----- Original Message -----

From: Dianne Johnston

To: emphysema@yahoogroups.com

Sent: Sunday, March 16, 2008 12:07 AM

Subject: [emphysema] Past Used By Date

Hello every other sufferer of emphysema. 

I'm here to tell you that your diagnosis may or may be correct - or
not.  Your prognosis may be correct - or not. 

I was diagnosed with emphysema in 1994.  My doctor's recommendation
was 'give up smoking' and nothing more.  So I left it at that.  I
constantly had lung infections and of course painful lungs and of
course I would be treated only for a lung infection with antibiotics
and ventolin (and flixotide while it was available).

After four years and moving to another state, I got very upset while
at my doctor (due more to relationship stress than anything else) and
complained about the lack of 'emphysema' attention.  I got some
attention.  She sent me to a specialist and had a battery of tests to
find that half my lungs had disintegrated, that I only calibrated 45%
of oxygen into my blood (which of course means I have a hard time
recovering from just about anything) but that I had stronger lungs
that a 45 yearold non-smoker.  I put this down to a lot of exercise,
sport and a gift from he who gives these gifts.

I was 32 when first diagnosed.  I first saw a specialist in regard to
this when I was 36 and last saw him when he told me that we were
wasting each others time and my money and come back and see him when
I needed him.  I appreciated this and have not been back to see him
yet.  I'm 46 now and still have not given up smoking, nor my smokers
cough.  The specialist had said to me that giving up smoking will not
alter the outcome but it would make the rest of my life and demise
more comfortable.

I was a single mum for 23+ years and with this prognosis, I stopped
my studies and centred my life around raising my two boys.  It has
been a hard and often thankless task and the cause of dark
depression.  It was not the right road to take.  I probably would
have been better off continuing my education and providing better for
my children financially, and I think I would have gained a lot more
for myself as well.  Also, my children would probably have benefitted
from a more satisfied parent.

I don't have advise as to others diagnosed with this disease - just
that will not always be as you are let to expect.

Good luck to all of you who have received the Emphysema
diagnosis/prognosis.


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Hello every other sufferer of emphysema.

I'm here to tell you that your diagnosis may or may be correct - or
not.  Your prognosis may be correct - or not.

I was diagnosed with emphysema in 1994.  My doctor's recommendation
was 'give up smoking' and nothing more.  So I left it at that.  I
constantly had lung infections and of course painful lungs and of
course I would be treated only for a lung infection with antibiotics
and ventolin (and flixotide while it was available).

After four years and moving to another state, I got very upset while
at my doctor (due more to relationship stress than anything else) and
complained about the lack of 'emphysema' attention.  I got some
attention.  She sent me to a specialist and had a battery of tests to
find that half my lungs had disintegrated, that I only calibrated 45%
of oxygen into my blood (which of course means I have a hard time
recovering from just about anything) but that I had stronger lungs
that a 45 yearold non-smoker.  I put this down to a lot of exercise,
sport and a gift from he who gives these gifts.

I was 32 when first diagnosed.  I first saw a specialist in regard to
this when I was 36 and last saw him when he told me that we were
wasting each others time and my money and come back and see him when
I needed him.  I appreciated this and have not been back to see him
yet.  I'm 46 now and still have not given up smoking, nor my smokers
cough.  The specialist had said to me that giving up smoking will not
alter the outcome but it would make the rest of my life and demise
more comfortable.

I was a single mum for 23+ years and with this prognosis, I stopped
my studies and centred my life around raising my two boys.  It has
been a hard and often thankless task and the cause of dark
depression.  It was not the right road to take.  I probably would
have been better off continuing my education and providing better for
my children financially, and I think I would have gained a lot more
for myself as well.  Also, my children would probably have benefitted
from a more satisfied parent.

I don't have advise as to others diagnosed with this disease - just
that will not always be as you are let to expect.

Good luck to all of you who have received the Emphysema
diagnosis/prognosis.

http://health.groups.yahoo.com/group/copdawareness/

Hey,

 

not much activity in this group, but ocassionally people will stop in and talk.  I was diagnosed about two months ago, and am doing pretty well considering. 

