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
Sue, Volunteer Mentor | @sueinmn | Apr 2, 2019
In reply to @brigby "@merpreb Hi, I guess I too have been delaying using the Ventolin inhaler prescribed by my..." + (show)
@brigby

@merpreb Hi, I guess I too have been delaying using the Ventolin inhaler prescribed by my Pulmo for “later when I really need it”. I was assuming it was steroidal, but I’ll have to research it further. Thanks

Jump to this post

Ventolin is albuterol. It is not a steroid, and not addictive. As several have mentioned, using an albuterol, levalbuterol or similar neb regularly helps relax the bronchial passages so that other meds (like Tobramycin for pseudomonas or Breo) penetrate the lungs more effectively, and so that breathing therapy to get rid of mucus (saline, Acapela device, etc) work better. Th e nebulised solution is more effective, but if all you have is the inhaler, use that. If Ventolin, or plain albuterol makes you so shaky that you refuse to use it except in an emergency, ask your doctor for levalbuterol neb and inhaler. Brand name is Xopenex, and it was often not covered because it was expensive, but a generic form is now available. For me levalbuterol not only means less tremors, but it does not seem to raise my heart rate or blood pressure as much as albuterol.

REPLY
3 replies
Dee | @danielad | Apr 2, 2019
In reply to @sueinmn "Ventolin is albuterol. It is not a steroid, and not addictive. As several have mentioned, using..." + (show)
@sueinmn

Ventolin is albuterol. It is not a steroid, and not addictive. As several have mentioned, using an albuterol, levalbuterol or similar neb regularly helps relax the bronchial passages so that other meds (like Tobramycin for pseudomonas or Breo) penetrate the lungs more effectively, and so that breathing therapy to get rid of mucus (saline, Acapela device, etc) work better. Th e nebulised solution is more effective, but if all you have is the inhaler, use that. If Ventolin, or plain albuterol makes you so shaky that you refuse to use it except in an emergency, ask your doctor for levalbuterol neb and inhaler. Brand name is Xopenex, and it was often not covered because it was expensive, but a generic form is now available. For me levalbuterol not only means less tremors, but it does not seem to raise my heart rate or blood pressure as much as albuterol.

Jump to this post

@sueinmn -- Thank you for the information!
--Dee

REPLY
Dee | @danielad | Apr 2, 2019
In reply to @janovr "@dalielad" + (show)
@janovr

@dalielad

Jump to this post

@janovr -- I don't see anything in your post. Did you mean to write me about something?
--Dee

REPLY
Merry, Alumni Mentor | @merpreb | Apr 2, 2019
In reply to @brigby "@merpreb So a quick research glance tells me Ventolin is albuterol. In other research, I think..." + (show)
@brigby

@merpreb So a quick research glance tells me Ventolin is albuterol. In other research, I think I read albuterol, or other Rx bronchodilators like Advair, (that I used for years) can actually lead to or worsen chest infections if used for long periods of time?

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@brigb- Yes Albuterol- sorry. That's an excellent question, one for you Pharmacist or Pulmonologist.

REPLY
Merry, Alumni Mentor | @merpreb | Apr 2, 2019
In reply to @sueinmn "Ventolin is albuterol. It is not a steroid, and not addictive. As several have mentioned, using..." + (show)
@sueinmn

Ventolin is albuterol. It is not a steroid, and not addictive. As several have mentioned, using an albuterol, levalbuterol or similar neb regularly helps relax the bronchial passages so that other meds (like Tobramycin for pseudomonas or Breo) penetrate the lungs more effectively, and so that breathing therapy to get rid of mucus (saline, Acapela device, etc) work better. Th e nebulised solution is more effective, but if all you have is the inhaler, use that. If Ventolin, or plain albuterol makes you so shaky that you refuse to use it except in an emergency, ask your doctor for levalbuterol neb and inhaler. Brand name is Xopenex, and it was often not covered because it was expensive, but a generic form is now available. For me levalbuterol not only means less tremors, but it does not seem to raise my heart rate or blood pressure as much as albuterol.

Jump to this post

@sueinmn- Thank you, I meant to write albuterol. Thank you for posting this. It's great info.

