New Diagnosis of MAC/MAI & I'm scared

Hi Sue... a little background on me. I am 34 in the military. Deployed 3 times to Iraq once to Afghanistan. Most likely got the broncheastasis from the burn pits as I am otherwise very healthy never smoked. Last 2-1/2 years I been coughing small amounts of blood so I thought I should finally tell the doc. They did chest X-ray and saw some abnormalities. Followed up by ct and found bilateral scarring on the lungs and multiple modules and cavities. They biopsied the suspicious nodule and diagnosed with MAC lung disease. My pulmonary doctor doesn’t seem to be very knowledgeable and referred me to infectious medicine doctor who I haven’t met with yet due to referral process. I’m trying to get second opinion from a different pulmonologist on everything. I’ve had no mention of treatment for the broncheastasis. My condition is getting worse by the day and my lungs feel like they are on fire. I’ve called twice asking about the medication prescribed with no answer. It is really disappointing. For now I am taking the ethambutol and arythromycin until I can get more answers. I just feel like time is not on my side and this isn’t doing what it needs to do to treat it. Thank you for the reply.

Hi Laura,
I am not surprised that military docs are unfamiliar with bronchiectasis - it's probably not prevalent in their usual population The infectious disease doc is probably a good bet for treating MAC, but whether the underlying condition require treatment too is a question for pulmonology. Not too familiar with the referral process for active duty military, but you may need to be seen "outside the system" for someone with bronch expertise. Good luck and keep asking questions. PS - the good news is that MAC is a relatively slow-growing infection, so the 2 drugs may be okay to keep it from progressing while you work through the process. There are medications and therapies to manage the bronchiectasis itself, to slow progression of damage and make breathing easier. The "burning" makes me wonder what else is going on...

Hi Sue... a little background on me. I am 34 in the military. Deployed 3 times to Iraq once to Afghanistan. Most likely got the broncheastasis from the burn pits as I am otherwise very healthy never smoked. Last 2-1/2 years I been coughing small amounts of blood so I thought I should finally tell the doc. They did chest X-ray and saw some abnormalities. Followed up by ct and found bilateral scarring on the lungs and multiple modules and cavities. They biopsied the suspicious nodule and diagnosed with MAC lung disease. My pulmonary doctor doesn’t seem to be very knowledgeable and referred me to infectious medicine doctor who I haven’t met with yet due to referral process. I’m trying to get second opinion from a different pulmonologist on everything. I’ve had no mention of treatment for the broncheastasis. My condition is getting worse by the day and my lungs feel like they are on fire. I’ve called twice asking about the medication prescribed with no answer. It is really disappointing. For now I am taking the ethambutol and arythromycin until I can get more answers. I just feel like time is not on my side and this isn’t doing what it needs to do to treat it. Thank you for the reply.

@laura34.....thank you so much for your service especially to dangerous war zones. Are you aware of National Jewish Health in Denver. They specialize in Mycobacterium Infections....but also have a section there called Deployment Related Lung Disease Program. According to info on Nationaljewish.org website....a description of that section says it is part of Veterans Choice Program. I went to NJH 2 years ago.....for second opinion....turns out the local treatment was totally incorrect. I just returned from 3rd annual follow up appt there....even more impressed. Take a look at their web site and put in the above section. Again....thank you for your service.. what branch? Tdrell

Tdrell,
Thank you for the information. I will definitely look into that. Unfortunately I am stationed in Fort Drum which is in Upstate NY so not sure how I may get the chance to go there being active duty stationed in NY. Definitely worth looking into esp for the depolyment related specialty. I am helicopter pilot in the US Army. Going on 15 years now. Glad to hear you have peace of mind at the NJH. That is a relief in itself!

Diagnosed with bronchiectasis on HRCT a few weeks ago and bronchoscopy has been ordered for this coming Tuesday. I am SO nervous about it that I am making myself sick. I hate the idea of having my throat numbed and not being able to feel like I can swallow. I freak out when my dentist drips a little anesthetic down my throat when I have dental work done, so I cannot imagine how this might be, let alone the rest of the procedure. The pulmonologist has already said that there is infection and to expect the antibiotic regimen. Wish me luck!.

Diagnosed with bronchiectasis on HRCT a few weeks ago and bronchoscopy has been ordered for this coming Tuesday. I am SO nervous about it that I am making myself sick. I hate the idea of having my throat numbed and not being able to feel like I can swallow. I freak out when my dentist drips a little anesthetic down my throat when I have dental work done, so I cannot imagine how this might be, let alone the rest of the procedure. The pulmonologist has already said that there is infection and to expect the antibiotic regimen. Wish me luck!.

Diagnosed with bronchiectasis on HRCT a few weeks ago and bronchoscopy has been ordered for this coming Tuesday. I am SO nervous about it that I am making myself sick. I hate the idea of having my throat numbed and not being able to feel like I can swallow. I freak out when my dentist drips a little anesthetic down my throat when I have dental work done, so I cannot imagine how this might be, let alone the rest of the procedure. The pulmonologist has already said that there is infection and to expect the antibiotic regimen. Wish me luck!.

@induh66
A bronchoscope isn't any thing to dread...try not to worry. I have had probably 5 now. My Doctor has used them as a wash for me beside to get sputum samples. I also consider myself an anxious person. You are well sedated and don't really feel anything in your throat. For me I felt the liquid swishing in my lungs but wasn't really uncomfortable. I think my Dr uses more liquid because it's a wash for me. I have asthma and my bronchial tree has become blocked. I usually feel much better afterwards in my case because it opens my bronchial passages. Others on the forum will probably chime in on their experiences.
Best wishes!