6 month visit and PFT results

[Guest guest]

We met with the pulmonologist this morning to discuss my test results.

They are a mixed bag.The amount of air that my lugs can hold has again

decreased. it has gone from 59% of where they should be to 53% of where

they should be in 6 months.

That is the bad news and if that rate continues, a lung transplant

would be necessary within 2 years.........Here is the trend report that

I received. In 5/07 my FVC was improved by 2%. In 10/07, it was

decreased by 2%. In 5/07, the FEV1 had decreased by 14%, in 10/07 it

had improved by 27%. In 5/07 The FEV25-75% decreased by 64%, in 10/07

it improved by by 1158%. In 5/07 the TLC had decreased by 24%, in 10/7,

it had decreased by 10%. In 5/07 the DLCO was improved by 3%, in 10/7

it was improved by 44%.......Both of these were done as 6 month studies

from the prior one.Hope this makes sense.

The better news is that once the air does get into my lungs, the amount

of O2 that am able to take out of he air has icreased. . The doctor is

not sure why this has happened, but he hopes that it continues.

On to Shands on November 5th or the initial transplant meeting.

Kathy

[Guest guest]

Hi Kathy, When I look at your numbers the thing that strikes me is

your DLCO. That shows how the exchange of Co2

and O2 is working in your lungs. 3 1/2 years ago when I was diagnosed

I was at 44% and last June 36%. I like some others try not to get to

much into the numbers. If you feel good. Do good and everything you

are able everyday.

This disease is so weird, you can go for months without a change then

drop quite a bit the next testing. But you just can't tell how things

are going to go for sure. God knows.

I am hoping things go smoothly for you at Shands. Let me know if you

want to stop at exit 354 at the Burger King and say Hi. You may be

pretty tired though. I do understand that.

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "

We met with the pulmonologist this morning to discuss my test results.

They are a mixed bag.The amount of air that my lugs can hold has again

decreased. it has gone from 59% of where they should be to 53% of where

they should be in 6 months.

That is the bad news and if that rate continues, a lung transplant

would be necessary within 2 years.........Here is the trend report that

I received. In 5/07 my FVC was improved by 2%. In 10/07, it was

decreased by 2%. In 5/07, the FEV1 had decreased by 14%, in 10/07 it

had improved by 27%. In 5/07 The FEV25-75% decreased by 64%, in 10/07

it improved by by 1158%. In 5/07 the TLC had decreased by 24%, in 10/7,

it had decreased by 10%. In 5/07 the DLCO was improved by 3%, in 10/7

it was improved by 44%.......Both of these were done as 6 month studies

from the prior one.Hope this makes sense.

The better news is that once the air does get into my lungs, the amount

of O2 that am able to take out of he air has icreased. . The doctor is

not sure why this has happened, but he hopes that it continues.

On to Shands on November 5th or the initial transplant meeting.

Kathy

[Guest guest]

>

> We met with the pulmonologist this morning to discuss my test

results.

> They are a mixed bag.The amount of air that my lugs can hold has

again

> decreased. it has gone from 59% of where they should be to 53% of

where

> they should be in 6 months.

>

> That is the bad news and if that rate continues, a lung transplant

> would be necessary within 2 years.........Here is the trend report

that

> I received. In 5/07 my FVC was improved by 2%. In 10/07, it was

> decreased by 2%. In 5/07, the FEV1 had decreased by 14%, in 10/07 it

> had improved by 27%. In 5/07 The FEV25-75% decreased by 64%, in

10/07

> it improved by by 1158%. In 5/07 the TLC had decreased by 24%, in

10/7,

> it had decreased by 10%. In 5/07 the DLCO was improved by 3%, in

10/7

> it was improved by 44%.......Both of these were done as 6 month

studies

> from the prior one.Hope this makes sense.

>

> The better news is that once the air does get into my lungs, the

amount

> of O2 that am able to take out of he air has icreased. . The doctor

is

> not sure why this has happened, but he hopes that it continues.

