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.

@sueinmn

@poodledoc Let this group know where you're located and you may get a recommendation. Otherwise, contact your nearest medical school with a teaching hospital and start asking. If you have access to National Jewish Health or Mayo, contact them…
Sue

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Sue, I have homes close to Nashville, TN and just north of Tampa, FL. There is a Mayo clinic in Jacksonville, FL about 3 hrs away and a medical school in Gainesville, FL. about 2 hrs away. We also have family in Colorado about 1 hour from NJH. I am not completely happy with my current Pulmonologist in Nashville, TN. and I am thinking about switching. Any recommendations appreciated. Thanks

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@poodledoc

Sue, I have homes close to Nashville, TN and just north of Tampa, FL. There is a Mayo clinic in Jacksonville, FL about 3 hrs away and a medical school in Gainesville, FL. about 2 hrs away. We also have family in Colorado about 1 hour from NJH. I am not completely happy with my current Pulmonologist in Nashville, TN. and I am thinking about switching. Any recommendations appreciated. Thanks

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@poodledoc Dr. Richard LaRue at Vanderbilt is excellent. When we lived in Clarksville/Cunningham TN in 2016/2017 he was my ID doctor. Dr. Mark Peters at St.Thomas West is also very good, but not a MAC specialist. (Irene5)

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@irene5

@poodledoc Dr. Richard LaRue at Vanderbilt is excellent. When we lived in Clarksville/Cunningham TN in 2016/2017 he was my ID doctor. Dr. Mark Peters at St.Thomas West is also very good, but not a MAC specialist. (Irene5)

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@poodledoc This is what makes Connect work – thanks Irene (@irene5). Poodledoc – Vanderbilt is where some of our participants find their physicians. Not sure they "specialize" in MAC, but there are some docs there well-versed in treating it. There are a number of people here who seen the docs at Mayo in Jacksonville. Reach out to Terri (@windwalker) – if she is not one of them, I bet she knows who is. Good luck – having a doc who is knowledgable and you trust is vital in dealing with difficult conditions.
Sue

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@irene5

@poodledoc Dr. Richard LaRue at Vanderbilt is excellent. When we lived in Clarksville/Cunningham TN in 2016/2017 he was my ID doctor. Dr. Mark Peters at St.Thomas West is also very good, but not a MAC specialist. (Irene5)

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@poodledoc…I agree with @irene5 with regard to Dr. Richard LaRue at Vanderbilt (ID doc). He is wonderful….very knowledgeable and kind/compassionate!! There is a great pulmonary doc at Vanderbilt, Dr. James Tolle. These two docs work together on my behalf and are great with communication through the patient portal and with phone calls as well. Good luck finding the right team for you!!
Blessings, Yaggi01

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@sueinmn

@poodledoc This is what makes Connect work – thanks Irene (@irene5). Poodledoc – Vanderbilt is where some of our participants find their physicians. Not sure they "specialize" in MAC, but there are some docs there well-versed in treating it. There are a number of people here who seen the docs at Mayo in Jacksonville. Reach out to Terri (@windwalker) – if she is not one of them, I bet she knows who is. Good luck – having a doc who is knowledgable and you trust is vital in dealing with difficult conditions.
Sue

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@poodledoc …I went to Mayo in Jacksonville…. Dr Leventhal was fabulous…unfortunately he retired June 2019 but highly recommended his replacement, Dr Margarat Johnson. I am pretty sure that Terri (windwalker) has seen her this past year as she is under regular treatment there. Good luck. The treatment at Mayo is so very excellent…Not sure you could go wrong. Kate

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@alleycatkate

@poodledoc …I went to Mayo in Jacksonville…. Dr Leventhal was fabulous…unfortunately he retired June 2019 but highly recommended his replacement, Dr Margarat Johnson. I am pretty sure that Terri (windwalker) has seen her this past year as she is under regular treatment there. Good luck. The treatment at Mayo is so very excellent…Not sure you could go wrong. Kate

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@alleycatkate and @poodledoc I have not seen Dr. Johnson yet, but will be seeing her for the first time in June. I am looking forward to seeing her and hearing what her ideas are about treating mac. Even though I have been testing negative for several years now: I still like to pick brains! Poodledoc, I cannot say enough good things about the Mayo Clinic. Besides saving my lungs from needing a transplant; I really admire how organized medical testing and visits go. Tests, exams, results, dr consult, and treatment, all done in the same day, usually. Mayo hires the cream of the crop in medical teams. Vanderbilt may run a similar operation. I have found that medical universities and other medical research institutes are generally better than private practice doctors.

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@skylark1

Question: How often should I have CT scans? Had initial x-ray followed by 2 CT scans 3 months apart. Next is to be scheduled in 9 months. It has been 5 months.

Had episode woke up Gasping for breath- had turned over in sleep to ‘bad side’. Couldn’t get enough air then dizzy, sharp pain chest & back, tingling right arm. Thought heart attack. Saw cardiologist, heart fine. Pulmonologist said hyperventilating & something to do with carbon dioxide can cause tingling arm & dizziness & said maybe do x-ray or another CT scan. Since propped up pillows no repeat & can sleep one side & back. Do have some pain in chest when I wake up & take deep breaths at first.

Since I feel better wondering if I should wait with CT scan. It’s a lot of radiation.

How often do people on this forum have scans.

