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Alpha-1 Antitrypsin Deficiency - just been diagnosed
Lung Health | Last Active: May 11, 2023 | Replies (44)Comment receiving replies
Nancy,
I would add http://www.alpha1.org
They have ppl u can talk to that can add to ur info and resources.
In your test report it should mention ur GENOTYPE AND LEVEL...I am an MZ,carrier, and my level is 112. M is the normal gene and z is the problem one. What is ur stage of COPD, did you smoke and when did you quit... it is the first thing that MUST BE DONE, NO OPTION.
IF I may suggest a Dr to talk with at mayo rochester.... Dr Patel, wonderful person.
Also there is a mindful breathing lab at mayo...call and talk with Joanna Holt, see if she can get you into a clinical trial.
Replies to "Nancy, I would add www.alpha1.org They have ppl u can talk to that can add to..."
Thank you Bill. I did smoke - I quit twenty years ago. I have no idea what my stage of COPD is. That is something I will ask when I speak to my doctor this week. I don't know what a "mindful breathing lab" is either. I obviously have a lot to learn. I have spent some time on the alpha1.org site. We have three grown daughters. Thankfully none of them smoke or have lung issues. I'm hoping it is not necessary for them to be tested. I probably won't find out if I am a carrier and what my level is for several weeks once they have done more testing.
Does anyone have any suggestions regarding what questions I should be asking my doctor? The doctor did Pulmonary function tests but I didn't see anything about a COPD stage. I know my Emphysema is only mild/moderate.
Thank you for sharing all of this information with me. I really appreciate it.
Nancy Jacobs
Great tip on Mindful Breathing, @waterboy
@nancyjac, you can read more about Dr. Benzo, Mayo Clinic and his work in COPD and mindfulness on the Health & Mindfulness Page on Connect here: https://connect.mayoclinic.org/page/mindfulness-in-health/
The page includes 10 blogs of mindfulness exercises as well as video and audio files for guided practice.
@waterboy and @windwalker are best suited to help you prepare questions for you pulmonologist. So smart of you to ask others what to ask because we often don't know what we don't know.
@nancyjac, Nancy, there are genetic councelers you can call and talk to about having your children tested. You can find the number on the Alpha-1 website. They say you should have your children tested because if they are a carrier, then if they should ever get married, their spouse will also need to be tested to see if they too are a carrier. Two carriers increase the odds that their offspring will also have it full blow ZZ.
I very obviously have much to learn here. I was under the impression that it wouldn't become a problem unless you were a smoker. I'm thankful that none of our daughters or their husbands smoke. Can it be an issue if they have never smoked? Sounds like I need to talk to a genetic counselor once I receive all the information from the testing.
I was told my Dr Patel in Rochester, I probably would have gotten COPD even if I didm't smoke... perhaps later and less agressive. Test test test
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Sorry I overlooked that you moved to fl.