1. < MAC & Bronchiectasis

Have Bronchiectasis, recently diagnosed with pseudomonas

Posted by shiell @shiell, Feb 25, 2017

I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and realitively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.

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raney | @raney | Oct 22, 2021
In reply to @rits "Thanks. I'm still trying to figure out if my deterioration is because of pseudomonas. I have..." + (show)
@rits

Thanks. I'm still trying to figure out if my deterioration is because of pseudomonas. I have another ct scan coming up next month and a visit with my pulmonogist - all happening before my appointment with my bacteria expert. Sigh. I have more sputum but it's always clear . I have really bad shortness of breath keeping me home pretty much 24/7.

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What does a bacteria expert do? I am interested in finding one.

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1 reply
rits | @rits | Oct 23, 2021
In reply to @raney "What does a bacteria expert do? I am interested in finding one." + (show)
@raney

What does a bacteria expert do? I am interested in finding one.

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There are doctors who specialize in lung mycobacteria (ntm). They are pulmonogists and infectious disease doctors who choose to work in this area - doing research and treating patients like us. Many are at NJH in Denver and UT in Tyler Texas. There are some at Mayo, NIH, NY. etc.

I was treated by Dr McShane in Chicago but she left for Tyler in Jan 2020 because she did not have enough ntm patients and was seeing pulmonary patients with other lung problems. Her interest is in patients like us so she left her life here and moved to Texas where she has the patients she wants to treat along with other doctors who share her interest in us.

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1 reply
rits | @rits | Oct 23, 2021
In reply to @raney "Your path to to being diagnosed sounds a lot like mine. I had terrible chest congestion,..." + (show)
@raney

Your path to to being diagnosed sounds a lot like mine. I had terrible chest congestion, coughing constantly day and night tan or green tint sputum about 2 1/2 years ago. before that I would get so that I could not breath when exercising. Explained all this to my PCP. I thought it was my heart causing the breathing problems and the coughing was a bad case of bronchitis. I asked for antibiotic on 2 different occasions & the PCP ordered for 5 days or 10 days. I finally asked for referral to a pulmo., He ordered a sputum culture, CT scan, pulmonary function test. sputum showed couple of different fungus, but he said they were common and everywhere and nothing to worry about. So every day I kept thinking tomorrow will be better! I did not know the meaning of the word bronchiectasis ! Got pseudomonas.
I changed PCP & Pulmo practice and have been to pulmonary specialty clinic and a teaching hospital. I now have smart vest, nebulizer, Aerobika and meds for neb. What I would like to know is what stage I am in.
I have not been able to cough in months! Very difficult to get a sputum spec. I very seldom feel air going deep into my lungs. Taking meds now for thrush in my mouth and esophagus. Now I have come to the rude awakening that I am not going to be well tomorrow without a miracle from God.

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I'm so sorry you are going through all this.

If I remember correctly, you are taking budesonide after nebbing. Budesonide is a steroid and probably caused the thrush you have. Even carefully rinsing your mouth after using it does not always prevent some if it remaining snd steroids provide an environment where thrush can grow. They also provide an environment where bacteria grow and our doctors do not want us inhaling it.

Frankly I was surprised your doctor prescribed it knowing you have bacteria in your lungs.

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1 reply
raney | @raney | Oct 23, 2021
In reply to @rits "I'm so sorry you are going through all this. If I remember correctly, you are taking..." + (show)
@rits

I'm so sorry you are going through all this.

If I remember correctly, you are taking budesonide after nebbing. Budesonide is a steroid and probably caused the thrush you have. Even carefully rinsing your mouth after using it does not always prevent some if it remaining snd steroids provide an environment where thrush can grow. They also provide an environment where bacteria grow and our doctors do not want us inhaling it.

Frankly I was surprised your doctor prescribed it knowing you have bacteria in your lungs.

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That is interesting! I will ask about that.

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raney | @raney | Oct 23, 2021
In reply to @rits "There are doctors who specialize in lung mycobacteria (ntm). They are pulmonogists and infectious disease doctors..." + (show)
@rits

There are doctors who specialize in lung mycobacteria (ntm). They are pulmonogists and infectious disease doctors who choose to work in this area - doing research and treating patients like us. Many are at NJH in Denver and UT in Tyler Texas. There are some at Mayo, NIH, NY. etc.

I was treated by Dr McShane in Chicago but she left for Tyler in Jan 2020 because she did not have enough ntm patients and was seeing pulmonary patients with other lung problems. Her interest is in patients like us so she left her life here and moved to Texas where she has the patients she wants to treat along with other doctors who share her interest in us.

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Thank you for explaining. I will ask if there is a bacteria specialist in commuting distance of where I live. Not able for plane or long trip.

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2 replies
rits | @rits | Oct 23, 2021
In reply to @raney "Thank you for explaining. I will ask if there is a bacteria specialist in commuting distance..." + (show)
@raney

Thank you for explaining. I will ask if there is a bacteria specialist in commuting distance of where I live. Not able for plane or long trip.

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Same here. Luckily Dr McShane has agreed to continue treating her Chicago patients through telemedicine.

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Jennifer | @megan123 | Oct 23, 2021
In reply to @thumperguy "Megan, like you, one of my most irksome symptoms is shortness of breath. It intrudes into..." + (show)
@thumperguy

Megan, like you, one of my most irksome symptoms is shortness of breath. It intrudes into daily in a way that’s is difficult to ignore.

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Hi Thumperguy..is your shortness of breath due to Bronchiectasis progression?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 23, 2021
In reply to @raney "Thank you for explaining. I will ask if there is a bacteria specialist in commuting distance..." + (show)
@raney

Thank you for explaining. I will ask if there is a bacteria specialist in commuting distance of where I live. Not able for plane or long trip.

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What you want to ask for is probably an infectious disease (ID) specialist. This is it's own specialty, but in many areas, an internist, pulmonologist or other doc will pick it up as a sub-specialty.
You own pulmonologist can also send your specimens to National Jewish Health in Denver, then telephone consult with someone there to work out your plan. (That is what my own ID & pulmonologist in Minnesota did when they were unsure of what to do next with my infection.)
Sue

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2 replies
raney | @raney | Oct 23, 2021
In reply to @sueinmn "What you want to ask for is probably an infectious disease (ID) specialist. This is it's..." + (show)
@sueinmn

What you want to ask for is probably an infectious disease (ID) specialist. This is it's own specialty, but in many areas, an internist, pulmonologist or other doc will pick it up as a sub-specialty.
You own pulmonologist can also send your specimens to National Jewish Health in Denver, then telephone consult with someone there to work out your plan. (That is what my own ID & pulmonologist in Minnesota did when they were unsure of what to do next with my infection.)
Sue

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Thank you. This is very helpful. I will share this.

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thumperguy | @thumperguy | Oct 23, 2021
In reply to @megan123 "Hi Thumperguy..is your shortness of breath due to Bronchiectasis progression?" + (show)
@megan123

Hi Thumperguy..is your shortness of breath due to Bronchiectasis progression?

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Don’t know. It hasn’t become an acute problem. If it does I’ve have an Albuterol inhaler I can use.

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