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Thanks Sue. I have had a very uninsightful and fraught relationship with a highly rated pulmonologist. He has suspected MAC for several years, claims to be able to see it on expats and scans,
But trying to grow a culture 3 times produced nothing. I have never had some of the symptoms, but have pretty religiously followed the regime. I am now 87, have copd, bronchiectasis, MAC (?)
And now an infection they are treating as “recurring pneumonia”. In addition he turnSoed me over to Infectious Disease and Palliative Care for further treatment.
In exhaustion and desperation, I have decided to shed all the extra care and just go with my main provider in a small clinic. I like him, he is practical, and can do everything that PC and Hospice
Could do. The antibiotics he gave me a week ago are, I think, not working. I saw the pulmonologist 3 weeks ago because I was suddenly way more out of breath than usual. This has not improved, I must use oxygen for housework, exercise, but not at night. I feel that I may not recover the the pneumonia, and wish I had known I was being treated for it for some time.
Karen
Replies to "Thanks Sue. I have had a very uninsightful and fraught relationship with a highly rated pulmonologist...."
@regen99 I feel very sad for you- glad you have gone back to care you are comfortable with. I realize you have a lot going on with your lungs, but perhaps you should have a bronchoscopy if that’s a possibility. That would definitively tell you exactly what is in your lungs. That’s the only way I was ever diagnosed with anything. Looking at a scan or an x-ray is a good and wonderful thing but proof positive would be in having a bronchoscopy if you are able to do that. Irene5
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@regen99 Please let the ID doc know you don't think the antibiotics are not working. It is likely they can try a different one, and maybe a nebulizer as well.
In my opinion, based on family experience, I appreciate your decision to turn to palliative care to stay as healthy and comfortable as possible. I hope this little story will explain...
You see, I am not the first in my family to have Bronchiectasis. My Mom, who worked in the printing industry amid dust and a lot of chemicals, had recurrent pneumonia from the time she was 40 until her death in her mid-eighties. She was diagnosed with Bronchiectasis around 2000, among a host of other lung and health issues. After a number of strokes in her early 80's, she had pneumonia every few months, which was treated with 2-3 weeks of antibiotics, and daily nebs, but it never really went away completely. The docs were pretty sure it was MAC, but thought the Big 3 was not for her, and just continued to treat her pneumonia as it occurred.
Years later, when she passed, it was not MAC or Bronchiectasis that ended her life - it was her worn out heart.
I am little younger and healthier than my Mom was, and free of MAC for now, but if it comes back in 5 or 10 years, it is doubtful that I would go back to the 3 antibiotics long-term. I would probably choose short term treatment to knock it down and keep on going.
So I think your decision to treat as needed and rely on palliative care seems very reasonable to me.
Can you ask the docs to change up the antibiotics or add a nebulizer med to help you breathe better?
Hugs! Sue