PFT'S Dropping.

S

sunflower

New member
<P>Three years ago I was 80% but the last two years my PFTs are falling around the 76% mark and never went back up. When I get sick they fall to 64-67%  but the last month just when I have finished my IVs I was 74% but now I have dropped to 59% and very shocked and thats what I was told at clinic today and I need to start IV's. </P>
<P>The point is I don't feel sick just a cough and I am wondering why my PFTS are so low. Will they go back up?  </P>
<P>My doctor told me I cultured Raltisoni Picci ( not sure of spelling) but should I start IV's.</P>
<P> I was on three days Coritzone IV's and antifungal for six weeks four weeks ago and I did feel the cough started from there. </P>
<P> </P>
<P>Any advice welcome.</P>
<P> </P>
<P>Sunflower</P>
<P>____________</P>
<P>Asthma/Bronchi</P>
<P>41yrs old</P>
<P>ABPA </P>
<P>Psuedomonas Restitant</P>
 
S

sunflower

New member
<P>Three years ago I was 80% but the last two years my PFTs are falling around the 76% mark and never went back up. When I get sick they fall to 64-67% but the last month just when I have finished myIVs I was 74% but now I have dropped to 59% and very shocked andthats what I was told at clinic today and I need to start IV's. </P>
<P>The point is I don't feel sick just a cough and I am wondering why my PFTS areso low. Will they go back up? </P>
<P>My doctor told me I cultured Raltisoni Picci ( not sure of spelling) but should I start IV's.</P>
<P>I was on three days Coritzone IV's and antifungal for six weeks four weeks ago and I did feel the cough started from there. </P>
<P></P>
<P>Any advice welcome.</P>
<P></P>
<P>Sunflower</P>
<P>____________</P>
<P>Asthma/Bronchi</P>
<P>41yrs old</P>
<P>ABPA </P>
<P>Psuedomonas Restitant</P>
 
S

sunflower

New member
<P><BR>Three years ago I was 80% but the last two years my PFTs are falling around the 76% mark and never went back up. When I get sick they fall to 64-67% but the last month just when I have finished myIVs I was 74% but now I have dropped to 59% and very shocked andthats what I was told at clinic today and I need to start IV's. </P>
<P>The point is I don't feel sick just a cough and I am wondering why my PFTS areso low. Will they go back up? </P>
<P>My doctor told me I cultured Raltisoni Picci ( not sure of spelling) but should I start IV's.</P>
<P>I was on three days Coritzone IV's and antifungal for six weeks four weeks ago and I did feel the cough started from there. </P>
<P></P>
<P>Any advice welcome.</P>
<P></P>
<P>Sunflower</P>
<P>____________</P>
<P>Asthma/Bronchi</P>
<P>41yrs old</P>
<P>ABPA </P>
<P>Psuedomonas Restitant</P>
 
S

sunflower

New member
Anyone have any thoughts or experiences on this subject. FEV1'S down and your well and your Dr. wants you to do IV's. Would you?
 
S

sunflower

New member
Anyone have any thoughts or experienceson this subject. FEV1'S down and your well and your Dr. wants you to do IV's. Would you?
 
S

sunflower

New member
<BR>Anyone have any thoughts or experienceson this subject. FEV1'S down and your well and your Dr. wants you to do IV's. Would you?
 
S

serendipity730

New member
PFT'S Dropping

<P>Hi there,</P>
<P> </P>
<P>I recently had a somewhat similar situation. Pre-2008, my pft's were in the high 70's, low 80's. Then, I started getting sick A LOT, and my pft's seemed like they were in some sort of freefall. It seemed like my new "baseline" would be around 65. My doctor did lots of testing to see if we could get to the route of the problem. I'm quite sure we ever did. Allergies seem to have been part of the problem, and I also cultured mycobacterium abcessus one a bronchoscopy (only scant growth). So, those factors may have contributed. </P>
<P> </P>
<P>Anyway, my last FEV1 was 76, so something worked. I would definitely try to find out more about the other bug you grew (what is used to treat it, etc). I also see that you have ABPA. If you haven't had an IgE level done lately, you should def. ask your doctor to repeat it. If that isn't under control, that can definitely contribute to deceased lung function. </P>
<P> </P>
<P>In my experience, IV's (and/or steriods, as awful as they are) are the best way to bring up your numbers. But, it sounds like your doctor should give you more information.</P>
<P> </P>
<P>Best of luck!</P>
 
