Do most labs tell the species/subspecies and the number of colonies?

Hello. Yes, the UT Health Science Center in Tyler TX does. They have an advanced research lab. I went there after I got very little information and no guidance from my local pulmonologist. The local even denied me saline nebulizing and dragged their feet in sending my records for referral. UT ended up having to retest for everything. I encourage you to look for a center of excellence to be properly diagnosed. If that is not possible, call around to the infectious disease specialists and pulmonologists in your area to find a more local doctor familiar with MAC to get advice on the best location near you for thorough evaluation.

I have precisely the same situation with my current pulmonologist here!

I made a tele appt with Dr Johnson at Mayo and she prescribed the sodium chloride and explained using it twice a day.

I am scheduled to go to Mayo in Jacksonville in November but have found a local friend with this who went to National Jewish and has been advising that they are the best.

I will look into UT this morning! Thank you so much!

Adding that most if not all medical facilities connected/related to an academic teaching hospital use labs that specify what and how much is growing.

Thank you! I’m feeling overwhelmed and trying to be my own advocate and learn as quickly as I can as well as manage my emotions simultaneously. It’s feeling a lot this morning but I know it’s only just the beginning.

Hello again! I’m wondering how you feel about the care you received from UT and if you feel they are as good as NJH in Denver?

I am in S Florida and I’ve got Mayo or UF in state but am thinking my best option is UT or NJH.
Thank you for your time I really appreciate it!!

Hello, dis224. The treatment at UTHSC in Tyler has been excellent. I have read so much about National Jewish Health in CO but have never been there. I believe that that facility is probably larger and very well funded. However, everyone from the nurses, pulmonary function techs, imaging staff, lab, and pharmacy has been exceptionally courteous and responsive. Dr. McShane focuses exclusively on bronchiectasis and MAC- either or and both. Her resume is impressive, but her personal manner and care of her patients is even more so. She listens and asks questions. She is empathetic, reassuring, and wise in her counsel. With all of her competency, there is not a trace of arrogance. My experience with the local pulmonology clinic was so poor, that I did not know what to expect with Tyler.

I felt despondent when I went and at the time knew only a fraction of what I know now. I had not yet heard of this wonderful support group. When I told the doctor in Tyler about my local experience and how they said they do not co-consult and that I would have to choose, she got a determined look on her face and looked me square in the eye. She said, Well, we will treat you here, and if what we do does not work, we will find something that does.”

It makes me cry when I think about it each time. The doctor is so in tune with her patients. Her nurse has so many years of experience. Her respiratory therapist is so patient and kind. I love the pharmacist in the building.

It is a long distance for you to travel from FL, but CO is farther. I think that any of the three will be good options for you because they have specialists in this disease. It then comes down to the staff’s approach to patients. I can only speak to my experience with Tyler. In my opinion, they are a model for patient care and compassion. This illness is so different from others and differs for each of us. The treatment is long, unpredictable, and not easy. We should expect and receive the care and compassion of our care providers, and only doctors who deal with this illness on a daily basis have the unique insight and knowledge to provide the best care. Sometimes the biggest places are not the best for all patients.

I hope that this helps you.

It helps so much! Thank you! I have much to consider but this definitely tells me that UTHSC is a significant consideration.
Bedside manner is of utmost importance especially with such a complicated disease and so many unknowns it seems for the average person getting this diagnosis!
Appreciate the info and your time and this wonderful support forum! So happy I found it! Have a great day!

Good luck getting apt at Mayo! ID doctor I use is Dr. REZA, associated with Mayo. What I need is access to a respiratory therapist, to learn what to buy and how to use it correctly.

Hi,
I’m getting things together for my trip to NJH. I was wondering what info you needed during your first visit with your doctor. My medical records have already been sent, but what did he/she need from you that may not be in your records?

I’m in the process of getting an appt scheduled there. Have been trying to decide which hospital is best.
Wishing you all the best with your trip to NJH.