Stage 1 - Bit Confused

[londonrich]

Hi Everyone - after a recent hiking trip I got breathless , went to see the doctor and I have stage 1 COPD , I stopped smoking 10 years ago and will do my best to control the COPD if that is possible.

Life was going great , business doing well, great new partner , really happy, now I am thinking its all over, of course that's possible just me being very depressed of the news - here am I at stage 1 with visions 
of stage 4 and not being able to breathe

Am I over reacting, I honestly do not know

I can function daily, I go to work , I go out , at present its major exertion or high altitude that affects - can I slow this down ?

Hate to lose the new girlfriend, just honestly do not know what to say to her

Anyone have any suggestion

[gerald]

Londonrich, Welcome to the group. 


I have Chronic Bronchitis.   I was diagnosed with COPD  at stage 4, 15 years ago. 
It is great that you have caught yours early.  As you are at stage 1, your FEV1 value should be at 80% or above.

That should leave you in good condition to manage your disease. There is nothing you were doing before that you
can not do now with COPD, you may find you have to slow down in some things.  This is the learning experience
you will encounter over the next could of years as you begin to test your limitations.

Higher elevations will cause some problems, air travel is an example, as your blood oxygen level may drop too low.

COPD, while not currently curable, it is treatable. The critical element is to keep it under control, keep inflamations down.
They really do not know what causes COPD, there are currently 5 different types and their progression depends on the
type that you have.

You will find a lot of information in the various forums there that can answer questions that may come to mind.

Did they tell you what type of COPD.  Di dyou get a Spirometry test done?

[joany]

Welcome londonrich

The "Bit Confused" certainly fits the way most of us initially felt.  I was diagnosed with emphysema about 8 years ago.  After this diagnosis, I waited 2 weeks for death to come.  After that I decided to get moving since it looked as if I was going to live at least another day.  About 8+ years later...

I wasn't given a stage - the stage helps somewhat  - it's more like a newspaper headline.  What's important is the information that comes with it.  Stage 1 means, the earliest stage as of this date. The diagnosis is coming more rapidly and sooner in people's lives because the medical profession has grown more knowledgable, the testing methods have improved, the medicines have improved, the life expectancies have lengthen (including with COPD).  

The best thing for right now is to appreciate that you've been diagnosed so early and at a time when medical science is on top of it.  (I think there's a cure just around the corner.)  You'll need to get some test, get some meds, and get on with your life!  There'll be group members who'll respond who have so much information but mostly getting on with their lives - learning about the disease, learning about living with the disease, learning to live in spite of the disease, and on and on.  There's some real long longevity here, but that's life.

Note:  I needed to respond right away (mind you my dinner is getting cold) because I don't want you to go into hiding for 2 weeks as I did.  I'm sooooooo glad you're here.

[John]

welcome londonrich I've have been at state 4 for 10 years now and don't plan on leaving this earth any time soon . I'll be 69 next month and have been smoke free for 12 year . The best thing you can do is not smoke ! . Stay active and enjoy your life . Glad to have you here with us . 

[David]

You should have many good years ahead of you. I was diagnosed in 1983. Didn't feel it till 2003.

It is a slow process. Enjoy life while you can.

[jarca]

you've gotten good advice from the others. COPD is a slow moving disease if you take care of yourself.
When I was first diagnosed, i was a heavy smoker. When i asked my GP "how long i would live", she said, " if you keep smoking, 5 to 10 years; if you quit smoking 15 to 20 years".
oh i was diagnosed in 2010 with COPD the "emphysema" type.
(COPD is an umbrella term for "obstructive" lung diseases which consist of Bronchitis & Emphysema.)
I actually quit smoking; something i thought i could never do! I won't say it was easy to quit, but i did it & was amazed at how much better I could breath! No more mucusy/wet/gurgly cough. My "allergies" improved dramatically (yes i still have allergies, but there is a big difference)
The one thing that i would advocate is DON'T go internet searching on how long can you live!!!! There are so many crackpot sites out there & I scared myself to death looking for a prediction on how long i would live!!!
You have found a great site here, with a lot of GOOD information & others that are going thru this same disease at all different stages that you can learn from. Don't be afraid to post or ask questions; we are all here to learn & support each other.

The best advice I ever got was what I told my youngest daughter when I was diagnosed.
She started crying and telling me how she "can't lose me now".
I told her, "I am no worse off today, than when I was yesterday before the dr diagnosed me. Now, I know what to do to take better care of myself . It is not a death sentence, it's how I can improve my life & get the most out of it."
High altitudes cause people with healthy lungs to breath hard. Perhaps that was a blessing that you had a hard time & got diagnosed early.
now you can make sure that you enjoy every moment you have. Take care of yourself by eating right, exercising, quit smoking if you do and so forth.
When I was diagnosed I was put on supplemental oxygen, some people never need it & some need it from early stages. I have heard others say they are embarrassed to wear it, but for me it was wonderful; I could breath again!!

I also want to welcome you, Londonrich, I hope you find information, inspiration & friendship here.

[londonrich]

A quick thank you to everyone that responded , I am just about to go to work, but you have all made me that little more positive and I thank you for that.

