Bronchiectasis: New Diagnosis

@sueinmn I liked your post above, but was particularly interested in the last part when you mentioned that you eventually switched to someone else whose style of practice is more compatible with a curious and proactive patient. This may end up being my case and from what you write, I am thinking you may be seen at Rochester Mayo and if possible, may I inquire as to who this doctor is? If so, thank you for this information as my doctor seems more directive than I may want at this point.

@migizii thx so much for your information. If I could see a pulmonologist in St. Paul that would save me driving time! Since I live in Bemidji, a drive seems to always be needed. If you’d be open to sharing who you see with me, I may consider pursuing this as you described her style of interaction with her patients, along with her expertise. I don’t know if they’d accept me, but it may be worth a try. Thx again and have a wonderful evening!

I am 52 yrs old with an autoimmune disease and recently been diagnosed with bronchiectasis and pseudomonas. I was on 3 rounds of oral antibiotics. Then my pulmonologist put me on gentomyacin in the nebulizer with albuterol first. Advair twice a day and prescription Flonase twice a day. Along with mucinex twice daily. I used the gentomycin twice daily for 28 days then prednisone for a week following. I felt slightly better but not 100%. My chest is tight my upper back hurts, when I lay on my side I feel like my lungs are being crushed. I was recently tested for CF and have one gene but doc says don’t worry you don’t have CF. I’m extremely tired and don’t feel well all the time. In March I started working from home due to COVID and my doctor suggested it was a good idea and recently told I can go back into the office. I feel like I can’t make it through the day as I’m extremely tired.
Questions
Is it normal to feel like you can’t work a full day? I was normally working 10 hrs a day and now feeling like I can’t make it to 6 hours.
Has anyone had to take a leave of absence?
Has anyone had good results from gentomycin? I ask because I sent a new sputum culture in as I think the pseudo is not gone.
Does the pain in your chest when breathing ever go away?
Does anyone else have upper back issues due to the lung issues?
Do you ever not feel so tired?
How long does it take to rid your body of pseudo?
My apologies for so many questions but I am new to this and need answers. My dr says you can’t get rid of the bronchiectasis but learn to manage it. I’m not feeling managed or normal.
Any feedback is greatly appreciated.

Hello. Thank you for being here. I was diagnosed with MAC 8 weeks ago at the University of Birmingham by a pulmonologist who did a bronchoscopy with several cultures and one grew out MAC.
I was started on 3 antibiotics Rifampin, Ehambutol and Azithromycin. High doses every day due to a cavitation. For the 5 weeks I’ve been taking the antibiotics, I have been nauseated and vomiting after taking the Ethambutol. Has anyone not tolerated the antibiotics? If so what did your doctor do?
I appreciate this group. Thank you. Carol

Carol, Hello, depending on what your suseptibility tests shows; you may be able to have the Ethambutol substituted with inhaled Amikacin. May want to ask your dr about that. Do you have your suseptibilty test results at hand to discuss?

Hello Joann. I can totally relate to every question that you asked here. In 2005,I had to leave the workforce at the age of 48. I was just too ill to drag myself in to my workplace every day, and was also diagnosed with bronchiectasis and mac. I went on disability in 2010. My lung function was so measurably low that I had no trouble qualifying. That was the yr I had time to research this disease and seek good medical attention. I lived in total misery until 2013. I had the back and chest pain, the constant coughing, acid reflux burning my esophagus, shortness of breath, intolerance to smells, rapid and drastic weight loss, lack of appetite, sleepless nights, night sweats, and extreme fatigue. I felt so wretched; that I had my Living Trust drawn up. Seriously, I felt like death was near. I started treatment at Mayo Clinic in 2013, and that is when my quality of life improved ten-fold. My mac and pseudomonas got properly treated and the regular 7% saline treatments also helped to improve my lung function. I was fortunate; my mac went negative after one year, and my pseudomonas went negative after 1 month. I stayed on prophalactic antibiotics (preventative measure) for 7 more yrs to keep this away. I was just taken off of them two months ago. What may have also helped me is that I moved away from a 'Hot spot' (Az) for mac to an area where my water has tested negative for it (SC). At one point, I could not walk 10 feet without being out of breath and needing to sit down. Now, I can walk my whole neighborhood and ride my bike for miles. My pain is gone, as is my cough. I am still very short of breath, but I live with it. At least I feel good most of the time. I am lucky, because for some, this disease is a never ending battle. I want you to know that there is hope for getting or feeling better again. I am curious if you have started implementing any of the suggestions you have read on this site yet?

