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Have Bronchiectasis, recently diagnosed with pseudomonas
MAC & Bronchiectasis | Last Active: Sep 30 4:40pm | Replies (211)Comment receiving replies
I remember that feeling well - it took a long time for me to get diagnosed, then all the first doctor offered was the "cookie cutter" approach to treatment. He actually "fired" me as a patient because I had the nerve to see and ID specialist when I wasn't improving. It would probably be well worth the time to find an experienced specialist...
First, let's ask the Connect community - Does anyone with bronchiectasis have a good pulmonology or ID doc in the Oklahoma City area?
The second approach is for you to get on the phone and start calling pulmonologists near him and asking specifically if they treat patients with COPD + asthma + bronchiectasis + pseudomonas regularly, or can recommend someone who does. Oklahoma University appears to have an extensive Pulmonology department - that's where I would start.
Are you able to help your Dad with finding a doctor?
Sue
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Hello to this wonderful group, I have been following for awhile and also am at at a loss for treatment for my Mom. Currently she sees a pulmonologist and ID at St.Luke’s Hospital in Milwaukee WI. She is on Ethambutol, Azithromycin, recently added Clofazimine and uses Amikacin in a nebulizer. She couldn’t tolerate the 7% saline, it hurt her throat. Also Rifampin interfered with Coumadin she takes. Horrible reaction. She takes that preventively because she used to go into Afib but hasn’t for many years.
She has no appetite, is weak and short of breath and coughs a lot.
She was diagnosed with Bronchiectasis 5 years ago , her recent CT scan shows no changes in the last year.
She has a strong good heart and was physically fit. An active vibrant woman even in her 80’s. Never smoked and was super health oriented. We just don’t know if there is better treatment. The docs she goes to have a few MAC patients but are not specialists. Should we try Mayo do you think? I live in the Chicago area and do not know anyone here. It’s been so hard and very sad. If anyone has any suggestions , thank you.