New member looking for advice on doctors and navigating illness

Was your surgery at NJH?

Yes. They referred me to Dr John Mitchell at University of Colorado Hospital. He's the expert and I received terrific care there.

I am curious about whether the CT scans and bronchoscope showed any evidence other lung damage or infection? If so, it is quite possibly time to seek out a pulmonologist knowledgeable in treating bronchiectasis, aspergillus and the other infections you may be prone to.

In addition to nebbing as needed, airway clearance I one of the pillars of staying healthy when you have bronchiectasis. The fact that they haven't started you on airway clearance suggests your current docs are maybe not so familiar with it - not surprising because in spite of all the discussion here, it is a quite rare disease and often goes unrecognized for years.

I'm glad you are feeling a little better. Have you also been told you have MAC, MAI or pseudomonas?

Hi. I agree there are a lot of courageous people on here, and I think you’re one of them.

You’re not a wimp. It’s normal to be scared. It sounds like you’re forging ahead in spite of it all and are evidently a strong person given all that you’ve been through. Not to mention, you’re seeking help and I think that is very brave.

Since I’m new to all this too, I think others might have more helpful responses, but I’ll add my 2 cents.

My local pulmonologist has me on albuterol sulfate 2.5 mg. I think an allergy test could be helpful. I have had mixed results with these tests. I took my first one probably more than 10 years ago and came up with all sorts of allergies. It was a scratch test. The one I took last year when I started out on this journey showed absolutely no allergies. I did both scratch and blood. Take that for what it’s worth. There may be other tests out there that are more informative/reliable.

Good luck as you go forward, and I hope you continue to see improvements and keep exacerbations at bay.

Hi Sue,

Thank you for your generous time and questions! I have been quite ill over the past few weeks with a flu bug and was feeling quite depressed because I wasn't sure if my symptoms were permanent due to bronchiectasis or temporary due to the flu. Luckily, the worst of it was cleared up with azithromycin. But I now realize that bronchiectasis makes flu symptoms so much worse! I need to protect myself, so I've been wearing a mask when visiting my grandkids, which makes me sad because they can't see me smile.

My most recent CT scan showed improvement based on the aspergillus medications, but the tree-in-bud nodules (I think these are hallmarks of bronchiectasis?) were unchanged. There was a new area of consolidation in my lung but they think that was due to this recent exacerbation.

So far, no one has said that I have MAC, MAI, or pseudomonas. Would a blood test reveal those conditions? What symptoms should I be on the lookout for, and what can I do to protect myself from these additional issues?

Hi Lisa,

Thank you for your reply! I'm sorry to hear that you are a new member here -- I guess that means you've been recently diagnosed. I'm so thankful to have others like you that I can travel on this journey with! If you're willing to share, I'd love to hear your story.

I apologize for the delay in response. I picked up a flu from my granddaughter and it hit me hard. Luckily azithromycin was able to kick the infection that developed in my lungs. This helped me to realize that I need to protect myself from these potential infections. I've now been wearing a mask around my grandkids, which makes me sad because they can't see me smile.

I appreciate you sharing the details of the allergy tests you took. Do you also have asthma or other conditions along with your bronchiectasis?

I’m sorry you had the flu but glad you were able to kick it. It can be difficult to mask around your loved ones. I still haven’t found a diagnosis. I’ve had a productive cough and SOB for over a year and a half now. My pulmonologist now thinks I may have bronchiolitis obliterans and/or COPD. The problem is that I have aspects of multiple categories and don’t fit neatly into one category. I’m 54, not a smoker, I eat right, don’t drink a lot. I haven’t been exposed to any longterm chemicals or other things that would affect my lungs. I don’t have MAC or Aspergilliosis. I’m otherwise a healthy person aside from having osteoporosis and these lung issues. I’m having another PFT in April to see if I still show obstruction. I was diagnosed with asthma in my 20s but he thinks I may not actually have asthma. My latest CT scan showed little to no bronchiectasis, improved bronchitis and improved atelectasis; bronchial wall thickening and micronodular peribronchial infiltrates. I didn’t know bronchiectasis could improve. My doctor didn’t tell me that when I had my first CT, and I asked if I could reverse it. From what I understand now, there can be bronchiectasis without permanent damage so improvement is possible. I’m not sure now if I even belong on this forum. I haven’t had a bronchoscopy because he doesn’t believe he’ll be able to see anything conclusive since my issues appear to be in the small airways so he doesn’t want to put me through it. I’m crossing my fingers that this will all just go away.

I recently heard that GERD can actually continue despite the use of PPI's - they just relieve the symptoms but do not cure the reflux. I have not had the time to do the research, but if that is true, it would explain why your symptoms continue.
What other changes have you made to alleviate GERD?

Could GERD explain it all? The only symptoms I have are chronic cough and SOB with wheezing. I don’t feel other symptoms, even those associated with LPR/silent reflux, such as lump in throat or difficulty swallowing. My gastroenterologist was hesitant to perform invasive testing since I didn’t respond to PPIs, don’t use antacids, and have these lung issues.
Generally, I eat small meals, avoid typical triggers, drink about 100 oz of water. I’m not overweight: 5’10”, 135 lbs. I sleep with a 7” gradual elevation from feet to head.

Not a medical professional, but in my opinion you need
to see someone who specializes in MAC bronchiectasis and can work with a team to reach a diagnosis