1. < MAC & Bronchiectasis

CAT SCAN - how often?

Posted by meadows @meadows, Nov 15, 2023

When you were first diagnosed, did you need another cat scan before starting the antibiotics? I had a cat scan done last July prior to the formal diagnosis, and now they want another cat scan prior to antibiotics. Was that your experience? It seems so soon esp. since MAC is slow growing. Thanks

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sweethighland | @sweethighland | Nov 20, 2023
In reply to @sueinmn "Yes, it is normal to feel tired after ACT - it is hard work. Since you..." + (show)
@sueinmn

Yes, it is normal to feel tired after ACT - it is hard work.
Since you have so many lung conditions, how are you monitoring your oxygen levels?
Sue

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oximeter shows between 97 - 99%. Fitbit shows between 94 and 97% at night while asleep.

REPLY
frankie160 | @frankie160 | Nov 21, 2023
In reply to @sueinmn "Flo - I am happy to hear that you are not letting the multiple conditions discourage..." + (show)
@sueinmn

Flo - I am happy to hear that you are not letting the multiple conditions discourage you from trying to reach your personal best.
In addition to the airway clearance, I find it very helpful to do some separate deep breathing or relaxation breathing several times a day. Two particular times are when I sit at my desk to use the computer, and the last thing at night in bed before I sleep.
What kind of exercise are you able to do? Even mild movement like walking can help gently maintain or improve your ability to breathe.
Sue

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Hi Sue,
Thanks for responding with your tips and encouragement. Perhaps my emphysema has gotten worse and so I will be seeing the Pulmonologists in January and ask for best ways to be evaluated.
Yes, I have started the breathing exercises at least one to two times a day and will try for 3 with one at night.
I have been working with the RT doing a 45 workout
each session on various machines and had been doing fast walks indoors for at least 12 minutes with one minute rest every 4 minutes. Need to start that up again. I can still take the subway and climb at least one flight of stairs very slowly and walk to my appointments. After each block here in the city, I need to rest for at least one minute, and 1/2 block if there is an upward incline. I'm 77 and use to play 4 hours of tennis p/w, exercised everyday (with my COPD diagnosis) for the last 15 years prior to the breast cancer and mac diagnosis in June, 2022. I suppose the cancer treatments (surgery, chemo, radiation and estrogen blockers,) and all the medications I take plus my inactivity has wreaked havoc on my breathing capacity.
We will keep moving forward!
Flo@Frankie160

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1 reply
frankie160 | @frankie160 | Nov 21, 2023
In reply to @liz440 "Have you had a recent echo cardiogram? I had really bad shortness of breath and it..." + (show)
@liz440

Have you had a recent echo cardiogram? I had really bad shortness of breath and it turned out part of the reason was myocarditis...inflamed heart muscle leading to temporary heart failure.

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Hi Liz440,
Not being able to walk a few blocks here in city and can only climb one flight of stairs very slowly before becoming out of breath is so concerning.
I have not had an echo cardiogram recently, however I am being set up for an echo stress test. I will look into what is best and make a request so thanks for your advice. The Respiratory Therapist also asked the same question..... I do have elevated cholesterol numbers and have finally agreed to take a low dose of Crestor.
Thanks for your thoughts.
Flo@Frankie 160

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liz440 | @liz440 | Nov 21, 2023
In reply to @frankie160 "Hi Sue, Thanks for responding with your tips and encouragement. Perhaps my emphysema has gotten worse..." + (show)
@frankie160

Hi Sue,
Thanks for responding with your tips and encouragement. Perhaps my emphysema has gotten worse and so I will be seeing the Pulmonologists in January and ask for best ways to be evaluated.
Yes, I have started the breathing exercises at least one to two times a day and will try for 3 with one at night.
I have been working with the RT doing a 45 workout
each session on various machines and had been doing fast walks indoors for at least 12 minutes with one minute rest every 4 minutes. Need to start that up again. I can still take the subway and climb at least one flight of stairs very slowly and walk to my appointments. After each block here in the city, I need to rest for at least one minute, and 1/2 block if there is an upward incline. I'm 77 and use to play 4 hours of tennis p/w, exercised everyday (with my COPD diagnosis) for the last 15 years prior to the breast cancer and mac diagnosis in June, 2022. I suppose the cancer treatments (surgery, chemo, radiation and estrogen blockers,) and all the medications I take plus my inactivity has wreaked havoc on my breathing capacity.
We will keep moving forward!
Flo@Frankie160

Jump to this post

Frankie - an echo stress test is just as good maybe better than a plain old echo. I had both. The numbers were worse on my echo stress test. However, three months later all my numbers (ejection fraction) were back to normal and the reason was that myocarditis can cause temporary (usually goes away) heart failure. My breathing got much better after that. The myocarditis cause is unknown though could have been pneumonia or the vaccine. No one knows. Now I can walk up a steep hill though my muscles have taken time to get back their strength after doing zero for so long.

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1 reply
frankie160 | @frankie160 | Nov 22, 2023
In reply to @liz440 "Frankie - an echo stress test is just as good maybe better than a plain old..." + (show)
@liz440

Frankie - an echo stress test is just as good maybe better than a plain old echo. I had both. The numbers were worse on my echo stress test. However, three months later all my numbers (ejection fraction) were back to normal and the reason was that myocarditis can cause temporary (usually goes away) heart failure. My breathing got much better after that. The myocarditis cause is unknown though could have been pneumonia or the vaccine. No one knows. Now I can walk up a steep hill though my muscles have taken time to get back their strength after doing zero for so long.

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Liz440,
Have had difficulty scheduling my echo stress test but will keep trying on account of your story so thanks for replying. If I’m unsuccessful, it will not get done until after the holidays…
Flo @frankie160

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11moondog11 | @11moondog11 | Nov 23, 2023

Between Fusarium fungal disease, MAC, pneumonia and surveillance for lung cancer and or metastatic cancer from my prior Esophageal cancer
they gave me CT scans every 8 weeks
for almost 2 years.

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