How is everybody doing?

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.

@windwalker

Jan, we are not saying you do not have asthma. Often times asthma and COPD go hand-in-hand with bronchiecstasis. It is called ‘co-morbid disease’. I have all three and then some! -Terri

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Hello Andree! It is great that you are getting respiratory rehab, Exercise is the best thing for all of us. I totally understand about the lack of energy, it is the bane of this disease. ‘Co-morbid’ does sound, well, morbid, doesn’t it? It means diseases that typically go hand-in-hand with other diseases.

Since you asked….There are tests they can do to tell how long you probably have to live. I asked my doctor about the tests and he said he refuses to do them and doesn’t believe in doing them. Judging by his tone, I did not ask any more about it. I tend to believe that strides are being made for better treatment to help people live a longer with this disease, and with a better quality of life. A lot also depends on how well we take care of ourselves knowing that we have this.

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@cld120

Terri/@windwalker, this is Carolyn (59 yo diagnosed with MAC and mild bronchiecstasis earlier this summer.) I saw an ID doc at Mayo a couple weeks ago and start on the “Big Three” tomorrow. Actually, Azithromyacin this week, adding Rifampin and Ethambutol each of the following two Monday’s. I am trying to stay positive but am quite anxious about starting a minimum of 14 months of this regimen. Anyway, I’ve since gotten all my baseline tests, a pneumonia shot, started probiotics (Florastor) & had an endoscopy to assess GERD. Also began a routine of Albuterol inhalant, a nebulizer and Aerobika twice daily.

Here are a couple questions:
I have never produced phlegm or mucous.
How will we do sputum tests? (How often are they done, usually?)
Do you have to have a bronchoscopy each time you need one?
Thanks!

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Hi Carlyn. As per what Terri said about ‘FORCED SPUTEM’ procedure; I was curious why they are not doing that first before doing something as invasive as a bronchioscope? I have been going to the Mayo for almost five yrs now, and they have never done a bronchioscope on me. I have had the forced sputem test where they have you breathe in a high level of sodium chloride (same as high salt content saline) that usually brings sputum up. I would ask my dr why they are choosing this route and by-passing the saline before doing the scope. It is just a phone call to ask…… has anyone else had this situation?

Liked by Carolyn

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@robynmar

Hi folks! I’m just finishing up my Cipro and had a surprise diarrhea attack this morning. Also, trouble sleeping. No mucus is coming up, which worries me. The sneaky low temps are fewer. I’m still waiting for a report from my Infectious Diseases doctor; I’ll nudge him when I am done with the Cipro. My guess is that my MAC is dormant and I have other more common bacteria which is causing the trouble. I’m feeling very fortunate. By the way, asthma was always the go-to diagnosis when the doc couldn’t think of anything else. Then COPD. That was before the discovery of the MAC and M. lentiflavum. Bronchiectasis was the first diagnosis and is the underlying condition of my lungs. We’re having a surprise humid hot summer here in the Bay Area. But the fog is due to arrive any day now. blessings, Robyn

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Hi Robyn! I hope you are feeling a little bit better with each passing day. I want to say “feeling a LOT better with each passing day”, but I know it takes time. Good hearing from you! – Hugs, Terri

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@auntnanny

Do you feel if there was any MAC involved that there would be some type problem in the 24 hours sputum tests? Or…… could I have MAC and have short term tests negative????? Do you know that answer?

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Hi Terri. Oct 21, that is the same date as my 40th High School Union. Don’t have a question in mind right this minute, but will keep you in mind should one come up. Please remind us along the way up to that date that you are taking questions and will be our ‘go-between’. I wish I was going, I love going to those. Do you have questions of your own lined up yet? – the other Terri

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@robynmar

Hi folks! I’m just finishing up my Cipro and had a surprise diarrhea attack this morning. Also, trouble sleeping. No mucus is coming up, which worries me. The sneaky low temps are fewer. I’m still waiting for a report from my Infectious Diseases doctor; I’ll nudge him when I am done with the Cipro. My guess is that my MAC is dormant and I have other more common bacteria which is causing the trouble. I’m feeling very fortunate. By the way, asthma was always the go-to diagnosis when the doc couldn’t think of anything else. Then COPD. That was before the discovery of the MAC and M. lentiflavum. Bronchiectasis was the first diagnosis and is the underlying condition of my lungs. We’re having a surprise humid hot summer here in the Bay Area. But the fog is due to arrive any day now. blessings, Robyn

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Hi Robyn! I also wanted to add that surviving 4th Stage breast cancer in 1987 was quite an accomplishment. I don’t think very many survived that stage 4 breast cancer 30 years. Kudos to you STILL!!!

