So discouraged- UPDATE

J

Jane

Digital opinion leader
<P>Josh has been off IVs for one week and he is already getting junky. <img src="i/expressions/face-icon-small-sad.gif" border="0"> He was on tobra and aztreonam for two weeks, then swtiched to tobra and imipenem for two more weeks.  His pfts went up 20 points and he felt great so they stopped the ABX last Friday.</P>
<P>Yesterday he started with the tickly cough and he was up last night and this morning coughing.  He is so discouraged and frustrated.  He's been in this up and down pattern for a two years and can't seems to break it.</P>
<P>Since he's been home he's been doing pt or vest 3 x a day.  He's started exercising and swimming too.  He been doing albuterol before pt.  He can't tolerate HS or tobi. </P>
<P>Obviously the meds were working, but did he need a longer course? What else should he be doing?  </P>
 
J

Jane

Digital opinion leader
<P>Josh has been off IVs for one week and he is already getting junky. <img src="i/expressions/face-icon-small-sad.gif" border="0"> He was on tobra and aztreonam for two weeks, then swtiched to tobra and imipenem for two more weeks. His pfts went up 20 points andhe felt great so they stopped the ABX last Friday.</P>
<P>Yesterday he started with the tickly cough and he was up last night and this morning coughing. He is so discouraged and frustrated. He's been in this up and down pattern for a two years and can't seems to break it.</P>
<P>Since he's been home he's been doing pt or vest 3 x a day. He's started exercising and swimming too. He been doing albuterol before pt. He can't tolerate HS or tobi. </P>
<P>Obviously the meds were working, but did he need a longer course? What else should he be doing? </P>
 
J

Jane

Digital opinion leader
<P>Josh has been off IVs for one week and he is already getting junky. <img src="i/expressions/face-icon-small-sad.gif" border="0"> He was on tobra and aztreonam for two weeks, then swtiched to tobra and imipenem for two more weeks. His pfts went up 20 points andhe felt great so they stopped the ABX last Friday.</P>
<P>Yesterday he started with the tickly cough and he was up last night and this morning coughing. He is so discouraged and frustrated. He's been in this up and down pattern for a two years and can't seems to break it.</P>
<P>Since he's been home he's been doing pt or vest 3 x a day. He's started exercising and swimming too. He been doing albuterol before pt. He can't tolerate HS or tobi. </P>
<P>Obviously the meds were working, but did he need a longer course? What else should he be doing? </P>
 
M

mag6125

New member
So discouraged!

Does he do aerosol tobi at home? That might be something to ask the docs about if he's not already on it, also is he diabetic? I know if I let my sugars gets real out of control I can get sick real quick because of it. Other than that maybe there is something growing deeper that he isn't culturing and the abx he's on may kill off everything else but that? Not real sure just throwing out some ideas, but I definitely share your frustration. Hope he's feeling better soon.
 
M

mag6125

New member
So discouraged!

Does he do aerosol tobi at home? That might be something to ask the docs about if he's not already on it, also is he diabetic? I know if I let my sugars gets real out of control I can get sick real quick because of it. Other than that maybe there is something growing deeper that he isn't culturing and the abx he's on may kill off everything else but that? Not real sure just throwing out some ideas, but I definitely share your frustration. Hope he's feeling better soon.
 
M

mag6125

New member
So discouraged!

Does he do aerosol tobi at home? That might be something to ask the docs about if he's not already on it, also is he diabetic? I know if I let my sugars gets real out of control I can get sick real quick because of it. Other than that maybe there is something growing deeper that he isn't culturing and the abx he's on may kill off everything else but that? Not real sure just throwing out some ideas, but I definitely share your frustration. Hope he's feeling better soon.
 
J

JORDYSMOM

New member
So discouraged!

<P>Ugh!  I hate this for him.  I'm not sure the same thing wouldn't happen after a longer course of abx.  Like you said, this has been a cycle over the past couple of years for the poor kid.  I'm wondering if he is growing something that the abx knocks down, but doesn't kill, and once he's off of them it blooms again.  I can't remember if he's had a bronch in the past 2 years??</P>
<P> </P>
<P>Also, is he on a maint. dose of Zithro?  Inflammation could be an issue.  I would think that the exercise would be helping with that, but maybe not enough.  I know I've mentioned allergies before too.  Jordan has a lot of junk because of that.  Whatever is going on, I hope you can figure it out.  I know you're both really tired of this.</P>
<P> </P>
<P>Stacey</P>
 
J

JORDYSMOM

New member
So discouraged!

<P>Ugh! I hate this for him. I'm not sure the same thing wouldn't happen after a longer course of abx. Like you said, this has been a cycle over the past couple of years for the poor kid. I'm wondering if he is growing something that the abx knocks down, but doesn't kill, and once he's off of them it blooms again. I can't remember if he's had a bronch in the past 2 years??</P>
<P></P>
<P>Also, is he on a maint. dose of Zithro? Inflammation could be an issue. I would think that the exercise would be helping with that, but maybe not enough. I know I've mentioned allergies before too. Jordan has a lot of junk because of that. Whatever is going on, I hope you can figure it out. I know you're both really tired of this.</P>
<P></P>
<P>Stacey</P>
 
J

JORDYSMOM

New member
So discouraged!

