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.

@america

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

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@america, if your appointment is a ways out, you can always phone that request in. (7% saline)

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@navylady

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.

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Thanks for the reminder. I started, decades back, keeping written records of health care. Now I know why. I take my own records and compare them to the notes from Mayo, NIH, Univ of Helsinki, ARUP and others. Then, if I am not satisfied with the diagnosis given by one of the labs, I know exactly why, and what I can do, even if the diag is all screwed up. Example: I was diagnosed by a local clinic with chronic bronchiectasis a decade ago, and the doc said I just had an over-reaction to a med. Mayo says differently, and I know now what I really have, or at least I know that my disease is not just an "over-reaction". It is a deadly disease, one of several I have had and fought with for my entire life. And when I do die, at least I will have the satisfaction of knowing what it is, even if the local docs are afraid of it.

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@oldkarl

Thanks for the reminder. I started, decades back, keeping written records of health care. Now I know why. I take my own records and compare them to the notes from Mayo, NIH, Univ of Helsinki, ARUP and others. Then, if I am not satisfied with the diagnosis given by one of the labs, I know exactly why, and what I can do, even if the diag is all screwed up. Example: I was diagnosed by a local clinic with chronic bronchiectasis a decade ago, and the doc said I just had an over-reaction to a med. Mayo says differently, and I know now what I really have, or at least I know that my disease is not just an "over-reaction". It is a deadly disease, one of several I have had and fought with for my entire life. And when I do die, at least I will have the satisfaction of knowing what it is, even if the local docs are afraid of it.

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@oldkarl One thing I have learned from this forum (and I have learned plenty) is that we have to advocate for ourselves. This is a serious disease, and we need to keep our records with us (learned that from Katherine) and be our own best advocate. Thank you. Irene

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Sorry its been awhile. I have noticed that Dairy products do make me feel worse. I need to start drinking water and not so much soda. Soda is a big downfall
for me. I have noticed reflux in the last few months. My Mom thinks that I need Supplements to cure me and not medicine. She sent me a powdered drink mix called Youngevity Healthy Body Start Pak 2.0 it has 90 essential nutrients for the body. Didn't know if this is good to take or not.
My Bronchiectasis has always been on my left side. Now after a chest xray it's on my right side now. I wear a Smart vest everyday to loosen up mucus and also do IVIG Privigen Infusion treatments every four weeks. My Immune system is very low. So far I haven't been sick or missed work.
Changing my food diet is going to be a BIG CHANGE!

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Thanks for your input. It is something I am going to check out.

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@kpost2

Sorry its been awhile. I have noticed that Dairy products do make me feel worse. I need to start drinking water and not so much soda. Soda is a big downfall
for me. I have noticed reflux in the last few months. My Mom thinks that I need Supplements to cure me and not medicine. She sent me a powdered drink mix called Youngevity Healthy Body Start Pak 2.0 it has 90 essential nutrients for the body. Didn't know if this is good to take or not.
My Bronchiectasis has always been on my left side. Now after a chest xray it's on my right side now. I wear a Smart vest everyday to loosen up mucus and also do IVIG Privigen Infusion treatments every four weeks. My Immune system is very low. So far I haven't been sick or missed work.
Changing my food diet is going to be a BIG CHANGE!

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@kpost2 We were able to kick soda and expensive non-calorie drinks with flavorings for water. My husband ditched diet soda for Propel – little powder packets that contain some electrolytes and natural flavors but no sugar or sweeteners. The one labelled for 8oz flavors his 24oz water bottle. I use a liquid flavoring without sugar, sweeteners or coloring. I go with what is avaible locally, so currently it's one called Enhanca from the local HEB. I use a different one in Minnesota but can't remember the name right now. In cold weather we also drink (unsweetened) herbal teas.
As for changing your diet, the key to success for me was "baby steps." Over a period of time, I would subtract one bad choice and add one good one, then wait at least a few weeks to make the next change. And I learned to keep the undesirable stuff out of the house, office, car… For example, potato chips are not here – but we have popcorn cakes, which have much less salt & fat. And they can be a real good snack topped with a little peanut butter or cheese or a bit of guacamole.
What kind of changes are you trying to make?

