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navylady
@navylady

Posts: 5
Joined: Jul 26, 2018

Bronchiectasis: New Diagnosis

Posted by @navylady, Thu, Jul 26 9:01am

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

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)

@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.

@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

@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.

Liked by tdrell

@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?

Liked by tdrell

@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.

@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.

@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.

@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.

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.

@navylady

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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@navylady You are one impressive gal! Perdue doesn't take in slackers. Thank you so much for your service in the Navy, and for a proud mention of my dad. I am very proud of him too.

@navylady Just a quick note. Please look at NIH, Mayo-MN, and other top sites in their search engines. You must be your own best advocate, even if you have to sneak up on your own sense of diagnosis until you can formalize it with your own doctor. Medicare and many other ins. want to help you with these tougher diagnoses because it literally saves them lots of money when the truth is known. https://bit.Ly/1w7j4j8 Amyloid and Old Karl

@navylady It is true. You have to be TENACIOUS with the insurance companies to get them to allow you to go to places like Mayo. You need to stress the urgency, the fact that it is an orphan disease that little is known about it, and you can remind them that Mayo is a non-profit organization, therefore; the costs will be very reasonable. In fact, lower than private practice medical business. The squeeky wheel gets the oil!

@ameliar hi I was recently diagnosed after coughing for maybe 8-9 mos or so .Finally went to a Pulmonoligist after seeing a ENT and taking antibiotics as well as an antihistamine .But the pulmonologist gave me a breathing test and I coughed up spectrum and they cultured it .Apoears I have MAC not taking anything yet hope never I stopped coughing and feel great .Where do you live ? It’s pretty scary hope I don’t cough it was loose I also had it after I had the flu strange .Its good to hear others like me but I intend to see a infectious disease and pulmonologist to compare and ask them if I need to take anything do I don’t get it back as precaution .Lets keep in touch you can PM me anytime

I am an otherwise healthy 71 year old female recently diagnosed with Bronchiectasis. I have minimal shortness of breath and cough very little. I had pneumonia as a child, then not again until 2016. I did have Bronchitis several times in the 1990"s after moving to Virginia. I took allergy medicine for years and stayed healthy and then had pneumonia in 2016 and 2 more times since then. I found a great pulmonary doctor that I feel great about., but I haven't heard back from the sputum samples done 5 weeks ago. Is this pretty normal. They said one test was perfectly normal, but nothing from the other 2. I am optimistic and plan to do everything possible to stay healthy, but I am a bit freaked out about getting around crowds. I work full time and around the public as well as co workers. I wonder how those of you diagnosed with this are managing your health. Thank you for any advice.

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