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.

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

@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

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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

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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).

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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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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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@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?

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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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