1. < MAC & Bronchiectasis

Bronchiectasis: New Diagnosis

Posted by navylady @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 19, 2020
In reply to @joanng "Thank you for all the information of what you were going through. This is exactly every..." + (show)
@joanng

Thank you for all the information of what you were going through. This is exactly every symptom I currently have. What antibiotics got rid of the pseudomonas? My culture was at +3 and now at +4 and am currently on gentomycin. Appreciate you sharing.
Joann

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Hi Joann. I was put on inhaled tobramycin. It knocked the pseudomonas right out in a month's time. Mind you, this med does not work for everyone. Do you have your suseptability test results? Do you know what those are?

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 19, 2020
In reply to @joanng "Hi Terri, Thank you for sharing your experiences. Sometimes I feel I’m at the end but..." + (show)
@joanng

Hi Terri,
Thank you for sharing your experiences. Sometimes I feel I’m at the end but I’m not ready to stop working I still have plenty of years to go but just getting into the shower is an effort. I have tried postural drainage which I have not noticed a changed yet but maybe because my pseudomonas is back so I’m back on the gentomycin and albuteral in the nebulizer, I still take mucinex 2 tabs of mucinex twice daily, along with advair and all my other meds. I’m going to have my partner try doing the clapping this weekend to see if that gives some relief. Where do I get this from?
The dr told me it’s everywhere in water soil etc and I’m more susceptible that people without health issues. Sounds like you are telling me certain geographical areas have a higher risk.

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That is right Joann, some geographical areas are 'hot spots' for MAC. May I ask what state you live in?

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2 replies
auntnanny | @auntnanny | Jul 19, 2020

windwalker....... I'm thinking I'm going to have to stop the toby. I've worked with it over a year and no differentce in the pseudomonas. Yesterday about 2 minutes after finishing toby I knew I was in more trouble. Breathing was next to impossible. I took my oxygen level and it was only 80. My younger son was here with me and I was thankful. I just sat in a chair and gradually tried to breathe a little deeper. Finally got it up to 90 but at 80, I thought I was going to fall on my face. I had used the inhalation Puleri just before toby as it is supposed to keep airways open. Big mistake. I'm just discouraged and perplexed as to why I can't make this work. Is anyone else out there with toby breathing problems????

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 19, 2020
In reply to @poodledoc "Hello Terri, Speaking of susceptibility tests. I was first diagnosed with MAC in Sept 2019 from..." + (show)
@poodledoc

Hello Terri, Speaking of susceptibility tests. I was first diagnosed with MAC in Sept 2019 from a bronchoscopy culture performed at the same hospital. I was surprised that a susceptibility test was not done, but I started the big 3 anyway. This past May another culture (sputum sample) was sent to Quest laboratories and I insisted that susceptibility testing be done at the same time and my Dr said he would order that. 8 weeks later my culture is still positive for MAC and M. abscessus as well, but the susceptibility test was never done. He then started me on Arikayce. I am seeing an Infectious disease doctor in 2 days and I want to get another culture sent to NJH this time to include a susceptibility test. I checked the NJH website and they have a total of 11 different varieties of susceptibility tests for NTMs.

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@poodledoc. I am super dismayed that your lab tests did not include a suseptibility test! Your dr is taking a stab in the dark and randomly throwing antibiotics at you. That is just wrong! It should not a 'One Size Fits All' treatment plan. Some species (now over 150 varieties) of mac are resistant to various antibiotics. @joann, this is good for you to know as well. I would INSIST on a suseptibilty test and insist on you having a hard copy of that and the sputem results in your hands. It is good to keep a file of those lab tests. You would be surprised how they come in handy for future reference.

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2 replies
poodledoc | @poodledoc | Jul 19, 2020
In reply to @windwalker "@Poodledoc. I am super dismayed that your lab tests did not include a suseptibility test! Your..." + (show)
@windwalker

@poodledoc. I am super dismayed that your lab tests did not include a suseptibility test! Your dr is taking a stab in the dark and randomly throwing antibiotics at you. That is just wrong! It should not a 'One Size Fits All' treatment plan. Some species (now over 150 varieties) of mac are resistant to various antibiotics. @joann, this is good for you to know as well. I would INSIST on a suseptibilty test and insist on you having a hard copy of that and the sputem results in your hands. It is good to keep a file of those lab tests. You would be surprised how they come in handy for future reference.