 

Welcome to the group, sorry that it is under these circumstances.

 

Frank

bigdog44109 <niceguy44109@sbcglobal.net> wrote:

hi all
i am a newly diagnosed with emphysema after getting a ct scan of my
heart it showed i had cysts in both of my lungs and they have
determined that i do have emphysema along with all my other medical
problems so i am not sure what to look forward too with this illness i
do have an appointment on february 12th to get my breathing test and
then see the pulmonologist on the 19th. today while i was out walking
the dog after walking 2 blocks i became very short of breath and
starting vomiting and whn i got home and called ems they treated me
like i was some joke that my pulse ox was 99 percent and they said
looks pretty good for someone who has emphysema but had they seen me a
half hour before they would of thought differently. so i soent a few
hours in the er and by that time the emergency was over but on the
precaution they did check my heart since i have a history of heart
disease and also checked my lungs and they ruled out it had anything to
do with my heart that it was my lungs and the doc got me up and hade a
nurse walk me around a little bit and stats went form 97% down to 92%
in less than a minute so you can imagine how i would of felt after a
half an hour walking. anyway i just joined and hope to make some new
friends here take care all kirk

hi all
i am a newly diagnosed with emphysema after getting a ct scan of my
heart it showed i had cysts in both of my lungs and they have
determined that i do have emphysema along with all my other medical
problems so i am not sure what to look forward too with this illness i
do have an appointment on february 12th to get my breathing test and
then see the pulmonologist on the 19th. today while i was out walking
the dog after walking 2 blocks i became very short of breath and
starting vomiting and whn i got home and called ems they treated me
like i was some joke that my pulse ox was 99 percent and they said
looks pretty good for someone who has emphysema but had they seen me a
half hour before they would of thought differently. so i soent a few
hours in the er and by that time the emergency was over but on the
precaution they did check my heart since i have a history of heart
disease and also checked my lungs and they ruled out it had anything to
do with my heart that it was my lungs and the doc got me up and hade a
nurse walk me around a little bit and stats went form 97% down to 92%
in less than a minute so you can imagine how i would of felt after a
half an hour walking. anyway i just joined and hope to make some new
friends here take care all kirk

hi all
i am a newly diagnosed with emphysema after getting a ct scan of my
heart it showed i had  cysts in both of my lungs and they have
determined that i do have emphysema along with all my other medical
problems so i am not sure what to look forward too with this illness i
do have an appointment on february 12th to get my breathing test and
then see the pulmonologist on the 19th. today while i was out walking
the dog after walking 2 blocks i became very short of breath and
starting vomiting and whn i got home and called ems they treated me
like i was some joke that my pulse ox was 99 percent and they said
looks pretty good for someone who has emphysema but had they seen me a
half hour before they would of thought differently. so i soent a few
hours in the er and by that time the emergency was over but on the
precaution they did check my heart since i have a history of heart
disease and also checked my lungs and they ruled out it had anything to
do with my heart that it was my lungs and the doc got me up and hade a
nurse walk me around a little bit and stats went form 97% down to 92%
in less than a minute so you can imagine how i would of felt after a
half an hour walking. anyway i just joined and hope to make some new
friends here take care all kirk