S

serendipity730

New member
PFT'S Dropping

<P>Hi there,</P>
<P></P>
<P>I recently had a somewhat similar situation. Pre-2008, my pft's were in the high 70's, low 80's. Then, I started getting sick A LOT, and my pft's seemed like they were in some sort of freefall. It seemed like my new "baseline" would be around 65. My doctor didlots of testing to see if we could get to the route of the problem. I'm quite sure we ever did. Allergies seem to have been part of the problem, and I also cultured mycobacterium abcessus one a bronchoscopy (only scant growth). So, those factors may have contributed. </P>
<P></P>
<P>Anyway, my last FEV1 was 76, so something worked. I would definitely try to find out more about the other bug you grew (what is used to treat it, etc). I also see that you have ABPA. If you haven't had an IgE level done lately, you should def. ask your doctor to repeat it. If that isn't under control, that can definitely contribute to deceased lung function. </P>
<P></P>
<P>In my experience, IV's (and/or steriods, as awful as they are) are the best way to bring up your numbers. But, it sounds like your doctor should give you more information.</P>
<P></P>
<P>Best of luck!</P>
 
S

serendipity730

New member
PFT'S Dropping

<P>Hi there,</P>
<P></P>
<P>I recently had a somewhat similar situation. Pre-2008, my pft's were in the high 70's, low 80's. Then, I started getting sick A LOT, and my pft's seemed like they were in some sort of freefall. It seemed like my new "baseline" would be around 65. My doctor didlots of testing to see if we could get to the route of the problem. I'm quite sure we ever did. Allergies seem to have been part of the problem, and I also cultured mycobacterium abcessus one a bronchoscopy (only scant growth). So, those factors may have contributed. </P>
<P></P>
<P>Anyway, my last FEV1 was 76, so something worked. I would definitely try to find out more about the other bug you grew (what is used to treat it, etc). I also see that you have ABPA. If you haven't had an IgE level done lately, you should def. ask your doctor to repeat it. If that isn't under control, that can definitely contribute to deceased lung function. </P>
<P></P>
<P>In my experience, IV's (and/or steriods, as awful as they are) are the best way to bring up your numbers. But, it sounds like your doctor should give you more information.</P>
<P></P>
<P>Best of luck!<BR></P>
 
J

JT

New member
I hear you, Sunflower. Pretty much same story for me 12+ years ago. I resisted IV's as I watched my PFT's go from 80's to 70's to 60's to 50's. I felt I didn't have enough symptoms to warrant them. I felt fine!

I finally was willing and feel they slowed down the decline. I'm now, and have been for 10 years, around 30% on a GOOD month and if I could do it all over again would have started IV's when they first suggested them. Nothing like hindsight...

Good luck with this difficult decision.
 
J

JT

New member
I hear you, Sunflower. Pretty much same story for me 12+ years ago. I resisted IV's as I watched my PFT's go from 80's to 70's to 60's to 50's. I felt I didn't have enough symptoms to warrant them. I felt fine!

I finally was willing and feel they slowed down the decline. I'm now, and have been for 10 years, around 30% on a GOOD month and if I could do it all over again would have started IV's when they first suggested them. Nothing like hindsight...

Good luck with this difficult decision.
 
J

JT

New member
I hear you, Sunflower. Pretty much same story for me 12+ years ago. I resisted IV's as I watched my PFT's go from 80's to 70's to 60's to 50's. I felt I didn't have enough symptoms to warrant them. I felt fine!
<br />
<br />I finally was willing and feel they slowed down the decline. I'm now, and have been for 10 years, around 30% on a GOOD month and if I could do it all over again would have started IV's when they first suggested them. Nothing like hindsight...
<br />
<br />Good luck with this difficult decision.
 