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Terri , I was not happy about the way my case was handled by my Pulmonologist. The best thing he did for me was a referral to Dr Fiske , an ID doctor at Vanderbilt. I just saw her her Thursday and was very impressed with her knowledge of MAC/Bronchiectasis. I gave another sputum sample for culture AND susceptibility testing. She routinely sends all her cultures to National Jewish Health. (this also impressed me). She also started me back on Azithromycin and Ethambutol daily along with the Arikayce I have been taking. So now the long wait to get results back from the lab. So if anyone reading this is wondering whether or not to get an ID doc, wonder no more, he/she will be much more likely to be up to date on MAC/Bronchiectasis.

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1 reply
irene5 Irene Estes | @irene5 | Jul 19, 2020
In reply to @poodledoc "Terri , I was not happy about the way my case was handled by my Pulmonologist...." + (show)
@poodledoc

Terri , I was not happy about the way my case was handled by my Pulmonologist. The best thing he did for me was a referral to Dr Fiske , an ID doctor at Vanderbilt. I just saw her her Thursday and was very impressed with her knowledge of MAC/Bronchiectasis. I gave another sputum sample for culture AND susceptibility testing. She routinely sends all her cultures to National Jewish Health. (this also impressed me). She also started me back on Azithromycin and Ethambutol daily along with the Arikayce I have been taking. So now the long wait to get results back from the lab. So if anyone reading this is wondering whether or not to get an ID doc, wonder no more, he/she will be much more likely to be up to date on MAC/Bronchiectasis.

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@ poodledocThat is my “cocktail” as well! And you know I second the ID doctor response. irene5

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joann | @joanng | Jul 19, 2020
In reply to @windwalker "Hi Joann. I was put on inhaled tobramycin. It knocked the pseudomonas right out in a..." + (show)
@windwalker

Hi Joann. I was put on inhaled tobramycin. It knocked the pseudomonas right out in a month's time. Mind you, this med does not work for everyone. Do you have your suseptability test results? Do you know what those are?

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Thank you for your reply. I have not had the test done yet and it has not been mentioned either.
I live in NY.

REPLY
joann | @joanng | Jul 19, 2020
In reply to @windwalker "@Poodledoc. I am super dismayed that your lab tests did not include a suseptibility test! Your..." + (show)
@windwalker

@poodledoc. I am super dismayed that your lab tests did not include a suseptibility test! Your dr is taking a stab in the dark and randomly throwing antibiotics at you. That is just wrong! It should not a 'One Size Fits All' treatment plan. Some species (now over 150 varieties) of mac are resistant to various antibiotics. @joann, this is good for you to know as well. I would INSIST on a suseptibilty test and insist on you having a hard copy of that and the sputem results in your hands. It is good to keep a file of those lab tests. You would be surprised how they come in handy for future reference.

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My healthcare providers have an online patient portal so I have access to all of my lab tests and other information regarding each visit.
I will request a susceptibility test How is this test performed?

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1 reply
Angie T | @terryabk | Jul 21, 2020
In reply to @navylady "It is a joy to tell you something about me that has such good memories, and..." + (show)
@navylady

It is a joy to tell you something about me that has such good memories, and was a positive experience in my life. A mustang officer is a person who joined the Navy as an enlisted person, and who received their college degree through the Navy became a commissioned officer. Hard work, but worth it. I was selected for a program called the Navy Enlisted Scientific Education Program. They sent me to Purdue University. BTW, you know Chief Petty Officers are widely respected. They have come up through the ranks to the higher enlisted grades. I'm proud of his service, too.

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Boiler Up! It’s fun to run into fellow alumni, even if it’s in a medical setting. My hubby always wears a Purdue shirt when we go to my MD Anderson appointments, it always draws conversations with fellow boilers. I hope you can find a good pulmonologist quickly, and agree Mayo would be a great place to start. I luckily have a good one here in St Louis. My Bronchiectasis is a result of lung damage from radiation treatments and surgery for Neuro-Fibro Sarcoma in the nerve center of my right shoulder. My oxygen needs vary, right now range 3-4 liters, but years ago I was needing 6 or more. I’m extremely prone to bronchitis, but haven’t had pneumonia in many years, thankfully. Best of luck.

REPLY
joann | @joanng | Aug 1, 2020
In reply to @windwalker "That is right Joann, some geographical areas are 'hot spots' for MAC. May I ask what..." + (show)
@windwalker

That is right Joann, some geographical areas are 'hot spots' for MAC. May I ask what state you live in?

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Is New York a hotspot for MAC?

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