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Does anyone have abscessus?

MAC & Bronchiectasis | Last Active: Aug 1 6:29pm | Replies (26)

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@bamaqueen

Thank you for reaching out! Yes, a lot and I left out my 5 vertebral compression fractures last year along with trying to take care of my 99 year old mother who passed in April! It’s been a challenge.
Why my primary care? Because I don’t really have a pulmonary doctor. The one I had an appointment with at USA on July 2 left them on June 28! I haven’t heard from the infectious disease doctor, so I’m doing my own research and care plan! I do have a home health care nurse also. My primary agreed to order whatever I wanted, so I’m having a CT of my lungs, thoracic and lumbar spine. I was in the ER with afib (yes, just another issue) when they first told me I had pneumonia. Initially disregarded by my then pulmonologist as being pseudomonas they were seeing. Definitely not my first CT, more my like fourth? Last one was October.
I am considering UAB. I qualify having had two positive cultures. Do you see Dr. Garcia? It’s a long 3 hour drive, but doable.
At least your doctor was smart enough to know he couldn’t help you! I think my first one who is well respected around here, just does textbook prescribing. The second doctor I went to said I was lucky he didn’t kill me! And then she orders a med (Arikayce) not really knowing how to even order it!
Watchful waiting is what I’m doing and looking for with more guidance once I get my CT.
Thanks again! 🙏🏻🙏🏻🙏🏻 for us all!

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Replies to "Thank you for reaching out! Yes, a lot and I left out my 5 vertebral compression..."

I don't know why you would need to have anything to "qualify" you going to UAB? I don't know where you live but you have serious lung issues that need expert attention. Would your current doctor assist you to find the best location for your condition?

bamaqueen. You've moved in the category of a "fighter" and you're doing all you possibly can to find answers. Good for you. Many would have given up by now. Question: What was the results of your two sputum? Yes, I've been seeing Dr. Garcia for two years now. He started up the NTM clinic at UAB (Kirkland Clinic) in B'ham earlier this year. There also is a infectious disease doctor there with him but I've never seen him. The staff is great and they are very good about responding through the portal when you have questions or concerns. Sounds like it would be a good option for you. Faye