Suggestions on specialty clinics currently on big 3

Posted by ladonnahc @ladonnahc, 1 day ago

Can anyone suggest a specialist clinic? For my mom. Shes 79 years old. Shes active (or was) and in good health otherwise. First dx with MAC in 2010 it was treated successfully. Continued with mild cough then dx with BE but always says “mild” on imaging. Now MAC being treated again for the second time. She’s been on the big 3 for 12 months now with one culture showing neg for MAC. I’m not sure if she should have been tested more but we had to push for any testing. She has had pseudomonas show up off and on. Symptoms are only getting worse. She coughs up lots of junk daily. She does airway clearance with arobika valve, vibrating vest, takes mucinex, nebulized albuterol and breztri inhaler. Most recent CT shows new consolidations and nodules! We’re really disappointed with that because shes been working so hard to get better. She asked for a sputum culture and the first report says “abundant pseudomonas” I’m wondering if that’s what they are seeing on my CT and the increased symptoms she’s experiencing. Her pulmonary doesn’t have availability appointments for months and her ID dr obviously isn’t a pulmonologist. Although I think her care here is ok I don’t feel like they truly understand the disease or have the most up to date treatments or literature etc. We’re willing to go to a specialty clinic but we need to know the best place as it would be quite a trip for us as we live in Tennessee. Thank you to anyone with advice!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sue, Volunteer Mentor | @sueinmn | 1 day ago

@ladonnahc Hello, and thanks for taking a hand in your Mom's care. It can be overwhelming!
A list of specialty Bronchiectasis Care Centers has recently been created by a group of specialists.
https://connect.mayoclinic.org/discussion/bronchiectasis-and-ntm-care-center-network-ccn/
If you have access, there is a center at Vanderbilt University in Nashville.

ladonnahc | @ladonnahc | 1 day ago

In reply to @sueinmn "@ladonnahc Hello, and thanks for taking a hand in your Mom's care. It can be overwhelming!..." + (show)

Thank you for replying. The pulmonary group she goes to now says on their website that they care for bronchiectasis but the care is mediocre. I feel like she bounces between ID Dr and pulmo and neither seem to now what to do. I’ve learned more from reading in this group. I guess my question is would this list of care centers be the same or is there way to find a higher specialty than where she goes now? Would love someone to take over her care with most up to date knowledge.. I know we have to be our own advocate but it’s exhausting.

scoop | @scoop | 1 day ago

In reply to @ladonnahc "Thank you for replying. The pulmonary group she goes to now says on their website that..." + (show)

Where does she get her care? What she really needs is not only a bronchiectasis knowledgable doctor but also one knowledgeable and experienced in treating NTM. Some patients decide to travel to NJH or Mayo if they are not satisfied with local care. With 30 some odd centers around the US I would hope you can find one close to where you live.

BTW, sometimes in academic settings (teaching hospitals) this is a tricky time of year as the academic year ends June 30 for many institutions. They are bringing new residents and fellows, maybe even new attendings on board and sometimes there can be system issues.

pacathy | @pacathy | 22 hours ago

I went to Mayo and got in quickly because they told me to call on a Monday or Tuesday for a cancelled appt/opening and that worked. Depending on where you live in TN, Atlanta might be closer than other centers. Bonnie and another participant saw Dr Swenson at Emory a year or so ago and she liked him. You could search group for his name to see any recent feedback.

nicholslg | @nicholslg | 19 hours ago

I live in Knoxville and went to Vanderbilt's Adult Cystic Fibrosis/Bronchiectasis NTM speciality clinic. Highly recommend. The ID doctor and Pulmonologist each spent over an hour with me. Very thorough and thoughtful. Will go back. They were involved in clinical trial for new drug up for FDA approval this month. FYI there is a regional support group that is great. Contact Tennessee@ntminfo.org

nicholslg | @nicholslg | 16 hours ago

In reply to @ladonnahc "Thank you for replying. The pulmonary group she goes to now says on their website that..." + (show)

National Jewish Health in Denver is the very highest you could go. I also went there and never had so much testing from pulmonary function to swallowing test and blood work. They may even do a bronchosopy. Mayo is also highly recommended. These other speciality clinics have been evaluated and must have all the requirements to meet expectations. They just can't say we specialize and get on the list. Where in TN do you live if you don't mind telling.