Whats the lowest PFT and Highest you got it back up to?

Jem

New member
<b>What the lowest your pft's have been?</b>

41%

<b>How high did you get it back up to?</b>

48%

<b>How did you do it?</b>

With being consistent doing my vest treatments and adding 7%HS to my regime. I believe HS has been a huge benefit to me with helping to clear out my lung. I am not much of a mucus producer unless I am sick and doing the HS combined with the vest helps me to bring up stuff I otherwise would not be able to.

<b>How long did or has it stayed up?</b>

It took 14 months. It has been at 48% for the last 6 months. I hope it even goes higher especially now since I am using the eflow and have begun Tobramycin one month on, one month off. This is a new neb for me.


As far as hemoptysis...I understand your fear. I lost a lung to chronic severe hemoptysis, 1/2 when I was 19 and the rest of my left lung at 40. Since the removal of the rest of my left lung I have had several very minor bleeds...2 tsps or less several times a year in the last 4 years. The first time I took HS (March of 2006) is was 3% and I coughed up foamy blood after half my treatment. I was scared and stopped but the next day I began again because I had heard so many good things about HS. I did fine and moved up to 7% one month later.

Sometimes during the first 6 months of using HS I would get a little streaking but it never turned into an active bleed. The last active bleed I had was last September...2 teaspoons after finishing lunch out with friends. I felt fine but started an oral antibiotic at my doctor's request.

I never really understood what FEV meant or questioned my doctor about trying different meds. My lung function declined ever so slowly from 48% down to 41% over a 6 1/2 year period since my last surgery. It was when I became proactive because of the knowledge that I learned on this forum that I was able to bring my FEV 1 back up to 48%. I am very thankful to have cysticfibrosis.com at my fingertips. It provides a place where we can share and learn from each other.<img src="i/expressions/face-icon-small-smile.gif" border="0">

<b>Present meds and treatments:</b>
albuteral (twice a day)
Pulmozyme (once a day)
7% HS (twice a day)
Tobramycin (twice a day every other month)
Advair 100/50 (twice a day)
Respirtech vest 30 minutes twice a day
treadmill 35 minutes every other day

Good luck to you with preparing your body for pregnancy. BTW I had my three children after I had 1/2 of a lung removed. I did have a major bleed with my first pregnancy at 6 weeks. What a scare that was! But nothing after that or during the other two pregnancies.

Living in the present moment is what keeps me from worrying about tomorrow and I have a very strong faith life which keeps me centered. I hope you find what works for you.

I can see how much you want to be a mom and that you are trying to do all you can by gathering information. That's a great first step. I wish you well. Please keep up udated with how things are going.
 

Jem

New member
<b>What the lowest your pft's have been?</b>

41%

<b>How high did you get it back up to?</b>

48%

<b>How did you do it?</b>

With being consistent doing my vest treatments and adding 7%HS to my regime. I believe HS has been a huge benefit to me with helping to clear out my lung. I am not much of a mucus producer unless I am sick and doing the HS combined with the vest helps me to bring up stuff I otherwise would not be able to.

<b>How long did or has it stayed up?</b>

It took 14 months. It has been at 48% for the last 6 months. I hope it even goes higher especially now since I am using the eflow and have begun Tobramycin one month on, one month off. This is a new neb for me.


As far as hemoptysis...I understand your fear. I lost a lung to chronic severe hemoptysis, 1/2 when I was 19 and the rest of my left lung at 40. Since the removal of the rest of my left lung I have had several very minor bleeds...2 tsps or less several times a year in the last 4 years. The first time I took HS (March of 2006) is was 3% and I coughed up foamy blood after half my treatment. I was scared and stopped but the next day I began again because I had heard so many good things about HS. I did fine and moved up to 7% one month later.

Sometimes during the first 6 months of using HS I would get a little streaking but it never turned into an active bleed. The last active bleed I had was last September...2 teaspoons after finishing lunch out with friends. I felt fine but started an oral antibiotic at my doctor's request.

