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MAC & Bronchiectasis | Last Active: 5 days ago | Replies (42)Comment receiving replies
Replies to "Paxmundi, so you do not have MAC but you do have bronchiectasis. I also understand that..."
Sorry it took so long to reply! I work and I had deadlines I had to meet. Fell off the research wagon for a bit. Just to clear up a few things:
As far as I know I don't have MAC but a mild to moderate case of bronchiectasis and a lot of scarring from my TB history. I have never been able to produce a good sputum sample and my pulmonologist doesn't really advise a bronchoscopy. My poor little lungs have been through enough hell already. But who knows if I have it or not. He isn't worried about that.
I have often felt the urge to cough, but drinking a lot of warm water quells that cough remarkably well, seems to unplug the mucus plugs. I am now starting the day with warm water as soon as I wake up to help loosen the night's secretions before I start my day. As I said previously, I supplement with liquid trace minerals. And do take a variety of other supplements.
The soup-based diet is part of that whole rationale of thinning the secretions as much as possible since I can't employ the more agressive means of airway clearance because of my history of massive hemoptysis. BUT my soups DO include veggies. I steam a variety of veggies (I rotate the variety constantly) and puree them in a Vitamix blender and have those in the fridge for a day or two of soups. In my soups I put some of the puree, hight-quality chicken bone broth, 1/2 a cup of some whole grain like quinoa or millet or buckwheat groats and either a half a cup of lentils of various kinds, sometimes also pureed, or else a slab of high-protein tofu. When the mucus load seems more manageable, which is more often in the past few days after so much trial and error, I add a piece of sprouted whole wheat toast cut up in small chunks to the soup. Never want it to be too thick so I add boiling water to it, and a tablespoon of miso usually, and grate some ginger in there and a dash of lemon to help with the mucus as well. I also often put in a tablespoon of nutritional yeast, which is high in protein and b vitamins. Also seaweed flakes sometimes. I eat three bowls of this a day, so my entire life has changed in the past year in terms of what I can eat. I also put four tablespoons of organic avocado oil and/or virgin olive oil (from Costco) in every bowl of soup I eat for the fat. I eat a small salad a few times a week with only oil and lemon as dressing.
I have to abide by this very Spartan regimen if I want to avoid small bleeds and being up several times a night with the urge to cough and having to drink and drink warm water until I dislodge whatever is stuck in my airways. I had to be hospitalized twice for observation since March for bleeds that scared me b/c of my history. And then had to have IV antibiotics, and then a course of heavy antibiotic when I went home. I want to do the best I can to avoid that since it plays such havoc with the gut microbiome, so am willing to sacrifice eating all the delicious things I was once able to eat. I'm grateful that so far the price is not at all too great to be able to manage.
I can only eat a nut or too very cautiously and hardly ever now--when previously I could just grab a small fistful of walnuts or pecans, or pumpkin seeds for an added snack. I also eat berries of various kinds, and other fruits, and crunchy watery vegetables like red peppers and cucumbers, very well chewed with my warm water always by my side. I eat a small can of sardines a week, smash them into my soup over two meals, and salmon about every other week--not doing so well with it right now in terms of congestion. That I also have to put in the soup. I eat a few spoonfuls of yoghurt here and there, but not often. And when stable, I have a croissant snack with fruit and lots of warm water with it. That has helped with the weight gain, though I can't tolerate it when I have had an exacerbation.
I should add that I am 5'2" and usually have weighed around 104. I am saying that in case you think that the above diet is impossibly sparse. It is, but not too far from what works when I am my usual weight for someone of my petite frame. This last year I went down to 90 pounds because I could hardly tolerate any food at all. My lungs were really in distress. Now I weigh around 100 lbs, which is not enough, but it's the best I can do without triggering some pulmonary distress. At least I am well-nourished and all my blood tests are good. I average seventy grams of protein a day. I am working on very slowly gaining weight.
I have one good bowel movement a day.
One of the things I really liked about Dr. McShane's video is how she laid out the holistic protocol for taking care of one's airways. Really committing to doing all the things that are helpful since the end of the year has already made a difference! Now I am back to doing my morning yoga religiously and doing deep breathing with it. I looked at some of the positions in physiotherapy for B, and they are the same as some age-old yoga postures that I am familiar with but hadn't been settling into in terms of the breathing. I also take a brisk walk while doing Active Cycle of Breathing/Autogenic Drainage, and just a short session of Arobika b/c it still makes me light-headed, and some dancing too for the aerobic benefit and just b/c I love to dance. My favorite form of exercise. I don't really spit up much sputum, but I intuitively feel that I am doing a better job of keeping the secretions flowing in my airways instead of stagnating.
I just had two really good days--the first in two months where I didn't feel vigilant and fragile most moments of the day. I am hopeful about all these techniques and all the wonderful resources and tips that all the caring people on this site have so generously shared. So grateful to be here.