In shock after MAC diagnosis

No ,I am going to anywhere I can cause I refuse to dye in 15 months due to heart failure cause of my lungs. I am going to re appeal to mayo. Work on trying to live ,just talking my lips turn blue.This is very hard to take in but my lungs are not better from the scarring and fibroise. Its a lot to take in and know there is not a lot you can do and at 43 your just getting to those best times of life to slow down and be thankful in life. When I was 15 ,I wished I could be grown 21 and live it up and your always going and don't take time to see the real good things. So DR. LEE said I was the first case of BOOP for mayo clinic, so only God knows what lies ahead for future

@kp5450121 Have you checked National Jewish Health in Denver? It appears they treat Bronchiolitis obliterans. Looks like you should be on corticosteroids and immunosuppressive therapies....then transplant. I hope you are getting some sort of treatment now. You might try contacting them...if they will not take you maybe they can direct you somewhere else. They are tops in lung care. Also...please use the @alleycatkate when responding so I will see your response.

Hey I am Jewish too so thank you

I have bronchiectasis for 12 years, and lived normal life. About 1 year Cat Scan and broncoscopia tested + for MAC. 1 pulmonologist from a renowned hospital in New York does not want prescribes medication, which may cause me more harm than good. I am planning a 2nd opinion soon. Where? I think I should be treated for the disease now , and don’t wait to get very ill and begin treatment.

Hi sylvermound, You mentioned that your doc said you might have gotten the MAI from gardening, and our mulch is one of the best places to get mold from. Also digging in the soil can release different toxins from bird droppings, that can cause hystoplasmosis that can scar the lungs and cause a fungal infection. I love to garden, but sometimes do wear the surgical type ear loop mask and try to do it in the late day or evening hours. Best wishes with your bronchoscopy.

@baz10 My docs and the NIH say to use a specific type of mask called N-95 to protect against small particles.This is actually a disposable respirator with a filter device in the center that the air flows through, and in my opinion it is not so easy to breather through, but it is far more effective than the type you see everywhere. It needs to be fitted carefully to your face, and replaced after 6-8 hours of use or if it gets wet or torn. These are widely available on-line, and through big-box home improvement stores, and sometimes at Walgreens. I get them at the local big-box store in a pack of 10 for $20, which lasts my husband and me all season and we both wear them.

Hi @kp5450121, I believe that you may have landed in the wrong group on Connect. The discussion in this group are focused on MAC & Bronchiectasis. You will find members talking about Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) and Cryptogenic Organized Pneumonia (COP) in the Lung Health group here: https://connect.mayoclinic.org/group/lung-conditions/

Here are some specific discussions about COP and BOOP that I encourage you to read and take part in:
- Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) https://connect.mayoclinic.org/discussion/boop-pneumonia/
- Cryptogenic Organized Pneumonia (COP) https://connect.mayoclinic.org/discussion/cop-1/
- Obliterative Bronchiolitis (OB) v. ILD or CLD??? https://connect.mayoclinic.org/discussion/obliterative-bronchiolitis/

I had replied to a MAC person on some information and they told me about a place in Denver. Sorry I was CURIOUS on MIC ,MAC

No problem, @kp5450121. @alleycatkate recommended that you look into contacting National Jewish Health https://www.nationaljewish.org Like Mayo Clinic, they excel in pulmonology.

There are also surgical type masks made by 3M than are 99% effective at filtration of very small particles of 0.1 microns. That's as good as HEPA filtration in the paper filter material. They have ear loops and are latex free. This wouldn't fit as tight as a respirator or a dust mask in sealing out stuff, but they are comfortable and do a pretty good job. I have asthma and find that these reduce exposure and help my allergies. You can buy them online. I sometimes wear 2 at the same time for extra protection and sleep with them on too. I keep them in my car for when I drive past smoke or dust and I can put them on quickly. They are 3M #1820 disposable Procedure Masks and come in boxes of 50.