MAC lung cavitary disease: Looking for success stories

@alyssa999 Wow! That must have been scary for all of you.

One thing I would like to stress is the advances that have been made in the treatment of MAC over the past 5-6 years. Additional medications are available, and there is a much better understanding of the importance of daily airway clearance in clearing the infection. For those whose cavities cannot be reduced by medication, there are less invasive surgical procedures available.

We have an entire support group here on Connect devoted to MAC and its companion disease Bronchiectasis. A thousand members with a wealth of experience and empathy to share.
https://connect.mayoclinic.org/group/mac-bronchiectasis/
Here is aa current discussion specifically about cavitary MAC:
https://connect.mayoclinic.org/discussion/just-diagnosed-with-mac-with-a-cavitary-lesion-terrified/
One thing I would like to stress is the advances that have been made in the treatment of MAC over the past 5-6 years. Additional medications are available, and there is a much better understanding of the importance of daily airway clearance in clearing the infection. For those whose cavities cannot be reduced by medication, there are less invasive surgical procedures available as a last resort.

I think years ago, the situation was much worse, but we have members here living well in spite of their cavities, some who have had them for 10-15 years.

I invite you to do a little reading, then come back and ask whatever questions you have - we're here for you.

Diagnosed with Mac cavitary form back in may, started on the big 3 in June/july. Breathing issues have gotten worse. I honestly cannot tell whether it is my anxiety causing me to feel this way as I have been thinking about what if I'm not there for my kids, I'm only 25 and my little ones are 7 and 3. I don't want this to kill me and I just keep thinking what if it does? Cavity last measured at 9.2 cm which freaked me out... Is there other options to eradicate the disease and heal the lungs. I do feel somewhat of my breathlessness is from panic/anxiety but I'm just not sure anymore 😭 I want to be around till my kids are older...

Alyssa, with two little kids I bet you're very busy, and having the added stress of MAC isn't helping at all. Do you have help and support from family or friends to help you get through this?

Have you talked to your doctor about worsening breathing issues? Are you working with a pulmonologist? Sometimes there are difficult side effects we need to manage, so good communication is key.

For today/tonight will you please try something simple to help when you feel breathless?
First, have someone watch your kids for a bit, or turn on a video to entertain them.
Then sit quietly in a firm chair (like a kitchen or office chair), relax your neck, shoulders, arms and back and close your eyes.
Think of something pleasant like warm sunshine or a cool breeze.
Take a deep breath in through you nose, hold for a count of 3, let it out slowly through pursed lids. Relax. Repeat 5-10 times, trying to breathe a little deeper and exhale a little longer each time.
Slowly open your eyes, shake out your shoulders and check - do you feel better?

If so, repeat this as often as you can, until it becomes automatic to sit down and do it whenever you feel that anxious/breathless feeling coming on.

Your kids are old enough to teach them "When Mommy sits down and closes her eyes, she is working to make herself feel better. Please be nice and play quietly until she opens her eyes again." Then, the hard part, ignore "Mommy!", spats and their noise until you are done.

Can you tell me how often you are seeing or messaging with your doctor or their staff? Is there a plan for when you will have your next sputum test or scan?

You get your Mac treated and the cavity will close. You are young and otherwise healthy. I waited too long for a diagnosis and the Mac created cavity developed scar tissue. But that was 6 years, I still have the cavity and still active

Allyssa999
Yes anxiety and depression hit us all sooner or later but with the treatment and support of your family and people here you will accept finally the illness and will go day by day. Your children will also know that you “do the treatment”and will learn to play. But please even if you don’t have now, look for a doctor who knows about your disease- i hope you are lucky to have one already. You are not alone, ask questions here, practical things that help you live through all. My best wishes

Know that we will all be rooting for you in your journey with all you have to concern yourself with.
Please consider what Sue said if you do have the ability to reach out to others for help.
I know that often I have had to specifically take time out, give myself time, to reflect and think in order to figure routines etc. etc. that will work. Hope you find your way to the best routine for yourself with all you have to do for yourself and family. Bronchiectasis is NOT a death sentence, but it does require us to find our way to doing what we need to do for ourselves so that we can do for others as best we can.
Thinking of You.
Barbara

I had two cavities (both small 1-2 cm) last September. I began IV Amikacin along with the Big 3. I tolerated the IV 10 weeks before tinnitus set in. I was then taken off the Amikacin. My CT scan at 10 weeks showed that one cavity was eliminated and the other was greatly reduced. My CT scan 3 months later showed no cavities. I am currently testing negative and expect to be off the Big 3 at the end of the year. I am wondering why you weren’t started on IV Amikacin or Arikayce as soon as they discovered the cavity? Please research protocols. There are many Facebook groups (MAC, Lung Matters) websites (NTMir) and podcasts (NTMtalk) that can provide you with information. There are also conferences throughout the year that can often be attended via zoom. NTMir has a list of support groups that meet by zoom monthly also. Best of luck.

Hi Acelaplac,

It is really nice to hear your success story. It sounds like you made the right decision. Great for you! My case is similar to you, two small cavities (1-2cm), but one has a thick wall. Usually cavity without thick wall shrinks faster. Your cavity probably does not have a thick wall, I guess?

IV amikacin is scary and you are really lucky and courageous! But I heard they work really well on MaC infection.

I also heard some patients' cavities go away but come back later. I really want to understand why. 😕
Thanks and hope to receive your feedback 🙏

Thick or thin wall wasn’t mentioned. The Amikacin wasn’t bad except for developing tinnitus after 10 weeks. The minimum prescription time is 2 months. I had Mac without cavities 10 years ago. I took the Big 3 for almost 2 years. After treatment I did not continue my airway clearance techniques. I ran everyday so I thought that was good enough. I was stable for 7 years. Mac came back with cavities after being treated with cortisone for a frozen shoulder and a case of Covid. I am not sure whether these occurrences or lack of ACT’s caused the return. Probably a combination of all.

Thanks so much for your details. 😊 I really appreciate it. 🙏
My friend's mac/ cavity came back after 7 years too. And another patient says her MAC recur after six years. Probably our lung is prone to bacteria infection so it always back. I am not sure about your weight but slender type is also prone to bacteria infection. In addition, I heard running reduces the muscle , probably weight lifting is a better exercise because it builds up muscle.

I am working very hard on gaining my weight right now. I eat throughout the day with nuts, seeds, whole milk yogurt, miso soup.....

I hope your mac will never come back again, another success story. 🙌

By the way, you don't have any autoimmnue disease or cystic fibrosis right?

Thanks again for your feedback!