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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Just got told I probably have MAC. I have been a respiratory therapist for 45 years and this is the first I have encountered this disease. So yes I am scared to death while I wait to see an Infectious disease dr. Would never have known I had anything until an episode of coughing up blood as I was working just before Thansksgiving. But it may have been a life saver since they did a CT. I have been treated from asthma and bronchitis almost cont. for a year or more now. My airways were so irritated and I just never seemed to get better or over the cough. No one looked for anything else. Any information and support will be appreciated.
Replies to "Just got told I probably have MAC. I have been a respiratory therapist for 45 years..."
Welcome to the group cbest. You will find this group very supportive and loving. I joined the group last December, when I was diagnosed. I have bronchiectasis, atypical cystic fibrosis and MAC. I'm 65 yrs old. I started meds for MAC mid-December and am already finding that I can do things now that I had trouble doing a few months ago. I'm still restricted and get short of breath easily, but I'm noticeably improved. The best thing you can do for yourself is read through the many pages of posts from the start. It took me 3 days to get through it all, but I gained more information from this group than I could have ever hoped to get from any medical professionals. I have "filed" away links that are useful and started a Word document where I pasted posts that I wanted to refer back to and that I found helpful. It's not all going to be stuff you want to retain, but there is some very helpful information. It would be great to have a name so that we can address you by your name. Makes it more personal if you are willing. We will stick with you! You are not alone! Warmly, Linda
@lindam272, Linda, LOVE your response .. thank you SO much .. I just KNEW my group would jump in .. YEAH!!! Kudos to you! Big Hugs! Katherine
@cbest, I am so sorry this has happened to you .. but believe me .. you REALLY do not need to be "scared to death" .. why? Because each and every one of us on this Forum have walked in your shoes before .. AND walked out the other side. Truly! It will be ok. @lindam272, Linda gave you SUCH great advice .. I hardly have anything else to add other than to print out her post .. follow that advice .. then come back with any questions you might have. We have ALL been where you are .. and we will be here for you every step of the way. My only other advice is make SURE you find an Infectious Disease who has treated SEVERAL MAC patients in the past 12 months so they know what the heck they are doing. Call their office and ASK! Be you own best advocate! This is YOUR body .. take care of it! That is part of why you need to read the past pages .. to learn about your disease and take charge! Hope this helps a bit .. keep coming back .. we will be here for you! Hugs to you in this tough time! Katherine
Katherine, Glad your hubby is home from the hospital! Praying for you both! Linda
I'm a little confused if I would have to have an Infectious Disease doctor ALSO if I have a Pulmonary doctor that specializes in MAI/MAC. I can't seem to find an Infectious disease Dr. In my area but have made an appointment with Dr. Kamelhar at NYU. He was listed on the NTM website as being a specialist in NTMs. I won't be seeing my prior pulmonary Dr. since I have moved and especially because she wasn't very knowledgeable about this disease.
I too have a pulmonologist who specializes in MAC...no need for ID as well...the key is having someone who is exceptionally proficient with managing the infection
Thank you.
Amen I start Friday on my antibiotics so I will conquer this!! Love my pulmonologist she explains everything so I can't ask for more!! Still want to work so out right now but going back as soon as I can!!❤️
@ginak .. Gina, IF your "Pulmonary doctor that specializes in MAI/MAC" .. NO you DO NOT also need an Infectious Disease Doctor. It is just that MOST Pulmonologists are NOT knowledgeable about MAC .. YOU just got lucky! If yours specializes in MAC .. stick with them if you are happy with the care you are getting and have an "attitude of gratitude" that you found a good one! YEAH!
Hope that explains it .. if not get back and ask for further clarification! But as long as you have a Pulmonary doctor that specializes in MAI/MAC right in you own area .. getting appropriate care.. that is all you need! Hugs! Katherine
Connect
@cbest, welcome to Connect and to the MAC group. I moved your message to the main discussion forum so that you can be introduced to many members. People like you who have been surprised to be diagnosed with MAC, and frightened about what is to come. I encourage you to read through the past messages of this forum to get know the people who have willingly shared their journey to help people who are just starting out. You will get plenty of support here, and an incredible wealth of knowledge and experience to get you through this journey.
You'll read that many health care professionals are under-informed about MAC. So even with your 45 years experience as a respiratory therapist it doesn't come as a surprise for many here that this is your first encounter with the condition.
There are many members who will answer any questions you might have. Allow me to introduce you to a few. Please meet @tdrell, @chinasmom, @Paula_MAC2007, @jillnc and @kaystrand. Just to name a few.
Cbest, what concerns you the most at this moment? How can we give you assurance and help calm the nerves?