%, and I work out at least 3 x's a week for 45 minutes. Ya it sucks and ya it's hard, but it's increased my stamina and lung function by 3%. I'm still totally breathless but it keeps me STRONG. This may be why you don't have energy, because you stopped moving =) It's sooooo hard at first, but after time, you'll say to yourself "why the hell wasn't I doing this all along!"
<br />
<br />Speak up at your clinic visits and insist your doctor take a more vested interest in your care! Only you can be your own advocate.
<br />
<br />Good luck! Stay strong!
<br />
<br />What other bacteria do you grow? I am shocked that you are not on TOBI, Casyton or Colisten. Do you take oral antibiotics like zythromax or any anti-fungals like V-Fend (voriconizole)?
<br />
<br />I am also surprised that you don't mention albuterol, or doing your Vest at least 2-3 times a day, as well as maybe getting some manual PT in there.
<br />
<br />In my opinion, you should amp up your treatments to at least 2 x's if not 3 x's a day, increased nebs, and EXERCISE! My lung function is 25%, and I work out at least 3 x's a week for 45 minutes. Ya it sucks and ya it's hard, but it's increased my stamina and lung function by 3%. I'm still totally breathless but it keeps me STRONG. This may be why you don't have energy, because you stopped moving =) It's sooooo hard at first, but after time, you'll say to yourself "why the hell wasn't I doing this all along!"
<br />
<br />Speak up at your clinic visits and insist your doctor take a more vested interest in your care! Only you can be your own advocate.
<br />
<br />Good luck! Stay strong!
Sounds like you need to up your meds.
Have you tried salbutamol & Ipratropium together before doing your Pulmozyme & hts?
Salbutamol & Ipratropium help open up your airways.
I usually take these before 2 -3 times a day before nebulising any other meds.
Also what in the way of oral inhalers do you use? I find Pulmicort & serevent much needed meds to help me breathe better.
Next time you see your doc I would ask him to test your sputum for other strains of Pseudomonas and test for MAC.
Fungal also plays a big part in things with lungs etc. I've had to go on Itrconazole capsules for 2 -3 weeks every now and then, just to get rid of a fungal overgrowth in lungs.
I would ask your doc about the fungal thing as well.
Hope this helps...
Being proactive is hard to do sometimes, but well worth it in the end! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope you find something that works for you...all the best,
*hugs* Sarah
Have you tried salbutamol & Ipratropium together before doing your Pulmozyme & hts?
Salbutamol & Ipratropium help open up your airways.
I usually take these before 2 -3 times a day before nebulising any other meds.
Also what in the way of oral inhalers do you use? I find Pulmicort & serevent much needed meds to help me breathe better.
Next time you see your doc I would ask him to test your sputum for other strains of Pseudomonas and test for MAC.
Fungal also plays a big part in things with lungs etc. I've had to go on Itrconazole capsules for 2 -3 weeks every now and then, just to get rid of a fungal overgrowth in lungs.
I would ask your doc about the fungal thing as well.
Hope this helps...
Being proactive is hard to do sometimes, but well worth it in the end! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope you find something that works for you...all the best,
*hugs* Sarah
Sounds like you need to up your meds.
Have you tried salbutamol & Ipratropium together before doing your Pulmozyme & hts?
Salbutamol & Ipratropium help open up your airways.
I usually take these before 2 -3 times a day before nebulising any other meds.
Also what in the way of oral inhalers do you use? I find Pulmicort & serevent much needed meds to help me breathe better.
Next time you see your doc I would ask him to test your sputum for other strains of Pseudomonas and test for MAC.
Fungal also plays a big part in things with lungs etc. I've had to go on Itrconazole capsules for 2 -3 weeks every now and then, just to get rid of a fungal overgrowth in lungs.
I would ask your doc about the fungal thing as well.
Hope this helps...
Being proactive is hard to do sometimes, but well worth it in the end! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope you find something that works for you...all the best,
*hugs* Sarah
Have you tried salbutamol & Ipratropium together before doing your Pulmozyme & hts?
Salbutamol & Ipratropium help open up your airways.
I usually take these before 2 -3 times a day before nebulising any other meds.
Also what in the way of oral inhalers do you use? I find Pulmicort & serevent much needed meds to help me breathe better.
Next time you see your doc I would ask him to test your sputum for other strains of Pseudomonas and test for MAC.
Fungal also plays a big part in things with lungs etc. I've had to go on Itrconazole capsules for 2 -3 weeks every now and then, just to get rid of a fungal overgrowth in lungs.
I would ask your doc about the fungal thing as well.
Hope this helps...
Being proactive is hard to do sometimes, but well worth it in the end! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope you find something that works for you...all the best,
*hugs* Sarah
Sounds like you need to up your meds.
<br />
<br />Have you tried salbutamol & Ipratropium together before doing your Pulmozyme & hts?
<br />Salbutamol & Ipratropium help open up your airways.
<br />
<br />I usually take these before 2 -3 times a day before nebulising any other meds.
<br />Also what in the way of oral inhalers do you use? I find Pulmicort & serevent much needed meds to help me breathe better.
<br />
<br />Next time you see your doc I would ask him to test your sputum for other strains of Pseudomonas and test for MAC.
<br />
<br />Fungal also plays a big part in things with lungs etc. I've had to go on Itrconazole capsules for 2 -3 weeks every now and then, just to get rid of a fungal overgrowth in lungs.
<br />I would ask your doc about the fungal thing as well.
<br />
<br />Hope this helps...
<br />
<br />Being proactive is hard to do sometimes, but well worth it in the end! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Hope you find something that works for you...all the best,
<br />
<br />*hugs* Sarah
<br />
<br />
<br />
<br />
<br />Have you tried salbutamol & Ipratropium together before doing your Pulmozyme & hts?
<br />Salbutamol & Ipratropium help open up your airways.
<br />
<br />I usually take these before 2 -3 times a day before nebulising any other meds.
<br />Also what in the way of oral inhalers do you use? I find Pulmicort & serevent much needed meds to help me breathe better.
<br />
<br />Next time you see your doc I would ask him to test your sputum for other strains of Pseudomonas and test for MAC.
<br />
<br />Fungal also plays a big part in things with lungs etc. I've had to go on Itrconazole capsules for 2 -3 weeks every now and then, just to get rid of a fungal overgrowth in lungs.
<br />I would ask your doc about the fungal thing as well.
<br />
<br />Hope this helps...
<br />
<br />Being proactive is hard to do sometimes, but well worth it in the end! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Hope you find something that works for you...all the best,
<br />
<br />*hugs* Sarah
<br />
<br />
<br />
Iamqueenofeverything
New member
been there. got tested for allergies and i am allergic to all the molds and pollens. so i am going to suggust if you can get test for allergies and get allegry shots. been doing these shots since oct. and have been helping. another thing to that has helped me is an air purifier. you can get one at home depot or lowes.
Iamqueenofeverything
New member
been there. got tested for allergies and i am allergic to all the molds and pollens. so i am going to suggust if you can get test for allergies and get allegry shots. been doing these shots since oct. and have been helping. another thing to that has helped me is an air purifier. you can get one at home depot or lowes.