← Return to Starting MAC treatment with "big three" drugs: What to expect?

Discussion
Comment receiving replies
@sueinmn

I could think and write all day, and probably miss something. Here is a starting point I found on the ntminfo.org web site:
QUESTIONS TO ASK YOUR DOCTOR
Sometimes it is helpful to have a list of questions so you don’t forget. It might
help to bring someone with you to your appointment if you are especially
anxious. These questions were written from a patient’s perspective and are not
intended as medical advice.
1. What strain(s) of mycobacteria do I have? Where in my lungs is the
infection located?
2. Was drug sensitivity testing performed? If so, what were the results?
If not, can and should it be done?
3. What drugs will I be taking? What is the dosing level for each medication?
Can and should therapeutic drug levels be checked?
4. When and how do I take my medication?
5. How long do you expect me to be on the medications?
6. What side effects will I be likely to have? Which side effects should be
reported immediately? Do you have any suggestions for coping with side
effects?
7. Will IV drugs be necessary?
8. Will I also need inhalers?
9. How often will I have:
a. Follow up appointments with you?
b. X-rays/CT scans?
c. Lab work? What kind?
d. Hearing or vision tests? (Try to have hearing and vision tests done
before starting your medications so they will have a baseline by which
to judge any changes.)
e. Sputum cultures?
10. What other monitoring will I need?
11. Should I use an airway clearance device? How often?
12. Can I still take over the counter medicines/vitamins/supplements? (Be
sure to tell your doctor about ALL nutritional supplements, herbs, or over
the counter products that you take. These can interact with your medicines
or decrease their effectiveness.)
13. Would I be a candidate for surgery? Why or why not?
14. What if I lose my appetite?
15. What if I feel depressed?
16. Can I exercise? What kind of exercise?
17. What precautions should I take? What activities should I avoid?

Some of these may apply to you, others not. Just pick and choose what you would like to ask. I will add these, to me very important ones:
1) Is there an alternative we can try before the antibiotics, such as rigorous airway clearance with nebulized saline & close monitoring?
2) Will I have quick access to a PA, respiratory therapist or knowledgeable RN to answer my questions if I start the medications?

Does this help? I sure wish I had known what to ask when I was diagnosed.

Good luck with your appointment - let me know what you learn, please

Sue

Jump to this post


Replies to "I could think and write all day, and probably miss something. Here is a starting point..."

This is truly so helpful, I'm glad that I asked and got an answer from a seasoned mentor. Thank you.

Hi Sue,
I literally cut and pasted your questions and brought them to my Infectious Disease doc yesterday, he took his time to answer them as we discussed a plan...I'm now on the 3 meds and will see how it goes. Thanks so much for your help! One question I forgot to ask him was about probiotics--do you have any recommendations?

excellent questions! I definitely have to ask about my daily supplements! thank you for the reminder! Lisa

Absolutely where I’m at ! This is so incredibly helpful. I clicked through and added the probiotic question. I have been so curious as to how to move forward with this decision. Feeling like somebody’s got to be the quarterback, and I guess that’s me! With all y’all’s help!!