Required appointments with BE pulmonologist

I think BE(bronchiectasis) is mainly being diagnosed by CT(computed tomography).
So, did you have a CT and what did it show ?

Yes, had all tests at NJH 10/23 finding out 8/22 (CScan) I had BE. Just wanting to know how often others are asked to see their pulmonologists during the year as follow-up visits if they are not on antibitoics. feeling well, and have not and not having exacerbation etc. Are patients asked to see their pulmonologists ..every three months, six months, once a year etc. etc.
Barbara

You should be going every 3 months until you are stable for 12 months.

For ongoing chronic conditions, which are stable, every 12 months. More complexity might require a 6 month check in. For situations that are not stable it could be a wide range. In the case of "uncomplicated bronchiectasis without exacerbation" every 6 months or seems reasonable. Perhaps the time between visits could be stretched to even a year if someone is doing well. I suspect there are guidelines with ICD codes laid out by CMS/Medicare about how often to see patients, but don't know for sure.

I have an ID doctor at NJH and see him every 6 months for testing: CT scan, sputum induction, spirometry and consultation afterwards. Meanwhile, I see my local pulmonary doctor, who discovered I had BE and MAC when I had a bronchoscopy. He encouraged me to go to NJH for further evaluation. I see my local pulmonologist every 6 months. Both doctors are able to access my testing through the shared health portal. I am on no antibiotics and am stable for the most part. I do submit sputum samples to NJH every other month and am notified of any major changes.

I see the pulmonologist every 6 months, as long as I am feeling good. My dx is mild bronchiectasis with no complicating factors at this point.

I was seeing a pulmonologist once a year for several years with mild uncomplicated & asymptomatic BE. I had CT scans mostly once a year, even every couple years. Very stable & I was blissfully ignorant about airway clearance, MAC risk etc. To be fair, most pulmonologists didn't know to take it seriously then either, let alone PCPs. Then last year I started developing chronic dry cough & a few months later came up positive for MAC. Now I'm getting treated as part of a study & submit sputum once/month and see study doc every other month. It all feels completely crazy but I think that's what we all go thru when we first start learning about BE & MAC for real.

I am so appreciative of all who have been able to respond to my question.

I am fortunate in that my PCP finally said, with my weight loss, we need to do more than the ultra sound we did, we need a CScan. 8/22 diagnosed with BE. Also fortunate that I knew about NJH in Denver and did all the suggested tests and found out I had a small hiatal hernia..10/23. Once again fortunate to have found this Mayo Clinic Connect that helped me understand the full meaning of and the various techniques of airway clearance and preventative measures.
Where are you being treated that you are in a study? I was "invited" to enter and see if I qualified for the ARIKAYCE study but declined due to the requirement of having to see the pulmonologist for follow ups frequently throughout the year etc. It would have meant 5 hours of driving to the clinic. That would have been a bit too much for me...even though I am capable of the drive..... just don't want to have to do that....did it for many years of driving distances and don't enjoy it any longer at 82. So now I am trying to find a worthwhile pulmonologist in OKC to work with the specialist in Tyler and hope they will. I have been asked to see the Tyler doctor every three months and that is why I raised the question to others. I would prefer to see her once a year since I am doing O.K. and see a local pulmonologist in between once a year and my PCP once a year.....or all of them more when and if needed. So I want to address it this October when I go to Tyler for my PFT and CScan .... and hope all is stable or better..... and then ask if my preference can be implemented.
LVNL - Thank goodness much has been developed and better understood by the medical field in the last few years regarding BE. However, suprisingly, there are still medical people who have never heard of Bronchiectasis. Glad you are in the study and hope you are having an easy time of it with it all.
Barbara

I see Dr. McShane in Tyler. I was going twice a year. Since it is a five hour drive for me - I live in the San Antonio area - she recommended a colleague she works with closely at UTSA (Dr. Diego Maselli) for me to see so I only have to go to a Tyler once a year. I still send sputum samples to UT Tyler quarterly. Have you asked her for a referral to a pulmonologist in OKC?

My situation is a little unusual. I was diagnosed with BE by a local pulmonologist after developing a chronic wet cough. I found out about Dr. McShane through this group. When she looked at the same CT as the doctor who diagnosed me she said I don’t have BE. I have what she believes is the precursor to BE. I am being watched by her because she wants to see how my case progresses. I still have to nebulize and do airway clearance daily, but at this point I don’t have permanent lung damage. I feel very blessed to have two amazing pulmonologist watching over me. I have this group to thank for that!

Yes I, surprisingly, did not think to ask Dr. McShane about a pulmonologist in OKC during my first two visits with her. Sue on this website helped me with realizing that I should ask for a referral of a pulmonologist in OKC from Dr. McShane. I will ask her this visit in October. In my searches to help myself I found Dr. McShane after my call to the COPD Foundation who referred me to John Torrence and he informed me of Dr. McShane in Tyler.
Interesting that you also started with chronic wet cough as I did.....which began my self made appointments with various medical specialists along with internet searches to help find the answer of what the cause was.
Your words, "don't have permanent lung damage". I need to address that with Dr. McShane because I truly don't know if mine, at this point, is permanent lung damage. Which it might be from my Legionella and Mycoplasma Pneumonias I had together in the mid 80's. I also have a hiatal hernia and I read online that a hernia can cause overproduction of mucus which can, and does for me, cause much throat clearing. I personally feel it is the hiatal hernia causing the constant wet cough, mucus, especially after I eat. It can be an all day thing, clearing my thorat, with my trying to put weight back on and eat those small meals they talk of.
I have visited San Antonio several times and especially enjoyed the River Walk at Christmas. Had a lovely stay at the original building that went from St. Mary's College to La Mansion Del Rio but now an Omni.
Thank you for your reply and wishing you continued results of "no permanent lung damage."