Anyone been to Dr Olivier or Dr Daniels at UNC?

I went to UNCCH last month and saw Dr Olivier. Met with a nutritionist and respiratory therapist as well as Dr Olivier. I live in High Point and my pulmonary dr here referred me there. I’ve been treated for MAI/MAC 4 times since I was diagnosed in 2005. My experience so far has been good. his nurse is also very good and responds quickly to emails.

I also found out just today I have MaC the MAI still waiting for everything else to come in from the bronchoscopy I had done with my local pulmonologist.

Have you actually been treated by Dr Olivier ? I’m thinking of going there with all of my diagnostics and considering his opinion on treating or waiting.

I have one lower lobe cavity also so I’ve heard they usually want to treat for a cavity. Do you have any cavities ?

Thank you for sharing!

I have only seen Dr. Olivier once. He changed my saline solution from 3% to 7% and I have orders at Labcorp for sputum sample testing. I have a sample in now that they are culturing which takes weeks. I'm not good at producing a specimen so we shall see. I've always had bronchoscopy done. We have been holding off going on the antibiotics again. I did have a positive culture for MAC in 2022 when I had pneumonia but haven't had a culture done until this current one. I do not have cavities but have lost lung function that's why my pulmonary dr sent me to UNCCH. I have Medicare and a supplemental insurance so my visit was covered. He ran lots of blood tests. With cavities it would be best to see someone. Do you have a current pulmonary or ID dr that you see?

I have a local pulmonologist I’ve had a bronchoscopy with already in early August. I’ve only just found out how serious a situation this was! I had been following with scans since march 2022 but was told it wasn’t serious until July of this year with my last scan when I was told it was bronchiectasis as well as a cavity and most likely NTM!!

So I switched Drs immediately; did sputum samples and a bronchoscopy both asap with him.

Just found out it’s intracellulare type MAC yesterday but those are the only results I have so far.

With the cavity I am assuming most will want to treat so trying to get into good hands before I consider that but I know I may have to.

I don’t have many symptoms other than heaviness when I take a deep breath in the mornings usually. The only real coughing I do is when I do the airway clearance twice a day. If I didn’t do it I would feel pretty much my normal.

I hope your cultures come back negative and you don’t require anything at this time!

If I can’t get into NJH until December or next year I will most likely go to Mayo (if I finally get my appts the dr ordered for me scheduled there) or UNC.

I have the MAI type as well or that was what I was diagnosed with at first. MAC/MAI is slow growing so not a big rush to get in somewhere. However, I can understand your concern and wanting to find out what is best to do. Where do you live and are you located near any of big treatment facilities? If I can answer any questions feel free to ask and you can always private message me on here. Good luck and let us know how things go.

I’m in S Florida; but very willing and able to travel by car anywhere I need to!

Thank you so much for your response! I hope you’re feeling well at this time.

I will definitely post more as I know more going on and have solid direction in place.

Oh and I’m sorry I didn’t respond more regarding centers near me; I am near Mayo in Jax (5 hours). I did tele consult with Dr Johnson there and I very much like her! Just cannot seem to get the follow up appts she ordered actually scheduled!

So I’m just doing all my due diligence as fast as I can in the meantime and finding other places that I may be able to get into sooner etc.

When I was diagnosed we lived in South Florida. Lived there for 14 years. We moved back to NC 14 years ago. It seems to be so difficult to get medical things scheduled these days and takes a lot of persistence on the patient's part. We tend to fall through the cracks if we don't stay on top of the medical staff. Sounds like you are doing everything necessary to get things going and finding out what needs to be done. Takes time I know.

You’re so right about all that!!

Question; do you feel any better living in NC? Do you feel that made any difference for your condition at all?

That's a hard question to answer since I am now 14 years older and have age related issues going on as well. To be honest, I really don't think living here has made much difference even when we first moved here I didn't feel any difference. The heat and humidity really bother me here but then we had that in Florida as well. It's been a brutal summer for everyone.