New to forum from Oregon, USA

[Deleted]

Hi,

I have spent the last several hours reading your forum. What a wonderful place, helpful place.

I was told about a month ago I have COPD/emphysema. I have been severely short of breath, for a bout 7 years since having pneumonia, but have not gone to a conventional dr. until last month. (Actually saw a nurse practitioner as its hard to get into a dr where we live).

Other than the SOB, I have kept myself healthy by using supplements.. and although I haven't been extremely active, I have led a normal life until recently.

This probably isn't the place to go into any details, but if I could get some help interpreting my tests I would appreciate it. My NP didn't tell me very much. She just said I had E and there was no cure, and I just needed to take medication to control it.

I asked about pulmonary rehab, but she said Medicare doesn't pay for it and besides we don't have it where I love.. so I am kind of frustrated.

I have read reports from many of you here that looks like you live pretty active lives and perhaps your readings are worse than mine.

It will be nice to find out a little more about my condition.

Thanks in advance.

PatS

[John]

Country gma if you go into copd info sec there are some links regarding fev1 #'s I think you will find interesting . Any ?'s Just ask someone here will either have an ans or a direction . Glad to have you as one of us

[cocojax]

Hi countrygma glad you could join us, we have a great group of friendly people here. If you have any questions we will find the answers for you. Feel free to join in any time, hopefully see you in Phil's Gym for some exercise or for a chat in Over the back fence...
My name is CoCojax ( aka Ellen)

www.copdcanada.ca/ COPD CANADA Patient Network is a Parent Website and Organization filled with information and a free sign-up. Please feel free to check it out also.

[bobbioh]

Welcome you found your new home. You can learn allot here and with your Drs guidence you can exercise at home. With a healthy diet. And supplements Yourll be feeling better in no time i bet. Join right in anywhere if you have a question ask we will do the best we can to help you find the answer. Again welcome and I hope to see you in Chat soon . Bobbi

[cheryl]

Welcome to the Group

[Deleted]

Nov 18, 2008 20:30:08 GMT -5 John said:

Country gma if you go into copd info sec there are some links regarding fev1 #'s I think you will find interesting . Any ?'s Just ask someone here will either have an ans or a direction . Glad to have you as one of us

Hi John,

Thanks for the welcome. I actually did read the threads re: fev1s. They aren't shown quite the same as on my papers..but I think I must have a fev1 of 39. What I am struggling to understand is how can they say you have emphysema based on just that? I am very short of breath, have been for years, but have no coughing..no illness.. nothing else that points to me having emphysema. Chest X-rays did not show big problems.

In reading some information that was in a Buteyko book, it looked like I might have a combination of RAD, Asthma, and Chronic Hyperventilation Syndrome. . Many people say I should just go to a pulmonary specialist, but I am not very trusting of conventional medicine here in the US. I feel all they want to do it get you diagnosed with a terminal illness then pump you full of drugs.

I have been on albuterol for about three weeks, but I am beginning to realize I must be allergic to it, as I am getting more and more short of breath since starting to take it.. The last two nights I have awakened short of breath, even with oxygen and have never had that happen. Today in reading about side effects, I see SOB is one for albuterol, and I realized also that since I am allergic to phenol.. perhaps that is what is wrong.

I will call my NP tomorrow to see if there is some thing safer for me to take..

Sorry for rambling, I am pretty frustrated.

Thanks.

[Deleted]

Nov 18, 2008 20:59:11 GMT -5 cocojax said:

Hi countrygma glad you could join us, we have a great group of friendly people here. If you have any questions we will find the answers for you. Feel free to join in any time, hopefully see you in Phil's Gym for some exercise or for a chat in Over the back fence...
My name is CoCojax ( aka Ellen)

www.copdcanada.ca/ COPD CANADA Patient Network is a Parent Website and Organization filled with information and a free sign-up. Please feel free to check it out also.

Hi Cocojax, Thanks for the nice welcome. I'm sure you will see me around in the forum.. I could use some exercise. ;D

[LindaNY]

Hi countrygma and welcome to our group. You got some good information from the others but do find a good, board certified Pulmonologist to help you through this disease process.

It is critical that you get the best of care even if you have to go to one of the large teaching hospitals. National Jewish is at the top of the list, but there are others.

Contrary to what you think about medicine here in the US, it's not like that at all.

[aero63]

Welcome countrygma. glad you joined.

[Deleted]

Welcome Countrygma,so glad you joined. There is a great group of people here,I have gotten lots of information on this site,I'm so glad I found it...enjoy ....Lryjyn...

[Deleted]

Thanks to all of you for the nice welcome. I look forward to learning lots here.

[martie]

Welcome Countrygrma to the group. I too am pretty new but these people are wonderful and will try to help you all
they can. I have emphysema and COPD and I am very short of breath most days. Today was a great day for me
here in Indiana the humility level was low and I could finally get somethings done around home.

[chrisw]

Hi Countrygma,
You mentioned several things in your last post under this heading that I would like to comment on.

