1. < MAC & Bronchiectasis

Just diagnosed with MAC with a cavitary lesion. Terrified.

Posted by justaussie @justaussie, Aug 14 12:12pm

After coughing from December through March and my Dr telling me it was allergies - went back and got an exray - they thought it was pneumonia. Had another exray in June and found it hadn't cleared, so CT scan, the bronchoscopy to see what the infection was. Devastated to be diagnosed with MAC with a 4.5 cm cavitary lesion. I'm terrified of starting the antibiotics - with all I've read. My eyesight has deteriorated alot in the past year due to age (I'm 59) and I have been a pretty heavy drinker for 10-15 years (3 to 4 glasses of wine per day) so very worried about liver damage - though my recent test shows it's okay. I am feeling so overwhelmed - can't even figure out what opthamologist to see. My infectious disease doctor though highly rated is cold and seems uncaring and too busy. I don't feel like I have an advocate to oversee all the moving parts of this. I have an appointment with a pulmonologist in September - but not super happy with who it is as not alot of experience - but couldn't get in with the recommended ones til January. Feeling too scared to start the antibiotics as terrified will change my life forever. I have mild/moderate MAC - but already noticing the cough is starting to happen a bit more often and worse. Does anyone have advice how to deal with this - and any recommendations of infectious disease doc, Pulmonologist, Opthamologist in the Arlington VA/Washington DC area. Thanks for listening.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 28 7:05pm
In reply to @justaussie "Thank you for your message. I've been prescribed daily medications due to the cavitary lesion I..." + (show)
@justaussie

Thank you for your message. I've been prescribed daily medications due to the cavitary lesion I have. I know have to have the eye and hearing tests. I just want to run away to be honest. Doesn't sound like there's much to look forward to. I'm terrified of the big side effects. I've got the drugs to start - but too scared to take them especially not having a doctor I like/feel actually cares about what happens to me. Also - the doctor and I discussed whether I should stop drinking for 2 weeks before starting the meds - so thinking maybe I should do that, but keep putting it off - as once I start - doesn't seem like a good idea to stop unless dangerous side effects happen or can't tolerate. What I don't understand is how is it that something like this hasn't had more research over the years to find a better treatment option. Sounds like this has been the standard for a long time. I wonder if it's because so few cases compared to diseases like cancer that they don't put as much money into research. Very strange - when I also read that there has been a significant up tick in cases in recent years. Hoping against hope that they come up with a new treatment in the coming years that is much better than current option. Also - I wonder why more people don't have surgery if the treatment is not tolerable. It seems from what I've read - people that have surgery seem to recover/stay MAC free for much longer. Thanks for your kind words. Here's hoping for better days ahead for all. Any suggestions on how to find a MAC expert pulmonologist in the Washington DC area most welcome. I have an appointment with a young pulmonologist in September - earliest I could get - but feel I'd really like someone who has expertise with MAC.

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Hi - We haven't heard from you in a while - have you started the antibiotics?

REPLY
irene5 Irene Estes | @irene5 | Aug 29 12:09pm
In reply to @alyssa999 "It is quite scary being diagnosed, I am young and have a 9.2cm cavity In my..." + (show)
@alyssa999

It is quite scary being diagnosed, I am young and have a 9.2cm cavity In my lung. Been on ethambutol, clarithromycin and rifampicin for around 3 months now and haven't had any side effects apart from the orange tears etc it can cause... Here if you have any questions to ask as I know it's very scary being told you have a hole in your lung

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First of all I am so very sorry you have this. But knowing it’s an infection as the cause, (MAC) is a better thing than a cancerous tumor. I understand the fear associated with all of it. Not sure I understand why you would want to continue drinking. Or is it you know you should stop to start the meds, and you are fearful of the meds? Alcohol causes GERD which basically can lead to MAC. I’m sure a drink of wine every now and then may be ok , but you should consider becoming a tea totaller before and after the meds . I used to enjoy a shot of Brandy for years at night for a number of reasons. ( ten kids and teaching for 43years, and we used to live where there were two seasons - winter and not winter- Brr). When I heard that about MAC and GERD and alcohol I never had another sip. When friends would ask me why I didn’t drink I just said , “alcohol makes me pregnant” and with ten kids ( even though 6 are special needs children from China) they never asked me after that. Seriously, a cavity is bad, but there are things we can do to help ourselves. Taking the Big 3 is one of them. And there are new medications out there. The reason it’s not heard of as often is because research for cancer is big- not so much for some lung diseases that are rare even if more people are getting diagnosed. And then there is the money issue. More and more doctors are learning about NTM by necessity. Arikayce cured me of MAC after several years, but all that depends on your ID doctor - not a pulmonologist. You need an infectious disease doctor as well as a good pulmonologist and preferably at the same place. Hopefully someone on this site can steer you in that direction. I would imagine DC has top notch ID doctors and pulmonologists. Try not to be afraid- I know it’s hard - trust me I know that !! Being informed is way better than worrying!! Wishing you peace of mind and good medical care that cares about you. ( irene5)

