Bronchiectasis: New Diagnosis

Posted by navylady @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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

I would suggest you call Mayo Clinic in Florida. I had somewhat similar experiences here in SE Kansas and finally after a few years of getting absolutely nowhere, I made a call to Mayo's and they took me within 2 days. You don't need a referral. And..... when you tell them your problem, they will be setting you up with a group of pulmonologists. I hope you do this. It will relieve your mind and your symptoms. They can't cure it, but they can help you manage it. I went three years ago and am convinced I would not be alive today had I not done that. (I went to Rochester -- which was a 10-hour drive -- but was the closest for me)

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@navylady,,,We all understand the frustration and discouraged feelings you have now, Take charge of your medical treatment by gathering copies of all your records, including X-rays. Carry them with you to every appointment. It's OK to get angry at the disease. Use it for energy to get things done.
Most medical professional don't know about this, but a good pulmonologist will. I agree that Mayo is the best.

Right now you can help clear your lungs by lying down on your side and coughing it up. If you know where the damage lies in your lungs, lie on the opposite side. There are images of this "postural drainage" on Google images.

After years of misdiagnosis, I am now free of MAC and have my bronchiectasis under control. I am off oxygen. I take nebulized asthma meds which help loosen up the mucus. I can get out into my garden for 2 hours every morning after years of impossibility.
Don't get discouraged. Read the historical posts. There is a wealth of information from some wonderful people.

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@navylady...welcome to this great group. Sorry to hear of frustration re getting thorough medical care in new state.I echo what all others say....Mayos in florida is route to go. Also browse around the site for other linking sites. go to You Tube also for National Jewish Health work shop videos on NTM for patients....should be some from 2015 and 2016..
Have you had sputum cultures done?? If so...what did they show?
Again Welcome@tdrell

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@navylady, Hi there. You are never alone with this disease! Myself, and many others on this site know exactly how it feels to deal with this. Nobody will understand any better than one who also has it. As much as I educate my hubby, he still doesn't really get it. My enemy at the moment is lack of energy. He often cannot understand why I just cannot snap out of it and have a more active lifestyle. Have you had a chance to review some of the older posts? Have you visited the list of topics in the 'Discussion' board? Please let me know if you need help navigating this site, and ask as many questions as you want.

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@navylady Hi. Were you in the Navy? My father was for 21 yrs. He was on submarines. May I ask where in Florida you live? I go to the Mayo in Jacksonville. They saved my life. I was on the verge of needing a lung transplant when I first started treatment there in 2013. They provide individualized treatment plans, and they do a thorough assessment of your over-all health. My quality of life has increased ten-fold since I started treatment there. I drive 2 1/2 hours to get there; but I'd drive many more if I had to. They are so worth it. Are you open to checking out the Mayo?

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@auntnanny

I would suggest you call Mayo Clinic in Florida. I had somewhat similar experiences here in SE Kansas and finally after a few years of getting absolutely nowhere, I made a call to Mayo's and they took me within 2 days. You don't need a referral. And..... when you tell them your problem, they will be setting you up with a group of pulmonologists. I hope you do this. It will relieve your mind and your symptoms. They can't cure it, but they can help you manage it. I went three years ago and am convinced I would not be alive today had I not done that. (I went to Rochester -- which was a 10-hour drive -- but was the closest for me)

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Thanks for your reply. And thanks for bringing up medical records. I don't have copies of mine or any test results, but I know what medical center has them, and I think it's time to pursue this. Just giving me something that I can do --helps.

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@windwalker

@navylady, Hi there. You are never alone with this disease! Myself, and many others on this site know exactly how it feels to deal with this. Nobody will understand any better than one who also has it. As much as I educate my hubby, he still doesn't really get it. My enemy at the moment is lack of energy. He often cannot understand why I just cannot snap out of it and have a more active lifestyle. Have you had a chance to review some of the older posts? Have you visited the list of topics in the 'Discussion' board? Please let me know if you need help navigating this site, and ask as many questions as you want.

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Thanks, it helps to hear (read) the echos of my sx's through yours and other texts. I wondered a long time along with my family "whu I just couldn't snap out of it" Eventually, I admitted there was no snapping out of how I feel. I pushed to work because I had to. Finding doctors who know what I'm talking about has been a frustrating journey. I've promised myself to keep going to build as healthy a body as possible.

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@windwalker

@navylady Hi. Were you in the Navy? My father was for 21 yrs. He was on submarines. May I ask where in Florida you live? I go to the Mayo in Jacksonville. They saved my life. I was on the verge of needing a lung transplant when I first started treatment there in 2013. They provide individualized treatment plans, and they do a thorough assessment of your over-all health. My quality of life has increased ten-fold since I started treatment there. I drive 2 1/2 hours to get there; but I'd drive many more if I had to. They are so worth it. Are you open to checking out the Mayo?

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I don't mind you asking. Yes, I was in the Navy, retired on 20. A mustang officer. Do you know what that is?? I live in Navarre. I'm open to Mayo.

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@windwalker

@navylady Hi. Were you in the Navy? My father was for 21 yrs. He was on submarines. May I ask where in Florida you live? I go to the Mayo in Jacksonville. They saved my life. I was on the verge of needing a lung transplant when I first started treatment there in 2013. They provide individualized treatment plans, and they do a thorough assessment of your over-all health. My quality of life has increased ten-fold since I started treatment there. I drive 2 1/2 hours to get there; but I'd drive many more if I had to. They are so worth it. Are you open to checking out the Mayo?

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@navylady Hi. No, I have never heard of a mustang officer. What does that entail? My father was a Chief Petty Officer.

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It is a joy to tell you something about me that has such good memories, and was a positive experience in my life. A mustang officer is a person who joined the Navy as an enlisted person, and who received their college degree through the Navy became a commissioned officer. Hard work, but worth it. I was selected for a program called the Navy Enlisted Scientific Education Program. They sent me to Purdue University. BTW, you know Chief Petty Officers are widely respected. They have come up through the ranks to the higher enlisted grades. I'm proud of his service, too.

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