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Bronchiectasis treatment - best places to go?
MAC & Bronchiectasis | Last Active: Jan 10 11:10am | Replies (13)Comment receiving replies
Gtokaren,
I do not know how to find your personal email address.
I start at NJH on Jan 31st and am anxious to hear about your views.
I will be flying there from Bangor Maine, then on to our winter home outside of Phoenix for the winter.
I was misdiagnosed by a pulmonologist in Az last March. Returned to Maine in May and traveled 200 miles to a pulmonologist in NH where I was before retiring to Maine because the pulmonology clinic in Bangor (one hour from where we live) had closed.
He diagnosed me with bronchiectasis and I tested positive for MAC.
I am nervous about pseudomonas as my husband had it this past summer in a wound on his foot and lost a toe due to the infection getting into the bones.
We all seem to have various apprehensions.
I never heard of this disease or these different bacterial infection before.
I am learning so much reading these messages. I am so glad I found this site.
Any info you can share will surely help many of us.
Thank you,
Camille
Replies to "Gtokaren, I do not know how to find your personal email address. I start at NJH..."
Camille,
I am sorry to hear about your doctor problems, I can sympathize since I live in Bridgton, Maine. I am lucky do have found out about my lung problems, bronchiectasis and infections. I was referred to the Chest Medicine Clinic in Portland, Maine. I did not think the first doctor that I saw was doing anything to prevent me from getting sick, again, so I asked the clinic manager for a second chest medicine doctor. The second was is great, referred me to Allergy and Asthma Associates, where test showed I had CVID-Common variable immune deficiency. So, this was the cause of many of my problems, I am now doing weekly infusions, this has prevented me from getting sick and kept my lung problem under control. I also use saline 7% nebulizer, Breo, reduce dose to 100. and musinex. If you can see the chest medicine doctors, I recommend Dr. David Cohen, he takes it seriously.
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@camilleups Look at the top right of this page. Click on the envelope icon and you can DM (direct message) @lilianna .
Sorry to hear of the missed diagnosis. Sadly, easy to do because the disease(s) are rare. My bronchiectasis is due to an immune disorder, which was "missed" for over 20 years! I was not a clear cut case apparently.
It's great that you are seeking treatment at NJH as they specialize in bronchiectasis/MAC. Most pulmonologists do not. Wishing you safe and easy travels to CO!