S

sunflower

New member
PFT'S Dropping

<P>Serendipity: Thank you for sharing your story with me. You know about ABPA, Well I had three days Coritzone IV's and six weeks intraconzole my IGE was 1,100 but came down after two treatments and I am at 365.</P>
<P> My Dr. said I don't need the ABPA treatment and to go with IV's this week. My FEV1'S whrere on Monday 59% and today I went to another hospital through my GP to get PFTS done and I was 62% not alot but, I have made the decision to start IV's on Saturday and fingers crossed. I didn't culture anything else but, what I mention above and I can't find anything when I google it. I thought I had it save in a file along time ago because I cultured it before. I don't know what mycobacterium abcessus . Thank you for your advise. </P>
<P> </P>
<P> </P>
<P>JT</P>
<P> </P>
<P>I will definitely take on board your advise AND glad you are doing well now. I will do my IV's on Saturday and fingers crossed. THANK YOU. </P>
<P> </P>
 
S

sunflower

New member
PFT'S Dropping

<P>Serendipity: Thank you for sharing your story with me. You know about ABPA, Well I had three days Coritzone IV's and six weeks intraconzole my IGE was 1,100 but came down after two treatments and I am at 365.</P>
<P>My Dr. said I don't need the ABPA treatment and to go with IV's this week. My FEV1'S whrere on Monday 59% and today I went to another hospital through my GP to get PFTS done and I was 62% not alot but, I have made the decision to start IV's on Saturday and fingers crossed. I didn't culture anything else but, what I mention above and I can't find anything when I google it. I thought I had it save in a file along time ago because I cultured it before. I don't know what mycobacterium abcessus . Thank you for your advise. </P>
<P></P>
<P></P>
<P>JT</P>
<P></P>
<P>I will definitely take on board your advise AND glad you are doing well now. I will do my IV's on Saturday and fingers crossed. THANK YOU. </P>
<P></P>
 
S

sunflower

New member
PFT'S Dropping

<P><BR>Serendipity: Thank you for sharing your story with me. You know about ABPA, Well I had three days Coritzone IV's and six weeks intraconzole my IGE was 1,100 but came down after two treatments and I am at 365.</P>
<P>My Dr. said I don't need the ABPA treatment and to go with IV's this week. My FEV1'S whrere on Monday 59% and today I went to another hospital through my GP to get PFTS done and I was 62% not alot but, I have made the decision to start IV's on Saturday and fingers crossed. I didn't culture anything else but, what I mention above and I can't find anything when I google it. I thought I had it save in a file along time ago because I cultured it before. I don't know what mycobacterium abcessus . Thank you for your advise. </P>
<P></P>
<P></P>
<P>JT</P>
<P></P>
<P>I will definitely take on board your advise AND glad you are doing well now. I will do my IV's on Saturday and fingers crossed. THANK YOU. </P>
<P></P>
 
L

Ldude916

New member
Hi,
Two things in my experience:
First: I would ask your doctor about testing for MAC (Mycobacterium ascessus). When I had my freefall, this was my issue.

Second: EXERCISE, EXERCISE, EXERCISE! =) I am 27% FEV1 and I do the bike/treadmill 3x's a week! It saved my life while I wait for transplant.
 
L

Ldude916

New member
Hi,
Two things in my experience:
First: I would ask your doctor about testing for MAC (Mycobacterium ascessus). When I had my freefall, this was my issue.

Second: EXERCISE, EXERCISE, EXERCISE! =) I am 27% FEV1 and I do the bike/treadmill 3x's a week! It saved my life while I wait for transplant.
 
L

Ldude916

New member
Hi,
<br />Two things in my experience:
<br />First: I would ask your doctor about testing for MAC (Mycobacterium ascessus). When I had my freefall, this was my issue.
<br />
<br />Second: EXERCISE, EXERCISE, EXERCISE! =) I am 27% FEV1 and I do the bike/treadmill 3x's a week! It saved my life while I wait for transplant.
 
S

sdelorenzo

Guest
My son's pfts fell from 110 to 65 for 18 months before tests showed ABPA last Christmas. His IGE at the highest was 400 and now it is around 70. He took 6 months of intraconzole. He has done IV steroids for 3 days a months for 6 months and now does the IV steroids for two days a month. Also his pfts are now above 100 thankfully!
Maybe you need more treatments for ABPA?
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 1 both without CF
 
S

sdelorenzo

Guest
My son's pfts fell from 110 to 65 for 18 months before tests showed ABPA last Christmas. His IGE at the highest was 400 and now it is around 70. He took 6 months of intraconzole. He has done IV steroids for 3 days a months for 6 months and now does the IV steroids for two days a month. Also his pfts are now above 100 thankfully!
Maybe you need more treatments for ABPA?
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 1 both without CF
 
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