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Sep 26, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks so much for your thoughtful response, Katherine. It means a lot to me. I have been a little muddled this weekend, trying to think things through. I do have a lung functioning test coming up, and a follow up with my infectious disease specialist, so he may have a different opinion than the respiratory specialist. I will see what transpires from that. but in the meantime, am focusing on trying to stay as healthy as possible. I appreciate being part of this site and the connections made. I feel very supported.

Sep 24, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks Katherine, and also thanks to Jill, Nan, and TerriD for sharing your experiences with me. I appreciate it. I had my appointment with the respiratory specialist this morning and was surprised that he recommended no bronchoscopy and no treatment for MAC, although that is what he suspects I have, because I am fairly healthy and don’t really have symptoms that are affecting my functioning. Even though I have bronchiectasis, he said that any further damage to my lungs as the result of MAC would be at the rate a glacier grows, i.e. extremely extremely slow, and that the treatment is worse than anything he suspects I would experience with the MAC and it is sometimes not successful. Has anyone else had this response from a specialist?

Sep 22, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi, Katherine. I went to my GP and she did an EKG, etc. and does not seem worried about my heart. I also had my appointment with the Infectious Disease Specialist today and he seemed really good – answered my questions and wants to discuss things with my respiratory specialist before doing anything. He is querying MAC and indicated because I don’t have much sputum, that I may have to get a bronchoscope. I am really really fearful of that…I don’t even like the feeling of freezing when i get dental work, so don’t know how I will make it through that procedure, even with drugs! Is there any other way to test for MAC? blood or stool for example? I am lucky, too that I got into a cancellation appointment with the respiratory specialist tomorrow, instead of waiting until Nov 4th. But really really concerned about the potential bronchoscope. 🙁

Sep 19, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thank you so much for your suggestions and for your encouragement, Katherine! The reason I got assertive about my appointments was because of your encouragement before you left on your vacation. So thank you very much. i have an appointment with my GP tomorrow morning and will mention my new symptoms to her while I wait for my other appointments. It is a weird feeling to sense a skipped heartbeat. And today, to top it all off, I woke up with severe vertigo. Every day is an adventure, that’s for sure. Hugs back at you!

Sep 19, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

So glad you had a nice vacation!

I have two appointments scheduled now…one with an infectious disease specialist (in one week) and one with a respiratory specialist (still 6 weeks away but I am also on the cancellation list). I really want to get in before I head to my step-daughter’s wedding out of the country in early October, so that I know if there are any precautions I need to take while travelling. The worst part for me is not knowing whether I have a mycobacterial infection or not, and also not knowing how bad my bronchiectasis is because sometimes I can’t tell if my shortness of breath is allergy related, stress related, bronchiectasis related or all of the above! [??]

I have also had another symptom that is concerning me and I wonder if anyone else has had it…about 3 or 4 times I have suddenly felt like i stop breathing…not sure if i actually do, if my heart skips a bit, or what is going on. Has anyone had this feeling?

Thanks for checking in on us.

Fran

Aug 28, 2016 · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

Of course…and I am sorry to ask. That is private. Enjoy! And thank you again for your support.

Aug 28, 2016 · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

Thanks, again, Katherine. You are a very positive person! I hope you have a wonderful trip. Where are you going?

Aug 28, 2016 · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

Thanks for your quick response, Katherine, and for your encouragement. I live in Canada which is why the long wait to see a specialist. My GP referred me to a respiratory specialist, but from what you are saying, I should see an infectious disease specialist as well. I will try to press this with my GP as well as other people in the system, as you suggest. I am scared. very scared. thank you for the hug. I really needed it. 🙁