Many of us have experienced this; you're not alone. There are things you can do to help yourself, however. Have you discussed the problem with your doctors to see what you can do to help yourself or how they could help you in dealing with the problem? Have you thought about asking for pulmonary rehab? If you haven't, I would seriously discuss the issue with all of your docs and see if a program like pulmonary rehab might not help you, or if not, what might help you?

Weight loss and exercise could help both problems, if approved by your docs. Back in 2000, I was very heavy, on 02 24/7 and did very little. I was being "efficient"; well, I got so efficient that I didn't do much of anything. I finally decided this was stupid and I started a very aggressive diet and exercise program. Over the course of 18 months I lost well over 100 pounds, got off the 02 completely, reduced most meds by at least 3/4, put my c-pap in the closet and got a whole new wardrobe.

It can be done, and it can make a huge difference in your breathing and activity level. Talk with your docs and see what YOU can do to make things better.

This is what I love about this site, and it happens every day that people ask a question on the Q&A and find they are not alone and can find people they can share their experiences and treatments. 😀

Thank you for writing back. I wonder how rare our condition is combined with the Immune Defiency .
You must be fatigued after your recent infection in lower left lobe. What did they call your infection?I'm unfamiliar with the cause of that.
Super energy...no I don’t have that. I have asthma... And take several inhalers. I have fatigue, and poor breathing at times, from the Bronchiectasis. Only time I get super charged is if I have caffeine. It makes my heart race.
I would love to keep in touch.

WOW! Kudos to you Jean.😘

Hi Victoria, you are the first I have met who is similar as well. I recently had a CATscan which showed lower lobe infection which was treated. Do you have super charged energy days followed by absolute fatigue? By the way really appreciate you reaching out