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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hello, I am new to this site. I was diagnosed with MAI about a year ago after a bronchoscopy to figure out the nodular growths in my lungs. At that time I did not have symptoms but the nodules in my lungs tested positive. My pulmonary Dr. recommended not to start any antibiotic treatment since I was symptom free, but to continue to monitor it with bi-annual CT chest scans. Since my last appointment, I have started to have bronchial symptoms. I'm due for my next CT scan but wanted to get a second opinion. I was excited to hear about Dr. Timothy Aksamit at Mayo so I'm trying to get an appointment with him; however, they said he doesn't have any openings as far out as May (and they don't schedule out any farther). They suggested I see the Nurse Practictioner, who is overseen by Dr. Aksamit. I am more inclined to wait for him to directly be my Dr. since he is the one recommended (and I live 90 minutes away from Mayo). I don't mind driving if I can see him directly. If I can't get in with him, does anyone know of one who specializes in MAI in the Twin Cities? Philomena
Replies to "Hello, I am new to this site. I was diagnosed with MAI about a year ago..."
I was diagnosed with MAC and nodules last Aug. I take medications for heart<br />
and PTSD.<br />
More medications would be a great drug load for my body.<br />
<br />
So I just live as healthy as possible and have an exray two times a year.<br />
<br />
So far I think my disease is in remision And as I am 86 why do the drug<br />
programn that may not work.<br />
<br />
When I have chest discomfort I chew on ginger and it stops the discomfort.<br />
<br />
86 going on 87<br />
<br />
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Welcome Philomena,<br />
I can only speak for myself .. BUT I personally would wait to see Dr.<br />
Aksamit .. for me he "walks on water"! With your situation I would ONLY<br />
see him. I just went for my latest check up last week and discussed how<br />
"famous and popular" he is now and how difficult it is to get into him. We<br />
agreed that IF I am not having symptoms .. but merely a check up .. I would<br />
see one of his associates: Dr. Jeremy Clain or Dr. Megan. Dulohery.<br />
<br />
That said .... I may be speaking out of line .. BUT if I was you I would<br />
call again .. ask for "Wendy" .. she works directly with Dr. Aksamit ..<br />
tell you spoke with Katherine Fink another patient and I spoke so highly of<br />
Dr. Aksamit you do not want to see anyone but him. THEN ask her if she<br />
could put you on a "Cancellation List" .. OR PLEASE keep you in mind if<br />
something comes up. Then make an appointment for ASAP with Dr. Aksamit ..<br />
but MAYBE Wendy MIGHT be able to fit you in if something happens. Tell<br />
them you need a CT scan per your current doctor so that can be set up.<br />
<br />
Then get a copy of EVERY record .. test etc to take with you to Mayo so<br />
they have that baseline to determine any changes.<br />
<br />
This is just my opinion. But Dr. Aksamit is the absolute guru of our<br />
disease!* Very best of luck .. and welcome to this Forum!*<br />
*Katherine*<br />