Badges (1)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (18)

Jul 30, 2018 · Frustrated in MAC & Bronchiectasis

I saw my doctor at Mayo the middle of June for a yearly follow up for my MAC infection. We are not treating it at this time, just monitoring it. He did a chest x-ray and pulmonary function test that were all stable. We discussed doing a CT scan but because they could not sneak me in he put an order in for me to have it done close to home. I had it done the following week and they pushed the images to the Mayo. I still have not received the results. Have called several times. I know he is busy and I do adore him but am frustrated that I have not heard back. They said he was backed up for months. I am sure if there was something serious that my hospital would have got in touch but I really wanted to see how it compares to the previous CT scan done at the Mayo. This stuff is so overwhelming sometimes and clear answers seem to help. Just venting!!

Jun 14, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Collaido silver has some nasty long term effects so I would educate yourself before using. Just like conventional medicine there can be long term damage.

Jun 9, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Who do you see at the Mayo? And which one do you go to?

Feb 20, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

How can I join in on the call on March 6th. I would like to learn more about what Dr Aksamit has to share about this condition I have. Thanks, Barb

Jul 29, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Katherine, thank you so much for all your support to this group. You have been a valuable source for information and were very committed to the cause. You have my prayers and thoughts for a healthy recovery. We will miss you but understand.

Jun 5, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

My name is Barb and I have been diagnosed with MAC that at this time they have decided at the Mayo not to treat. I was there in late March and saw Dr Aksamit’s assistant. I have seen Dr Aksamit in the past and adore him. My trust level in him is huge. He is also very thorough and explains and goes over everything in detail. After my last visit I emailed him to get clarification on whether I had bronchiectasis. The Chest Ct scan results were without ‘bronchiectasis’ although bronchial wall thickening and mucous plugging. My pulmonary function tests were good and no changes on my chest X-ray. So I guess that is good news plus I gained back 10 lbs.
It still is hard sometimes because so many doctors and people do not understand this condition. I may not respond to all emails but I feel this group is one place that gets it! My mom had this too and it was never treated and she is 92. But then she never smoked either, unlike me!

Jun 5, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I love to garden, my hobby. So does this mean I should not? I do it all, rake, dig it the dirt and plant. I was going to ask if it was ok to garden when I was at the Mayo but forgot. Maybe I should check.