How is everybody doing?

Posted by Terri Martin, Volunteer Mentor @windwalker, Aug 5, 2017

Hello All! The forum has gone quite. Haven't heard from some of you in awhile. I am hoping some of you will check in. As for me, I just got ALL of my sputem lab reports going back to 2013 as I had requested. My very last test from June came back negative for everything. Yay!!!! I still battle fatigue and shortness of breath though. There were some organisms picked up in the past that I had not recognized, so I am going to Google them. Look forward to hearing from everyone! -Terri M.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Carolyn | @cld120 | Aug 7, 2017

In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)

Tdrell, I am still confused as to how I will produce sputum & not just saliva. I rarely to never can cough up mucous..

tdrell | @tdrell | Aug 7, 2017

In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)

Cld20 I am guessing....mucus comes from inside lung and what is wanted....saliva is from mouth....not wanted.... so bronchoscopy sample of fluid is for sure from lungs.....and if I expectorate /cough up stuff first thing in morning...before drinking or eating....it is visibly thicker and usually lite yellow or green ........versus saliva which is thin and clear. Tdrell

Terri Martin, Volunteer Mentor | @windwalker | Aug 8, 2017

In reply to @cld120 "Terri/@windwalker, this is Carolyn (59 yo diagnosed with MAC and mild bronchiecstasis earlier this summer.) I..." + (show)

Good morning Carolyn! I am so glad to hear that your bronchoscope was not a horrifying experience. This will help others who may need one in the future for the first time; to not be so fearful. Thank you for sharing that. - Terri M.

Terri Martin, Volunteer Mentor | @windwalker | Aug 8, 2017

In reply to @robynmar "I just finished 10 days of Cipro with side effects of insomnia and diarrhea. I'm exhausted...." + (show)

Good morning Robyn! I just finished my 10 day run of Cipro last night. Looks like we are on the same page. That antibiotic will be in your system awhile yet, so here's to hoping you continue to improve from it. You sound a better than when you and I first connected, don't you think? Hugs - Terri

Terri Martin, Volunteer Mentor | @windwalker | Aug 8, 2017

In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)

Hi Carolyn. Did they ever try a forced sputem test on you? That is where they have you inhale strong sodium chloride (strong saline) that irritates the lungs and causes deep coughing to bring up sputem from deep down? - Terri M.

Carolyn | @cld120 | Aug 8, 2017

In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)

No, they haven't. Respiratory Therapy at a local hospital was going to try it but the RT's said they'd NEVER had any success doing it. I am going to an Infectious Disease specialist at the University of Kentucky Medical Center at the end of August. Am hoping that folks there are more experienced with MAC/sputum inducement! After using the nebulizer for several weeks with a 3% saline solution twice/day, I am coughing more & getting a tiny bit of mucous up, hoping this accelerates!

tdrell | @tdrell | Aug 8, 2017

In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)

Cid120 if l recall correctly at NJH the respiratory therapist had me start on back in bed and do inhalation therapy....thendo coughing...with the way they taught there...deep breathes thru nose...huff out 3 times and cough on last.... tdrell

Carolyn | @cld120 | Aug 8, 2017

In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)

@tdrell, So you literally do Inhaler (I use Albuterol 1-2 puffs 2x/daily), then Nebulizer laying on your back?
At Mayo, the book they gave me says to sit up straight, but I can certainly try that way.

robynmar | @robynmar | Aug 8, 2017

I did not have a good experience with Cipro this time. Towards the end, lots of diarrhea, and throughout, I had great difficulty in sleeping. I was up for hours in the middle of the night; just couldn't go to sleep. I'm still not sleeping well and feel really zonked. Never had that before. I'm not sure that Cipro helped that much; actually the Bactrim worked better on the 99.5 temps and no diarrhea. Just nausea, which, in retrospect, seems a better choice. The amount of sputum now is minimal, which I hope is good. I'm sounding better because I have a better idea of what is wrong. Before, there was no clear picture. I've actually had a few mornings when my head was clear, not fuzzy. I have my hands full here with a difficult husband who is terminal with cancer and relatives who are helpful but coming and going. I'm not sure what "improvement" would mean for me. Probably no temperature. The coughing never was a problem since I only cough up stuff once a day. In fact, it's time for that now. Thanks for your caring, blessings, Robyn

auntnanny | @auntnanny | Aug 8, 2017

In reply to @robynmar "I did not have a good experience with Cipro this time. Towards the end, lots of..." + (show)

I'm just jumping in here (without knowing exactly which bug you are treating)...... but Mayo's had me on Bactrim previously...... and cipro....... but clindamycin has been the one that has worked best for me. Less side effects and better outcome. Just
wondering if you have tried that. It's my favorite of all that's been tried for me.

Jan Todd

T-Bar Country

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