Connect
Comment receiving replies
I was recently diagnosed with MAC and bronchiectasis. I am being treated by an infectious disease Dr. At a teaching hospital in Portland Or. OREGON HEALTH SCIENCE UNIVERSITY
I'm in a clinical trial. Like most of you I was so apprehensive about starting this long treatment of a year or two. My breathing was getting worse by the day so I truly had no choice. I take only 2 drugs Azithrymicin and Ethambutol.
3 days a week at night with ice cream.. yes.... that IS EVEN ON RX!! LOL
NO SIDE EFFECTS and great results. In 2nd week my breathing improved 50%....I still Have bit of a cough & fatigue but now in 4 th week that's even better. I exercise daily, walking and strength training and I get lots of rest . Use nebulizer And the flutter. I'm so excited to feel so improved..I truly thought I was headed down hill fast. I was not my self at all.
My team of Dr's are amazing... my best advice is to be proactive.... well read about your lung disease.. and a part of your team.
This is all coupled with autoimmune hepatitis so my liver and lungs fight one another. My immune system is so compromised that I get bacteria in my lungs easily.
I've been depressed but, found freedom in exercise... and dancing put a smile on my face.
My treatment working so fast gave me HOPE!
Replies to "I was recently diagnosed with MAC and bronchiectasis. I am being treated by an infectious disease..."
Connect
Hi @aliveandwell I'm curious about your doc @OHSU. I live in Portland from November through March and then am in Maine the rest of the year. I have a doc in the ID Department @OHSU. I saw him in person 1 time...have had 1 video conference and my next appointment will be by phone. I feel frustrated since he has not asked me to have a follow-up CT. I don't feel bad but would really like to know what is going on in my lungs. I am not willing to start the treatment unless my quality of life becomes compromised. I feel tired a lot, I cough some but it's unproductive. If I get a cold it goes right to my lungs. I have fatigue but it's manageable.
I'm so happy that you are feeling better and are happy with your doctor. Does he actually see you (in person)? Have you met Dr. Strnad @OHSU? He came highly recommended and studied with Dr. Hurtado (a legend at MGH). I saw Dr. Hurtado and loved her but Boston is pretty far away for me in the event of any emergency and she is booked out a year in advance! I welcome your thoughts.