Katemn....wow you are impressive....to have already switched to homemade ice cubes.....what a role model you are for us!
Had routine appt with local Pulmonologist.....the one who found the MAC from the washing on the bronchoscope he did in July. I said I had seen the ID dr he sent me to....and that she was ready to put me on the big 3.....but that I had explained to her that I would wait til January til I got a second opinion for my treatment from NJH Who specialized in NTM . BUt that I wanted to be followed by him and the ID dr. Not sure how he took it....especially when I explained that I was putting a hold on 2 other findings...tonsils that had grown back and possible sleep apnea.tdrell

Terri, I think you can take great comfort in the fact that you have taken GREAT Due Diligence in learning about your disease .. and that YOU are the very best judge on when/who will direct your care in your disease. If anyone I have seen on this Forum who has done their very best to learn and understand their options .. it is you. I have every confidence that you have gathered all the information you need to make the very best decision after you meet with specialists in January. Gather all the opinions .. think through them .. look at variations of opinion . question any variations of opinion for disease and treatment .. THEN make your final decision on treatment. I have not a single doubt you will do just fine.

Frankly I would be surprised if there is a big difference in MAC growth between now and January. But if I was you .. I would request a copy of the Bronchoscopy report that was done .. you will probably have to fill out some forms. I know my reports when my MAC was very active showed "Colonies-Many" then when I was better it did not. It would be helpful to you to understand just where you stand. PLUS you should request "Any and All" records from that doctor to physically carry with you to NJH. My experience has been that when your doctor's office just fax records .. I get to the 2nd opinion doctor ... and I'm told the records were "not received". Either the records went to the wrong department ..or who knows what. So now I always get a physical copy in my hot little hands and carry to any 2nd opinion appointment to avoid that problem. It is extra trouble but avoids a lot of issues.

When you decide to do it .. I would highly suggest you do the sleep apnea test. I was shocked when we found my husband stopped breathing 38 times per hour! I absolutely would have sworn he did not have an issue! Never dreamed it .. other than he snored. Now I am a BIG supporter of him using the Cpap machine .. making him read the stats on the heart attack and stroke issues of people who don't use their machine! You can google it .. it is an important thing to take care of. Keep us posted .. will be thinking of you! Hugs! Katherine

What's the purpose of ice trays!

Hello Cowboy, the purpose of the ice trays .. unfortunately! .. is because we have read one potential source of mycobacterium growth is in refrigerator ice makers. I am now "stable" since May 2014 and am making every possible effort to stay that way! Since we really do not know currently just how MAC is acquired for sure .. I am willing to go that extra mile to do what I can! Since starting to make the ice cubes the old fashioned way yesterday .. it really hasn't been THAT much of a hassle!

Below is an article on it: .. by the way .. how are YOU doing? Sending you a hug! Katherine
Reducing Exposure to Nontuberculous Mycobacteria
https://www.nationaljewish.org/.../NTM-TB-INSIGHTS-September-2015.pdf.aspx
by NTMI Routes - ‎2015 - ‎Related articles Sep 1, 2015 - High numbers of NTM are in refrigerator tap water and ice. In ... density aerosol (visible as a thick fog coming out of the machine) and thus are better ... Nontuberculous mycobacteria, both slow growing (SGNTM) and rapidly

Great info I will get me ice trays tomorrow. My ice maker is on the blink anyway. It makes sense you could easily get bacteria from ice makers.

.. as I mentioned .. I am just storing them in a gallon size Hefty freezer zip lock bag as they freeze to get a supply of them!

dear Katemn....just re read the lovely note you wrote above....i digest better when reading on old fashion PC vs my Ipad or iphone..

I totally agree with the need to have my own set of records on everything done to my body...and l have it...l admit the piles need better organizing but l have it...and do have the recent NTM stuff in separate colored folder...and separate envelope for all the CDS of the tests done...I brought them with when l went to the September workshop in Denver and made sure by email and phone that the Medical assistant ( at National Jewish ) whose job is to collect all of that and give to the Mycobacterium Section crew had everything. There is even a template they use to list all that is needed (which impressed me)

As I continue to have cultures here done on sputum ,I will need to get those records...though ironically the first one which grew Mycobacterium (because the ID dr wrote to order specific to "Mycobacterium vs just asking for a culture) was sent to National Jewish for sensitivity. I am not sure if that is the labs usual routine or because l had told the ID dr l would be going there!

Per your suggestion l have put on my list for my appt in January at National Jewish the question of do l need to have a sleep study.
On the list is also what about the tonsils that appeared on the bronchosopy after being removed 67 years ago...what should l do about them? figure that with 7 days of seeing Dr Heuitt or the Nurse practioner assigned to her...l will get a chance to get answers.
tdrell