Never smoked or been around it & diagnosed with COPD at 32

@brittanykathleen welcome to Mayo Clinic Connect. I am one of the mentors for this group and although I haven't had your experience I do have COPD. I see that you have had a Pulmonary Function Test to see if you have Asthma, and blood work to see if you have any infections. I've also had bronchitis and with all of the coughing and lung inflammation, I can understand how awful and painful this can be.

Was your bronchitis initially caused by an infection?

Have you been tested for Alpha 1?

Alpha1?

Just wondering if you have tried a national or regional center, such as National Jewish Health in Denver, CO, or Temple in Philadelphia or UCSF or even May Clinic. Some of the larger teaching hospitals may be able to evaluate more thoroughly and provide treatments that other medical centers don’t, as well as considering and ruling other conditions in or out.

I was diagnosed in 2000 at 42 with emphysema from no known cause. I also never smoked and was never around lung irritants and was tested for Alpha-1 Antitrypsin Deficiency about 8 times and counting. They have a newer, more sensitive test that includes genetic analysis now at National Jewish, so I will be submitting vials of blood so they can analyze that.

Temple is doing some trials and treatments for folks with chronic bronchitis, where they basically freeze the small airways that are over-producing mucus (cryotherapy). This might be something that you can explore with them if as to whether you might be a suitable candidate.

I'm in agreement with @hicod! Try looking for a referral and/or information at some of the bigger Institutions ie Mayo, Cleveland Clinic, John Hopkins, The Research Triangle-Duke, UNC & Chapel Hill. Did you by chance get an Infectious Disease consult?

National Jewish in Denver is also pretty well respected. U Texas Tyler is building a good program as well.

I feel your frustration. My grandfather died from black lung in emphysema and lung cancer and just about everything else you cared to mention because he had been a coal minor and had lived through the era where they told you it was good for you to smoke. It was before the time of hospice and all you could do was watch him waste away and a painful death.
I swear to God that I would never smoke, so I would never end up like my grandfather did. Then the fact that I was a ZZ Alpha
fell out of the clear blue sky on me. So even though I am a never smoker, My lung is only 60% and I’m facing a lung transplant in my future. Then I have the joy of knowing that I passed one of those hideous chains along to my only child.

There are some really good alpha One and COPD doctors at locations other than the Mayo Clinic or regional hospitals. For some reason, Alpha one doctors seem to have a great deal more compassion for their patients than a lot of pulmonologists. Perhaps Just because they deal with people like you who didn’t smoke yet they are facing such serious long issues. One of them went as far as to tell me that I was blameless for my condition, which was a source of comfort to me

I don’t know where you live, so I can’t even consult my list of specialists to see if there is one close to you. One of the pioneers of Alpha1 Research just retired from the Ohio State University. His successor is Dr Jing Wang, she is a most brilliant Dr. And extremely compassionate. A flat out amazing pulmonologist and alpha one specialist in Charleston South Carolina is Dr Charlie Strange at MUSC. He is brilliant and funny and would do anything for you. You would never know that he runs a lot of clinical trials at MUSC. I am involved In one of his gene therapy, clinical trials right now. Can you imagine the possibility that this trial will be able to switch on the production of Alpha one Anti-Tripsin in my body?

I realise that theoretically this is not the issue you are dealing with, but I wanted to give you hope Knowledge that there are people out there doing incredible things to try to help people with issues.

When they tested you for Alpha one what was your genotype? MM, MZ? People who are MZ can still Be symptomatic, it all depends on The Alpha one level in their bloodstream. Did they ever tell you what that was?

And don’t forget to check clinicaltrials.org. That’s where I found my study. The sponsor pays for my transportation from Ohio to South Carolina, my food, lodging, and pays me for each trip that I make to South Carolina. So it’s not a financial burden at all.

I wish you nothing but the best and please let me know how you are doing. We’re all in this together