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Anxious 23 year old male with MAC
MAC & Bronchiectasis | Last Active: Sep 22 8:42am | Replies (64)Comment receiving replies
@sueinmn Thank you so much for the thoughtful reply. I was tested for eosinophilic asthma and it was negative. The allergist took my blood and said my eosinophils were in a normal range (around 300 I think) but she put my on a trial short of Fasenra which takes the eosinophils down to 0. The Fasenra did not improve my asthma symptoms so she ruled that out.
I use a CPAP device. About a year ago I discovered mold on the inside of the tube connector to the CPAP and got an entirely new machine. I'm not sure if that could have contributed to anything. Since then I have been cleaning the machine weekly. My sleep doctor suggested that I get a oral dental appliance for sleep apnea rather than the machine since my sleep apnea is quite mild. I'm trying to have that made up and perhaps it would be a good idea to stop the CPAP for a bit, I'm not sure.
I have read studies online that long term use of the steroid inhalers can be a risk factor for MAC. Perhaps that is a contributing factor.
I have not been tested for CF but I think I should, how would I go about doing this?
I guess I'm also trying to see what I can do to improve my overall health and reduce these risk factors.
Thanks again for all your help. It is much appreciated.
Replies to "@sueinmn Thank you so much for the thoughtful reply. I was tested for eosinophilic asthma and..."
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@desk12111 When I started being seen at NYU Bronchiectasis & NTM center I was tested for CF. I think it was because my MAC was treated as part of a study that required ruling out CF. But certainly you can request it and they can set it up. I think some folks here have discovered they have CF through testing at an atypically advanced age!
I also have sleep apnea and was told to keep my equipment scrupulously clean (so I do).
If you have been infected or colonized with mold it would have shown up in your sputum cultures, so you can probably cross that concern off your list. When my very attentive PCP suspected sleep apnea I went to the sleep doc at NYU recommended by my BE/NTM team. I learned from her that a high percentage of people with chronic lung conditions have apnea and in those cases they want to treat aggressively since it puts extra stress on heart and lungs. For me it has made an enormous difference in my level of stamina.
So many conditions connect and overlap.
All best wishes for good (and calming) solutions.