I will post more later, may I just wish you all a great day and thank you for words of encouragement

London Rich

[ozboy]

Hi Londonrich....Nice to find out at such an early stage of a long journey.......and all the other comments are perfectly good advice..

and specially the one Jarca mentioned, as that was one that scared me the most, as I had no real informed ''Professional'' information about my disease but had enough clues, to lead me to check on google.....That in itself put me into full denial.....


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[londonrich]

Saw my Doctor this evening who assured me that I am stage 1 copd , so s maybe hiking at high altitude got me to the Doctors quickly

What I could not understand is that I carry one cell, apparently there are 2 , I think its something to do with Alpha , but got confused

Doctor honestly thought with the correct care I should be good for many years 

Exercise, Diet , Meds , dont smoke

so hopefully a good day

[David]

Some people who get COPD at a young age generally have Alpha-1 Antitrypsin Deficiency - It Is An Inherited Disease.‎

www.alpha1.org/what-is-alpha1

I was diagnosed with emphysema at 32 years old so most doctors figure I had Alpha-1 deficiency.

There is a simple test that can be run. My test said I was not Alpha-1.

I got emphysema from the oilfield. I was allergic to something in crude oil and getting pneumonia for 3 years in a row. Third x-ray is when emphysema showed up. Quit my job and never had pneumonia again.

[jarca]

now I am confused & don't understand what your dr was trying to tell you when talking about cells. When I look up cells associated with COPD it is a subject that seems to be over the head of the average person being told they have COPD.

At first i thought maybe your dr was telling you that you have 1 of the 2 types of COPD, not both (some people do have both)
1. Bronchitis
2. Emphysema
did your dr tell you which one you have?
they both may be "obstructive" diseases, but they do have different 'symptoms' to deal with.

Next, as David mentioned, there is a "gene" that some people have that can be the cause of COPD;
i had the test & it was just a finger prick then a drop of blood was put into 3 little cup like things & sent off to a lab that did that testing-i found out on my next appointment what the results were.
only 2 results for that test;
1. positive
2. negative
did your dr prick you finger & take a few drops of blood?

finally,
COPD "cells" (a new one to me, i was diagnosed 7 years ago & i've never had any dr say anything about cells)
but interesting to research on a day when i'm doing bills & need to get my mind of money.
most of the things i found were way over my head & everything i found seemed to have a main purpose about smoking & the increased number of "macrophages" in COPD patients that smoked. (maybe because you quit smoking 10 years ago your dr felt that cell wasn't pertinent in your case).
However;
I finally found a link with A LOT of info about cells & will post it down in the "COPD News & ongoing questions..." area that you can go look at & see if something clicks pertaining to what your dr said.

good luck! & thank you for taking my mind off my money being mailed away in envelopes

[ozboy]

Jarca...I also have never heard the ''cell'' theory in COPD diagnoses...The closest I encountered, was having a blood Test to determine if I could be the ''Carrier'' of said gene, that had surfaced in my daughter's battle with Grand Mal Epilepsy.....I was not carrying this ''Gene''

Genetic Test

The genetic test will show one of the following for the mutations C282Y and/or H63D of the HFE gene:

• Mutation not found

• Heterozygous (which means one faulty gene) or

• Homozygous (which means two faulty genes).

Haemochromatosis occurs when the genetic test result shows they are homozygous, that is they have two faulty genes.

A person who is heterozygous with one faulty gene is unlikely to experience any symptoms but is known as a “carrier” because they may pass the condition to a child.

[jade]

Hi Londonrich,All was going well for me before I was diagnosed. I know that I am survivor, then a thriver and always a winner.COPD is a progressive disease. I made decision to sell my business while I look well. First I sold my business and got what I want. I end up a winner, because once the words got around that I am sick ,buyers offer pittance. So I kept secret till was sold.Then I sold the commercial building to the investor. Because I am survivor that will keep me going financially. Thriving in a small way. Maybe I was able to continue but choice was mine to make.I am positive that I could work still say part time but so far I like doing not much.I am vegetarian and aiming to have vegan days more.Exercises are important and swimming is the best. For me lots of things are different and never be the same. Before I was carefree, not a worries, spending and enjoying life.Now I stopped spending, becoming careful and BORING. That is my story. May your life continue to be great, full of joy and exciting. Jade

[lavishgail]

Nice to meet you.
I'm Gail welcome.

[Suzanne (Suz)]

Welcome to COPD in Canada & the World London Rich - come join us at the Over the Back Yard Fence link when you have a chance that is where we meet and see what's new with everyone. Don't forget to browse all over for some great tips on how to survive this sickness and to learn a few more tricks we love to share.

See you soon.

PS: I see many of our members have offered suggestions and answers to your question. I was diagnosed at 47 with moderate to heavy COPD with one count of 28% lung capacity to 38% capacity and that was in 2008 - I had just quit smoking a year prior to this so I think my lungs were on the healing path. A few years later I would say around 2011 my specialist dismissed me as my lung capacity was at 78% (with a cold) but he jokingly told me he had more serious patients to see and to come see him in 3 or 5 years. I never went back - I too decided to get over the depression of seeing myself deteriorate and acted on trying other things to strengthen my lungs.

I use chinese herbs and now essential oils from Doterra - I love it. I am not cured, far from it as I continue to take all my meds but I know I will live longer than I anticipated back in 2008 when I was first diagnosed.

I too got tested for the genes and I'm glad to say I do not carry it.

Good luck to you and may you find the right path to healthier living. Hugs