Bronchiectasis: New Diagnosis

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.

@joanng...I will answer the questions I can and I'm sure others will chime in to help you soon.You can feel better, but it will take some time. I had constant chest and back pain. The constant coughing continued until I found the cause of my lung damage- acid reflux. I had to change my diet and sleep upright. This cut down on the cough after antibiotics, steroids, and postural drainage (see You-tube) My acupuncturist diagnosed and successfully treated nerve pain and now I have been well for 2 years with only the occasional bronchitis.
Many of our members continue to work. I would suggest you analyze your work schedule for energy sappers, take naps and ask to work from home.
I had to retire in order to heal. Since you are 20 years younger, you will have a better chance of continuing to work if you make adjustments. Good luck!

Thank you for your reply. I have had to adjust my sleeping position from a side sleeper to elevated on my back. Unfortunately, my cause of lung disease is from my autoimmune disease that causes inflammation. I do take plaquenil, and anti inflammatory meloxicam daily so that helps reduce the inflammation some. Thank you for your input.

@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

Thank you for your reply. I’m not sure if they tested for mycobacteria aviums complex,
I will ask. I have not monitored my oxygen that would be logical. I know awhile back it was at 95%. I never heard of mycobacteria aviums complex until I became a member of this site.
Wouldn’t drs normally text for this without being asked especially being a pulmonologist? Or should I start being a stronger advocate for myself?
Joann

@joanng You asked "Wouldn’t drs normally text for this without being asked especially being a pulmonologist? Or should I start being a stronger advocate for myself?" The short answer is "probably not."

If you spend some time reading the various discussions in this group, you will see that not only do doctors not automatically test for MAC, even many pulmonologists have little experience treating it. Most all well-versed in treating asthma & COPD, but less so with bronchiectasis and the related treatments and infections.

Like many others in this group, I too had not heard of MAC or bronchiectasis until it was diagnosed, when I had severe pneumonia & what appeared to be "an intractable asthma attack for over 4 months" that were not responding to treatment. After a lung x-ray, a sharp-eyed radiologist told my primary what he suspected and that got the ball rolling on treatment.

That is why we encourage you to:

Educate yourself.
Here is one place to start: https://www.lung.org/lung-health-diseases/lung-disease-lookup/bronchiectasis/symptoms-diagnosis

Advocate for yourself.
Armed with the knowledge you gain, develop a list of questions to ask about your diagnosis and treatment. Many of us are treated in practices where there is a place to ask our questions of the physician on-line, so we can get answers between appointments, or at least s/he will know our concerns when we next meet. I found the doctor's nurse to be my best source of information and support.

Seek a practitioner knowledgeable about your condition.
I was referred to mine specifically because my primary knew he had a number of bronchiectasis patients, but I eventually switched to someone else whose style of practice is more compatible with a curious and proactive patient.

Let us know what you learn when you talk to your doctor.
Sue

@joanng Sue has said it best! I was diagnosed not by my PCP but by my daughter’s husband’s brother who is a retired obgyn!! I didn’t feel well for quite some time, and my PCP had said I was probably depressed because I had retired. I had explained I retired because I felt so awful I saw no other way except to retire! My “ relative” obgyn sent me for a CT scan, and the rest is history. My PCP was upset about that !! Crazy right! Some physicians “covet” their right to diagnose which is a real problem. So yes, you need to advocate for yourself, and no, doctors don’t automatically go to MAC , and many are shocked at a positive result. It takes a while for MAC to grow on a slide. Many pulmonologists are not well versed in MAC. An ID doctor is your best bet. Good luck to you. irene5

@joanng, I echo what @sueinmn @irene5 and other members have said. There is much wealth of knowledge in the discussions here in the MAC group on Mayo Clinic Connect too. Here are a couple of good places to start:
- NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/
- (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

@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.

Thank you for your reply and the links. I am still trying to figure out how to navigate this site.