1. < MAC & Bronchiectasis

Third sputum culture rejected - frustrating

Posted by Jen_b @jenblalock, Nov 15, 2017

Arrrgh! Got my sputum culture results back again and once again it's unacceptable! I can't seem to cough up anything that they can culture. Maybe that means there is nothing there so that would be good. It's just frustrating because I haven't felt great lately and would like a culture at least cooking. At this point in my recovery (have been off MAC meds since April) I am supposed to submit one every 6 months. Not sure if I should just let it go at this point or request an order for another one be submitted. I should note that I was diagnosed with a bronchoscopy and since then all of my sputum cultures have been negative. - Jen

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Jo Ann K | @jkiemen | Nov 15, 2017

I don't get anything up either even with sputum inductions, extra fluid etc. They had to resort to Bronchoscopy for me. I have had 2 done -2 years apart. Both grew.

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1 reply
Jo Ann K | @jkiemen | Nov 15, 2017

I have not been on treatment yet. But they told me they are considering it if my next CT is changed.

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Jen_b | @jenblalock | Nov 15, 2017
In reply to @jkiemen "I don't get anything up either even with sputum inductions, extra fluid etc. They had to..." + (show)
@jkiemen

I don't get anything up either even with sputum inductions, extra fluid etc. They had to resort to Bronchoscopy for me. I have had 2 done -2 years apart. Both grew.

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I've had two bronchoscopy. The first was positive (first diagnosed). The second at end of treatment was negative. So perhaps I should live my life and not worry about it for awhile.

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Jo Ann K | @jkiemen | Nov 15, 2017

I know it is that always thinking about it in the background that is hard.

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mschmidt2 | @mschmidt2 | Nov 15, 2017

I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant Recipient. My current CT scan was not good and I have been coughing for 4 weeks. I too am hard time bringing up enough sputum to sample. I’m nervous about 3 medications at one time and or the Bronchial Wash. Any input would be greatly appreciated.

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7 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 15, 2017
In reply to @mschmidt2 "I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant..." + (show)
@mschmidt2

I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant Recipient. My current CT scan was not good and I have been coughing for 4 weeks. I too am hard time bringing up enough sputum to sample. I’m nervous about 3 medications at one time and or the Bronchial Wash. Any input would be greatly appreciated.

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Hi @mschmidt2, welcome to the MAC group on Connect.
I encourage you to read some of the main discussion thread in the group and join in:
- (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

This discussion may also provide some insight:
- MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/

Have you doctors suggested any precautions as a liver transplant recipient when taking the antibiotics? What concerns you the most?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 24, 2017
In reply to @mschmidt2 "I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant..." + (show)
@mschmidt2

I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant Recipient. My current CT scan was not good and I have been coughing for 4 weeks. I too am hard time bringing up enough sputum to sample. I’m nervous about 3 medications at one time and or the Bronchial Wash. Any input would be greatly appreciated.

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@mschmidt2, Hello. Congrats on your 17 years with your new liver. I think that is pretty awesome. I am sorry that you developed Mac & Bronchiecstsis. I have read that can happen with transplantees after many years. The three meds are scary, but the bronch wash shouldn't be bad. I have heard that they put you in twilight anesthesia like they do for colonoscopies. Please keep us informed of your progress. I hope you feel better soon.

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mschmidt2 | @mschmidt2 | Nov 24, 2017
In reply to @mschmidt2 "I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant..." + (show)
@mschmidt2

I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant Recipient. My current CT scan was not good and I have been coughing for 4 weeks. I too am hard time bringing up enough sputum to sample. I’m nervous about 3 medications at one time and or the Bronchial Wash. Any input would be greatly appreciated.

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Thank you for your kind words. I learn more on December 1st. Fingers Crossed z

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 24, 2017
In reply to @mschmidt2 "I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant..." + (show)
@mschmidt2

I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant Recipient. My current CT scan was not good and I have been coughing for 4 weeks. I too am hard time bringing up enough sputum to sample. I’m nervous about 3 medications at one time and or the Bronchial Wash. Any input would be greatly appreciated.

Jump to this post

@mschmidt2 I also invite you to explore the Transplants group here on Mayo Clinic Connect https://connect.mayoclinic.org/group/transplants/ I'm sure people would appreciate hearing from a 17-year transplant recipient. Perhaps here:
* Changes after Transplant https://connect.mayoclinic.org/discussion/changes-after-transplant/

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 25, 2017
In reply to @mschmidt2 "I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant..." + (show)
@mschmidt2

I was diagnosed with Mac/Bronchiectasis in 2015. I am also a 17 Year Post Liver Transplant Recipient. My current CT scan was not good and I have been coughing for 4 weeks. I too am hard time bringing up enough sputum to sample. I’m nervous about 3 medications at one time and or the Bronchial Wash. Any input would be greatly appreciated.

Jump to this post

@mschmidt2 We will all keep our fingers crossed for you too.

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