.... I think I must have a fev1 of 39. What I am struggling to understand is how can they say you have emphysema based on just that? I am very short of breath, have been for years, but have no coughing..no illness.. nothing else that points to me having emphysema. Chest X-rays did not show big problems.

COPD - Chronic Obstructive Pulmonary Disease (which includes chronic bronchitis, emphysema and not-fully-reversible asthma) is, by definition, a condition where the passage of air out of the lungs is obstructed. That is to say that you can't breath out quickly. The FEV1 is the measure (in litres) of how much air you can blast out (from a lung full of air) in the first second. This is then compared to what a typical person like you should be able to do. If a typical person could blow out 3 litres, but you could only blow out 1 litre then your FEV1 could be shown as a percentage of 33%. This would show that you had COPD. However it would not show you had emphysema or that you had chronic bronchitis. Chronic bronchitis is usually accompanied by lots of coughing and phlegm, so emphysema seems more likely (but is not definite).
The lungs do not have little fans to move the air in and out, but rely on our changing the position of our chest walls and diaphragm to change the space our lungs are in, and this causes the lungs to fill and empty. When we get SOB it is because we can get air into our lungs much faster and easier than getting it out, so when we try to breath hard it is a bit like pumping up a bicycle tire - each inhale takes in more air than we can breath out so our lungs get filled until we simply can't get in any more air (this is called dynamic hyperinflation). And that is when SOB hits us like a brick wall.
The only solution is to slow down the exhale and keep more pressure in the lungs as we do so by breathing out through pursed lips. You can live with it if you remain calm and in control of your breathing - but no-one said it is easy!

In reading some information that was in a Buteyko book, it looked like I might have a combination of RAD, Asthma, and Chronic Hyperventilation Syndrome.

The Buteyko method of breathing makes the assumption that you are hyperventillating, but COPDers (at least those with severe COPD) simply cannot move enough air in AND OUT of the lungs to hyperventillate, when we get SOB it is cased by dynamic hyperinflation.

I have been on albuterol for about three weeks, but I am beginning to realize I must be allergic to it, as I am getting more and more short of breath since starting to take it.. The last two nights I have awakened short of breath, even with oxygen and have never had that happen. Today in reading about side effects, I see SOB is one for albuterol, and I realized also that since I am allergic to phenol.. perhaps that is what is wrong.

Becoming more SOB with asthma is a rare and unlikely side effect, but some people do not react well, especially to the new MDI inhalers without the old CFC propellants. I do not think there is any close connection between phenol and albuterol. You might see if you can try some Spiriva as this helps many of us avoid, or at least postpone, getting SOB.
If you felt you needed to apologise for rambling, then I certainly do too - but some things can't be explained in just a couple of words!!!

[artty34]

:)Welcome Countrygma. I have been here only a week , and there is lots to read and learn.
The best part, is reading what others have gone through, so you know you are not every alone.
Arlene

[Deleted]

Nov 22, 2008 18:28:53 GMT -5 chrisw said:

Hi Countrygma,
You mentioned several things in your last post under this heading that I would like to comment on.
snip
If you felt you needed to apologise for rambling, then I certainly do too - but some things can't be explained in just a couple of words!!!

Chris, Thanks for your post. You gave some good explanations for things I have been wondering about. I know I will learn more by hanging around in here. I will be reading lots of the old posts and just getting to know people. This definitely looks like a friendly and informative place.

Pat

[Deleted]

Nov 23, 2008 6:04:47 GMT -5 @artty34 said:

:)Welcome Countrygma. I have been here only a week , and there is lots to read and learn.
The best part, is reading what others have gone through, so you know you are not every alone.
Arlene

Hi Arlene,

Nice to meet another newby. I am all ready motivated about the exercising since reading how much that has helped others. I have found a place a couple of hundred miles from us, that I might be able to go and take a pulmonary rehab course after the first of the year. I sure hope so.

And I agree..when you read about everyone else who is learning to cope and live a full life even with illness..it somehow makes it easier.

Pat

Pat

[Deleted]

Nov 19, 2008 17:42:36 GMT -5 martie said:

Welcome Countrygrma to the group. I too am pretty new but these people are wonderful and will try to help you all
they can. I have emphysema and COPD and I am very short of breath most days. Today was a great day for me
here in Indiana the humility level was low and I could finally get somethings done around home.

Hi Marty, Thanks for the welcome. I look forward to getting to know you.

Pat

[Deleted]

Nov 19, 2008 10:13:33 GMT -5 LindaNY said:

Hi countrygma and welcome to our group. You got some good information from the others but do find a good, board certified Pulmonologist to help you through this disease process.

It is critical that you get the best of care even if you have to go to one of the large teaching hospitals. National Jewish is at the top of the list, but there are others.

Contrary to what you think about medicine here in the US, it's not like that at all.

Hi Linda, Well, I am open to learning what can be done. I have just never been one to go to the doctor, and have not had good experiences when I have gone.

I'm checking out a medical clinic a few hours from us. Thanks for the advise.

Pat