REPLY
noahs | @noahs | Apr 2, 2019
In reply to @brigby "@danielad @windwalwindwalker @pfists @tdrell Good morning! 😃 I thank God for another day! Two questions: 1)..." + (show)
@brigby

@danielad @windwalwindwalker @pfists @tdrell

Good morning! 😃 I thank God for another day!

Two questions:

1) How many folks have been diagnosed originally with mild bronchiectasis, then have it progress to moderate or severe, and over what period of time? I know we’re all different, but just curious.

2) I’ve been diagnosed with mild Bronchiectasis & colonized with MAC since 2016. This year m. Abscessus, Candida albicans and now Mucor have shown up. But I’ve never been AFB positive until this last sputum culture. Any thoughts on this? Is the AFB + a sign disease is progressing? I’m waiting on CT & sinus scan results right now.

Thanks any and all for your input. Keep on steppin’!

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Hi. I was diagnosed with mild bronchiectasis in 2005 but was stable and functioning
Very well until 2014. Then I had bad bronchitis with bad asthma every quarter until it became more frequent. By 2017 I was on antibiotics almost every other month. Got hospitalized for pneumonia. Diagnosed positive for aspergillosis and treated for six months. Diagnosed for low immune system
And given immunoglobulin monthly shots. But still I was sick and getting worse.
Finally in June 2018 I was hospitalized for 17 days to be given a 14 day two strong antibiotics by ivy, and a bronchoscopy and lavage. Still they could
Not find any definite bacteria. I was scheduled to fly to singapore for a lung biopsy
When my pulmonologist had me tested for autoimmune disease. I tested positive and now on steroids and immunosuppressant drugs. Definitely my downhill went
Uphill .. slowly but surely. Your symptoms of low grade fever and extreme fatigue was what I had... together with the hacking cough and green phlegm. This kind of autoimmune is rare . It is not lupus ... really immune system attacking the lungs primarily. So from asthma, then bronchiectasis, then interstitial pneumonitis, then aspergillosis (ABPA), then low immune system, then MAC, and now autoimmune system attacking the lungs. This is how my COPD progressed from a childhood illness of asthma. As the others, I avoid seasonal and environmental allergens / triggers. Bec of autoimmune I also have to avoid fatigue, a strong trigger for a flare up. But I am able to live a relatively normal life.
I’m female 71 y/o, retired, and live in the Philippines.

REPLY
2 replies
Dee | @danielad | Apr 2, 2019
In reply to @noahs "Hi. I was diagnosed with mild bronchiectasis in 2005 but was stable and functioning Very well..." + (show)
@noahs

Hi. I was diagnosed with mild bronchiectasis in 2005 but was stable and functioning
Very well until 2014. Then I had bad bronchitis with bad asthma every quarter until it became more frequent. By 2017 I was on antibiotics almost every other month. Got hospitalized for pneumonia. Diagnosed positive for aspergillosis and treated for six months. Diagnosed for low immune system
And given immunoglobulin monthly shots. But still I was sick and getting worse.
Finally in June 2018 I was hospitalized for 17 days to be given a 14 day two strong antibiotics by ivy, and a bronchoscopy and lavage. Still they could
Not find any definite bacteria. I was scheduled to fly to singapore for a lung biopsy
When my pulmonologist had me tested for autoimmune disease. I tested positive and now on steroids and immunosuppressant drugs. Definitely my downhill went
Uphill .. slowly but surely. Your symptoms of low grade fever and extreme fatigue was what I had... together with the hacking cough and green phlegm. This kind of autoimmune is rare . It is not lupus ... really immune system attacking the lungs primarily. So from asthma, then bronchiectasis, then interstitial pneumonitis, then aspergillosis (ABPA), then low immune system, then MAC, and now autoimmune system attacking the lungs. This is how my COPD progressed from a childhood illness of asthma. As the others, I avoid seasonal and environmental allergens / triggers. Bec of autoimmune I also have to avoid fatigue, a strong trigger for a flare up. But I am able to live a relatively normal life.
I’m female 71 y/o, retired, and live in the Philippines.

