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.

Liked by tdrell, Lisa Lucier

@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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You can request that you get a TRUE 6 week MAC culture. Especially if it would ease your mind to know for sure.

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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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It appeared each time that the culture was requested but….. nothing has ever come back and when I check with the lab, they have nothing. Do you know anything about what lung function percentage should be for an old lady 76 years old????

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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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Jan, no, I do not know. Bear in mind, you are not a typical ‘old lady’, you have bronchiecstasis. That and asthma affect your lung function. My lung function is at 44% and I am 58 yrs old. My doctor said that if it does not drop any further; that I could live a long time like this. On the bright side, you are doing way better than I am!

Liked by Lisa Lucier

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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’ve never had trouble sleeping and before the Cipro I was sleeping 3-4 hours a day with naps and 8 hours at night. Didn’t realize that “hard to sleep” was a side effect of an antibiotic. My mind feels likes it is on steroids. Has anyone else had this side effect? Robyn

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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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Robyn, I take Naproxen for arthritis and BP meds and antibiotics every month for bronchiectasis and I have no idea the culprit but —- I sleep only 2 hours no matter what time I go to bed. Cannot go back to sleep and it hurts too much to lie there so I get up and go to the office and can pass an hour or so quickly in there. Then, I go back to bed and can usually sleep about 4 more hours. That’s all the sleep I get. I’m not a napper but wish I could. Also have been having to change night clothes because of the sweating. Don’t like that either and have no idea from where it’s coming except that Mayo’s ask me if I had night sweats and I said “no” — which was true two years go but ……. started soon after. They told me at that time that is a side effect of bronchiectasis…..

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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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You are encouraging — for sure. Thanks for all your help.

Liked by Lisa Lucier

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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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Before I started treatment, I was sleeping all the time. I miss it. I hope I don’t become “Sleepless in California”! I also had heavy night sweats before the antibiotics. I think it is part of the body fighting an infection, not a side effect. From the University of Texas Medical Center: “Other symptoms of illness in MAC patients with nodular lung infections are low-grade fever, night sweats, loss of appetite (“I never get hungry), and mild weight loss.” I had all of those. I still have the fevers, but less of them. Bronchiectasis can cause all of them. By the way, I am 89 years old, survived 4th stage breast cancer in 1987 (where the radiation caused my future lung problems) and an all-year bout with MAC in 2001. I can manage this…..blessings, Robyn

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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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Windwalker and everyone….not sure how to post this so everyone will see…here goes…and for those not attending …l am planning on it…so a list of questions can be constructed for those unable to attend as was done for MAy 2017 woirkshop in Washington DC>
NJH will be doing it
“2017 NTM workshop Series for Patients and Families”
on October 21st 830am to 330pm in Denver on their campus….cost is $25 no doubt for snacks and lunch.
only that and registration sheet is on Nationaljewishhealth.org site…buried…no details yet but that will no doubt emerge. No doubt it too will be videod as were the 2015 and 2016 series.
tdrell terri d

Liked by Carolyn

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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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@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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Hi Terri, I am in your club Terri, asthma and COPD with bronchiectasis. Never heard that term “co-morbid disease” sounds depressing, anybody know the life span for people like us?
I want to thank again dear Katherine for all her great information. Thanks to her I got CT Scan and will be getting a Bronchoscopy on August 15th. Not looking forward to this but will be glad to find out what kind of bacterias that are still lurking in my lungs.

I also have started a twice weekly class called “Community Respiratory Program (Pulmonnarry Rehabilitation) its sponsored by The Vancouver Coastal Health Program.
Free with your Doctors prescription. This class explains everything pertaining to all these diseases and also have an excercise coach along with treadmill and bicycles.
Since I no longer go to the public pool for my aquatic excercice, I will have to change my habits and do only non water work outs like yoga etc.

I am doing all this but I must say with great difficulty because of the lack of energy and contrary to all of you , I’m always hungry and have gained weight and I’m most of the time
cold, so go figure….
Anyway enough about me , thanks for listening and all the best to Katherine .

Andrée

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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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This certainly makes you an inspiration — thanks for sharing with us

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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.  It was no big deal.  They almost put me out so I did not feel anything.Jan

Liked by Carolyn

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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

Liked by Carolyn

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Linda, I like the fact that NJH takes three sputem samples over three days. From what I had learned at the conference in D.C.; that is the Gold Standard for testing nowadays. The Mayo doesn’t do that (yet).

Liked by tdrell

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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!

Jump to this post

Jan, I had a bronchoscopy in 2005 and was NOT put out, I believe the dr did that intentionally to be sadistic. There is more to that story that I won’t go into now. But I swore I’d rather die than go through that again. I ocassionally go to a lung transplant support group; those transplantees have to have one every three weeks right after their transplant. They all said it is a piece of cake because they do put you under. Wish I had known that that is how it is supposed to be done!

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