I was diagnosed at age 42 with no warning (never smoked, never exposed to lung irritants, don't have alpha-1 despite being tested 5 times). It did take some adjusting for all of us, but as a family we have become even closer than ever and I have only been very slowly progressing, now requiring supplemental O2 for flying and altitutes.
I have formed the Hawaii COPD Coalition to help spread COPD awareness. More information about our work is at www.hawaiicopd.org. We offer free lung function testing, information and resources to healthcare providers and the public.
Aloha,
V.Chang
Dear Starion,
Thank you for your comment and for letting us know about the opportunities for folks with COPD in Hawaii. You're doing great work by organizing and helping people!
Your great family support and a positive, "can do" attitude will go a long way in helpin you live as healthy and active as possible for a long time!
All my best,
Jane.
http://www.breathingbetterlivingwell.com
Laura's story is just like mine. I am 44 years old and just diagnosed with very severe COPD. I am slowly learning how to manage my day. I am on 02 at night. I do exercise now and stopped sneaking the cigs. I want to live so Im ready for the challenge. I have an 11 year old yet at home and do not want him to grow up without a mother.
Hello Laura,
Thank you for your comment. I'm not surprised that there are more stories out there like Laura's. It sounds like you have a good attitude, which will take you a long way.
Please check into testing for Alpha-1 and understand that even if you test negative on the regular Alpha-1 blood test (taken from your vein), you might still be positive. You can send for a test kit, stick your finger (or have someone else help you) at home and send it in. It is confidential and free of charge.
Here is a link: http://www.alphaoneregistry.org/education_materials/ACT%20Brochure%209.02.pdf
or you can contact the ACT Study Coordinator at alphaone@musc.edu, or call toll-free at 1-877-886-2383.
I encourage you to get into a pulmonary rehab program. Even though you're young, you can benefit by learning a lot and improve your physical conditioning, build your strength and have a lot of fun!
I hope this helps.
All my best,
Jane.
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Laura sounds like so many of us who pretend it's perfectly normal to be short of breath because we're getting older and out of shape. The first thing I stress to peope is shortness of breath is not normal no matter how old you are.
Like Laura I thought if I quit smoking I would get my breath back - but I was wrong.
With my co-founder Barb Hanson who also has COPD - we started http://www.copdliving.com and because we are adamant about finding a cure we also founded http://stemcellpioneers.com We refuse to give up our fight.
Dear COPDLIVING,
Thank you for your comments. You're right that there are many more people out there just like Laura, and you and your colleague, who pass shortness of breath off as being caused by aging or being "out of shape."
If I had to say three things to somebody with shortness of breath, that would be:
1.) Get tested -- don't wait
2.) Sit down with a lung specialist and find out what the test results show
3.) Learn all you can!
oh, and you're right....Never give up!
It sounds like you're doing a great service to people with COPD. Keep up the good work! Thanks again.
Jane.