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Visit to National Jewish Health in Denver, CO
MAC & Bronchiectasis | Last Active: 8 hours ago | Replies (76)Comment receiving replies
@djwork1 With MABC diagnosis, I definitely recommend NJH. Thay have, most likely the best NTM lab in the US-not to mention NTM specialists. A good local Dr would encourage you to go. Both my local ID and Pulm. Dr told me that NJH is the best and were very encouraging. Have you started treatment? Are you nebulizing with 7% saline 2/day? Do you know your NTM count? Has your doctor done a thorough Susceptibility test? When I was diagnosed with Abscessus, I was put on antibiotics too soon. Fortunately, I went to NJH just 3 weeks into my anti biotic treatment. The first few days, I was there, my ID doctor cut my Arikayce down from 7 days to 3 days per week. My Linezolid dose was literally cut in half after a series of 3 blood tests showed how the Linezolid was being metabolized. Some have their dose reduced by 2/3rds. I was also on Nuzyra which was being changed due to insurance denial. I was also recommended to switch to inhaled Amakacin. I did not have any tests that required anesthesia like ROZ. Most of my tests were GI related, CT, labs, PFT, asthma tests (HNO and methyl choline challenge) and consults with respiratory therapist, speech therapist, etc. I also met with my Dr the 2nd week (I was there 8week days) to review all my tests. My NTM count was 37 (400 is considered high) and my nodules were getting smaller. I was able to stop all meds and now in "watch and wait" period. I'm now testing negative and think the 7% nebulizing really helped (which my local Pulm had me start immediately after my diagnosis in 11/2024). Though I was an outpatient, I also had a designated hospital room-which was really nice.
Replies to "@djwork1 With MABC diagnosis, I definitely recommend NJH. Thay have, most likely the best NTM lab..."
@kathyjjb
Hi Kathy, I am thinking you might live in Denver and wondering if you would share your Pulmonary , PCP, and ID doctors names with me?
My story is I am changing Insurance from Kaiser to United Advantage Senior PPO. plan with Pera since I was a teacher. I'm kinda scared doing this since I don't know how soon I can hook up with doctors on a new plan and I do have meds to fill. I liked Kaiser a lot but Pulmonary lacked when I need them. I was diagnosed with bronchiectasis 5 years ago. I was very sick for 8 months and he keep giving me antibiotics 4 different ones and the cough just came back, I lost 13 lbs. was extremely week and had a life threatening sepsis bacteria that wasn't responding to the medication. My kids intervened and took me to Rose hospital, I found out about the sepsis and after 6 weeks found out I have MAC. Kaiser won't send me to NJH , there fore I am changing Insurance to one that has NJH in network. Sorry so long to ask for doctor recommendations.
First time writing on this site but have enjoyed and been helped often by people who have shared their story. Thanks. JoAnn
@kathyjjb I just got diagnosed, and my anxiety is crazy from worrying about this...and what doctor/center I should go to. The Big Three scare me. Can you comment on my main choices...Mayo Rochester or National Jewish Health, I have been a patient at Mayo, and my local pulmonary doctor is with MUSC in Charleston. I just got the bad news 12/23/25
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Thank you for your quick reply. I haven't started treatment yet. I was
diagnosed very early. Other than a cough, I have no symptoms. My asthma was
out of control and it's getting much better now with treatment. We're going
to do another CT scan in December to see how much my nodules have changed.
Dr said she isn't concerned till nodules are 6mm and mine are 3 and 5mm
respectively. Nobody has said anything about an NTM count.
Were you counseled on nutrition?
I'm concerned about the expense of going to NJH in Denver. Did your
insurance cover this?
I'm just beginning this journey and trying to learn as much as I can about
it.
You've been very helpful. Thank you. I hope you stay negative.