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navylady
@navylady

Posts: 5
Joined: Jul 26, 2018

Bronchiectasis: New Diagnosis

Posted by @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

REPLY

@auntnanny

jweisser.…… I feel one of the main problems most of us have experienced is that we did not have a doctor who knew any more than we did. I saw 7 specialists locally and none actually knew anything or were able to help in any way. These were allergists, pulmonologists, cardiologists, internal medicine, ENT, …… I kept trying all of it. Finally, out of desperation I made a call to Mayo's — they took me right away. Diagnosed within 2 hours…… I have medicare and blue cross….. I was never charged a dime for anything. It was a 10-hour drive but —- the best thing I ever did. I had lost soooo much weight and everyone (including myself) thought I was dying. I couldn't eat and I could barely walk through the house. And, the coughing was so severe I was never able to sleep. Sat up in bed for two years. I could go on and on…… just saying, whatever it takes, get to Mayo's. It's a remarkable place. Until you've been, you cannot imagine the kindness and help you will receive. My doctor is Teng Moua in Rochester but there are many others with stellar reputations. They need a cat scan and a sputum test to get you on the right track. I do hope you just decide to make a trip to one of their facilities. It will change your life.

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@auntnanny I couldn't have said it better. I feel the same way.

I'm 5 weeks into NTM treatment with the "big 3" and everything was going well (body adjusting to the meds, increased energy, reduced cough, etc.) until yesterday – Friday – at 5 minutes after 5 pm. I felt a sudden need to cough and coughed up blood. I couldn't reach my doctors because it's the weekend and I knew I hadn't coughed up enough blood to warrant going to ER. The experience put me in a mild state of panic. I managed to calm myself down and the bleeding didn't continue but I want to understand it. Has anyone else coughed up blood while on the treatment? If so, what was the explanation?

@onana

I'm 5 weeks into NTM treatment with the "big 3" and everything was going well (body adjusting to the meds, increased energy, reduced cough, etc.) until yesterday – Friday – at 5 minutes after 5 pm. I felt a sudden need to cough and coughed up blood. I couldn't reach my doctors because it's the weekend and I knew I hadn't coughed up enough blood to warrant going to ER. The experience put me in a mild state of panic. I managed to calm myself down and the bleeding didn't continue but I want to understand it. Has anyone else coughed up blood while on the treatment? If so, what was the explanation?

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@onana Hi there. I just now found this post of yours. I missed it last week somehow. As you have probably read from some of these posts, us mac patients sometimes do experience coughing up blood. It sometimes will happen and usually resolves itself. But, sometimes medication will actually cause it. In that case you would need to be taken off of that medication. Have you reported this to your doctor?

Thanks for getting back to me. Yes, I reported it to my pulmonologist and to the ID doc. The pulmonologist didn't think it was anything to be alarmed about (unless I was coughing up blood repeatedly. That wasn't the case. It resolved itself in one day. I got a message to the ID doc but didn't get to speak with him. I know the two docs talk to each other. They did not call off the meds.

@onana

Thanks for getting back to me. Yes, I reported it to my pulmonologist and to the ID doc. The pulmonologist didn't think it was anything to be alarmed about (unless I was coughing up blood repeatedly. That wasn't the case. It resolved itself in one day. I got a message to the ID doc but didn't get to speak with him. I know the two docs talk to each other. They did not call off the meds.

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@onana Good! I know that kind of thing can freak a person out; it did when it happened to me. How are you doing on the meds?

@windwalker I'm doing ok. The first couple of weeks I had stomach cramps and frequent trips to the potty (felt I couldn't leave the house for at least 4 hours after the dose). Now things are more comfortable. Seems my body has pretty much adjusted, although I still want a potty nearby after I take the meds. I feel more able to manage the side effects. Appetite is holding but diminished, so I try to eat high calorie but nutritious food. Phlegm is noticeably reduced, so the nebulizer saline doesn't bring up much at all but assures me that the meds are working. I was pretty excited about the good results until I coughed up blood. That incident really discouraged me, but I'm ok now.

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