Bronchiectasis: New Diagnosis

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

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.

@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

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!

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

@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?

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

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

@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)

@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.