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I have a question for anyone – is there a treatment for bronchiectasis itself? My Mac and nocardia seem to be in remission but I’m getting short of breath and have a lot of buttery texture and color sputum. Am doing to try to see my doc this week. I was told at one point there wasn’t a treatment for bronchiectasis but the other bacteria that bothered it. Can anyone give me some info? Thanks. Marilyn

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I still say chest xrays do not show mac. Maybe it is the people reading the xray that don't know what they are looking for. I went almost 10 to 15 years not knowing what it was until a young intern sent me for broncoscope. They grew the sample and said I had mac. Maybe u do not have mac. Maybe phemonia. Please excuse the spelling. I have a stack of xrays an inch thick. When they found it I went on the big 3 for 6 months. It comes and goes and it always there waiting to make you feel bad again.
I had issues with the salt but have figured it out. It is not the salt but the other concockshuns that I have tried. I do lots of silly stuff trying to beat this.Not much I have not tried. I finally have the dr giving me antibiotics that I can use as needed. I may go 3 months feeling good and then I get run down and I am back on the drugs. My issue is they are getting less effective each time I do this. Hoping the salt 7% saline will be the answer. These people on this forum will help u they are the best. Your northern canadian friend Garry

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@marilynk

I have a question for anyone – is there a treatment for bronchiectasis itself? My Mac and nocardia seem to be in remission but I’m getting short of breath and have a lot of buttery texture and color sputum. Am doing to try to see my doc this week. I was told at one point there wasn’t a treatment for bronchiectasis but the other bacteria that bothered it. Can anyone give me some info? Thanks. Marilyn

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@marilynk There is no cure for Bronchiectasis as far as I am aware. There is treatment such as airway clearance, steroids, and antibiotics which can help keep it from getting worse. (irene5)

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@marilynk

I have a question for anyone – is there a treatment for bronchiectasis itself? My Mac and nocardia seem to be in remission but I’m getting short of breath and have a lot of buttery texture and color sputum. Am doing to try to see my doc this week. I was told at one point there wasn’t a treatment for bronchiectasis but the other bacteria that bothered it. Can anyone give me some info? Thanks. Marilyn

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@marilynk, No. There is no cure for bronchiectasis. It is a progressive disease where the lung tissue becomes deformed and damaged. This opens up the probability of catching opportunistic infections. The rate of progressive deterioration varies from patient to patient. For some, it is very slow. It is extremely important to keep from getting respiratory infections. With each infection event, comes scar tissue in the lungs. That is why it is important to get your annual flu shot, and start antibiotics (if not on them already) right away at the onset of colds etc. Use 7% inhaled sodium chloride on a daily basis if your dr has approved of such. The only thing we can do about bronchiectasis is to be more careful with our lungs. i.e. do not use spray paint or handle potting soil without a mask, avoid hot tubs, etc. I personally, will not do any of these things, period. It is not worth the risk to my lungs.

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@irene5

@oldkarl One thing I have learned from this forum (and I have learned plenty) is that we have to advocate for ourselves. This is a serious disease, and we need to keep our records with us (learned that from Katherine) and be our own best advocate. Thank you. Irene

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Irene, Your message bears repeating occasionally; I'm glad you just did. Don

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@windwalker

@marilynk, No. There is no cure for bronchiectasis. It is a progressive disease where the lung tissue becomes deformed and damaged. This opens up the probability of catching opportunistic infections. The rate of progressive deterioration varies from patient to patient. For some, it is very slow. It is extremely important to keep from getting respiratory infections. With each infection event, comes scar tissue in the lungs. That is why it is important to get your annual flu shot, and start antibiotics (if not on them already) right away at the onset of colds etc. Use 7% inhaled sodium chloride on a daily basis if your dr has approved of such. The only thing we can do about bronchiectasis is to be more careful with our lungs. i.e. do not use spray paint or handle potting soil without a mask, avoid hot tubs, etc. I personally, will not do any of these things, period. It is not worth the risk to my lungs.

