(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@mariierod123 I think that is the hardest part. "Being scared". I feel like I spend so much time being scared of what next. I pray for all of us that one day there will be a breakthrough in treatment. I am supposed to be contacted by a clinical trial that may be starting in the 4th quarter of this year. I am hoping the FDA sees this as an important condition to treat. I guess we have each other because only we can understand what the other is going through.

Yes i agree did they tell u they are also checking for cancer i did a broc but they say they scaped area and shows no cancer but cant be for sure without the guided ct i think its all about money snd its very sad

Like your last line ... (good) we have each other bec only we can understand what the other is going through

@jkiemen Hi Jo Ann, I had the same issue with my insurance. I did find a Dr at Mayo that I wanted to see (excluded from my ppo) and asked my primary care physician for a referral. Then called my insurance and told them the only Dr available on their list was not helpful and I needed a second opinion...It took a while but they made an exception. Problem was that they would not pay for tests done at the facility on the spot....I called the Dr office at Mayo and explained the situation when I made my apt. I asked what the Dr would most likely want to see in the way of tests and got my primary to write the script for a catscan. I had already had a bronchoscopy with a diagnosis of MAC. Just brought all of my paperwork with me and had the scan on disc. It was a roundabout way to get to Mayo but sure made me feel better and rest easier. I know that if I run into problems in the future, I will probably have to change my insurance to include the Dr at Mayo as I am most uncomfortable with the pulmonologist on my insurance. I am fortunate that my case is mild. At least my insurance was somewhat flexible. Good luck in finding a Dr to take care of you....If this doesn't work for you, I really believe that it is so important to trust the Dr that has direction over your well being and it might be worthwhile just to bite the bullet and go out of network. Wishing you the best. Kate

Randy Lipchik is my Pulmonologist at Froedert. He is really good, but very busy! I can’t get in for follow up after surgery until 6/21!

@angiejohnson I am glad you mentioned him. I did get a second opinion with him in Dec 2017. I will consider trying to get back in depending on what my biopsy shows. Doing the biopsy on Monday. So it will be several very stressful days after that waiting for the results. That is the worst part. Waiting and hoping.

@angiejohnson ...was your lobe removed via closed surgery or did you have the traditional open lobectomy???hope it heals well and helps the MAC situation....will they do cultures afterwards for follow up.?
And the Aurora ID doctor l went to in Grafton Wi was the one who automatically would have put me on the big three after one positive culture and no evidence on CAT scan....no would not go back to her ….also was sent in the Froedert system in West Bend a few years later (after I switched from Aurora Pulmonologist to Froedert one in West Bend) to a ID doctor ,.....a Dr Castro or something simililar….again he was nice and l think conscientious but not l sensed too aware of NTM protocol....wanted to treat me after one positive culture...and no CAT scan evidence....NJH for annual appt there again said "NO signs of infection" Tdrell aka Terri

@angiejohnson....does Randy Lipchik have a nurse practitioner you could see earlier than June?? My local Froedert pulmonologist here in West Bend has one and she l found is good...and has more openings in schedule and more time with patients....which Froedert doctors are not allowed by the system.
good luck Monday with the biopsy. Tdrell aka terri

@tdrell It sounds like National Jewish was the way to go.

@jo ann k good luck with biopsy.....and so far no bronchiectasis shows on my CAT scans,.....other stuff which is why l have follow up CAT scans based on Fleischner Society guidelines used by radiologists which really is for checking for Cancer ....over a ten year period no changes in the stuff (nodes and nodules )present....there is inflammation which they feel is from the reflux...l guess because l have never smoked there has been no mention of biopsies and the fact that there has been no enlargements in recent years ....l went to a Dr Claudia Altmann an ID doctor at Grafton Auorora once but went for second opinion at NJH and did not go back to her....again good luck with biopsy
tdrell aka terri