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.

Dear People
So glad to find you & this site. This is my first post. I was diagnosed in May of 2018. I had had bronchitis 2 years in a row & x-ray taken in urgent care checking for pneumonia found interstitial reticulonodular lung disease which I looked up on web – scary! Saw wonderful pulmonologist (hadda fight for it with My Med ins). Have had 2 CT scans that show Bronchiecstesis. Turns out it showed up on previous x-rays from when I had pneumonia around 2011. Nobody told me.
I’m a non-smoker so who knows? While inflammation some areas of lungs better, some a bit worse. So far, progression is slow. The doc says the bronchiectasis will stay with me. Relatively mild.
Hard to cough stuff up, could only sleep on left side till recently. From reading here & elsewhere online I have learned that physiotherapist can teach one how to clear lungs – there are some YouTube videos as well. I’m going to ask for referral next visit. Also have found that propping myself up on a bunch of pillows at night has enabled me to sleep on my back. Still can’t sleep on right side without pain & coughing- but really helps. Even the pulmonary doc seemed baffled by this. I’ve learned from reading others’ experiences that this is common!!
I am also afraid of being in crowds, getting sick again. I got a pneumonia vaccine & will get booster next year. Also got the super duper senior flu shot. No guarantees & no vaccine for bronchitis.
I exercise most mornings at home & am trying to stay hydrated. I live in N Calif & smoke from fires was awful. Tho stayed in, it seeped in. Dreading another fire season.
So this is my story so far.
Bless you all for your posts – I don’t feel so alone & scared. I’m also so sorry for your suffering. Hoping mutual support here will help us all.

Liked by Dee

REPLY
@sueinmn

@kpost2 Do you also have MAC, and are you being treated with antibiotics? If so, you need to avoid alcoholic beverages because the antibiotics are very hard on liver and kidneys, and alcohol just adds to the load.
Are you suffering weight loss as the result of bronchiectasis and/or MAC? You need to be especially alert to maintain adequate calorie intake, especially a good amount of protein, as it helps maintain & repair tissue.
Also, many with bronchiectasis have GERD (reflux), either with symptoms or without (aka "silent GERD".) If you are among them, you should be following GERD precautions to avoid gastric fluids getting into your lungs, causing more damage. Search for "GERD Diet" or "GERD precautions" and look at sites ending in .edu or .org for the best research-based information. Avoid paying attention to sites trying to sell you anything, whether it is supplements, special food, or "secrets…"
Other than that, avoid foods that make you feel worse. If you decide to eliminate dairy, be sure you use adequate calcium supplements. There is also some evidence that bronchiectasis is associated with low Vitamin D levels, bronchiectasisnewstoday.com/bronchiectasis-experimental-treatments/vitamin-d/. Maybe talk to your pulmonologist about Vitamin D-3 testing & supplementation.

Jump to this post

Sue, thank you so much for information. I’m new to this site as of today! I have been waking with acid reflux a couple of nights a week, chew a Pepsid & can usually get back to sleep. Is GERD one of the symptoms of this disease? I can understand it making it worse by inhaling into lungs. Do others with Bronchiecstasis have this problem? I thought it might be from waking & having to cough.
Thanks again. Knowledge is powerful thing 🙏💞