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Thank you – I knew there wasn’t a cure but thought there might be something to put it into remission. I have been doing the albuterol in my nebulizer and will ask about the sodium. I’m on Azithromycin 3 days a week. I’m also doing the clear lung capsules. Seems to help me cough if there’s something to cough up.

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@kpost2

Sorry its been awhile. I have noticed that Dairy products do make me feel worse. I need to start drinking water and not so much soda. Soda is a big downfall
for me. I have noticed reflux in the last few months. My Mom thinks that I need Supplements to cure me and not medicine. She sent me a powdered drink mix called Youngevity Healthy Body Start Pak 2.0 it has 90 essential nutrients for the body. Didn't know if this is good to take or not.
My Bronchiectasis has always been on my left side. Now after a chest xray it's on my right side now. I wear a Smart vest everyday to loosen up mucus and also do IVIG Privigen Infusion treatments every four weeks. My Immune system is very low. So far I haven't been sick or missed work.
Changing my food diet is going to be a BIG CHANGE!

Jump to this post

Hey kpost, I'll begin by making full disclosure: I'm have a galloping bias about the place of diet: after reading T.Colin Campbell's magnum opus The China Study in 2008 and after flirting with vegetarianism off and on since teenage, Campbell's book resulted in me forthwith becoming committed to a low-fat, whole-food, exclusively plant-based way of eating. Since then I've not knowingly eaten animal flesh or animal lactation products. Also, I use no cooking oils in my food prep. You can get all the fat you need from high fat foods like avoacados, olives, soy milk and so on.
You're on the right track ditching the dairy. I agree fully with your mother's position regarding medicines, though I part ways with her regarding supplements. Take Hippocrates lead and let your food be your medicine. Eat real food; pass the supplements. Our bodies have no more need for cow's milk than we do for giraffe, eland, tiger, or hippopotamus milk. Indeed humans are the only species to continue eating milk beyond weaning (and on top of that, the milk from another species).

Animal based foods place added burden on the human body since we're not well adapted by our evolutionary history to consume them in the abundance the average person does now. MAC AND BRONC place enough burden on our bodies, why up the ante by eating dead flesh? Don

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@thumperguyYes, that is so true. A plant based diet is absolutely the way to go. When I was in college in the sixties there was a song by Melanie with the words, “ I don’t want nothin’ dead in me.” I became a lacto vegetarian at that time. I wish I had given up dairy, but I never did. Unfortunately, I spent the next several decades hanging over the sink eating off of peoples’s plates due to teaching and raising ten children. (Their plates – my husband always finished his:)) Good nutrition is key for us in this battle with MAC and Bronchiectasis. Had I known then what I know now I would have done things differently. I wish I had a remote and could press the rewind button on that one. We should all eat what is good for us and sugar shouldn’t be anywhere on that menu. Down the road I am thinking plant based might be the most appropriate diet for the planet and the human race. I do so love a Fribble from Friendly’s:). Irene5

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As they say we are what we eat. I stopped eating meat, dairy,sugar and bread. I was only eating fruit and veg's I was determind to beat this. I lost 30 lbs. I stll have mac. I do the saline at 7% and I feel pretty good,touch wood. A freind wrote a book and it says our body can repair it's self if we give it the proper food. Since they pasturized milk they have made it hard to digest. Flour has so many chemicals now and has been genitically changed.Sugar is the worst. Meat we use abit of it but we cook it and our body has to get rid of all the waste. We just live with mac and do our best to survive eating properly really does help. garry

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