Bronchiectasis and diet

I am not a régular here but find encouragement in the last few posts I read on diet. I’m interested if people who have been dealing with this for some time would like to share info about finding medical providers or centers they have found most helpful in dealing with this condition. I have also have RA (and Parkinson’s) - also impacting my lungs- have had some progression on CT with small cavities have had recurrent weird “opportunistic” infections like pseudomonas and seem to have some background fungus. I take immune suppressants for my RA which has to be balanced with the lung issues. Seems that the goal is to maintain be best state of homeostasis to limit progression and live well and enjoy life. I love my doctor who is at retirement stage. He is wise and experienced and sees quality of life as the ultimate goal. It took me a while to find him. Best to you all.

I agree!

As a person with a whole lot of other health issues going on, maybe you should consider a visit to Mayo Clinic, where they are accustomed to managing multiple issues and working in conjunction with your provider "back home" to coordinate care.

Here is a link you can use to get started: http://mayocl.in/1mtmR63
Rochester and Jacksonville are centers for treating bronchiectasis, I ma not sure about Arizona.
Good luck in your journey - it sounds like you are keeping a positive attitude, which is a big part of living well with whatever life throws at us.
Sue

Thank you- that is an excellent consideration!

Susan

Sue, Don't know if you get to see or review all so I am sending you this also for your thoughts.
I was doing less meat, low fat yogurt, low fat in general, very little dairy, mostly grains, beans, good oils and vitamins that we know we need D, C, Zinc etc. etc. . Meaning I was not doing the average American Diet of steak and potatoes....so to speak.
I have lost nearly 40 lbs now....vs. the 30lbs originally at the time of diagnosis.
Having listened to the NJH dietian this past week via NTMir You Tube I thought, before watching the dietian from NJH, I was doing right by not having fat and as well less animal protein etc. etc. Turns out from what she indicated I am not eating right in order to gain weight.....and therefore the reason for my not gaining weight and losing more weight ever since I started walking two miles a day. She stated it is a diet for underweight bronchiectasis patients whose immune system is in overdrive. She indicated those who need to put on weight need to think in terms of the average American diet of steak and potatoes and especially fast absorbing carbohydrates.
I felt good and have been strong all along since this problem surfaced. It is that I just have the constant time consuming task of clearing the mucus all day long. I have been using nebulizer and aerobika since November 2023.

I realize we are all different and there are different philosophies (be it professionals or individuals) about many things and we have to decide what is best for us.

I may need to give greater thought to it all, expecially the dairy. ANY THOUGHTS to share about it all.

I was doing less meat, low fat yogurt, low fat in general, very little dairy, mostly grains, beans, good oils and vitamins that we know we need D, C, Zinc etc. etc. . Meaning I was not doing the average American Diet of steak and potatoes....so to speak.
I have lost nearly 40 lbs now....vs. the 30lbs originally at the time of diagnosis.
Having listened to the NJH dietian this past week via NTMir You Tube I thought, before watching the dietian from NJH, I was doing right by not having fat and as well less animal protein etc. etc. Turns out from what she indicated I am not eating right in order to gain weight.....and therefore the reason for my not gaining weight and losing more weight ever since I started walking two miles a day. She stated it is a diet for underweight bronchiectasis patients whose immune system is in overdrive. She indicated those who need to put on weight need to think in terms of the average American diet of steak and potatoes and especially fast absorbing carbohydrates.
I felt good and have been strong all along since this problem surfaced. It is that I just have the constant time consuming task of clearing the mucus all day long. I have been using nebulizer and aerobika since November 2023.
I realize we are all different and there are different philosophies about many things and we have to decide what is best for us.

I may need to give greater thought to it all, expecially the dairy. ANY THOUGHTS to share,

You say, ..."I may need to give greater thought to it all, expecially the dairy. ANY THOUGHTS to share,"
Here are my thoughts -
What we need to consider as individuals with Bronchiectasis and/or MAC is where we fall in terms of having a healthy body mass. We have all been brainwashed to believe "the thinner the better." And thin can be healthy IF it is deliberate, is accompanied by a healthy diet, our blood chemistry is all good, and our body has sufficient reserves. BUT when weight loss is beyond voluntary, and we begin to look gaunt and are losing muscle mass...it can be time for action.

We have also been told, at various times, dairy is bad for us, red meat is bad, carbs are bad...the list is endless depending on the celebrity "experts" and diets du jour. Over 40 years ago, my grandmother's doctor told my mother and me "Keep some meat on your bones, you need it when you get sick like Ruby is now" and although my weight was always appropriate for my height and body type, I never stressed over whether I weighed 115 pounds or 125, I just continued to eat a healthy diet and stay active.

