1. < MAC & Bronchiectasis

Recently diagnosed

Posted by jhscott2014 @jhscott2014, Mar 22 2:25am

Hi,
I’m new to the group and recently diagnosed with a few different lung issues .
Over the last 4 years I have went from a diagnosis of, right middle lobe syndrome and bronchiectasis (found in ct scan ) to Aspergillosis ( untreated ) in 2021 to now Wangiella and microbacterium avium intercellulare found in cultures from last month . I see ID on Tuesday .( all my cultures weren’t back ) Who 1 month ago thought my symptoms were mild ( I have extreme fatigue and increase in cough and SOB ) and he isn’t sure if I should start treatment , my question is, do people sometimes go without treatment until things progress? Obviously, things have progressed for me over the last 4 years, I am 54 years old and don’t want to continually get worse by avoiding treatment . And what important questions do I need to ask ? I’ve made a list but worry I won’t ask the right things or enough ?
Thank you ,
Heather

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blm1007blm1007 | @blm1007blm1007 | Mar 27 8:23pm
In reply to @kathyjjb "Hi Barbara, I didn't know that Dr McShane was heading to NJH? To answer your questions:..." + (show)
@kathyjjb

Hi Barbara,
I didn't know that Dr McShane was heading to NJH? To answer your questions:
Unfortunately, I did not maintain a relationship with NJH after my move to AZ. I wish I had. I had very mild BE when I left Denver and now moderate BE with M. Abscessus. It was so minor (tiny area), I never really considered my BE much of a problem until it was. I did not wear a mask before Covid and my NJH never suggested it back in 2012 (my last visit with my NJH doctor). I'm happy that it is now commonplace and more people are masking up, especially when they're sick. NJH doctor told me to stay away from construction sites and whenever I got sick to immediately get on antibiotics. Unfortunately, my first AZ Pulmonologist refused to write me prescriptions telling me I had viruses. She was wrong. And, in 2020 I built a house. So, I had a really good NJH doctor and now paying for not listening to him. Had I still been seeing him; I probably would be much better off now. I did find another pulmonologist here, but I always thought I had a virus and prolonged getting on antibiotics. Not understanding (trusting the doctor), a virus infection typically evolves to bacterial due to the BE.
I haven't ordered the mouth tape yet but still plan on it. I am doing good during the day and it's carrying over somewhat to overnight. I'm rarely waking up with a super dry mouth. Thank you for the update regarding 3M Nexcare.
I do like pasta and I have 1 every week to 1 every 2 weeks. For lunch, I eat sandwiches. The bread is a good whole grain, but still carbs. BTW, I think there is a link between low Vitamin D levels and BE. I have been on D3 for a few years now and keeping it at normal levels. I'm now back on C and Zinc now. Best, Kathy

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Yes, considering that many of those we lost to Covid were found to be low on vitamin D, I do believe that it played a role in the big picture of my eventually coming down with BE. Low Vitamin D affects our sleep and can lead to severe complications such as I went through in 2015 due to low Vitamin D. You may know that about Vitamin D.
I had two severe pneumonias at the same time in the mid 80's.
I remodeled my house and do believe it is another factor that added to what eventually happened, BE. Just those three things alone are possible reasons for my BE and I am sure there are other factors that could have come into "play" with bringing on the BE. My philosophy is, "It is never one thing." So as we live our life things may be, and probably are, building/happening inside our systems without our realizing. My belief.
Yes we all, including me, probably have had things told to us that we wish we had followed,
Glad you are seeing improvement with the mouth breathing.
It may have been a typo but to clarify Dr. McShane moved onto the National Institutes of Health in Bethesda, Maryland.
Best to YOU also,
Barbara

REPLY
oma5 | @oma5 | Mar 28 1:55pm

Has anyone had the injections of fasenra? It is a biologic. I have been diagnosed with uncomplicated Bronchiectasis. My eosinophil count is very high so my immune system over reacts. I mostly stay home away from people and pollens etc.
Sue

REPLY
1 reply
pacathy | @pacathy | Mar 29 5:34am
In reply to @rozie83 "Thank you, Kathy. I had never heard of BE until I was diagnosed. I have a..." + (show)
@rozie83

Thank you, Kathy. I had never heard of BE until I was diagnosed. I have a flutter device and use it sometimes. I am going to take it with me to the pulmonologist when I go next month. I think I got it from breathing in smoke from Maple and Ash, a restaurant near my building. I can't prove it, however. What is NJH? Do you get infections often? I live at Camelback and Scottsdale Rd. I know where you live. I really appreciate your feedback. I stumbled on the website and am so glad I did. Hope you're having a good day. Roz

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Generally, we use the Aerobika or Acapella 1-2x a day. It seems no sputum or small amounts daily (I’m in no sputum group) are allowed to do it once daily. People who are bringing up sputum, need to get the sputum out since it’s a breeding ground for infections. They do it twice a day, every day.
We usually do it after nebulizer albuterol and/or hypertonic saline.
The video mentioned by McSwane has great info.

REPLY
1 reply
rozie83 | @rozie83 | Mar 29 2:05pm
In reply to @pacathy "Generally, we use the Aerobika or Acapella 1-2x a day. It seems no sputum or small..." + (show)
@pacathy

Generally, we use the Aerobika or Acapella 1-2x a day. It seems no sputum or small amounts daily (I’m in no sputum group) are allowed to do it once daily. People who are bringing up sputum, need to get the sputum out since it’s a breeding ground for infections. They do it twice a day, every day.
We usually do it after nebulizer albuterol and/or hypertonic saline.
The video mentioned by McSwane has great info.

Jump to this post

Thank you. My pulmonologist just kind of mentioned it. I will talk more to her when I see her.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 29 9:10pm
In reply to @oma5 "Has anyone had the injections of fasenra? It is a biologic. I have been diagnosed with..." + (show)
@oma5

Has anyone had the injections of fasenra? It is a biologic. I have been diagnosed with uncomplicated Bronchiectasis. My eosinophil count is very high so my immune system over reacts. I mostly stay home away from people and pollens etc.
Sue

Jump to this post

Please see my post earlier today about biologics - according to my pulmonologist they are considered a medication for when other drugs and therapies do not achieve control of asthma or other lung issues.
Do you fall into this category?

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