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Diagnosed with MAC but not being treated
I was diagnosed with MAC in October 2018. My pulmonologist discussed treatment but wanted to conduct a sputum induction procedure to determine bacterial load. The load was low enough that he felt we could wait on treatment. I saw him for a follow up this week and he did not recommend treatment because my symptoms are minor (shortness of breath and occasional fatigue) and are not progressing. He indicated treatment is symptom driven and he doesn’t recommend starting treatment unless the symptoms become debilitating. He wants to see me again in 6 months.
Has anyone else had this type of recommendation? Although I am very happy not taking the medications I don’t want to let the infection to progress to a dangerous level and regret not being treated sooner.
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@ginak what are the clearance exercises you do twice a day? You say Aerobika. Do you also nebulize? I found the 3% too strong. I'm going to request a smaller amount
@cressida92 Do you do Autogenic Breathing or Active Cycling Breathing exercises to help move the mucus up by getting air, hopefully, behind the mucus to help push it up.
Aerobika is a medical device, you can google to see it, if you aren't familiar with it.
Barbara
@blm1007blm1007 I don't know first things mentioned. New pulmonologist wanted me to get up sputum. Albuteral nebulizer, saline 3% and Flutter. I Assume that's what they meant by airway clearance. This is all new to me. I'm about to have a bronchoscopy to see if it's Mac or aspiration.
I'll ask about the ones you mention. I gave bronchiecstasis which is dry.
@cressida92 The first to things can be found on the internet showing how to do them...They are methods under the category of Air Way Clearance.
Yes the nebulizing will help to loosen the mucus and as well somewhat help with bacteria.
Nebulizing is generally speaking the first thing you do to loosen the mucus,
The Aerobika is somewhat similar to the flutter device. Most specialists, pulmonary specialist, that concentrate on Bronchiectasis patients such as National Jewish and Tyler recommend the Aerobika due to the ability to clean all parts well.
After the nebulizing and PEP device (Aerobika or Flutter) it is suggested that you do further methods to get the mucus up and out. Autogenic Breathing, Active Cycle of Breathing, Postural Drainage and Percussion and finally Huff Cough. If you have GERD/ACID REFLUX... one might/should not do postural drainage.
Much of all I have mentioned can be found on the internet. It takes time to learn all and it can be overwhelming...but with putting and giving time to learn and understand all it does come together....finally.
Mayo Clinic Connect is here for us and helped me a great deal by reading the different posts on the threads.
Barbara
@blm1007blm1007 Thank you so much!!! This is a great start. A new pulmonologist at Penn said to first do the Albuterol nebulizing, then Saline hypertonic 3% nebulizing and then Flutter. No one showed me the huff that people are talking about. They gave it to me quickly so I have to figure it out on my own.
@cressida92 So you do nebulizing and Flutter and no saline? I'm going to look all those things up, I think I have to find a good Respiratory Therapist to help me.
@cressida92 I am not sure if you were asking me your question about nebulizing saline.
I do nebulize 7% saline. For me I do not do Albuterol. I was not told I had to use it. .
My understanding of when to do the Albuterol is just as you said.
As you may know, there are others on Mayo that go to a facility in/at Penn.
Yes, much of what I learned I had to figure out mostly on my own ......and much help came form those on Mayo Connect.
Barbara
My case is very much like yours. I'm on Dupìxent injections twice monthly and am followed every 3 months with a CT scan every 6 months. I'm 81 and my system can't take the usual medication. I'm doing well.
@alleycatkate Which antibiotics? The last two times I used Ceftin and Azithrymycin. I'll never take the big 3 because I'm 82. I worry about resistance.