<P><BR>Ugh! I hate this for him. I'm not sure the same thing wouldn't happen after a longer course of abx. Like you said, this has been a cycle over the past couple of years for the poor kid. I'm wondering if he is growing something that the abx knocks down, but doesn't kill, and once he's off of them it blooms again. I can't remember if he's had a bronch in the past 2 years??</P>
<P></P>
<P>Also, is he on a maint. dose of Zithro? Inflammation could be an issue. I would think that the exercise would be helping with that, but maybe not enough. I know I've mentioned allergies before too. Jordan has a lot of junk because of that. Whatever is going on, I hope you can figure it out. I know you're both really tired of this.</P>
<P></P>
<P>Stacey</P>
 
C

cf4life

New member
So discouraged!

Unfortunately feeling 'junky' can be a baseline. I know as I have gotten older I am more 'junky' then I used to be in between exacerbations. I think it is just the nature of the disease and the antibiotics not working as well as they used to. Is he able to clear himself out pretty good during his treatments? I'd have him give HTS another shot. It takes a bit to get used to. I am not sure how much of a try he has given it in the past. Its going to make him cough like crazy especially the first week, but I would not give up this soon. It is really a great treatment and worth trying to get through the uncomfortable and tiring treatments. I guess if he has a risk of bad bleeds maybe some caution is warranted but I think the HTS can add good hydration in the lungs which in the long term could help reduce this.
 
C

cf4life

New member
So discouraged!

Unfortunately feeling 'junky' can be a baseline. I know as I have gotten older I am more 'junky' then I used to be in between exacerbations. I think it is just the nature of the disease and the antibiotics not working as well as they used to. Is he able to clear himself out pretty good during his treatments? I'd have him give HTS another shot. It takes a bit to get used to. I am not sure how much of a try he has given it in the past. Its going to make him cough like crazy especially the first week, but I would not give up this soon. It is really a great treatment and worth trying to get through the uncomfortable and tiring treatments. I guess if he has a risk of bad bleeds maybe some caution is warranted but I think the HTS can add good hydration in the lungs which in the long term could help reduce this.
 
C

cf4life

New member
So discouraged!

Unfortunately feeling 'junky' can be a baseline. I know as I have gotten older I am more 'junky' then I used to be in between exacerbations. I think it is just the nature of the disease and the antibiotics not working as well as they used to. Is he able to clear himself out pretty good during his treatments? I'd have him give HTS another shot. It takes a bit to get used to. I am not sure how much of a try he has given it in the past. Its going to make him cough like crazy especially the first week, but I would not give up this soon. It is really a great treatment and worth trying to get through the uncomfortable and tiring treatments. I guess if he has a risk of bad bleeds maybe some caution is warranted but I think the HTS can add good hydration in the lungs which in the long term could help reduce this.
 
J

Jane

Digital opinion leader
So discouraged!

<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i> Unfortunately feeling 'junky' can be a baseline... </P>
<P> ...I guess if he has a risk of bad bleeds maybe some caution is warranted but I think the HTS can add good hydration in the lungs which in the long term could help reduce this.</end quote></div> </P>
<P> </P>
<P>Yes, he sees that he coughs more now than he used to, but the frustrating thing is, last week he felt GREAT with no coughing.</P>
<P> </P>
<P>HTS makes him cough so hard, they recommended against it because of the bleeds he's had.  However, you make a good point about the benefit of hydration.  Mayeb he can try a weaker strength instead of the full 7%.</P>
 
J

Jane

Digital opinion leader
So discouraged!

<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i> Unfortunately feeling 'junky' can be a baseline...</P>
<P>...I guess if he has a risk of bad bleeds maybe some caution is warranted but I think the HTS can add good hydration in the lungs which in the long term could help reduce this.</end quote> </P>
<P></P>
<P>Yes, he sees that he coughs more now than he used to, but the frustrating thing is, last week he felt GREAT with no coughing.</P>
<P></P>
<P>HTS makes him cough so hard, they recommended against it because of the bleeds he's had. However, you make a good point about the benefit of hydration. Mayeb he can try a weaker strength instead of the full 7%.</P>
 
J

Jane

Digital opinion leader
So discouraged!

<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cf4life</b></i> Unfortunately feeling 'junky' can be a baseline...</P>
<P>...I guess if he has a risk of bad bleeds maybe some caution is warranted but I think the HTS can add good hydration in the lungs which in the long term could help reduce this.</end quote> </P>
<P></P>
<P>Yes, he sees that he coughs more now than he used to, but the frustrating thing is, last week he felt GREAT with no coughing.</P>
<P></P>
<P>HTS makes him cough so hard, they recommended against it because of the bleeds he's had. However, you make a good point about the benefit of hydration. Mayeb he can try a weaker strength instead of the full 7%.</P>
 
C

cf4life

New member
So discouraged!

He could give 3% a shot for a bit and then try the 7%. Also thinking he could have tapered off the prednisone too quickly. There is currently a good thread on cf2chat about this.
 
C

cf4life

New member
So discouraged!

He could give 3% a shot for a bit and then try the 7%. Also thinking he could have tapered off the prednisone too quickly. There is currently a good thread on cf2chat about this.
 
C

cf4life

New member
So discouraged!

He could give 3% a shot for a bit and then try the 7%. Also thinking he could have tapered off the prednisone too quickly. There is currently a good thread on cf2chat about this.
 
T

theLostMiler

New member
So discouraged!

yea i would suggest hts. has he tried old school mucomyst?
he used to grow an NTM right? could it be in there and not showing up on cultures?

I hate reading this because its discouraging and scary. I hope you find an answer or a suggestion that is the solution!
 
T

theLostMiler

New member
So discouraged!

yea i would suggest hts. has he tried old school mucomyst?
he used to grow an NTM right? could it be in there and not showing up on cultures?

I hate reading this because its discouraging and scary. I hope you find an answer or a suggestion that is the solution!
 
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