Liked by Dee

REPLY
@skylark1

Dear People
So glad to find you & this site. This is my first post. I was diagnosed in May of 2018. I had had bronchitis 2 years in a row & x-ray taken in urgent care checking for pneumonia found interstitial reticulonodular lung disease which I looked up on web – scary! Saw wonderful pulmonologist (hadda fight for it with My Med ins). Have had 2 CT scans that show Bronchiecstesis. Turns out it showed up on previous x-rays from when I had pneumonia around 2011. Nobody told me.
I’m a non-smoker so who knows? While inflammation some areas of lungs better, some a bit worse. So far, progression is slow. The doc says the bronchiectasis will stay with me. Relatively mild.
Hard to cough stuff up, could only sleep on left side till recently. From reading here & elsewhere online I have learned that physiotherapist can teach one how to clear lungs – there are some YouTube videos as well. I’m going to ask for referral next visit. Also have found that propping myself up on a bunch of pillows at night has enabled me to sleep on my back. Still can’t sleep on right side without pain & coughing- but really helps. Even the pulmonary doc seemed baffled by this. I’ve learned from reading others’ experiences that this is common!!
I am also afraid of being in crowds, getting sick again. I got a pneumonia vaccine & will get booster next year. Also got the super duper senior flu shot. No guarantees & no vaccine for bronchitis.
I exercise most mornings at home & am trying to stay hydrated. I live in N Calif & smoke from fires was awful. Tho stayed in, it seeped in. Dreading another fire season.
So this is my story so far.
Bless you all for your posts – I don’t feel so alone & scared. I’m also so sorry for your suffering. Hoping mutual support here will help us all.

Jump to this post

Sorry – diagnosed May 2019. Haven’t figured out how to edit 1st post.

Liked by Dee

REPLY
@skylark1

Dear People
So glad to find you & this site. This is my first post. I was diagnosed in May of 2018. I had had bronchitis 2 years in a row & x-ray taken in urgent care checking for pneumonia found interstitial reticulonodular lung disease which I looked up on web – scary! Saw wonderful pulmonologist (hadda fight for it with My Med ins). Have had 2 CT scans that show Bronchiecstesis. Turns out it showed up on previous x-rays from when I had pneumonia around 2011. Nobody told me.
I’m a non-smoker so who knows? While inflammation some areas of lungs better, some a bit worse. So far, progression is slow. The doc says the bronchiectasis will stay with me. Relatively mild.
Hard to cough stuff up, could only sleep on left side till recently. From reading here & elsewhere online I have learned that physiotherapist can teach one how to clear lungs – there are some YouTube videos as well. I’m going to ask for referral next visit. Also have found that propping myself up on a bunch of pillows at night has enabled me to sleep on my back. Still can’t sleep on right side without pain & coughing- but really helps. Even the pulmonary doc seemed baffled by this. I’ve learned from reading others’ experiences that this is common!!
I am also afraid of being in crowds, getting sick again. I got a pneumonia vaccine & will get booster next year. Also got the super duper senior flu shot. No guarantees & no vaccine for bronchitis.
I exercise most mornings at home & am trying to stay hydrated. I live in N Calif & smoke from fires was awful. Tho stayed in, it seeped in. Dreading another fire season.
So this is my story so far.
Bless you all for your posts – I don’t feel so alone & scared. I’m also so sorry for your suffering. Hoping mutual support here will help us all.

Jump to this post

@skylark1 Just to clarify – many if not most people with bronchiectasis are not smokers. Certain other things can predispose you to developing it – among them are asthma, GERD, some pneumonia, or some type of rheumatoid arthritis. In my immediate family, my husband was diagnosed, and also has arthritis that shows in his lungs. My daughter & I have bronch, we have both had asthma for years. My Mom had it, was never a smoker but was exposed to huge amounts of dust in her work, and suffered from frequent pneumonia.
Bronchiectasis is a progressive disease, slow in some, faster in others. To me, the most important thing is to stay healthy and avoid the bad lung infections, especially MAC and pseudomonas, which are very difficult to treat. Many people here have these and must undergo unpleasant antibiotic therapies. Clearing the airways gets rid of the mucus that provides a place for those bugs to grow, so it is very important to get some instruction and learn to do it, then to do it regularly, even if you don't feel sick.
Have you been tested to determine if there is an infection in your lungs? Sometimes the pain, coughing and difficulty breathing can be symptoms of infection, as well as fatigue and weight loss. MAC cannot be diagnosed from a simple blood test – your sputum must be cultured for 6 or 8 weeks in a special lab to see if it is present, and if so, what drugs can treat it.
I hope you continue to visit our group and ask questions – many people have a lot of experience with symptoms and doctors.
Sue

