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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Hi group, I can relate about how scary this is. I am thankful I am in the best hands at the Mayo. My mom was diagonosed with this over 20 years ago and the dr said the antiobotic treatment would be harder on her than the disease. They choose to monitor her and she never went on treatment. She is 90 years old and doing great. Everybody is different and I think the answer is to monitor it and stay on top of it if treatment is warranted. I go back to the Mayo in June to see Dr Akinsatt and have a CT scan, sputum sample and pulmonary function test. We will go from there. If we do decide treatment I have met with a pharmacy dr there that was very thorough about the drugs. 3 days a week, 3 different antibotics.
I think depression has played a part in this so we are monitoring that also.
Hang in there everyone. So glad we have this forum for support.
Replies to "Hi group, I can relate about how scary this is. I am thankful I am in..."
Katherine, that was very good information about the Mayo Pharmacy as I<br />
didn't know they would do that for you. I just was baffled because as you<br />
said, some with food, without, can't take this or that vitamin or probiotic<br />
with the meds, and wait so long between. I was despondent trying to make<br />
my own schedule. Good to read that! Thanks<br />
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Barbjh, this was SUCH good information for Cheri! Thank you for it! Hopefully Cheri is with a GOOD pulmonary doctor who is capable of properly monitoring her. If it was Dr. Aksamit I wouldn't have ANY concern .. he puts it all together like a great big puzzle to decide when/if it is absolutely necessary to go on the antibiotics .. AND what mix is the best for you particular situation. He is the best! The Pharmacists at Mayo Clinic, Rochester are also excellent. I also have other meds I must take .. she along with my local Pharmacist helped me put together a daily SCHEDULE of when to take the various meds and probiotics! It was a LONG list! With food .. without food .. so many hours before vitamins .. so many hours after another medication .. it took a bit to get used to! I printed it out and taped to my medicine cabinet .. a copy in my purse .. a copy for when I traveled .. BUT it worked for 30 months .. never got severe nausea .. never got yeast infection .. worked through things and came out on the other side smiling!
Your advice was so good .. again .. thank you!