Hello Joann. I can totally relate to every question that you asked here. In 2005,I had to leave the workforce at the age of 48. I was just too ill to drag myself in to my workplace every day, and was also diagnosed with bronchiectasis and mac. I went on disability in 2010. My lung function was so measurably low that I had no trouble qualifying. That was the yr I had time to research this disease and seek good medical attention. I lived in total misery until 2013. I had the back and chest pain, the constant coughing, acid reflux burning my esophagus, shortness of breath, intolerance to smells, rapid and drastic weight loss, lack of appetite, sleepless nights, night sweats, and extreme fatigue. I felt so wretched; that I had my Living Trust drawn up. Seriously, I felt like death was near. I started treatment at Mayo Clinic in 2013, and that is when my quality of life improved ten-fold. My mac and pseudomonas got properly treated and the regular 7% saline treatments also helped to improve my lung function. I was fortunate; my mac went negative after one year, and my pseudomonas went negative after 1 month. I stayed on prophalactic antibiotics (preventative measure) for 7 more yrs to keep this away. I was just taken off of them two months ago. What may have also helped me is that I moved away from a 'Hot spot' (Az) for mac to an area where my water has tested negative for it (SC). At one point, I could not walk 10 feet without being out of breath and needing to sit down. Now, I can walk my whole neighborhood and ride my bike for miles. My pain is gone, as is my cough. I am still very short of breath, but I live with it. At least I feel good most of the time. I am lucky, because for some, this disease is a never ending battle. I want you to know that there is hope for getting or feeling better again. I am curious if you have started implementing any of the suggestions you have read on this site yet?

@joanng Did they also do a sputum culture for MAC (mycobacteria aviums complex) - often MAC and pseudomonas coexist and both need to be treated with completely different meds.

Also, multiple rounds of antibiotics can leave you with fatigue, and you are correct that they may not have cured your original infection.

With multiple health issues, it is quite reasonable to request accommodations to continue to work from home until there is a vaccine for Covid. I believe it qualifies as a reasonable accommodation under the ADA.

Eventually, once they get the infection(s) under control you should begin to feel better.

Have you been monitoring your oxygen levels? Very hard to function if they are low.
Sue

Hello Joann. I can totally relate to every question that you asked here. In 2005,I had to leave the workforce at the age of 48. I was just too ill to drag myself in to my workplace every day, and was also diagnosed with bronchiectasis and mac. I went on disability in 2010. My lung function was so measurably low that I had no trouble qualifying. That was the yr I had time to research this disease and seek good medical attention. I lived in total misery until 2013. I had the back and chest pain, the constant coughing, acid reflux burning my esophagus, shortness of breath, intolerance to smells, rapid and drastic weight loss, lack of appetite, sleepless nights, night sweats, and extreme fatigue. I felt so wretched; that I had my Living Trust drawn up. Seriously, I felt like death was near. I started treatment at Mayo Clinic in 2013, and that is when my quality of life improved ten-fold. My mac and pseudomonas got properly treated and the regular 7% saline treatments also helped to improve my lung function. I was fortunate; my mac went negative after one year, and my pseudomonas went negative after 1 month. I stayed on prophalactic antibiotics (preventative measure) for 7 more yrs to keep this away. I was just taken off of them two months ago. What may have also helped me is that I moved away from a 'Hot spot' (Az) for mac to an area where my water has tested negative for it (SC). At one point, I could not walk 10 feet without being out of breath and needing to sit down. Now, I can walk my whole neighborhood and ride my bike for miles. My pain is gone, as is my cough. I am still very short of breath, but I live with it. At least I feel good most of the time. I am lucky, because for some, this disease is a never ending battle. I want you to know that there is hope for getting or feeling better again. I am curious if you have started implementing any of the suggestions you have read on this site yet?