1. < MAC & Bronchiectasis

What questions to ask pulmonologist?

Posted by Toni D. @tcd518, Apr 17 2:35pm

Hi all. I have bronchiectasis and MAC. My pulmonologist has recommended starting treatment with the Big 3 to prevent further irreparable damage to my lungs, but I am wavering. Before I make this decision, can those of you who have been down this path suggest questions I should be asking? My biggest concern is that I care for my 10-month-old granddaughter four days a week roughly three weeks a month - can I expect to continue doing this joyful work? Were you able to maintain your energy levels and, if so, how? Thank you.

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scoop | @scoop | Apr 17 4:19pm

If you have not already take a look at this document about NTM infections. It might help generate some questions for you.
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf

Others will weigh in with personal experiences too I bet!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 18 10:00am

@tcd518 And, just in time for your question, we have started a new "thread" here on Connect!
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/

One of the features is an interview with Mayo doctors , asking what they want patients to ask them. Take a look - maybe it will help you.

You asked a very big question "My biggest concern is that I care for my 10-month-old granddaughter four days a week roughly three weeks a month - can I expect to continue doing this joyful work? Were you able to maintain your energy levels and, if so, how?"

Than answer is that it depends, if your energy is good now, you take the meds three days a week, and you pretend you're a "new Mom" - you can do it. Just rest whenever you can, like when she naps, and as soon as she leaves. We cared for our grandson 2 days a week through my treatment, but I had the help of my husband.
Sue

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Toni D. | @tcd518 | Apr 19 8:53am

Thank you, Scoop and Sue. These are great resources, and I will study them carefully.

Sue, when you cared for your grandson, were you able to bring him for walks in the stroller? Lift him into the swings in the park? She has actually become my weight-lifting program 🙂

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Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 19 1:47pm
In reply to @tcd518 "Thank you, Scoop and Sue. These are great resources, and I will study them carefully. Sue,..." + (show)
@tcd518

Thank you, Scoop and Sue. These are great resources, and I will study them carefully.

Sue, when you cared for your grandson, were you able to bring him for walks in the stroller? Lift him into the swings in the park? She has actually become my weight-lifting program 🙂

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Absolutely - He's now 8, wiry and slim, and I can "boost" him, but no longer lift him. His brother is 5 - we'll see if I can still lift him when we get home - it was iffy at Christmas.
Walks were our "best thing" no matter the weather - and still are. These guys have kept me going when I wanted to lay down and quit.
Sue

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