1. < MAC & Bronchiectasis
Profile picture for gtokaren

Bronchiectasis treatment - best places to go?

Posted by gtokaren @gtokaren, Jan 6, 2024

This past summer, I was diagnosed with Bronchiectasis, asthma and tested for TB. Those tests came back with H-Influenza and Bacteria Gordonae. My pulmonologist did not want to treat these infections. I had to beg to get an antibiotic to treat the H-Influenza which helped. He kept saying “I’m not concerned” - even though coughing constantly and daily low grade fevers and fatigue. I said “I am concerned” - this is not normal. Additionally, an 11mm area of GGO was found on my CT, which he said “did you have measles as a child”? Yes, I said - that’s what that is from. Why didn’t that show up on scans in the past then? I’m 71! Anyway, he’s the only game in this small town; and I’m not feeling very comfortable in his care.
My PCP has referred me to the Mayo Clinic in Phoenix, and I finally got a call last evening. After taking all of my info, she then looked to schedule, and said Phoenix does not treat Bronchiectasis, but we could treat your secondary condition - the lung nodule. Didn’t know I had one unless that’s the GGO? In any case, she was going to fax my PCP for a referral to Rochester, MN Mayo campus. My question to you folks is where is the best place to go? National Jewish Health in Denver? Mayo in Rochester or Jacksonville? Or where else? I would appreciate any recommendations as any of these will require significant travel. I live in the four corners area in Colorado. Thanks for any help.

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

Profile picture for agcosby
agcosby | @agcosby | Sep 26 5:03pm
In reply to @teedlum "@blm1007blm1007 Hi, I am looking for a new pulmonologist at OU would you mind sharing the..." + (show)
Profile picture for teedlum @teedlum

@blm1007blm1007
Hi,
I am looking for a new pulmonologist at OU would you mind sharing the name of the pulmonologist you use at OU. I am currently with a radiology oncologist.
Sincerely,
Linda

Jump to this post

@teedlum @blm1007blm1007
Hi, I am also in the OKC area and a patient at NJH. I would love any insight on a pulmonologist in our area that is willing and able to dive into our journeys with bronchiectasis, MAC and other NTM issues and bacterias. I have seen good doctors here, but would love to find a pulmonologist who truly understands our issues.

REPLY
2 replies
Profile picture for teedlum
teedlum | @teedlum | Sep 26 5:44pm
In reply to @agcosby "@teedlum @blm1007blm1007 Hi, I am also in the OKC area and a patient at NJH. I..." + (show)
Profile picture for agcosby @agcosby

@teedlum @blm1007blm1007
Hi, I am also in the OKC area and a patient at NJH. I would love any insight on a pulmonologist in our area that is willing and able to dive into our journeys with bronchiectasis, MAC and other NTM issues and bacterias. I have seen good doctors here, but would love to find a pulmonologist who truly understands our issues.

Jump to this post

@agcosby
Hi AG,
I’m sorry to say that I have not. The two I have been to and their aprn’s are too busy.
In fact the first pulmonologist showed me my scans and said I had Bronchiectasis and asthma.
The next Pulmonologist agreed. Kind of.
The navigational bronchoscopy provider the biopsy from there stated that I had very little bronchiectasis.
Although diagnosed with a small tumor, I don’t know which one of the 3 to believe.
Wishing the best. Keep in touch if you would like,

REPLY
Profile picture for gallahad
gallahad | @gallahad | Sep 27 7:25am

I am pleased and impressed by Mayo Rochester. They’ve been helping me for 18 months. One stop for all my pulmonary issues. (ILD, bronchiectasis, ANCA-MPO). Highly recommend.

REPLY
Profile picture for blm1007blm1007
blm1007blm1007 | @blm1007blm1007 | Sep 27 10:13am
In reply to @agcosby "@teedlum @blm1007blm1007 Hi, I am also in the OKC area and a patient at NJH. I..." + (show)
Profile picture for agcosby @agcosby

@teedlum @blm1007blm1007
Hi, I am also in the OKC area and a patient at NJH. I would love any insight on a pulmonologist in our area that is willing and able to dive into our journeys with bronchiectasis, MAC and other NTM issues and bacterias. I have seen good doctors here, but would love to find a pulmonologist who truly understands our issues.

Jump to this post

@agcosby Typed a reply last night and accidently clicked out and lost all I typed so hear goes again.
I have seen the OU pulmonologist only 2 times in the last year. Dr. Daouk
I have seen the OU Infectious Disease doctor Dr. Daouk had me see one time. Dr. Alkozah
Dr. Daouk also has and is willing to refer me to others when he listens to what I say.
Dr. Daouk and Dr. Alkozah was very understanding of my wanting to stay on "watchful waiting" considering all we know about my conditon.
So, really I am new with both. However, I am pleased so far with how they handle all.
OU is striving to become a Center of Excellence.
Both and all the doctors are in the Medical Physicians building 800 block of NE 10th in OKC.
I was glad to hear you went to NJH also. I was there in 2023. How long have you been dealing with all related to Bronchiectasis. I was diagnosed in 2022.
Who is your local pulmonologist.?
I also made a suggestion to all I see at OU to consider a 'Meet and Greet' for the Bronchiectasis patients. Hope they are able to arrange that, they seemed to be open to the idea.
Barbara

REPLY
1 reply
Profile picture for agcosby
agcosby | @agcosby | Sep 27 1:27pm
In reply to @blm1007blm1007 "@agcosby Typed a reply last night and accidently clicked out and lost all I typed so..." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

@agcosby Typed a reply last night and accidently clicked out and lost all I typed so hear goes again.
I have seen the OU pulmonologist only 2 times in the last year. Dr. Daouk
I have seen the OU Infectious Disease doctor Dr. Daouk had me see one time. Dr. Alkozah
Dr. Daouk also has and is willing to refer me to others when he listens to what I say.
Dr. Daouk and Dr. Alkozah was very understanding of my wanting to stay on "watchful waiting" considering all we know about my conditon.
So, really I am new with both. However, I am pleased so far with how they handle all.
OU is striving to become a Center of Excellence.
Both and all the doctors are in the Medical Physicians building 800 block of NE 10th in OKC.
I was glad to hear you went to NJH also. I was there in 2023. How long have you been dealing with all related to Bronchiectasis. I was diagnosed in 2022.
Who is your local pulmonologist.?
I also made a suggestion to all I see at OU to consider a 'Meet and Greet' for the Bronchiectasis patients. Hope they are able to arrange that, they seemed to be open to the idea.
Barbara

Jump to this post

@blm1007blm1007 I was diagnosed in September 2023. Started treatment in Oklahoma and quickly realized that is a lack of understanding in our community. That led me to do my own research and find NJH. Took me 4 months to get an appointment. Started treatment there in September 2024. I go quarterly to Denver. My main concern is local in-depth knowledge for treatment plans, as I may have to start antibiotics very soon. It will be my second time for this. While NJH will direct my care, we must have a strong team here also. Especially while on active treatment.

REPLY
Profile picture for johnwpatrick
johnwpatrick | @johnwpatrick | Sep 28 6:41am

You’re close to Denver. In my opinion, there is no choice! NJH is the absolute pinnacle of treatment for our conditions. You will not be disappointed.

REPLY
Please sign in or register to post a reply.