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@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

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Replies to "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..."

You are so kind to use your time and energy to help others. Great compassion. Let me tell you a bit more which may or may not be important. When I went to Mayo's I asked for an appt with a gastroenterologist because my primary care doctor in Tulsa was insistent my cough was coming from reflux. I had seen to gastro guys in Tulsa -- did the 24-hour impedence and other tests -- nothing was conclusive that reflux was the problem. However, my doctor was insistent that he wanted me to have surgery and have the new magnetic ring put in the bottom of my esophagus (it supposedly opens when you swallow and then closes. It's new...... only one surgeon in Tulsa doing it and he had not done many. I was not comfortable and that's when I called Mayo's. I asked for gastro appt because I simply wanted a second opinion on this particular surgery and whether they felt it would be my answer. I had 3 gastro fellas when I got there and after looking at my records they said absolutely not reflux and they sent me for a lung scan. Went back in two hours and that department diagnosed bronchiectasis with no hesitation. Then...... they said they wanted me to see the pulmonologist they felt was their best and I had to wait about 6 weeks for the appt with Dr. Moua. He was the one they insisted I wait for. So...... that's why I have him. I knew nothing about any of them but he has been very kind and seems knowledgeable. I don't know how he rates in their organization but the gastro department is very high on him. As of right now, with only negative tests (although I can bring up lots of dark green, sticky, stringy globs when I'm coughing) it's hard to say I'm not doing well. I have flares every few weeks and when I do, the coughing is hard enough that I can wet, vomit, or most anything. It feels like it comes from very deep but maybe I don't know. Breathing is not a problem -- is it for you? I pray it never becomes one. That's my main worry. I would hate to call and say I'm ill and that I need help with negative reports and antibiotics that seem to take away the symptoms for a few weeks. Dr. Moua said he had conferred with colleagues several times and that they do have a plan in place if I develop Mac. It's something rather new that they want me to test -- if it happens. I don't know if you want all this info, but you are so very kind and I decided to share a bit more about me. Thanks again for caring.......... Jan P.S. My doctor in Tulsa is 2 hours from here -- has a tremendous reputation -- fairly young -- he's still insistent I did not have bronchiectasis initially but that reflux has caused it. He probably has an ego problem?????

@auntnanny .. Jan, thank you for the info. We DO have people on our Connect who were MISDIAGNOSED with MAC/Bronchiectasis but DID have GERD .. but if MAYO says NO .. my gut feeling would be to believe them. Jan I am NOT a doctor .. ONLY you can make your own decisions .. it is YOUR body .. YOUR health .. BUT if I WAS SAYING :bring up lots of dark green, sticky, stringy globs when I’m coughing) it’s hard to say I’m not doing well. .. NO WAY would I be sitting at home writing to Mayo Clinic Connect. I would be getting my fanny on the phone DOING MY "DUE DILIGENCE" .. for MYSELF and TELLING SOMEONE I NEED HELP!! I want the NEXT Pulmonology appointment for a SECOND OPINION to see just what 'YOUR PLAN" is DOES IT INCLUDE PSEUDOMONAS? .. I want to see it in writing .. I want to UNDERSTAND IT! I want to feel comfortable with it! Now Jan that is just ME! Dr Mousa may be the nicest guy in the world but it is NOT his body that is being racked by the coughing!! I'd REQUEST/get that Second Opinion from a DIFFERENT MAYO doctor. A GOOD doctor NEVER resents a request for a second opinion .. IF they do .. they are the wrong doctor for you. Jan, this is JUST my opinion .. YOUR body .. YOUR choices! Hugs! Katherine

Thanks again for your encouragement

@katemn,
@auntnanny  GREAT ADVICE!
 

@auntnanny I am SO glad that you went and got a second opinion about your
reflux issue!
 

@auntnanny they say playing the harmonica is also a great way to exercise
the lungs.
 

@katemn Katherine,
I love that "How do you eat an elephant?' phrase! Will have to store that one in
my memory bank. I am sure it will come in handy one day.
 

@auntnanny Hi
Jan! I am curious and keeping a poll. What did you do for a living? Thank you,
Terri M.
 

I was an executive secretary for an oil company for 6 years until I was expecting first child. Then, I taught music privately and in local school system for 27 years. Married a farmer/rancher and have lived with the same old cowboy 54 years. Lots of cattle and many, many acres of wheat, corn, soybeans, milo, etc. I also have bred and shown labradors for 30 years now. Have finished almost 40 champions and continue to do the breeding program. And..... I have a real estate business in town. Yes, I'm old..... time goes very fast.

@auntnanny Wow
Jan, you have had a busy and full life!!!