Over the past 20 years, I have had quite a few major surgeries and health complications including heavy metal poisoning, Graves Disease (hyperthyroidism), Bronchiectasis and MAC; during those times my weight often fell alarmingly, to below 100 pounds.

Using the dieticians' advice from the NJH videos, in 2018 I put myself on a regimen that included healthy, high-density foods, including dairy, meat, beans, oils and nuts. At times when food was unappealing to me, I forced myself to eat one small portion every hour - a piece of aged cheese, full-fat yogurt with fruit, a hard-boiled egg, an ounce of cashews, 4-6 ounces of a high-protein smoothie. Plus at least 2 regular meals each day. Over two years after stopping antibiotic therapy, I finally got back to 120 pounds, and have stayed near it for over a year now.

Now in my 70's, I eat a 50-50 mix of the "American diet" - meat and potatoes, pizza, etc, and a "cleaner" diet. For example today instead of dinner, we will have shrimp with cocktail sauce, cheese and maybe hard sausage, healthy crackers with dips (both bean & sour cream choices), a fruit plate, raw veggies, chips, and probably some sweets, at our football party. Tomorrow's dinner will be (real) Mexican food, which includes salad, beans or bean soup, fresh salsa & avocado with a few chips, a little lean meat and a few corn tortillas. Wednesday will be a vegetable soup or stir-fry with chicken and maybe some wild rice. Our daytime food is yogurt with fruit, healthy granola or seeds, cheese or peanut butter with crackers and fruit, raw veggies or veggie juices, nuts, toast with peanut butter, protein shakes, wholegrain snack bars, homemade trail mix. Our indulgence is one or 2 pieces of good dark chocolate. or very occasionally a dish of good ice cream.

To clarify:
Question: You did the NJH diet while on anti-biotics for MAC and gained during that time.... or.... it wasn't until after completing the anti-biotics and being on the diet that you gained the weight back.?

Yes, that is the problem " loss is beyond voluntary, and we begin to look gaunt and are losing muscle mass..."
I never had to stress or be concerned about my weight until just before the diagnosis of BE and yes "Keep some meat on your bones, you need it when you get sick" that is my concern. My blood chemisty and 90% of tests are all good and I have eaten a healthy diet with the supplements best for keeping up the immune system that apparently goes into overdrive with this health problelm. Just yet, after realizing this BE surfaced 7 years ago and not medically recognized and finally diagnosed until 8/2022, I have not had to go on anti-biotics and hope that I somehow avoid MAC/MAI requiring them.

Sue, with all you do and have described you have done well by yourself during your health bouts and concerns. I feel I have also...pulled myself out of those "holes" and got back to total good health and activities. This BE and what is has caused me, us, is and going to be a real challenge for me.

Thanks, got it..how you approached the weight loss and the diet now. I agree with your approaches. I will use the NJH approach to putting the weight back on and learning as I go..especially if I can or cannot do the diary. Mucus, mucus, mucus....not our friend.

As I mentioned in another post, you were so kind to read and reply to me, I am 81...(well I put on a few months... 4 months🤣 ) and UT Tyler visit implied.....eat, live your life. So true....I will continue to work at keeping me going on the road to a better BMI, weight and hopefully less needing to clear the mucus with the home therapy of the airway clearance methods. Working on getting all my understandings with this BE and as well all my ducks in a row for now.

I managed to gain 4 pounds from my lowest whilst still on antibiotics over about 6 months, but felt like I was constantly eating or thinking about it!
I did eat ice cream with hot fudge and caramel before bed almost every night during that time. I also put Orgain a double scoop protein'n'greens in my smoothies, and tried to drink about 12 oz a day (keeps for 3 days in refrigerator.)
My shake recipe - 1 c full-fat Greek yogurt, 2 c fruit (mixed berries, mangoes, bananas, oranges - fresh or frozen) one carrot, one large avocado (or frozen equivalent), two large scoops protein powder, blended with milk or ice. Sometimes a little peanut or sunflower butter. (I think 6 ounces was 120-150 calories depending on what was in it.)
Sue

On the advice of an ENT dr. I took a 3 week break from dairy of any kind to see if it made any difference in the amount of mucus....result it made zero difference so I happily went back to cheese and cream and yogurt. The dr. said not everyone got excess mucus from dairy and you just had to figure it out for yourself. I thought that was useful advice because I had endlessly been told by people that dairy was very bad for mucus.