>

> On to Shands on November 5th or the initial transplant meeting.

>

> Kathy

>

[Guest guest]

>

> We met with the pulmonologist this morning to discuss my test

results.

> They are a mixed bag.The amount of air that my lugs can hold has

again

> decreased. it has gone from 59% of where they should be to 53% of

where

> they should be in 6 months.

>

> That is the bad news and if that rate continues, a lung transplant

> would be necessary within 2 years.........Here is the trend report

that

> I received. In 5/07 my FVC was improved by 2%. In 10/07, it was

> decreased by 2%. In 5/07, the FEV1 had decreased by 14%, in 10/07 it

> had improved by 27%. In 5/07 The FEV25-75% decreased by 64%, in

10/07

> it improved by by 1158%. In 5/07 the TLC had decreased by 24%, in

10/7,

> it had decreased by 10%. In 5/07 the DLCO was improved by 3%, in

10/7

> it was improved by 44%.......Both of these were done as 6 month

studies

> from the prior one.Hope this makes sense.

>

> The better news is that once the air does get into my lungs, the

amount

> of O2 that am able to take out of he air has icreased. . The doctor

is

> not sure why this has happened, but he hopes that it continues.

>

> On to Shands on November 5th or the initial transplant meeting.

>

> Kathy

>

[Guest guest]

>

> We met with the pulmonologist this morning to discuss my test

results.

> They are a mixed bag.The amount of air that my lugs can hold has

again

> decreased. it has gone from 59% of where they should be to 53% of

where

> they should be in 6 months.

>

> That is the bad news and if that rate continues, a lung transplant

> would be necessary within 2 years.........Here is the trend report

that

> I received. In 5/07 my FVC was improved by 2%. In 10/07, it was

> decreased by 2%. In 5/07, the FEV1 had decreased by 14%, in 10/07 it

> had improved by 27%. In 5/07 The FEV25-75% decreased by 64%, in

10/07

> it improved by by 1158%. In 5/07 the TLC had decreased by 24%, in

10/7,

> it had decreased by 10%. In 5/07 the DLCO was improved by 3%, in

10/7

> it was improved by 44%.......Both of these were done as 6 month

studies

> from the prior one.Hope this makes sense.

>

> The better news is that once the air does get into my lungs, the

amount

> of O2 that am able to take out of he air has icreased. . The doctor

is

> not sure why this has happened, but he hopes that it continues.

>

> On to Shands on November 5th or the initial transplant meeting.

>

> Kathy

>

[Guest guest]

Well Kathy, the first visit I had with Dr Akindapi was pretty quick.

He answered questions and then just said he would not even consider

me for Tx because of my weight. I was so mad because I was thin

before THEY put me on prednisone..Oh thats another story. I was to

come back in 3 months and I had lost about 35 pounds or so and still

needed to loose 30 more. well I just sabotaged myself. I started

eating like a crazy person. I think the decision making was just to

much at the time. SO now I am quite fluffy and I still could not say

for sure I want to go through Tx,

I wouldn't worry about the first visit. It is a Hello glad to meet

you and some information. Have your questions written down and have

someone with you to take notes. I know you'll like Shands.

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "

>

> We met with the pulmonologist this morning to discuss my test

results.

> They are a mixed bag.The amount of air that my lugs can hold has

again

> decreased. it has gone from 59% of where they should be to 53% of

where

> they should be in 6 months.

>

> That is the bad news and if that rate continues, a lung transplant

> would be necessary within 2 years.........Here is the trend report

that

> I received. In 5/07 my FVC was improved by 2%. In 10/07, it was

> decreased by 2%. In 5/07, the FEV1 had decreased by 14%, in 10/07 it

> had improved by 27%. In 5/07 The FEV25-75% decreased by 64%, in

10/07

> it improved by by 1158%. In 5/07 the TLC had decreased by 24%, in

10/7,

> it had decreased by 10%. In 5/07 the DLCO was improved by 3%, in

10/7

> it was improved by 44%.......Both of these were done as 6 month

studies

> from the prior one.Hope this makes sense.

