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rozie83 avatar

Visit to National Jewish Health in Denver, CO

MAC & Bronchiectasis | Last Active: 8 hours ago | Replies (76)

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Profile picture for djwork1 @djwork1

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.

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Replies to "Thank you for your quick reply. I haven't started treatment yet. I was diagnosed very early...."

@djwork1 Thank you! I've now had 4 negatives but in August had a new nodule-whatever that is. I'm getting rechecked in a few weeks to see if it's still there. Yes, my insurance covered it. I have a Medicare advantage plan and NJH was in my provider list. I contacted my insurance and asked, and I also spoke to NJH. It was all covered and just had to pay the copays. I also know of a home that is very nice and though she rents on Airbnb, since she is a friend of a friend of mine, she gives me a great rate-so I don't go through Airbnb. I think it was about $100 or $110/night. She does allow pets, so I store my pur-air filter there-which you could use. Plus she super cleans it prior to her NJH renters. Yes, I was counseled on Nutrition-sorry forgot to mention that-but we mostly talked about what I can't eat while on Linezolid, moot point now. So, it sounds like you don't have cavity disease. If that's the case, my biggest recommendation is to nebulize with 7% hypotonic saline. My insurance pays for the 4 ml vials but needs a script. Spontaneous culture conversion is typically 15% (if my memory is correct) but there have been that have shown up to 25% while nebulizing with 7% saline for those with nodular BE (not cavity disease). Unfortunately, I only found 2 studies and the participant size on one was too small to come to a conclusion. Currently, a new study at Univ of Oregon will have 100 participants.