Jump to this post

@noahs -- Hi! Thank you for sharing with the group! I am very sorry to hear about your lengthy ordeal; thankfully, you are feeling and getting better! I was wondering -- By chance, is your heart rhythm slow? I am asking because a slow heart rhythm (Bradycardia) also causes a lot of fatigue, and it often goes unnoticed, particularly in women.
Stay well!
-- Dee

REPLY
1 reply
noahs | @noahs | Apr 2, 2019
In reply to @danielad "@noahs -- Hi! Thank you for sharing with the group! I am very sorry to hear..." + (show)
@danielad

@noahs -- Hi! Thank you for sharing with the group! I am very sorry to hear about your lengthy ordeal; thankfully, you are feeling and getting better! I was wondering -- By chance, is your heart rhythm slow? I am asking because a slow heart rhythm (Bradycardia) also causes a lot of fatigue, and it often goes unnoticed, particularly in women.
Stay well!
-- Dee

Jump to this post

Hi . My heart rhythm is actually in the fast side with arrhythmia. Fatigue is really from my autoimmune . Did not feel the fatigue until late 2017 and more in mid 2018. I just finished with an autoimmune flare up last week. My rheumatologist was tapering my steroids but my immune system attacked my lungs. My pulmonologist thought it was another long drawn infection until she noted my lingering low grade fever and fatigue despite the antibiotics ... I was on three sets of antibiotics for 6 weeks. My pulmo increased my steroids . My low grade fever was gone and I started to recover. My rheumatologist further increased my steroids and added addtl tab of immunosuppressant drug. I started tapering off again today April 2. As suggested in this group about tapering prednisone, we will do it more slowly and maybe just go 1mg less after I reach the 10 mg marker that suits me. I’m now on 15 mg less 2.5mg today for the next two weeks

REPLY
Brenda R. | @brigby | Apr 2, 2019
In reply to @noahs "Hi. I was diagnosed with mild bronchiectasis in 2005 but was stable and functioning Very well..." + (show)
@noahs

Hi. I was diagnosed with mild bronchiectasis in 2005 but was stable and functioning
Very well until 2014. Then I had bad bronchitis with bad asthma every quarter until it became more frequent. By 2017 I was on antibiotics almost every other month. Got hospitalized for pneumonia. Diagnosed positive for aspergillosis and treated for six months. Diagnosed for low immune system
And given immunoglobulin monthly shots. But still I was sick and getting worse.
Finally in June 2018 I was hospitalized for 17 days to be given a 14 day two strong antibiotics by ivy, and a bronchoscopy and lavage. Still they could
Not find any definite bacteria. I was scheduled to fly to singapore for a lung biopsy
When my pulmonologist had me tested for autoimmune disease. I tested positive and now on steroids and immunosuppressant drugs. Definitely my downhill went
Uphill .. slowly but surely. Your symptoms of low grade fever and extreme fatigue was what I had... together with the hacking cough and green phlegm. This kind of autoimmune is rare . It is not lupus ... really immune system attacking the lungs primarily. So from asthma, then bronchiectasis, then interstitial pneumonitis, then aspergillosis (ABPA), then low immune system, then MAC, and now autoimmune system attacking the lungs. This is how my COPD progressed from a childhood illness of asthma. As the others, I avoid seasonal and environmental allergens / triggers. Bec of autoimmune I also have to avoid fatigue, a strong trigger for a flare up. But I am able to live a relatively normal life.
I’m female 71 y/o, retired, and live in the Philippines.

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@noahs My ID doc checks my immune system periodically,
and I’m always have a couple things outside normal range. How exactly did they diagnose your rare autoimmune disorder?

REPLY
1 reply
noahs | @noahs | Apr 2, 2019
In reply to @brigby "@noahs My ID doc checks my immune system periodically, and I’m always have a couple things..." + (show)
@brigby

@noahs My ID doc checks my immune system periodically,
and I’m always have a couple things outside normal range. How exactly did they diagnose your rare autoimmune disorder?

Jump to this post

Hi. They checked my autoimmune thru blood tests... forgot what they were ... but one was ANA. I was immediately referred to a rheumatologist who confirmed that I am autoimmune and placed me on steroids and immunosuppressant drugs. Now he is trying to find the right balance for me so I can
Get off totally or a much lower dose of steroids yet prevent an autoimmune flare up. Oh btw, in Jan 2018 they found my immune system low so they thought that was causing my frequent lung
Infections. So I was given monthly intramuscular immunoglobulin shots. My condition worsened . So that’s when I was
Hospitalized for 17 days . And diagnosed autoimmune attacking the lungs. You can google it ... I googled ad nauseaeum. Autoimmune attacking the lungs.

REPLY
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