Welcome copd ,Looking for help with my diagnosis

[copd]

! I just found out I have stage one COPD. As soon as the doc told me he was pretty much out the door. I will go back to him on August 12th. I am very overwhelmed with all the research I have done and it has caused an additional anxiety on top of it. I teach PE and I'm worried about not being able to do my job correctly. I have been sick for a long time and family doc just fed me antibiotics. I never got any better. I have never smoked. My brother finally talked me into going to a pulmonologist and the results are in... Now I just need to figure out what caused my COPD. I feel like it's chronic bronchitis bc I've had that. But, what has caused me to have the bronchitis??? I need COPD friends and appreciate you all kindly for any help. I'm two weeks into this new lifestyle change and I can't help to say I'm very pissed off. One minute I'm crying the other I'm mad. I have four children and I don't hardly have any energy for them like I use to. The ONLY thing the doc gave me was a rescue inhaler. Maybe they are waiting for all test results to come back before medicating. I start back teaching soon.... Hope I'm ready for my 300 kids a day. As of right now-- I want to crawl in a hole! God Bless you and thank u for your time.

[copd]

! I'm new to all this forum stuff. Hoping to learn from all of you. I'm very new to the COPD world... Guess I need to be thankful I finally know why I'm sick. I just want the right mess to make me feel better. Today it is very humid in Virginia and it wears me out. I'm hoping to get some exercise in later this evening. I am sipping on some mullein tea that I made. I did some research on it and it says it is very good for respiratory health. Good thing is it was growing in my back yard and I had no idea that plant was good for you!!! God bless you all!

[gerald]

Welcome to the group. This is a great place to get information, everyone here is great at helping.
You will find a lot of information in the various categories to help clarify COPD etc.

As for your condition, as you go through the topics will will be able to create a list of questions you will want yoru doctors and pulmonologist to answer for you, adn you deserve those answer.

Stage one COPD is the mildest stage of COPD. While COPD can not b cured it can be controlled and slowed down and you have caught it as early as possible so that is great news.

Chronic Bronchitis is a form of COPD where the constant coughing etc inflames the lung tissues and causes damage. Bronchitis is usually viral (at least mine was) and therefore you can not cure it, but it can be controlled. Usually Prednezone reduces the inflamation and antibiotics knock out any infection. A flu shot is almost a must to stop flu's from starting up the bronchitis again.

COPD is just a condition, with the information here you can find stuff to help you get on with a full and long life!

Welcome to the group. Drop in to Opver the Backyard Fence thread and see how everyone is doing.

[jim]

Hi copd, my heart goes out to you.

[John]

welcome  Copd . I moved you over here so others can welcome you . . Feel free to post at the fence anytime . 

[John]

COPD ! YOU ARE IN THE RIGHT PLACE . YOU SAY YOU HAVE NEVER SMOKED ,THAT IS GREAT . YOU MIGHT HAVE THE GENETIC KIND OF COPD . AT STAGE ONE YOU STILL HAVE TIME TO MAKE HEALTHY CHANGES TO YOUR LIFESTYLE AND WILL HOPEFULLY BE ABLE TO LIVE A LONG AND REWARDING LIFE . DON'T BE AFRAID TO ASK QUESTIONS .THERE IS A LOT EXPERIENCE STRENGTH AND HOPE AVAILABLE HERE . 

[jarca]

COPD (again )
My oldest sister had COPD and, unlike myself, she had never smoked a day in her life. We were raised by parents that didn't smoke either so we weren't exposed to 2nd hand smoke in our home either.
I don't know how old you are, but you sound like you may be young if you are still raising children.
As John mentioned, there is a genetic form of copd. It is caused by the "Alpha-1-antitrypsin" (AAT gene). It has something to do with the body of AAT people not producing a protien & it can manifest in COPD or as a Liver condition.
When you see your Pulm, you may want to ask about being tested for it. It just takes a finger prick & a few drops of blood are sent for analysis. There is some kind of treatment that a person goes & has an IV injection i think once a month & that slows down the progression of copd or liver condition. (because my sister had COPD also, when i was diagnosed I was tested for AAT but it was negative---on another support group I used to belong to there was a couple of people that had the AAT gene & were having the treatments.
Perhaps a member here has it & can tell you more about it...but in the meantime I would ask to be tested for it.
Here is a link to the alpha-1 foundation that can tell you more about it;
www.alpha1.org/Newly-Diagnosed/Living-with-Alpha-1/Treatment