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@robynmar

Hi folks! I’m just finishing up my Cipro and had a surprise diarrhea attack this morning. Also, trouble sleeping. No mucus is coming up, which worries me. The sneaky low temps are fewer. I’m still waiting for a report from my Infectious Diseases doctor; I’ll nudge him when I am done with the Cipro. My guess is that my MAC is dormant and I have other more common bacteria which is causing the trouble. I’m feeling very fortunate. By the way, asthma was always the go-to diagnosis when the doc couldn’t think of anything else. Then COPD. That was before the discovery of the MAC and M. lentiflavum. Bronchiectasis was the first diagnosis and is the underlying condition of my lungs. We’re having a surprise humid hot summer here in the Bay Area. But the fog is due to arrive any day now. blessings, Robyn

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Jan, I run hot and cold every night, I feel like I sleep, yet am still aware that I constantly am putting the covers on and off of myself all night. I run a ceiling fan at night and have the temp set at 70-71. It helps to sleep in 100% cotton nightshirt, and sleep on 100% cotton sheets.

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Little old Kaiser out here also required 3 samples over three days….

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@robynmar

Hi folks! I’m just finishing up my Cipro and had a surprise diarrhea attack this morning. Also, trouble sleeping. No mucus is coming up, which worries me. The sneaky low temps are fewer. I’m still waiting for a report from my Infectious Diseases doctor; I’ll nudge him when I am done with the Cipro. My guess is that my MAC is dormant and I have other more common bacteria which is causing the trouble. I’m feeling very fortunate. By the way, asthma was always the go-to diagnosis when the doc couldn’t think of anything else. Then COPD. That was before the discovery of the MAC and M. lentiflavum. Bronchiectasis was the first diagnosis and is the underlying condition of my lungs. We’re having a surprise humid hot summer here in the Bay Area. But the fog is due to arrive any day now. blessings, Robyn

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I was saved by Tamoxifen, which was new at the time. I continued taking it for 15 years when they had to pry it out of my hands!

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I just finished 10 days of Cipro with side effects of insomnia and diarrhea. I’m exhausted. The symptoms of low grade temp and amount of sputum are less. We’ll see what the Infectious Diseases Doc has to say. I think the plan will be to not worry about the relatively inactive MAC bacteria and concentrate on the more opportunistic bugs like Proteus. I hope I don’t have to go on a maintenance schedule of antibiotics! I think it is interesting that there seems to be a trend not to try to “cure” the MAC with the big 3. It doesn’t seem to work. robynmar

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@cld120

Terri/@windwalker, this is Carolyn (59 yo diagnosed with MAC and mild bronchiecstasis earlier this summer.) I saw an ID doc at Mayo a couple weeks ago and start on the “Big Three” tomorrow. Actually, Azithromyacin this week, adding Rifampin and Ethambutol each of the following two Monday’s. I am trying to stay positive but am quite anxious about starting a minimum of 14 months of this regimen. Anyway, I’ve since gotten all my baseline tests, a pneumonia shot, started probiotics (Florastor) & had an endoscopy to assess GERD. Also began a routine of Albuterol inhalant, a nebulizer and Aerobika twice daily.

Here are a couple questions:
I have never produced phlegm or mucous.
How will we do sputum tests? (How often are they done, usually?)
Do you have to have a bronchoscopy each time you need one?
Thanks!

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I had a bronchoscopy in late May to biopsy nodules and an area that looked like a tunnel with fuzz in it which turned out to be MAC. (This was done because of a questionable CT scan.) I was quite anxious about the bronchoscopy when nurses explained I had to be awake so I could follow the doctors instructions. First, the pulmonologist spent ~10 minutes spraying numbing solution down my nose/throat, which he urged me to swallow. Then he threaded a slender tube down my nose (THAT I DID NOT FEEL), then down my throat to the lungs. The nurses explained that I had to be awake to “sing” which opened the lung valve (that normally closes when food or anything foreign nears). As soon as it was in, on the 2nd try, he told the nurse to give me Fentenyl through the IV. I don’t recall anything else. The only reason I knew what would take place is because I told the nurses how freaked out I was by this procedure. I did insist on them calling my doc to get permission to take a xanex, which helped!

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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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

Liked by Carolyn

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@cld120

Terri/@windwalker, this is Carolyn (59 yo diagnosed with MAC and mild bronchiecstasis earlier this summer.) I saw an ID doc at Mayo a couple weeks ago and start on the “Big Three” tomorrow. Actually, Azithromyacin this week, adding Rifampin and Ethambutol each of the following two Monday’s. I am trying to stay positive but am quite anxious about starting a minimum of 14 months of this regimen. Anyway, I’ve since gotten all my baseline tests, a pneumonia shot, started probiotics (Florastor) & had an endoscopy to assess GERD. Also began a routine of Albuterol inhalant, a nebulizer and Aerobika twice daily.

Here are a couple questions:
I have never produced phlegm or mucous.
How will we do sputum tests? (How often are they done, usually?)
Do you have to have a bronchoscopy each time you need one?
Thanks!

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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.

Liked by Carolyn

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@robynmar

I just finished 10 days of Cipro with side effects of insomnia and diarrhea. I’m exhausted. The symptoms of low grade temp and amount of sputum are less. We’ll see what the Infectious Diseases Doc has to say. I think the plan will be to not worry about the relatively inactive MAC bacteria and concentrate on the more opportunistic bugs like Proteus. I hope I don’t have to go on a maintenance schedule of antibiotics! I think it is interesting that there seems to be a trend not to try to “cure” the MAC with the big 3. It doesn’t seem to work. robynmar

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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

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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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.

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