Hi, I don't post often, mostly read, but I joined Efforts a few days ago.  I just found it on a search.  They sure have a lot of good messages.  I  have already learned a few things.  Thanks!   Milly    -------Original Message-------   From: Debbie Date: 10/24/07 17:31:10 To: emphysema@yahoogroups.com Subject: [emphysema] Re: New   thank you           --- In emphysema@yahoogroups.com, Janet Sivertson <jsiverts@...> wrote: > > I watch this ever so often, but hardly anyone ever comes on, so I > welcome you two....I belong to a group called EFFORTS.....find it by > going to www.efforts.com.  They are a VERY active group and you will > learn lots about your disease there, I promise.  I have been with that > group for about two years and my hubby and I say we have learned more > there than the Drs ever tell us.  Everyone is welcome to join.  Hope to > see you there:) > > Janet     ND and TX > jsiverts@... >           Yahoo! Groups Links   <*> To visit your group on the web, go to:     http://groups.yahoo.com/group/emphysema/   <*> Your email settings:     Individual Email | Traditional   <*> To change settings online go to:     http://groups.yahoo.com/group/emphysema/join     (Yahoo! ID required)   <*> To change settings via email:     mailto:emphysema-digest@yahoogroups.com     mailto:emphysema-fullfeatured@yahoogroups.com   <*> To unsubscribe from this group, send an email to:     emphysema-unsubscribe@yahoogroups.com   <*> Your use of Yahoo! Groups is subject to:     http://docs.yahoo.com/info/terms/

thank you





--- In emphysema@yahoogroups.com, Janet Sivertson <jsiverts@...> wrote:
>
> I watch this ever so often, but hardly anyone ever comes on, so I
> welcome you two....I belong to a group called EFFORTS.....find it by
> going to www.efforts.com.  They are a VERY active group and you will
> learn lots about your disease there, I promise.  I have been with
that
> group for about two years and my hubby and I say we have learned more
> there than the Drs ever tell us.  Everyone is welcome to join.  Hope
to
> see you there:)
>
> Janet     ND and TX
> jsiverts@...
>

I watch this ever so often, but hardly anyone ever comes on, so I
welcome you two....I belong to a group called EFFORTS.....find it by
going to www.efforts.com. They are a VERY active group and you will
learn lots about your disease there, I promise. I have been with that
group for about two years and my hubby and I say we have learned more
there than the Drs ever tell us. Everyone is welcome to join. Hope to
see you there:)

Janet ND and TX
jsiverts@flash.net

I watch this ever so often, but hardly anyone ever comes on, so I
welcome you two....I belong to a group called EFFORTS.....find it by
going to www.efforts.com.  They are a VERY active group and you will
learn lots about your disease there, I promise.  I have been with that
group for about two years and my hubby and I say we have learned more
there than the Drs ever tell us.  Everyone is welcome to join.  Hope to
see you there:)

Janet     ND and TX
jsiverts@...

----- Original Message -----

From: Debbie

To: emphysema@yahoogroups.com

Sent: Monday, October 22, 2007 2:52 PM

Subject: [emphysema] Re: New

I think you and i are the only ones on here



 
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I think you and i are the only ones on here

I was just diagnosed today, and I think we are in the same boat.  I
have no idea what to expect either.

My father died of lung cance but also had Emphysema.  the cancer got
him first.  Maybe getting this so young, may keep me from getting
that, but at the same time, I'm not so sure.

Frank

--- In emphysema@yahoogroups.com, "Debbie" <debrasearch@...> wrote:
>
> I am a 37 y/o mother of 4 my kids are 19,17,16,11 I know a little
about
> it my ex husbands father died of it right after we got together but
I
> am scared I only know what comes in the end I dont have a clue what
im
> facing or how long I will have I was hoping to find the answers here
> and maybe some one to talk to
>

Hello,

I'm 39, father of 4 and was just diagnosed today.  Glad I found this
group.  A little scared, mad and frustrated.

Anyway, just wondered what I should expect.  Doc was nice, but very a
matter of fact.  Lung function down 30%.

Obviously I'm quiting smoking today, but I've failed at it so many
times before.

I have absolutly no idea what else to say.

