1. < MAC & Bronchiectasis

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.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 2019
In reply to @america "Good morning! Yes I know the albuterol makes my heart race too but my doctor at..." + (show)
@america

Good morning! Yes I know the albuterol makes my heart race too but my doctor at Mayo told me to use it before my Tobramycin and it’s helping. It does open up the airways and help me breathe better. It may not be for everyone but it’s a good thing to keep until you know you really can’t. I was ready to give up meds as soon I felt some side effects but recently I listened to a special person in our group and I can say... I’m doing much better! Yesterday I went shopping for 4 long hours! I have not done that in more than a year. I am starting to feel like a normal person again. I hope you feel better! Hugs and prayers! Rita

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@america. Rita, I do a three step process when I am on the toby. I first open the airways with albuterol, clean out with 7% sodium chloride, then nebulize the toby. It all makes sense. Open airways to receive more of the medication deep down, and clear out the phlegm so that the med can penetrate.

REPLY
1 reply
franthony | @franthony | Mar 31, 2019
In reply to @sueinmn "It seems like my productive cough magically disappears about 3 days before sputum collection time. Before..." + (show)
@sueinmn

It seems like my productive cough magically disappears about 3 days before sputum collection time. Before I do the saline neb, I use Mucinex to thin the secretions and drink LOTS of water. Sometimes a levalbuterol neb before the saline helps too.

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I think in my case the drugs have been working, because my coughing has reduced considerably, although now with the aspergillus, it has in reased a little. I guess I'll know when the results are in.

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america | @america | Mar 31, 2019
In reply to @windwalker "@america. Rita, I do a three step process when I am on the toby. I first..." + (show)
@windwalker

@america. Rita, I do a three step process when I am on the toby. I first open the airways with albuterol, clean out with 7% sodium chloride, then nebulize the toby. It all makes sense. Open airways to receive more of the medication deep down, and clear out the phlegm so that the med can penetrate.

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Exactly what the doctor said!! Thanks!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 2019
In reply to @franthony "I had three days of sputum induction this week, which meant the nurse administered a saline..." + (show)
@franthony

I had three days of sputum induction this week, which meant the nurse administered a saline nebulizer, then we sat and waited for me to cough. A tiny bit. I don't even know if it was enough for AFB samples. So that must be an individual isefulness sort of thing.

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@franthony If one cannot get sputem to come up from deep down, then a bronchoscopy may be needed.

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2 replies
Dee | @danielad | Mar 31, 2019
In reply to @merpreb "@danielad- Good morning. You have made me smile. I love your attitude! We all need to..." + (show)
@merpreb

@danielad- Good morning. You have made me smile. I love your attitude! We all need to do research about better care. When I found out that I had lung cancer we researched who my surgeon would be, possible outcomes for my cancer and anything else that we could think of. I find it part of gaining control of things that we can and helps lessen fear. So good for you and thank you for sharing all of this wonderful information.
I like your pulmonologist. She definitely is being cautious with your health. I hope that your latent TB stays at bay. Hope that this spring is kind to all of us!

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@merpreb -- Good morning Merry and thank you! Yes, when we are diagnosed with something like cancer, most of us feel we have lost control over our own lives. I know -- I have Melanoma. I remember that a day or so following the diagnosis (2000), my husband and I were in a small restaurant (his way to deal with it) and I had this overwhelming need to scream to my husband and the entire restaurant -- "Hey! Stop eating ... Look at ME ... I have CANCER!!!!" I wanted to be RECOGNIZED and ACCEPTED.
No, didn't scream, and what I realized, in time, is that "C A N C E R" is a diagnosis that leaves most everyone (including family members) with the awful feeling of having lost control over their own lives. As one is faced with his/her own mortality, he/she often finds the need to FIGHT "this thing" to regain a modicum of control. At least that's how it was for me.
Like you, Merry, I immediately began researching any and all information, background, types, cures, stats on survival ... and it all helped to keep "my sanity".
And here I am, nearly 20 years after the initial diagnosis ... and I am NOT part of the stats I had read ... BUT that has a lot to do with finding my Melanoma early. My Surgeon told me: "You saved your own life". Additionally, I don't take anything for granted. New Guidelines recommend getting a check up every 6 months; I do that. I have also found an excellent doctor; I selected her because of her specialization in Melanoma.
Going back to the Bronchiectasis -- I am finding that Spring is not being too kind to me. My allergies are becoming an issue and I have mucus in my lungs. I am starting Albuterol today.