Sorry for long posts- new & have so many questions. 💞

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@skylark1 Hi there, and welcome to our group. I have experienced all that you have just stated. You may want to ask your pulmonologist if doing a 3 night pulse oxometer test is a good idea. That will record your oxygen levels as you sleep. I have had this test twice over the last ten years and each time proved that I need to sleep with oxygen. I no longer have the tingling arms. As for the CT scans; my doctor at Mayo says one should have a CT scan only every two years because they are so strong and can cause damage on a cellular level. I have heard that they have come out with newer CT's that aren't quite so strong now. *Note: Patients that are more seriously ill may need more frequent CT's.

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@skylark1

Thank you so much for the information. I’m grateful.
No, I haven’t been tested for infection. My bought with pneumonia & severe bronchitis spring 2018 & 2019 were treated with antibiotics (prednisone & steroid inhalers) but there was no testing involved. Decades ago I worked in a lab and it was routine to run an antibiotic sensitivity tests when infections were detected. In my own experience in the past plus decade, my infections for whatever were not even identified, let alone determine what antibiotics were effective. It’s a here try this- type of treatment. And I have severe stomach & diarrhea from them (I have IBSD & microcellular colitis which doesn’t help!). At my next visit I will definitely ask my pulmonologist.
Thank you again.

Sent from Cynthia's iphone

>

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@skylark1 Many of us with mac had drs tell us we had pneumonia or bronchiectis and were given broad spectrum antibiotics for a short period of time. If a person has these kinds of infections repeatedly, than it is a good idea to get a sputem test and see what exactly is infecting you, along with a susceptibility test to figure out what antibiotic is best to treat it with.

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@alleycatkate

@poodledoc …I went to Mayo in Jacksonville…. Dr Leventhal was fabulous…unfortunately he retired June 2019 but highly recommended his replacement, Dr Margarat Johnson. I am pretty sure that Terri (windwalker) has seen her this past year as she is under regular treatment there. Good luck. The treatment at Mayo is so very excellent…Not sure you could go wrong. Kate

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Hi everyone! It’s been a while since I got on here. I do read daily about all the reports. I have seen Dr Johnson and I think she’s great! I saw her last July and I felt pretty good the way she explained some of the issues we go through. I am seeing in March and I’m hoping to have positive results again. I have been tested negative for Mac and pseudomonas!! I feel great not much fatigue and I eat a lot more now. I have gained 10 pounds!!! Before that I was not gaining any weight..I am struggling with much RA pains and constantly need to take prednisone! But I am handling it and I would take RA any day instead of Mac and pseudomonas 😊 I go out more and get to see my kids and grandkids more and I’m happy I am also being very careful and wearing my masks and doing what I need to do. I hope I’ll have good news again after my doctors visit. Everyone stay safe and be blessed Rita.”

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@windwalker

@skylark1 Many of us with mac had drs tell us we had pneumonia or bronchiectis and were given broad spectrum antibiotics for a short period of time. If a person has these kinds of infections repeatedly, than it is a good idea to get a sputem test and see what exactly is infecting you, along with a susceptibility test to figure out what antibiotic is best to treat it with.

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Hi Terri!! How are you? Happy New Year!!

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@america

Hi everyone! It’s been a while since I got on here. I do read daily about all the reports. I have seen Dr Johnson and I think she’s great! I saw her last July and I felt pretty good the way she explained some of the issues we go through. I am seeing in March and I’m hoping to have positive results again. I have been tested negative for Mac and pseudomonas!! I feel great not much fatigue and I eat a lot more now. I have gained 10 pounds!!! Before that I was not gaining any weight..I am struggling with much RA pains and constantly need to take prednisone! But I am handling it and I would take RA any day instead of Mac and pseudomonas 😊 I go out more and get to see my kids and grandkids more and I’m happy I am also being very careful and wearing my masks and doing what I need to do. I hope I’ll have good news again after my doctors visit. Everyone stay safe and be blessed Rita.”

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@america Rita, OMG! I am so THRILLED that you now test negative!! Congrats! I am glad to get a great report on Dr. Johnson as I have not seen her yet. I will see her at the end of May. Are you still on meds?

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@poodledoc

Sue, I have homes close to Nashville, TN and just north of Tampa, FL. There is a Mayo clinic in Jacksonville, FL about 3 hrs away and a medical school in Gainesville, FL. about 2 hrs away. We also have family in Colorado about 1 hour from NJH. I am not completely happy with my current Pulmonologist in Nashville, TN. and I am thinking about switching. Any recommendations appreciated. Thanks

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@poodledoc Here are some doctors that you may want to check out. Dr. Kevin Fenny at the University of Florida in Gainsville 1600 SW Archer Rd Room M452 352-265-0111 and in Tn Dr. Richard La Rue (I.D.) at Vanderbilt & Dr. James Tolle (Pumonologist)

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@windwalker

@america Rita, OMG! I am so THRILLED that you now test negative!! Congrats! I am glad to get a great report on Dr. Johnson as I have not seen her yet. I will see her at the end of May. Are you still on meds?

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Hi Terri! I am so enjoying life as never before! I am only doing Albuterol once a day! I have been negative since July 2019!! I am seeing her soon also. Hugs Rita.

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@america

Hi Terri! I am so enjoying life as never before! I am only doing Albuterol once a day! I have been negative since July 2019!! I am seeing her soon also. Hugs Rita.

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@america, So happy for you! Did you ask Dr. Johnson about continueing the inhaled saline to keep the cooties away?

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No I did not! But I will at my next visit.

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