Frank

I am a 37 y/o mother of 4 my kids are 19,17,16,11 I know a little about
it my ex husbands father died of it right after we got together but I
am scared I only know what comes in the end I dont have a clue what im
facing or how long I will have I was hoping to find the answers here
and maybe some one to talk to

Hi Janet,
Sorry it took so long. So much going on here haven't had a chance to
come to the site. The name of the book is THE CHRONIC BRONCHITIS AND
EMPHYSEMA HANDBOOK  BY DR. FRANCIS HAAS/DR SHEILA HAAS. I love this
book. It is filled with so much valuable info. I bought it on line at
Amazon however I am sure you can ask you local bookstore to order it
for you.
I am 43 and live in Maryland. I dispise the summers here. High
humidity. It is like breathing mud. I stay in alot. I am disabled
with other conditions. I do alot of crafts, painting and just started
sewing basic things.
What does your hubbies pulmo say about the constant SOB? I go to my
first pulmo appt this Thursday. I am a little worried I must say. Can
you suggest any questions for me to ask?
Take care
Zoe






--- In emphysema@yahoogroups.com, Janet Sivertson <jsiverts@...>
wrote:
>
> HI
>
> Where did you get that book, Zoe?  Sounds interesting.  My husband
is
> SOB all the time, he is in end stages, so they say.  Some days he
can
> barely move around, other days he feels not too bad.  I think we
should
> get a portable nebulizer but do not have one yet.  He should have
one
> for travel.  At least I hope we can still travel this winter.
Sometimes
> I wish I could see into the future, but it is better not to know, I
guess.
>
> My hubby has this other problem now, of his hands swelling and
hurting
> terrible...two doctors have said arthritis, but he doesn't believe
> them.  He will see his pulmo next week and find out what he
thinks.
> Some days he can do nothing with his hands.  He is wondering if it
is
> one of his medicines doing this or what.
>
> We have our wills made out, did that years ago, when we started
being on
> the road more.  It is a good idea, anytime.  Now we need to make a
list
> of WHERE our money is, what places are invested in.  In case we
both go
> at once, that is.
>
> Where do you live and what are your weather conditions like?  We
are in
> ND and travel to TX in the winter.  Glenn has had a terrible summer
> here, not sure why.  It has been a nice summer, per se...he blames
the
> crop spraying, but not sure if that is what is doing it or not.
>
> Maybe more will chime in here.
>
> Janet, ND and TX
>

HI

Where did you get that book, Zoe?  Sounds interesting.  My husband is
SOB all the time, he is in end stages, so they say.  Some days he can
barely move around, other days he feels not too bad.  I think we should
get a portable nebulizer but do not have one yet.  He should have one
for travel.  At least I hope we can still travel this winter.  Sometimes
I wish I could see into the future, but it is better not to know, I guess.

My hubby has this other problem now, of his hands swelling and hurting
terrible...two doctors have said arthritis, but he doesn't believe
them.  He will see his pulmo next week and find out what he thinks.
Some days he can do nothing with his hands.  He is wondering if it is
one of his medicines doing this or what.

We have our wills made out, did that years ago, when we started being on
the road more.  It is a good idea, anytime.  Now we need to make a list
of WHERE our money is, what places are invested in.  In case we both go
at once, that is.

Where do you live and what are your weather conditions like?  We are in
ND and travel to TX in the winter.  Glenn has had a terrible summer
here, not sure why.  It has been a nice summer, per se...he blames the
crop spraying, but not sure if that is what is doing it or not.

Maybe more will chime in here.

Janet, ND and TX

Hello all,

I will try to keep some running talks going. I found a wonderful book
called the Chronic COPD-bronchitius and emphysema handbook. Lots of
great info from the beginning of the disease to the end. The info on
end stages and how to prepare was so good that my boyfriend and I (I am
43) have started preparing our wills and talking to our families. Not
trying to be morbid just trying to be prepare for anything.
How is everyone dealing with shortness of breath? I have it constantly
all day long. I wore a pulse ox meter to bed and that was fine. How do
you all deal with it?
I have been using my lemon cleaner and to my surprise it works! And
smells great! Does anyone have a portable battery powered nebulizer and
if so where did you get it?
Well lets see if we can exchange dialouge  here
Zoe

