1. < MAC & Bronchiectasis

Late dx, only 16% lung function

Posted by lch713 @lch713, Sep 7, 2018

Just found this group. My husband was diagnosed with MAC 2 years ago. We now suspect he was misdiagnosed with COPD and bouts of pneumonia for years. Looking for others who are managing this disease with similar loss of lung function in hope of finding additional strategies. He's been on the big 3 for 1 year now and sputum cultures are still positive. Began inhaled amikacin 1 month ago after discussion and questioning his ID physician. My heart goes out to all dealing with this disease and their caregivers.

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oldkarl | @oldkarl | Sep 7, 2018

@lch713 I know how that is. I was misdiagnosed with COPD and bacterial pneumonia for about 30 years also. And TB. and ...... on and on. Every organ failing, but pulmonologist radiologist said I did not have COPD but did have a lot of other stuff. Any, after some study and testing, I have some form of Light Chain Amyloidosis, probably Gelsolin or Apolipoprotein or similar. I have a whole list of my symptoms and signs available. https://bit.Ly/1w7j4j8 "Amyloidosis...." Find a doctor you trust, cardi, pulmo..., onco..., hema... doesn't matter much, but they must order the test that Mayo (Dr. Martha Grogan) says, and have someone like ARUP labs or Mayo-Quant labs or Sloan Kettering do the analysis. If they show positive for SERUM protein outside the reference range, or Urinary protein above .5g/24hr, that's a good lead to follow. But you absolutely must have a doctor you can trust with your life, and who will follow directions from Mayo or Stanford, etc. The list of needed tests is also on my Amyloidosis and old karl paper. The testing is paid for by Medicare.

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1 reply
lch713 | @lch713 | Sep 7, 2018
In reply to @oldkarl "@lch713 I know how that is. I was misdiagnosed with COPD and bacterial pneumonia for about..." + (show)
@oldkarl

@lch713 I know how that is. I was misdiagnosed with COPD and bacterial pneumonia for about 30 years also. And TB. and ...... on and on. Every organ failing, but pulmonologist radiologist said I did not have COPD but did have a lot of other stuff. Any, after some study and testing, I have some form of Light Chain Amyloidosis, probably Gelsolin or Apolipoprotein or similar. I have a whole list of my symptoms and signs available. https://bit.Ly/1w7j4j8 "Amyloidosis...." Find a doctor you trust, cardi, pulmo..., onco..., hema... doesn't matter much, but they must order the test that Mayo (Dr. Martha Grogan) says, and have someone like ARUP labs or Mayo-Quant labs or Sloan Kettering do the analysis. If they show positive for SERUM protein outside the reference range, or Urinary protein above .5g/24hr, that's a good lead to follow. But you absolutely must have a doctor you can trust with your life, and who will follow directions from Mayo or Stanford, etc. The list of needed tests is also on my Amyloidosis and old karl paper. The testing is paid for by Medicare.

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Thanks for your reply, Karl. Our ID sent cultures to Jewish in Denver, so we did get more detailed info from them. Don't think he's had a CRP lately, but good reminder to ask them to check it. Have an appt at Mayo in November to have them weigh in on his treatment. He's been a patient there before for complicated total knee revision with infection. Sounds like you've learned the importance of being your own healthcare advocate as we have!

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1 reply
oldkarl | @oldkarl | Sep 7, 2018
In reply to @lch713 "Thanks for your reply, Karl. Our ID sent cultures to Jewish in Denver, so we did..." + (show)
@lch713

Thanks for your reply, Karl. Our ID sent cultures to Jewish in Denver, so we did get more detailed info from them. Don't think he's had a CRP lately, but good reminder to ask them to check it. Have an appt at Mayo in November to have them weigh in on his treatment. He's been a patient there before for complicated total knee revision with infection. Sounds like you've learned the importance of being your own healthcare advocate as we have!

Jump to this post

I have learned a lot through this. I do not trust anyone blindly any more.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 8, 2018

Welcome to the MAC group on Connect, @lch713.
I'd like to also bring @windwalker and @tdrell into this conversation.

@lch713 you may also wish to join the main discussion where you'll meet all the members here:
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

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