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New Member - need advice navigating disease management
Hi all - my husband was diagnosed with bronchiectasis about 10 years ago after dealing with an unrelenting productive cough. We went to an ENT who put him through sinus surgery, went to an allergist who put him on allergy shots, went to a pulmonologist who diagnosed him with asthma and started meds. But the cough and mucus continued until a nurse practitioner at Vanderbilt's ASAP (allergy & sinus) clinic suspected bronchiectasis. They reversed the asthma diagnosis because his pulmonary function test was normal. He also tested negative for CF.
In the years since he has had 2-3 flare-ups a year, each time resolved with prednisone and doxycycline - sometimes just the prednisone alone did the trick. The pulmonologist who took over his care didn't do sputum cultures or talk about mucus clearing techniques, etc. He's been on Dulera for years. His mucus has never been as bad as it was before diagnosis. In more recent flare-ups he coughs up bronchial plugs and/or mucous globs and also has a pitched non-productive cough.
His chest x-rays usually don't show bronchiectasis, but CTs show it as mild. If I understand correctly he has some granulomas in a few lymph nodes which were biopsied in 2020. The doctor gave a diagnosis of sarcoidosis but pathology report from the biopsies did not confirm it.
He is now 60 years old and his flare ups are happening more frequently. His pulmonologist retired and referred him to a sarcoidosis clinic. I feel like he needs to see a bronchiectasis specialist because that is presumably what is causing these flare-ups. We have an appt at Mass General in January 2025 because my husband has family there - but since we have to travel anyway should he go to NJH instead? He also needs a local pulmonologist to manage his condition (we're in Nashville) - but I just want to make sure we're chasing the right disease. Based on your experiences, does it sounds like we're on the right track with pursuing a bronchiectasis specialist?
Thank you for taking time to read through this. I appreciate any guidance you can give!
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Nashville and Atlanta is 4 hours' drive, see if you can make an appointment with Dr. Colin Swenson at Emory.
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1 ReactionSounds like your husband has a lot going on with chest stuff. Many others here have reported that it can take years to get to the bottom of what's causing lung illness. Bronchiectasis is uncommon and general pulmonologists look for more usual things.
If it were I at this point, I would make 2 plans. One immediate and the other longer term. Short term plan would be to visit the PCP, where both sputum culture along with repeat CT scan can be ordered. (You'll need these results of these tests for the longer term plan anyway.) And the PCP can listen to both your husband's story and his lungs. You can also discuss with PCP next steps and referral to an appropriate pulmonologist and/or infectious disease specialist, hopefully local (the longer term plan). If you cannot find a local specialist you might consider traveling to a bronchiectasis center. Emory was mentioned above. There are many others including NJH, Mayo, Tyler TX etc. Keep the appointment at Mass General just in case.
Since your husband is coughing up gunk and has been previously diagnosed with bronchiectasis consider airway clearance. To maximize airway clearance he'll need a compressor, nebulizer and hypertonic saline. All are available without a prescription. Below are links to nebulizer and compressor, both of which have been recommended by NJH. Hypertonic saline (3% or 7%) can be purchased on Amazon.
https://www.saveritemedical.com/products/ombra-120v-table-top-nebulizer-compressor-system
https://www.amazon.com/dp/B0BNNV3JW6?ref=ppx_yo2ov_dt_b_fed_asin_title
Airway clearance info
https://bronchiectasis.com.au/physiotherapy
I hope this is somewhat helpful.
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8 ReactionsThank you SO much. I appreciate the time taken to give me this information and guidance. I’m going to execute this plan. Thank you again!
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2 ReactionsI see where others have helped with the list of major centers for treating BE.
There are a couple more that I would also like to mention. From what I understand and could be worth checking out if one is close to these areas: Mt.Sinai in NYC that is now associated with National Jewish in Denver; NYU Langone and another is Dr. Elizabeth Anne O'Donnell at Georgetwon Univ. Washington, DC. All are at great distance, however, compared to Atlanta from Nashville and certainly Atlanta is closer for 'you all.''
I mention these in case you have family in these areas due to the possibility of having to stay in one of the areas for several days for medical testing etc. Hoping your husband experiences a positive difference in doing the plan.
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3 ReactionsHi and welcome to this wonderful group. When we lived in Clarksville briefly to take care of my father in law I saw a wonderful ID doctor at Vanderbilt. His name is Dr. LaRue. My husband who has sarcoid saw a doctor at St. Thomas. His name is Dr. Mark Peters. Both Dr. LaRue and Dr Mark Peters were excellent. ( irene5)
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5 ReactionsYes, I would agree regarding Colon Swenson in Atlanta Emory. I had to travel 3 1/2 hrs to see him for a year and a half. It was wonderful to find someone who was knowledgeable of our diseases. I asked him if he was comfortable recommending someone closer to my home and he knew of two. They are in Birmingham, AL (U. of Alabama, Birmingham) This spring they set up a NTM clinic and Dr. Bryan Garcia is heading it up and he is my doctor. Wishing you the best.
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4 ReactionsWe have family in Boston which is why we scheduled with Mass General. They have a bronchiectasis center but I haven’t see much mention of that center here.
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2 ReactionsMass General is part of a large research teaching hospital system affiliated with Harvard. The large research/teaching hospital part is good to look for when seeking specific care. They tend to be up on latest treatments.
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3 ReactionsHi again. Hearing your husbands health story, my heart goes out to him. I am somewhat also lost with knowing for sure what causes my nearly constant need to clear my throat of what appears to be mucus. I have to somewhat assume that it is the hiatal hernia since my visit to NJH in October of 2023 and the gastroenterologist found the hiatal hernia with the endoscopy test that looked at the stomach area. I have read that one of the symptoms of a hiatal hernia is the need to clear the throat due to an overproduction of mucus caused by the hiatal hernia. The mucus/substance just clings to the back of the throat and is worse after I eat.
So, in reality the problem as I see it is the possibility of multiple health problems and it becomes difficult for ourselves and the doctors to distinguish what is truly causing our problem....logic tells me one health problem could possibly add to or make another worse.....?? I have BE, hiatal hernia and eczema. From what I have learned inflamation is related to two of those health problems. All diagnosed within the last two years due searching for answers to what I was experiencing. The constant mucus and the need to clear my throat limits activities involving time with others......not a pleasant thing for others to have to view or experience while eating....especially if one is in a restaurant. Wishing your husband relief and less frustration that comes with moments of relief. Barbara
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