Liked by Dee

REPLY
@skylark1

Sue, thank you so much for information. I’m new to this site as of today! I have been waking with acid reflux a couple of nights a week, chew a Pepsid & can usually get back to sleep. Is GERD one of the symptoms of this disease? I can understand it making it worse by inhaling into lungs. Do others with Bronchiecstasis have this problem? I thought it might be from waking & having to cough.
Thanks again. Knowledge is powerful thing 🙏💞

Jump to this post

@skylark1 The thinking by the docs is that GERD may be a contributing factor to bronchiectasis – the long-term entrance of the acid into the lungs can cause damage. So the advice is to treat the GERD to prevent further damage. I am not a doctor, so I cannot tell you what is the best approach for you. In my case, I don't seem to have it, and have only taken acid-reducing meds briefly to control acid when the antibiotics for MAC were causing a great deal of stomach distress. My primary physician was trying everything to heal my stomach where 18 months of meds had irritated it to the point of constant pain.

Liked by Dee

REPLY
@sueinmn

@skylark1 Just to clarify – many if not most people with bronchiectasis are not smokers. Certain other things can predispose you to developing it – among them are asthma, GERD, some pneumonia, or some type of rheumatoid arthritis. In my immediate family, my husband was diagnosed, and also has arthritis that shows in his lungs. My daughter & I have bronch, we have both had asthma for years. My Mom had it, was never a smoker but was exposed to huge amounts of dust in her work, and suffered from frequent pneumonia.
Bronchiectasis is a progressive disease, slow in some, faster in others. To me, the most important thing is to stay healthy and avoid the bad lung infections, especially MAC and pseudomonas, which are very difficult to treat. Many people here have these and must undergo unpleasant antibiotic therapies. Clearing the airways gets rid of the mucus that provides a place for those bugs to grow, so it is very important to get some instruction and learn to do it, then to do it regularly, even if you don't feel sick.
Have you been tested to determine if there is an infection in your lungs? Sometimes the pain, coughing and difficulty breathing can be symptoms of infection, as well as fatigue and weight loss. MAC cannot be diagnosed from a simple blood test – your sputum must be cultured for 6 or 8 weeks in a special lab to see if it is present, and if so, what drugs can treat it.
I hope you continue to visit our group and ask questions – many people have a lot of experience with symptoms and doctors.
Sue

Jump to this post

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

>

Liked by Dee

REPLY
@sueinmn

@skylark1 The thinking by the docs is that GERD may be a contributing factor to bronchiectasis – the long-term entrance of the acid into the lungs can cause damage. So the advice is to treat the GERD to prevent further damage. I am not a doctor, so I cannot tell you what is the best approach for you. In my case, I don't seem to have it, and have only taken acid-reducing meds briefly to control acid when the antibiotics for MAC were causing a great deal of stomach distress. My primary physician was trying everything to heal my stomach where 18 months of meds had irritated it to the point of constant pain.

Jump to this post

@skylark1 and also if you have GERD or acid reflux do not sleep on your stomach. That's how my doctor says mine happened. I was a stomach sleeper and the acid aspirates into your lungs at night if you're on your stomach, hence, sleeping on a wedge is important or a bunch of pillows. I found a great wedge in the catalog Hammacher Schlemmer that is not such a huge angle as my first one which I hated because it as so big and bulky. I also have a hiatal hernia which doesn't help matters. Nan

Liked by Dee

REPLY
@nannette

@skylark1 and also if you have GERD or acid reflux do not sleep on your stomach. That's how my doctor says mine happened. I was a stomach sleeper and the acid aspirates into your lungs at night if you're on your stomach, hence, sleeping on a wedge is important or a bunch of pillows. I found a great wedge in the catalog Hammacher Schlemmer that is not such a huge angle as my first one which I hated because it as so big and bulky. I also have a hiatal hernia which doesn't help matters. Nan

Jump to this post

I’m pretty much a side sleeper. In past weeks I’ve piled up pillows to prop myself up & can now also sleep on back – much better! Thank you for tip on wedge- will definitely look into it!

