Self care lacking for my bronchiectasis

Posted by vfparker @vfparker, Jul 1, 2021

I am 65 yo and have been treated for bronchiectasis for 40+ years. I had a lobectomy 38 years ago. I am still in the practice I started with but many of the docs I saw retired. I have done self care but see doc for emergencies as well as every 3-5 months. They are now owned by Compass. In April they called and rescheduled my routine appt to August. I am on a waiting list for the next new pulmonologist. There have been times I called and they told me go to ER as they didn’t have available appt. My family has watched me struggle and want me to go to U of M instead. When I went to pick up my records they suddenly can get me in. Should I take them up on that appt or continue with a doc change? The existing doc is ten min away vs 1 1/2 hours . I’m torn.

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With your long and complicated history, you need a doctor well-versed in long-term care of bronchiectasis – not so easy to find.

In your position, I would make the decision based on the backgrounds/qualifications of the available docs, and how easy/difficult it is for you to make the 1 1/2 trip – possibly several times. Also know that, if an less-experienced pulmonologist is willing, and their practice allows it, they can consult with more expert docs at places like Mayo or National Jewish Health to give you optimum care.

If by U of M, you mean the University of Minnesota, my daughter has a very complicated lung history including asthma, bronchiectasis, allergies and auto-immune issues, genetic involvement (non-CF.) She received fabulous diagnostic and treatment care there, then was referred back to her "home" pulmonologist with a care plan and follow-up plan. She is more healthy than she has been in 25 years! Maybe that is a possibility for you?

Sue

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@sueinmn

With your long and complicated history, you need a doctor well-versed in long-term care of bronchiectasis – not so easy to find.

In your position, I would make the decision based on the backgrounds/qualifications of the available docs, and how easy/difficult it is for you to make the 1 1/2 trip – possibly several times. Also know that, if an less-experienced pulmonologist is willing, and their practice allows it, they can consult with more expert docs at places like Mayo or National Jewish Health to give you optimum care.

If by U of M, you mean the University of Minnesota, my daughter has a very complicated lung history including asthma, bronchiectasis, allergies and auto-immune issues, genetic involvement (non-CF.) She received fabulous diagnostic and treatment care there, then was referred back to her "home" pulmonologist with a care plan and follow-up plan. She is more healthy than she has been in 25 years! Maybe that is a possibility for you?

Sue

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Thank you for your reply. University of Michigan has specialized pulmonologists with vast experience is what I see in the resumes. The existing practice has a scant bio on the doc they are assigning me to. I like how your daughter went back to her local pulmonologist after receiving care at Univ of MN. I will see if that’s an option vs leaving the local docs permanently. I have been so disappointed as I have had more flare-ups than ever. I have talked to the manager of the office and while she is nice and apologizes there was no movement at all to get me an appt until I picked up my records. That is disheartening.

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I read comments but never respond. I suggest googling "pendulum" and going from there. Because using a pendulum for answers is, by some, considered 'new age' and unscientific, eyes roll and answered dismissed; however, it's worth investigating if you are serious about healing.
AK

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