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Jen_b
@jenblalock

Posts: 168
Joined: Jan 02, 2017

Third sputum culture rejected - frustrating

Posted by @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

REPLY

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.

Liked by Jen_b

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

@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.

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

Liked by Jen_b

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.

@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?

Liked by mschmidt2

@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.

@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

@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 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/

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

Hi. I posted original question/issue. I am now not feeling well and feel some chest congestion but have no way of knowing what is going on since I can’t get a sputum culture. I had a chest CT scan back in September that showed no changes in lesions or bronchiectasis and had been feeling quite well until recently. I have no fever and just a bit of a cough. One side of my chest feels more congested than the other. Has anyone else had this issue with one side of chest feeling congested but not the other?

@jenblalock , Hello Jen. Sorry to hear you are feeling poorly. I was feeling like I had pneumonia coming on last week.I had a stabbing pain radiating out the backside of my right shoulder blade. I was already halfway thru my 28 Day cycle of tobramycin when that came on. My dr. phoned in a prescription for Levafloxacin. I am thinking it is a broad spectrum antibiotic and will kill any gram postive infection since I got sick while on the tobi which treats gram negative bacteriums. I am starting to feel better, but still coughing up green. Call your dr. and ask what you should do. Do you nebulize the 7% saline twice a day by any chance?

@windwalker Thanks for your reply. I hope the Levafloxacin takes care of your problem and you feel good again soon. That’s what I was put on last time I had pneumonia and it cleared it up. I do nebulize with 7% once a day and huff cough and nothing comes up except spit so it feels like a waste of time. I’ll give this a week and see how I feel. I don’t feel horrid and can still function. Just went out for a brisk walk/run to clear my lungs and did okay except some coughing so maybe I’m just paranoid. The problem is I’m not sure how I am *supposed to feel anymore. I did contact the doctor and asked for an RX for Dulera inhaler to see if that helps. Inhalers traditionally have done nothing for me but it’s worth a try.

@windwalker

@jenblalock , Hello Jen. Sorry to hear you are feeling poorly. I was feeling like I had pneumonia coming on last week.I had a stabbing pain radiating out the backside of my right shoulder blade. I was already halfway thru my 28 Day cycle of tobramycin when that came on. My dr. phoned in a prescription for Levafloxacin. I am thinking it is a broad spectrum antibiotic and will kill any gram postive infection since I got sick while on the tobi which treats gram negative bacteriums. I am starting to feel better, but still coughing up green. Call your dr. and ask what you should do. Do you nebulize the 7% saline twice a day by any chance?

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@windwalker I hope you are continually feeling better, please keep us updated.

@jenblalock

Hi. I posted original question/issue. I am now not feeling well and feel some chest congestion but have no way of knowing what is going on since I can’t get a sputum culture. I had a chest CT scan back in September that showed no changes in lesions or bronchiectasis and had been feeling quite well until recently. I have no fever and just a bit of a cough. One side of my chest feels more congested than the other. Has anyone else had this issue with one side of chest feeling congested but not the other?

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Hi @jenblalock I always felt more congested on the right side, know idea why, I would also get pain on that side. I hope you are feeling better soon.

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