You mention your lack of energy & how badly you feel. I also was diagnosed when I was in the "mild" stage of COPD, but I needed supplemental 02 from the beginning. Your dr should perform a "6-minute walk test" that will let you know if you need supplemental 02 and how much (LPM) you will need. Also, a sleep study for 02 will let your dr know if you need supplemental 02 at night.
I cannot tell you what a difference it made to how I felt & functioned once I got the much needed 02 that I was constantly low of!
COPD is an odd disease in the fact that many of us have it, but things like 02 some people don't ever need & others need from the very beginning. It seems that sleeping is when many people need it 1st..
I am so sorry you have had to join our club, but life isn't over yet & you could have many years left. I do not know if you smoke (& it's none of my buiseness if you do). I smoked 2-3 packs a day when I was diagnosed. I asked my dr "how long I would live" and she said, "5 years if you keep smoking, 20 years if you quit". i don't know if that is true, but I started the quitting process at once. It took me 4 months to quit, but I was absolutely amazed when I quit on the difference of my breathing!!!!
I had always had a wet, mucousy cough & allergies that my nose ran all the time; when I quit smoking I dried up like a desert!!! No more wet cough. I still have allergies, but not that constant mucus draining all the time.
Anyway, this is some of my experiences that may be a few things you want to talk to your dr about.
I am at the severe stage of COPD now & I also have a 2nd lung disease called Pulmonary Fibrosis and I feel better today, than I did when I was first diagnosed! So getting the proper care & treatments can make a big difference in how you feel.

I'm sorry for taking up so much space, but I just remember how scared & helpless I felt when I was 1st told & my heart goes out to you.

ps. My youngest daughter freaked out when she heard i had copd....to calm her down i told her that "I am no different than I was yesterday when the dr told me, just now I know how I can take care of myself" --- that calmed my daughter down & me too. I was no different than the day before; just now i knew I needed to do some life style changes (((HUGS)))

[David]

If you have never smoked ask your doctor to test you for Alpha-1 antitrypsin deficiency. www.alpha1.org/what-is-alpha1

Your treatment will be different from regular COPD.

I can only speak for myself but you have a long life ahead of you. I was diagnosed over 30 years ago in 1983 with the beginning of emphysema.

For the next 20 years I did not feel anything pertaining to the disease. In 2003 I started to get short winded so I went to a doctor. At that point I was probably using only 50% of my lungs. I signed up for disability. I was a painter and it was getting hard for me to climb the ladders and carry 5 gallon buckets of paint. 6 months later I was on disability.

Now it has been 13 years since I went on disability. At this point my FEV1 is around 20%. I am on oxygen at night and during the day if I exert myself. I have been on oxygen now for about 4 years.

So you can see it has been a very slow progressive disease for me. Good to catch it early so you can get a handle on it.

Follow doctors orders. Get a walk test done and a lung function test and by all means get a CT scan.

Don't let it get you down. Life is still good to me. I have excepted my disease for what it is.

[lavishgail]

Welcome copd, and big huge huggies.

Love Gail.

[David]

Aug 3, 2016 21:41:16 GMT -5 jarca said:

I asked my dr "how long I would live" and she said, "5 years if you keep smoking, 20 years if you quit". i don't know if that is true, but I started the quitting process at once.

I know everyone is different. I would like to add some of my story to this.

I was diagnosed with the beginning of emphysema in 1983. Unlike Jarca I did not quit smoking. I didn't quit smoking until the drug Chantix came out. I quit smoking in 2005. I smoked about a pack a day of 'Lights'. It was hard to quit for me. Everyone around me smoked and besides I already had emphysema. Chantix was the only thing to block the urge to smoke.

I did not feel any different in the 20 years I smoked after diagnoses. Finally in 2003 I started to feel short winded. I climbed a lot of ladders in those 20 years. I was a derrick hand in the oilfield and I was a house painter.

I know some people who smoked up to the day they died. They all lived to be old.
I feel so much better after I quit. My health got a lot better too. My chest cleared up. Today I have no wheezing or congestion in my chest. I don't have bronchitis. Just emphysema. I consider myself very lucky.

You said you drink mullein tea. that is good for you. I take a lot of herbs. One I found that helps me is called "Clear Lungs". It is a combination of herbs. Be careful though. Like they say 'One man's medicine is another man's poison'. I found what works for me. I did lots of research.

Good Luck!!

[Suzanne (Suz)]

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