--- In emphysema@yahoogroups.com, Janet Sivertson <jsiverts@...>
wrote:
>
> HI  Zoe
>
> Glad to hear you are getting better...and am glad you went to
> Efforts....I would strongly suggest you try to get away from
carpet...it
> holds so much...I am trying to get rid of ours, bit by bit.  That
sounds
> like a dumb law, to insist you have carpeting???  What is the
object of
> that.  Don't they know that "carpet is out"...everyone is tearing
it out
> and putting in wood floors.  Oh, well, do what you have to do.
>
> Sounds like you are on top of things tho, with the nurse coming out
and
> all..that is great...
>
> Keep up the good work!
>
> Janet of ND
>
Hi Janet,
Thanks for responding. I would love to get rid of all the carpet but
since I am on the top floor the people below may be inconvienced by
noise. So no way out of it.

HI  Zoe

Glad to hear you are getting better...and am glad you went to
Efforts....I would strongly suggest you try to get away from carpet...it
holds so much...I am trying to get rid of ours, bit by bit.  That sounds
like a dumb law, to insist you have carpeting???  What is the object of
that.  Don't they know that "carpet is out"...everyone is tearing it out
and putting in wood floors.  Oh, well, do what you have to do.

Sounds like you are on top of things tho, with the nurse coming out and
all..that is great...

Keep up the good work!

Janet of ND

----- Original Message -----

From: hellokitty3603

To: emphysema@yahoogroups.com

Sent: Thursday, July 19, 2007 7:18 AM

Subject: [emphysema] Activity

Hi All,

There is not much activity here is there? Went to doc on Tues for lung
function test, prior one in 05 had me at stage 1 mild. This test has me
between stage 1 and 2. My doc signed me up for a home respitory program
and the nurse came out Tuesday. Very informative, taught exercises,
pursed lip breathing (hard to get used to) went over my meds advised my
doc to add several (which he did) talked about getting rid of perfumes
(the hardest part) aerosols and such. She left a pulse oxi meter to
wear overnight-test went well no night time o-2. She will be back in 6
months and is only a phone call away.
My bf and I plan on having the carpeting replaced (over 13 yrs old) in
the apartment soon. I would rather go with out but it is County law 80%
must be covered. Buying new filters for the AC's and doing whatever
else we can to perserve my lungs. Also plan on getting a stool and
adding wheels to it for the kitchen for cooking and doing dishes.
Went to EFFORTS and found it to be very helpful.
Hope all is well and hope to see a little more activity here.
Take care,
Zoe



 
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Hi All,

There is not much activity here is there? Went to doc on Tues for lung
function test, prior one in 05 had me at stage 1 mild. This test has me
between stage 1 and 2. My doc signed me up for a home respitory program
and the nurse came out Tuesday. Very informative, taught exercises,
pursed lip breathing (hard to get used to) went over my meds advised my
doc to add several (which he did) talked about getting rid of perfumes
(the hardest part) aerosols and such. She left a pulse oxi meter to
wear overnight-test went well no night time o-2. She will be back in 6
months and is only a phone call away.
My bf and I plan on having the carpeting replaced (over 13 yrs old) in
the apartment soon. I would rather go with out but it is County law 80%
must be covered. Buying new filters for the AC's and doing whatever
else we can to perserve my lungs. Also plan on getting a stool and
adding wheels to it for the kitchen for cooking and doing dishes.
Went to EFFORTS and found it to be very helpful.
Hope all is well and hope to see a little more activity here.
Take care,
Zoe

Hello All,

I hope that like Grump this doesn't come out in the invisible ink! I am
43 and was dx in 05-I didn't quit smoking until this year. I was in
denial. I have several other chronic diseases and just didn't want to
deal with another. But I finally woke up. I was started on Advair and
Spiriva in 05. Went to Dc the other day because I can hardly breathe.
Now I am on Singulair, Prednsion and a home Nebulizer-Albuteral every 6
hours.
There really isn't much out there on Emphysema. I have ordered a few
books but my main source of info is my Uncle who is in the end stage.

How many of you have changed your living habits such as non aersol
sprays (they take up the oxygen in the air when sprayed), fragance and
dye free laundry products, using vinegar and lemon juice and such for
cleaning? I would love to know what every body is doing.

