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It's nice to see this article. I was dx with COPD last year at the age of 35. I have had 3 lung collapses... 2 lung surgeries and then dx with COPD. I was a smoker so hearing that I had COPD was not a surprise... but at my age... that is what really confused me. And why after having multiple collapses and two surgeries... did it take me to go to the pulmo doc and ask why I was so short of breath... that is when I got dx with COPD... not by my surgeon or through all of my hospital visits... I have read lots of articles but they seem to focus on the later stages.. I understand no matter what age we are what we eat, our fitness.. it affects us.. Maybe its just me not accepting it... but seems to me 35 is young. And yes I have been tested for alpha 1 (three times). The pulmo doc I see just hands me in inhaler and wants to see me every 6 months to redo my PFT tests. They say go in to be seen if you are coming down with cold symptoms etc.. I do and they don't really check me.. once they hear COPD they just say its an exacerbation and here are some pills... I sure you all can sense some fustration and sorry to make this long a winded... thanks for listening.
kari
Dear Kari,
I can certainly understand your frustration and I can hear it in your words!
Here are a few suggestions: If you don't feel your doctor is listening to you, remember that you have an option to switch to somebody else. You employ your doctor. He or she is there to work for you. I'm not saying that your doc is not good, only that it is important for a patient to have a good relationship with the doc and feel that he or she is doing all they can possibly do to help you.
Also, you mention that you tested negative for Alpha-1. I've been hearing more and more about the phenotype test being more accurate than the serum level which is analyzed from blood from your vein. The phenotype is done with just a drop of blood from a finger prick. It can be done for free and anonymously. Just check with the Alpha-1 Association or the Alpha-1 Foundation about this. There is also information with a website and phone number on my links page.
Finally, you don't say where you live, but if you are within driving distance of a large university medical center, you might consider asking for a referral to their pulmonary department. University Medical centers are up on the latest treatments, especially for those patients who have a more unusual situation, which I would say you do.
Thanks for your reply, Kari. I hope this helps and I wish you all the best!
Jane.
http://www.breathingbetterlivingwell.com
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True,Get the test for Alpha-1-as soon as possible.It took me about 10 years to figure it out.I'm now going to quit smokeing as of today. It's really late,I'm having trouble sleeping.I found out I had AAT about 3 mounts ago.
Hello David,
Unfortunately, your timeframe in "figuring it out" is not unusual. The good news is that now you know what you have and you're taking action to slow progression.
Do you know what your lung function numbers are? Have you asked about, or has your doctor mentioned, pulmonary rehab? If you can get to an Alpha-1 education day when one comes to your area, that would be a big help -- just to get together with other Alpha's and find out the latest in research and treatment. I don't know where you are located, but there's one coming up in Ann Arbor, Michigan (not far from Detroit) on November 14. I'll be there.
Thanks for your comment, David, and best wishes!
Jane.