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@katemn

@waterboy, do you have a first name .. more personal. I am answering you on the MAC/Bronchiectasis Main Page BECAUSE we have quite a few Members with "Alpha1 antitripsyn deficiency" including myself .. I have: ALPHA-1 antirypsin heterozygosity, Z allele. If you use the magnifying glass up above putting in "Alpha antitripsyn" you will be able to find our various members with this issue. I WELCOME your information below .. thank you!

You say "I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own." Why don't you begin a discussion on this yourself under: https://connect.mayoclinic.org/groups/ .. you could contact Colleen Young to see if there is enough interest .. I am not really sure how/if this is possible but worth a shot. Sending you a hug! Katherine
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Posted by @waterboy, 52 minutes ago
I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.

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Replies to "@waterboy, do you have a first name .. more personal. I am answering you on the..."

@waterboy, Welcome to our forum. I am an Alpha-1 carrier
myself. Are you a carrier or do you have the double gene for it making it full
blown? - Terri M.
 

I am genotype MZ level 112.

What made them decide to test for that? 

 

Aurora Cardiovascular Services/Electrophysiology

146 E Geneva Square

Suite G

Lake Geneva, WI 53147

 

2801 West KK River Parkway

Suite 777

Milwaukee, WI 53215

 

Phone: 262-249-5430/Fax 262-249-5437

 

Somehow, after I was diagnosed with COPD.... I ran across alpha1, found a way to be tested for free.... so I sent in my sample and it came back positive, then had to have a blood draw sent to them to confirm it.

@waterboy So what does this mean for you? are you learning all that you can
about it?
 

@jkiemen As of recent times, all pulmonologists are supposed to test you
for Alpha-1 deficiencency. It is supposed to be protocal.
 

@jkiemen  Most Drs that I have seen in the last 7 yrs have
tested  me for Alpha-1 or asked me about it. But the results are now in my
records so I don't have to worry about that anymore.
 

I wondered about this. I just assumed they just knew from cbc tests or exams.

What site did you find for testing?

 

Jo ANN

 

@windwalker, Terri, interesting that most of your doctors TESTED you for Alpha-1 or asked you about it!! In 2007 to about 20l5 my Mayo doctor said ZIP about it .. I WAS THE ONE you said I was genetically Alpha-1 per my 23andMe testing .. BUT he then showed interest! HMMM .. ALL doctors need to get behind this! Hugs! Katherine