Nice to meet you all,
Zoe

Hello All,

I hope that like Grump this doesn't come out in the invisible ink! I am
43 and was dx in 05-I didn't quit smoking until this year. I was in
denial. I have several other chronic diseases and just didn't want to
deal with another. But I finally woke up. I was started on Advair and
Spiriva in 05. Went to Dc the other day because I can hardly breathe.
Now I am on Singulair, Prednsion and a home Nebulizer-Albuteral every 6
hours.
There really isn't much out there on Emphysema. I have ordered a few
books but my main source of info is my Uncle who is in the end stage.

How many of you have changed your living habits such as non aersol
sprays (they take up the oxygen in the air when sprayed), fragance and
dye free laundry products, using vinegar and lemon juice and such for
cleaning? I would love to know what every body is doing.

Nice to meet you all,
Zoe

Welcome Grump.  Not much action on this group.  I joined a few weeks ago and
have only seen a couple of posts, including yours.  lol.  You sould just
like me.  I was diagnosed in 1995 and quit smoking 12/11/2001.  I smoked for
34 years and was up to three packs a day; depending on the stress in my life
at the time.  There are a couple of copd support groups I am on.  If
interested, let me know.



   Vicki in Maryland
Forever mom of:Joey ( year old male  golden  rescue who got new home
5/28/05, I will always love you Joey, Rusty (Male 6 year old Golden ),
Browse ( 4 year old Female Dobie mix  rescue), Apollo (Male 1 1/2 year old
Rottie rescue and a few rescued cats.  Angels  Bruno (9 year old  Male
Rottie) , Sheba ( almost 8 year old Female Rottie) and many others gone to
the bridge but never forgotten






>From: "jmfloors" <Grump@...>
>Reply-To: emphysema@yahoogroups.com
>To: emphysema@yahoogroups.com
>Subject: [emphysema] New to group and COPD
>Date: Wed, 15 Feb 2006 17:14:32 -0000
>
>Hi, I just found your group. I was diagnosed with copd about 9 months
>ago. I smoked for 35 years -- up to 3 packs a day. I quit 4 years ago,
>but I guess it was too late. Been looking for support groups. There's
>not a lot out there. Kind of a lonely disease. I joined a forum at
>www.1FootInTheGrave.com but it is very new. I also joined another
>Yahoo group but they only seem to talk between themselves -- unless
>it's because my messages are in that new invisible font. ;)
>
>Anyway, wanted to say hello.
>
>Grump
>
>
>
>

Hi, I just found your group. I was diagnosed with copd about 9 months
ago. I smoked for 35 years -- up to 3 packs a day. I quit 4 years ago,
but I guess it was too late. Been looking for support groups. There's
not a lot out there. Kind of a lonely disease. I joined a forum at
www.1FootInTheGrave.com but it is very new. I also joined another
Yahoo group but they only seem to talk between themselves -- unless
it's because my messages are in that new invisible font. ;)

Anyway, wanted to say hello.

Grump

yep, it is a great group....I have been enjoying it, tho have not
contributed anything really...just reading and learning....glad you like
it:)

Thanks Janet
  I did find the website EFFORTS adn joined the mail list. The site has
a Great wealth of Information and I am already behind in all the mail.
but it has so many people there that I am sure anything I wish to
eventually seek I shall receive.~~~~~~~~Tom

--- In emphysema@yahoogroups.com, "Janet" <jsiverts@...> wrote:
>
> I never found anyone on this group either....a suggestion....find
EFFORTS on
> the web and join that forum, they are VERY good on that site.....you
can get
> advice on every part of the COPD problem....
>

Thanks Janet
  I will give that an EFFORT.lol~~~~~~~~Tom

--- In emphysema@yahoogroups.com, "Janet" <jsiverts@...> wrote:
>
> I never found anyone on this group either....a suggestion....find
EFFORTS on
> the web and join that forum, they are VERY good on that site.....you
can get
> advice on every part of the COPD problem....
>