Sent from Cynthia's iphone

>

Liked by Dee

REPLY

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. 💞

Liked by Dee

REPLY
@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. 💞

Jump to this post

@skylark1 My scans are every six months, but I think the general rule is once a year.

Liked by Dee

REPLY
@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

>

Jump to this post

@skylark1 – Cynthia the reason it is so vital to concretely identify MAC or NTM (Non-tubercular mycobacteria) of which it is a subset, is that it is slow-growing, often antibiotic-resistant, extremely difficult to eradicate and does not respond to typical antibiotics. Treatment is generally by a combination of antibiotics for a long period of time, 18 months to 2 years is not unusual. It is becoming more widely known, but still not understood, so even some pulmonologists have limited experience. I would suggest you do some more reading and arm yourself with a lot of questions, then if MAC is diagnosed be sure your doc is experienced in treating it or ask to be referred to one who is. I recently changed pulmonologists, and even though the first was experienced with MAC, I learned after the fact that he was a "one-size-fits-all" sort of doc, not open to trying different things if the first one didn't work. So glad I switched, even though I have to drive all the way across our metro area for the new doc.

REPLY

@skylark1 …Regarding pillows vs wedge…My Dr at Mayo said absolutely no pillows…sleeping of pillows contorts the body into a bent position that can increase pressure on your abdomen and aggravate symptoms. He suggested the wedge and no eating or drinking for 3 hours before bed. It helps a lot!

REPLY
@alleycatkate

@skylark1 …Regarding pillows vs wedge…My Dr at Mayo said absolutely no pillows…sleeping of pillows contorts the body into a bent position that can increase pressure on your abdomen and aggravate symptoms. He suggested the wedge and no eating or drinking for 3 hours before bed. It helps a lot!

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Hello Skylark, I agree wedges are much superior to pillows. I use one that you place between your box springs and mattress. You can learn more at Amazon see: https://www.amazon.com/Avana-Mattress-Elevator-Incline-Support/dp/B07R8GLK6B/ref=sr_1_5?crid=23HA0AZBCN2G5&keywords=mattress%2Belevation%2Bwedge&qid=1580166465&s=home-garden&sprefix=mattress%2Belev%2Cgarden%2C162&sr=1-5&th=1 Another thing you could do is elevate the head of your bed 4-5". I have seen on medical sites that pillows can make your GERDS/Reflux worse.

Liked by Dee

REPLY
@sueinmn

@skylark1 – Cynthia the reason it is so vital to concretely identify MAC or NTM (Non-tubercular mycobacteria) of which it is a subset, is that it is slow-growing, often antibiotic-resistant, extremely difficult to eradicate and does not respond to typical antibiotics. Treatment is generally by a combination of antibiotics for a long period of time, 18 months to 2 years is not unusual. It is becoming more widely known, but still not understood, so even some pulmonologists have limited experience. I would suggest you do some more reading and arm yourself with a lot of questions, then if MAC is diagnosed be sure your doc is experienced in treating it or ask to be referred to one who is. I recently changed pulmonologists, and even though the first was experienced with MAC, I learned after the fact that he was a "one-size-fits-all" sort of doc, not open to trying different things if the first one didn't work. So glad I switched, even though I have to drive all the way across our metro area for the new doc.

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Hi Sue, Can you give us any tips on how to find a good Pulmonologist that is truly experienced with MAC and/or NTM? Thank you for all the helpful information that you have posted.

Liked by Dee

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@poodledoc

Hi Sue, Can you give us any tips on how to find a good Pulmonologist that is truly experienced with MAC and/or NTM? Thank you for all the helpful information that you have posted.

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@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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