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Tue, Apr 23 12:19pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@jkiemen hope you are continuing to do well after the lung biopsy….not doing anything strenuous at work and taking care of yourself….was it under general anesthetic or conscious sedation? was it thru mouth or side of chest?? How long before results come back??
As far as nitrous oxide as a treatment….there were a few cases that responded well in Israel a few years ago….I recall Dr Daley from NJH told the audience at a NTM patient workshop….the next research was to be in Canada….he seemed sorta non enthusiastic when mentioning it….this was a few years ago though…the information just shared here is more up to date l believe…
tdrell

Fri, Apr 19 11:56am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@jo Ann K….yes for me NJH was the way to go….l brought a lot of my previous tests which they accepted without repeats…..they examined my whole self…..wholistic….found out that after 30 years…l do not have asthma….other stuff but not asthma…my medicare and supplement covered everything and continues to ….no bills….it is medicine done as it was years ago….and with the specialization in NTM/ mycobacterium section. Had my insurance said NO….l have found one should fight /protest and try to get them to change….it is worth it…they count on people not protesting….see "Sicko" by Michael Moore…..tdrell aka terri

Fri, Apr 19 11:46am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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

Fri, Apr 19 11:15am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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

Fri, Apr 19 11:02am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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

Thu, Apr 18 7:21pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@jo ann k….l am from near Milwaukee in Wisconsin…,,,the Aurora system infectious disease dr was about to put me on the big three antibiotics after one culture of MAI taken on bronchoscopy…..l had already gone to NJH workshop on NTM in Denver….coincidently was visiting daughter in Denver when the workshop was being held. So I told the ID doctor from Aurora that l was getting second opinion…..lthink there are a few more in this group from Wisconsin…what did they do????
By the way….on the second day of the 2 week scheduled visit to NJH they told me l DID NOT HAVE the infection but my cough and the positive culture was due to
-we in Wisconsin are considered by ATS as hot spot for NTM….it is in soil water and sometimes air
– due to my GERD l had aspirated the MAI from stomach into lungs hence found on bronchoscopy….but no signs of it /bronchiestasis on CAT scan.
I am followed annually and now every two years to be thorough and l have other stuff they follow…tdrell aka terri

Fri, Apr 5 12:13pm · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

@danielad ..Dee….interesting article re study in Korea showing those with Bronchiectasis and COPD not getting lung cance…I skimmed it so may not be too accurate……thoughts after=
-are 99 subjects adequate to draw serious conclusions?
– are inflammatory chemicals produced by body when bronchiectasis
/COPD is present providing protective mechanism against cancer cells?
Tdrell terri

Thu, Apr 4 7:32pm · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

@danielad…Dee…to add toMerry’s great response to your question “ what is a spacer?”…..it can also be used for other types of inhalers ….I use for bronchodilator ventolin. Terri tdrell