I never really understood what FEV meant or questioned my doctor about trying different meds. My lung function declined ever so slowly from 48% down to 41% over a 6 1/2 year period since my last surgery. It was when I became proactive because of the knowledge that I learned on this forum that I was able to bring my FEV 1 back up to 48%. I am very thankful to have cysticfibrosis.com at my fingertips. It provides a place where we can share and learn from each other.<img src="i/expressions/face-icon-small-smile.gif" border="0">

<b>Present meds and treatments:</b>
albuteral (twice a day)
Pulmozyme (once a day)
7% HS (twice a day)
Tobramycin (twice a day every other month)
Advair 100/50 (twice a day)
Respirtech vest 30 minutes twice a day
treadmill 35 minutes every other day

Good luck to you with preparing your body for pregnancy. BTW I had my three children after I had 1/2 of a lung removed. I did have a major bleed with my first pregnancy at 6 weeks. What a scare that was! But nothing after that or during the other two pregnancies.

Living in the present moment is what keeps me from worrying about tomorrow and I have a very strong faith life which keeps me centered. I hope you find what works for you.

I can see how much you want to be a mom and that you are trying to do all you can by gathering information. That's a great first step. I wish you well. Please keep up udated with how things are going.
 

CyndiW555

New member
Jem Did your pfts go up during pregnancy? Mine did, they don't know why.

Here is my history I pulled the info out of my file. It starts in 1991 and I was about 26. I have not started being compliant untill about a year ago. Also with these numbers - I didn't go to the dr much unless I was sick. Now I go every few months I am trying to find out a base line.
FEV1-
03/91 42%
03/92 41%
02/93 49%
1994 was 44% I went 2 times that year
5/30/95 53% Had baby next day my weight was up maybe that is why I had different #'s
6/95 46%
3/96 38% in 96 pfts were 29% to the low 30's
2/97 37%
3/98 32%
4/99 32%
2/00 40%
2/01 28% Hated dr. only went twice that year
4/02 34% " " " " " " "
3/03 39%
11/03 37%

So I went to a new dr somtime in 04 I do not have any info untill now at my yearly exam 6/07 it was 39%.

I wish the Dr. talked to me in 91 about what CF was and how I could get my pft's up. but I found out when I was 24 and didn't see a cf dr until 26. He did not really know how to talk to me. I was really freeking out back then. but you think they could have explained things to me better throughout the years... I thank God for this web site.

I just read stuff here and now I know what I can try so I can get my pfts up. I don't know what kind of damage I have but I always have hope. Good luck to you!! (and to all of us)
 

CyndiW555

New member
Jem Did your pfts go up during pregnancy? Mine did, they don't know why.

Here is my history I pulled the info out of my file. It starts in 1991 and I was about 26. I have not started being compliant untill about a year ago. Also with these numbers - I didn't go to the dr much unless I was sick. Now I go every few months I am trying to find out a base line.
FEV1-
03/91 42%
03/92 41%
02/93 49%
1994 was 44% I went 2 times that year
5/30/95 53% Had baby next day my weight was up maybe that is why I had different #'s
6/95 46%
3/96 38% in 96 pfts were 29% to the low 30's
2/97 37%
3/98 32%
4/99 32%
2/00 40%
2/01 28% Hated dr. only went twice that year
4/02 34% " " " " " " "
3/03 39%
11/03 37%

So I went to a new dr somtime in 04 I do not have any info untill now at my yearly exam 6/07 it was 39%.

I wish the Dr. talked to me in 91 about what CF was and how I could get my pft's up. but I found out when I was 24 and didn't see a cf dr until 26. He did not really know how to talk to me. I was really freeking out back then. but you think they could have explained things to me better throughout the years... I thank God for this web site.

I just read stuff here and now I know what I can try so I can get my pfts up. I don't know what kind of damage I have but I always have hope. Good luck to you!! (and to all of us)
 

CyndiW555

New member
Jem Did your pfts go up during pregnancy? Mine did, they don't know why.