Stay well!
-Dee

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1 reply
Dee | @danielad | Mar 31, 2019
In reply to @brigby "@danielad thank you, please continue to update us on your progress!" + (show)
@brigby

@danielad thank you, please continue to update us on your progress!

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@brigby -- Thanks, I will! Actually, I have started Albuterol today; allergies are causing mucus in my airways ... ;-(

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Dee | @danielad | Mar 31, 2019
In reply to @windwalker "@franthony If one cannot get sputem to come up from deep down, then a bronchoscopy may..." + (show)
@windwalker

@franthony If one cannot get sputem to come up from deep down, then a bronchoscopy may be needed.

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@windwalker -- Hi Terri, at which point and why would one get a bronchoscopy to get the sputum out? Is it to get a sample or is it used to get what is stagnating and obstructing breathing? I have been asked to provide a sputum "sample", but I was never able to do it and my pulmonologist has not suggested doing a bronchoscopy. Thanks -- Dee

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1 reply
pfists | @pfists | Mar 31, 2019
In reply to @windwalker "@pfist I am glad that you have shots to take for relief and that they work...." + (show)
@windwalker

@pfist I am glad that you have shots to take for relief and that they work. I was asking if you lived near the Mayo because I will be there for a conference in October. Was hoping to meet you.

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@windwalker888
Terri oh a conference is it on Mac?
It's a bit of a drive ..is this conference open.
Im so glad you are doing so well 8 mile bike ride wow that's great!
Let me know more details about time a date and it would be great to meet you!
Shari

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 2019
In reply to @pfists "@windwalker888 Terri oh a conference is it on Mac? It's a bit of a drive ..is..." + (show)
@pfists

@windwalker888
Terri oh a conference is it on Mac?
It's a bit of a drive ..is this conference open.
Im so glad you are doing so well 8 mile bike ride wow that's great!
Let me know more details about time a date and it would be great to meet you!
Shari

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@pfist No, Shari, it will be a conference for Mayo Mentors and Moderators. I was just putting it out there in case you or any other members wanted to meet up.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 2019
In reply to @danielad "@merpreb -- Good morning Merry and thank you! Yes, when we are diagnosed with something like..." + (show)
@danielad

@merpreb -- Good morning Merry and thank you! Yes, when we are diagnosed with something like cancer, most of us feel we have lost control over our own lives. I know -- I have Melanoma. I remember that a day or so following the diagnosis (2000), my husband and I were in a small restaurant (his way to deal with it) and I had this overwhelming need to scream to my husband and the entire restaurant -- "Hey! Stop eating ... Look at ME ... I have CANCER!!!!" I wanted to be RECOGNIZED and ACCEPTED.
No, didn't scream, and what I realized, in time, is that "C A N C E R" is a diagnosis that leaves most everyone (including family members) with the awful feeling of having lost control over their own lives. As one is faced with his/her own mortality, he/she often finds the need to FIGHT "this thing" to regain a modicum of control. At least that's how it was for me.
Like you, Merry, I immediately began researching any and all information, background, types, cures, stats on survival ... and it all helped to keep "my sanity".
And here I am, nearly 20 years after the initial diagnosis ... and I am NOT part of the stats I had read ... BUT that has a lot to do with finding my Melanoma early. My Surgeon told me: "You saved your own life". Additionally, I don't take anything for granted. New Guidelines recommend getting a check up every 6 months; I do that. I have also found an excellent doctor; I selected her because of her specialization in Melanoma.
Going back to the Bronchiectasis -- I am finding that Spring is not being too kind to me. My allergies are becoming an issue and I have mucus in my lungs. I am starting Albuterol today.

Stay well!
-Dee

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@danielad For the first time, Spring pollen is doing a number on me too.

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