About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (20)

13 hours ago · Good MAC Doctor Recommendations in MAC & Bronchiectasis

@windwalker Thank you! I did see this doctor on the NTM site. I am seeing a Pulmonologist familiar with MAC, but looking for a 2nd opinion on length of treatment. So I was thinking ID doc would be a good second opinion. I will check into this doctor. I’m just surprised there aren’t any listed in Milwaukee.

1 day ago · Good MAC Doctor Recommendations in MAC & Bronchiectasis

I am looking for a good MAC doctor in Milwaukee, WI. Thank you!

Thu, May 9 7:39am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@sounder27
I have been on Arikayce since Jan 14. It has dramatically reduced my MAC, evidenced on chest CT. I had a lobectomy 4 weeks ago to get rid of the majority of the disease and damage from it. I have only had loss of voice as a side effect.

Sat, Apr 20 9:10am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@jasmine321 I don’t know if this is my second, or if the first never really went away. I was diagnosed, treated for 2.5 years, then “clear” for 6 yrs. My right middle lobe was filled with infection and bronchiectasis. I was scared also. They usually have the chest tube in for a day after surgery. It’s uncomfortable- probably worse than the incisions, but tolerable with pain meds and muscle relaxers. I should have gone home after 2 nights. Unfortunately when the PA pulled my chest tube, air leaked under my skin and I got subcutaneous emphasema, or crepitus. They had to put a chest tube back in to suction out the air. That caused me to be hospitalized 3 extra nights. I just had to stay positive and keep telling myself this will be over soon. You can do this!

Fri, Apr 19 7:18pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Ok I am not losing it, I did reply to you! Haha

Fri, Apr 19 7:16pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@jkiemen I thought I replied to you, but I’m not seeing it. I see Dr Randy Lipchik at Froedert. I would like to get an ID doc on board to make sure we get rid of this. I was first diagnosed 10 years ago at 37 y/o. I am doing really well after the right middle lobectomy. I’m 11 days out and walked .8 miles today! I still have mild pain that Tylenol and muscle relaxer has helped with.

Fri, Apr 19 2:33pm · first doctor visit in MAC & Bronchiectasis

@windwalker I already had the lobectomy on April 8. I would consider Mayo for second opinion on my continued treatment.