Here is my history I pulled the info out of my file. It starts in 1991 and I was about 26. I have not started being compliant untill about a year ago. Also with these numbers - I didn't go to the dr much unless I was sick. Now I go every few months I am trying to find out a base line.
FEV1-
03/91 42%
03/92 41%
02/93 49%
1994 was 44% I went 2 times that year
5/30/95 53% Had baby next day my weight was up maybe that is why I had different #'s
6/95 46%
3/96 38% in 96 pfts were 29% to the low 30's
2/97 37%
3/98 32%
4/99 32%
2/00 40%
2/01 28% Hated dr. only went twice that year
4/02 34% " " " " " " "
3/03 39%
11/03 37%

So I went to a new dr somtime in 04 I do not have any info untill now at my yearly exam 6/07 it was 39%.

I wish the Dr. talked to me in 91 about what CF was and how I could get my pft's up. but I found out when I was 24 and didn't see a cf dr until 26. He did not really know how to talk to me. I was really freeking out back then. but you think they could have explained things to me better throughout the years... I thank God for this web site.

I just read stuff here and now I know what I can try so I can get my pfts up. I don't know what kind of damage I have but I always have hope. Good luck to you!! (and to all of us)
 

CyndiW555

New member
Jem Did your pfts go up during pregnancy? Mine did, they don't know why.

Here is my history I pulled the info out of my file. It starts in 1991 and I was about 26. I have not started being compliant untill about a year ago. Also with these numbers - I didn't go to the dr much unless I was sick. Now I go every few months I am trying to find out a base line.
FEV1-
03/91 42%
03/92 41%
02/93 49%
1994 was 44% I went 2 times that year
5/30/95 53% Had baby next day my weight was up maybe that is why I had different #'s
6/95 46%
3/96 38% in 96 pfts were 29% to the low 30's
2/97 37%
3/98 32%
4/99 32%
2/00 40%
2/01 28% Hated dr. only went twice that year
4/02 34% " " " " " " "
3/03 39%
11/03 37%

So I went to a new dr somtime in 04 I do not have any info untill now at my yearly exam 6/07 it was 39%.

I wish the Dr. talked to me in 91 about what CF was and how I could get my pft's up. but I found out when I was 24 and didn't see a cf dr until 26. He did not really know how to talk to me. I was really freeking out back then. but you think they could have explained things to me better throughout the years... I thank God for this web site.

I just read stuff here and now I know what I can try so I can get my pfts up. I don't know what kind of damage I have but I always have hope. Good luck to you!! (and to all of us)
 

CyndiW555

New member
Jem Did your pfts go up during pregnancy? Mine did, they don't know why.

Here is my history I pulled the info out of my file. It starts in 1991 and I was about 26. I have not started being compliant untill about a year ago. Also with these numbers - I didn't go to the dr much unless I was sick. Now I go every few months I am trying to find out a base line.
FEV1-
03/91 42%
03/92 41%
02/93 49%
1994 was 44% I went 2 times that year
5/30/95 53% Had baby next day my weight was up maybe that is why I had different #'s
6/95 46%
3/96 38% in 96 pfts were 29% to the low 30's
2/97 37%
3/98 32%
4/99 32%
2/00 40%
2/01 28% Hated dr. only went twice that year
4/02 34% " " " " " " "
3/03 39%
11/03 37%

So I went to a new dr somtime in 04 I do not have any info untill now at my yearly exam 6/07 it was 39%.

I wish the Dr. talked to me in 91 about what CF was and how I could get my pft's up. but I found out when I was 24 and didn't see a cf dr until 26. He did not really know how to talk to me. I was really freeking out back then. but you think they could have explained things to me better throughout the years... I thank God for this web site.

I just read stuff here and now I know what I can try so I can get my pfts up. I don't know what kind of damage I have but I always have hope. Good luck to you!! (and to all of us)
 

CyndiW555

New member
Jem Did your pfts go up during pregnancy? Mine did, they don't know why.

Here is my history I pulled the info out of my file. It starts in 1991 and I was about 26. I have not started being compliant untill about a year ago. Also with these numbers - I didn't go to the dr much unless I was sick. Now I go every few months I am trying to find out a base line.
FEV1-
03/91 42%
03/92 41%
02/93 49%
1994 was 44% I went 2 times that year
5/30/95 53% Had baby next day my weight was up maybe that is why I had different #'s
6/95 46%
3/96 38% in 96 pfts were 29% to the low 30's
2/97 37%
3/98 32%
4/99 32%
2/00 40%
2/01 28% Hated dr. only went twice that year
4/02 34% " " " " " " "
3/03 39%
11/03 37%

So I went to a new dr somtime in 04 I do not have any info untill now at my yearly exam 6/07 it was 39%.

