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MAC with shortness of breath

Posted by deb62 @deb62, Feb 18 9:08pm

I was diagnosed with MAC two years ago. My side effects are: I’m very short of breath just doing small things around the house and I have a bad cough. My pulmonologist & ID does not want to start the Big 3 meds until if or when it gets worse. Asking if anyone has this shortness of breath? It has changed my life completely because I was a fairly active 60 yr old before MAC.

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rizzinator | @rizzinator | Feb 21 9:50am

Does anyone else have high pulse rate when moving around which in turn lowers oxygen even though I am on oxygen 24/7. I can’t even make to the bathroom without the pulse rate jumping up and making it hard to breathe.

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rizzinator | @rizzinator | Feb 21 9:54am
In reply to @scoop "Airway clearance can be helpful with shortness of breath. Many of us here use 7% or..." + (show)
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Airway clearance can be helpful with shortness of breath. Many of us here use 7% or 3% saline in a nebulizer, preceded by two puffs of albuterol or (nebulized, albuterol or levalbuterol.) Active cycle of breathing and huff coughing can help rid the airways of excess mucus, and also help to combat infection. Some of us also use the Aerobika to help with this process. Generally, twice a day is prescribed. How is your airway clearance going?

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@scoop
I am doing this 3 times a day but still cough all day. Plus I have lost my voice I guess from extreme coughing.

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pacathy | @pacathy | Feb 21 3:48pm
In reply to @rizzinator "Does anyone else have high pulse rate when moving around which in turn lowers oxygen even..." + (show)
Profile picture for rizzinator @rizzinator

Does anyone else have high pulse rate when moving around which in turn lowers oxygen even though I am on oxygen 24/7. I can’t even make to the bathroom without the pulse rate jumping up and making it hard to breathe.

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@rizzinator I suspect the high pulse rate is the heart responding to the body’s need for more oxygen when you are active. You could ask doc to have his nurse or a tech check your saturations with walking. They’d be able to determine if you need increased oxygen with activity.

Note-it’s important not to increase oxygen without doctor’s ok who is familiar with your health.

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pacathy | @pacathy | Feb 21 3:50pm
In reply to @mariegrace "I am getting shortness of breath in the morning. I have MAC and had to stop..." + (show)
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I am getting shortness of breath in the morning. I have MAC and had to stop the drugs because of side effects.
Ask your pulmonologist about pulmonary rehab.

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@mariegrace I agree with your excellent suggestion for pulmonary rehab.

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@ling | @wangling | Feb 22 8:13am
In reply to @rizzinator "Does anyone else have high pulse rate when moving around which in turn lowers oxygen even..." + (show)
Profile picture for rizzinator @rizzinator

Does anyone else have high pulse rate when moving around which in turn lowers oxygen even though I am on oxygen 24/7. I can’t even make to the bathroom without the pulse rate jumping up and making it hard to breathe.

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@rizzinator , Ever since I was diagnosed with BE, when I had an infection, my symptoms always fast heart beats and short of breath. Once infection was treated, these two symptoms were gone. But the last infection in August my shortness of breath and fast heart beats did not stop, and they also affected my oxygen level. Recently I took 5 days of prednisone. It worked like magic for me. From day one, I started walking 2 miles. My pulmonologist now believes my symptoms were caused by elevated eosinophils.

Ling

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