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laborday24 | @laborday24 | Aug 29 7:54pm

I took meds for two years. No issues except drug resistant. Going to national Jewish health in Denver. They specialize in respiratory issues

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laborday24 | @laborday24 | Aug 29 7:59pm
In reply to @sueinmn "First, we all want to "run away" from scary diagnoses at first - whether MAC, diabetes,..." + (show)
@sueinmn

First, we all want to "run away" from scary diagnoses at first - whether MAC, diabetes, cancer,
Alzheimer's - it's human nature to protest "This can't be real."

Treatment is not easy, but it is definitely tolerable. A piece of cake compared to having part of your lung removed and recovering from major chest surgery. I wish there were far fewer "horror stories" floating around - many of us have found a path to staying healthy by continuing airway clearance after we finish the antibiotics.

As for waiting to start, if the ID doctor feels it is serious enough for a 7 day a week regimen, that's really not a good idea - the cavity will continue to grow, which means more lung tissue is being destroyed, and when it does heal you will be left with more scar tissue.

Don't discount your "young pulmonologist" - as a recent grad, they are more likely to research things and ask questions than docs who have years of experience. Even after you have seen them, you can always wait for a referral to one of the experts.

There is a great deal of research currently going on about Bronchiectasis and MAC - it was slow to start because of the limited number of people affected, but new treatments are coming. The problem is, you are sick now and cannot wait, so need to take the best available path at this moment.

Will you actually stop your wine this weekend, and make audiology and eye appointments?

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What was your treatment. I am going to national Jewish health. On meds for two years. Drug resistant

REPLY
suzyqueue | @suzyqueue | Aug 30 7:33am

At my diagnosis 6 years ago, I had a 10 cm cavity. Started on the Big 3 antibiotics then after a year added inhaled Arikayce. This treatment shrunk the cavity to 4 cm. There was a plan of removing the upper left lobe where the cavity was but since I have spots of MAC on the other lung and was staying stable with the treatment, we decided against it since the risk was worse. I'd definitely have an infectious disease doctor and pulmonologist involved in your treatment. There's other meds etc that can help you with the symptoms as well especially if you have any COPD or other issues.

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Rick | @rstel7272 | Aug 30 7:44am

Suzy, I too decided against the lobe removal recommendation from NJH, moved to sea level and feel better than I have in 15 years. (So far). My 6cm cavity has remained stable but I am treating for aspergillus and the scar tissue is ever present in that cavity

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camilleups | @camilleups | Aug 30 9:01am

Hello justaussie,
I was just diagnosed a year ago after being misdiagnosed like many others here.
Luckily a friend told me about NJH in Denver, I live inMaine 6months and Az 6 months.
It is out of the way but sooo worth it.
I just looked for a facility near DC and found:
Center for Nontuberculous Mycobacteria and Bronchiectasis,
at the John Hopkins Bayview Medical Center
Second Floor
Hopkins Medical Circle
Baltimore, Md 21224
410-555-0100
Please look into this as many of us on the site have gone to major centers like this
and had access to every type of expert in this field.
Yes there are MANY spread all over this country and many people travel far to get to them.
Baltimore is a short trip compared to what many of us do.
You will be pleasantly surprised with the care you will receive. I was blown over with it!!
Please reach out to one of these great facilities.
YOU deserve it.
Oh, and stay connected to this forum.
I get my daily fix of support by just reading and knowing everyone on it is here 24/7.
God Speed!

REPLY
mch (Marycarol) | @mch | Oct 19 9:54am

Since assume you are in the DC area, wondering if Johns Hopkins is within a reasonable distance for you. After seeing a pulmonologist recommended by my primary care physician for 18 months, I recently went to the Johns Hopkins NTM Center for a second opinion. I was very impressed with the entire team and plan to stick with them. I saw Dr. Lippincott. My local pulmonologist seemed to be very caring, and I have no doubt he is a good pulmonologist in general, but he has not had that many patients with Mac so his experience, like many docs, is limited. He put me on the big three, but I had an issue early on with ethambutol affecting my vision so that was stopped. He added Arikayce. I did have two relatively small cavities at the beginning, and one of them has since collapsed into a soft nodule, which I assume is progress of some sort. The one thing he never addressed was the importance of airway clearance. When I went to Johns Hopkins, I was very happy that Dr. Lippincott addressed it right upfront in very strong terms as being very important. He also talked about the importance of getting my Gerd under control as it is known to be a direct contributor to Mac infections. All of this made me feel like I could be very confident in Johns Hopkins since everything Dr Lippincott and his team talked to me about was things I had read repeatedly on this forum and others.

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