>

> The better news is that once the air does get into my lungs, the

amount

> of O2 that am able to take out of he air has icreased. . The doctor

is

> not sure why this has happened, but he hopes that it continues.

>

> On to Shands on November 5th or the initial transplant meeting.

>

> Kathy

>

[Guest guest]

Well Kathy, the first visit I had with Dr Akindapi was pretty quick.

He answered questions and then just said he would not even consider

me for Tx because of my weight. I was so mad because I was thin

before THEY put me on prednisone..Oh thats another story. I was to

come back in 3 months and I had lost about 35 pounds or so and still

needed to loose 30 more. well I just sabotaged myself. I started

eating like a crazy person. I think the decision making was just to

much at the time. SO now I am quite fluffy and I still could not say

for sure I want to go through Tx,

I wouldn't worry about the first visit. It is a Hello glad to meet

you and some information. Have your questions written down and have

someone with you to take notes. I know you'll like Shands.

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "

>

> We met with the pulmonologist this morning to discuss my test

results.

> They are a mixed bag.The amount of air that my lugs can hold has

again

> decreased. it has gone from 59% of where they should be to 53% of

where

> they should be in 6 months.

>

> That is the bad news and if that rate continues, a lung transplant

> would be necessary within 2 years.........Here is the trend report

that

> I received. In 5/07 my FVC was improved by 2%. In 10/07, it was

> decreased by 2%. In 5/07, the FEV1 had decreased by 14%, in 10/07 it

> had improved by 27%. In 5/07 The FEV25-75% decreased by 64%, in

10/07

> it improved by by 1158%. In 5/07 the TLC had decreased by 24%, in

10/7,

> it had decreased by 10%. In 5/07 the DLCO was improved by 3%, in

10/7

> it was improved by 44%.......Both of these were done as 6 month

studies

> from the prior one.Hope this makes sense.

>

> The better news is that once the air does get into my lungs, the

amount

> of O2 that am able to take out of he air has icreased. . The doctor

is

> not sure why this has happened, but he hopes that it continues.

>

> On to Shands on November 5th or the initial transplant meeting.

>

> Kathy

>

[Guest guest]

Well Kathy, the first visit I had with Dr Akindapi was pretty quick.

He answered questions and then just said he would not even consider

me for Tx because of my weight. I was so mad because I was thin

before THEY put me on prednisone..Oh thats another story. I was to

come back in 3 months and I had lost about 35 pounds or so and still

needed to loose 30 more. well I just sabotaged myself. I started

eating like a crazy person. I think the decision making was just to

much at the time. SO now I am quite fluffy and I still could not say

for sure I want to go through Tx,

I wouldn't worry about the first visit. It is a Hello glad to meet

you and some information. Have your questions written down and have

someone with you to take notes. I know you'll like Shands.

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "

>

> We met with the pulmonologist this morning to discuss my test

results.

> They are a mixed bag.The amount of air that my lugs can hold has

again

> decreased. it has gone from 59% of where they should be to 53% of

where

> they should be in 6 months.

>

> That is the bad news and if that rate continues, a lung transplant

> would be necessary within 2 years.........Here is the trend report

that

> I received. In 5/07 my FVC was improved by 2%. In 10/07, it was

> decreased by 2%. In 5/07, the FEV1 had decreased by 14%, in 10/07 it

> had improved by 27%. In 5/07 The FEV25-75% decreased by 64%, in

10/07

> it improved by by 1158%. In 5/07 the TLC had decreased by 24%, in

10/7,

> it had decreased by 10%. In 5/07 the DLCO was improved by 3%, in

10/7

> it was improved by 44%.......Both of these were done as 6 month

studies

> from the prior one.Hope this makes sense.

>

> The better news is that once the air does get into my lungs, the

amount

> of O2 that am able to take out of he air has icreased. . The doctor

is

> not sure why this has happened, but he hopes that it continues.

>

> On to Shands on November 5th or the initial transplant meeting.

>

> Kathy

>