I wish the Dr. talked to me in 91 about what CF was and how I could get my pft's up. but I found out when I was 24 and didn't see a cf dr until 26. He did not really know how to talk to me. I was really freeking out back then. but you think they could have explained things to me better throughout the years... I thank God for this web site.

I just read stuff here and now I know what I can try so I can get my pfts up. I don't know what kind of damage I have but I always have hope. Good luck to you!! (and to all of us)
 

Jem

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CyndiW555</b></i>

Jem Did your pfts go up during pregnancy? Mine did, they don't know why.
</end quote></div>

I got pregnant for the first time 22 years ago, back in 1985. I did not pay attention to things like PFT's as I was not educated to. I just went by how I felt. If I felt fine and my doctor was pleased with how things were going then that was that. I did start educating myself more when I had the rest of my lung removed in 1999 but my knowledge and proactive care really accelorated with finding this forum. It has been a great blessing especially where my health is concerned. I am sure you will find it one too Cyndi.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep us posted.
 

Jem

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CyndiW555</b></i>

Jem Did your pfts go up during pregnancy? Mine did, they don't know why.
</end quote></div>

I got pregnant for the first time 22 years ago, back in 1985. I did not pay attention to things like PFT's as I was not educated to. I just went by how I felt. If I felt fine and my doctor was pleased with how things were going then that was that. I did start educating myself more when I had the rest of my lung removed in 1999 but my knowledge and proactive care really accelorated with finding this forum. It has been a great blessing especially where my health is concerned. I am sure you will find it one too Cyndi.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep us posted.
 

Jem

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CyndiW555</b></i>

Jem Did your pfts go up during pregnancy? Mine did, they don't know why.
</end quote></div>

I got pregnant for the first time 22 years ago, back in 1985. I did not pay attention to things like PFT's as I was not educated to. I just went by how I felt. If I felt fine and my doctor was pleased with how things were going then that was that. I did start educating myself more when I had the rest of my lung removed in 1999 but my knowledge and proactive care really accelorated with finding this forum. It has been a great blessing especially where my health is concerned. I am sure you will find it one too Cyndi.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep us posted.
 

Jem

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CyndiW555</b></i>

Jem Did your pfts go up during pregnancy? Mine did, they don't know why.
</end quote></div>

I got pregnant for the first time 22 years ago, back in 1985. I did not pay attention to things like PFT's as I was not educated to. I just went by how I felt. If I felt fine and my doctor was pleased with how things were going then that was that. I did start educating myself more when I had the rest of my lung removed in 1999 but my knowledge and proactive care really accelorated with finding this forum. It has been a great blessing especially where my health is concerned. I am sure you will find it one too Cyndi.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep us posted.
 

Jem

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CyndiW555</b></i>

Jem Did your pfts go up during pregnancy? Mine did, they don't know why.
</end quote>

I got pregnant for the first time 22 years ago, back in 1985. I did not pay attention to things like PFT's as I was not educated to. I just went by how I felt. If I felt fine and my doctor was pleased with how things were going then that was that. I did start educating myself more when I had the rest of my lung removed in 1999 but my knowledge and proactive care really accelorated with finding this forum. It has been a great blessing especially where my health is concerned. I am sure you will find it one too Cyndi.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep us posted.
 

Jem

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>CyndiW555</b></i>

Jem Did your pfts go up during pregnancy? Mine did, they don't know why.
</end quote>

I got pregnant for the first time 22 years ago, back in 1985. I did not pay attention to things like PFT's as I was not educated to. I just went by how I felt. If I felt fine and my doctor was pleased with how things were going then that was that. I did start educating myself more when I had the rest of my lung removed in 1999 but my knowledge and proactive care really accelorated with finding this forum. It has been a great blessing especially where my health is concerned. I am sure you will find it one too Cyndi.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Keep us posted.
 
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