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Ideas to help with respiratory issues
Respiratory comments to edit for weg forum
I don't have Wegeners, I have severe resistant asthma and bronchiectasis, but I am thinking if your Wegeners has a respiratory component, my experiences might help. I joined this group when I was misdiagnosed with Wegeners several years ago. Alysia Weggie suggested I post my thoughts here. They are assorted comments I made to a Weggie friend's facebook page. She suffers from the kind of scary breathing problems that I do. I have made several discoveries that have lowered the number if exacerbations and have increased my pulmonary function from a low of 38%, 70% at best to my latest reading of 98%.
The comments below are a bit disjointed and repetitive. My apologies. I am very busy with a hospitalized relative. No time to edit. I am happy to answer questions, share recipes or info anytime. It gives me something to do while Hospital sitting.
Fasten your seat belts...here goes.
Going grain free has reduced my mucus production immensely. There are LOTS of substitutes you can make. I still have a little sugar in things like ice cream, but I sub palm sugar or honey in sweets that I make with fruit or with almond flour. I have a great recipe for almond flour cinnamon rolls, and almond flour thumbprint cookies. I have lots of ideas and recipes I can share if you ever want to try it. I went from 9 SERIOUS respiratory exacerbations a year to 3 mild ones. When I say serious, I mean "can just manage to get from my chair to the bathroom, 60 mg of prednisone and sometimes hospital" bad. I am SO MUCH better now. And cravings were gone within a month. Down to 8 mg of pred and hoping to get off completely within the next year.
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Gosh. I can sure relate to that!! I even used to fall for the "you don't look sick...don't be a hypochondriac" attitude myself. I used to shrug off my illness. Once I dismissed my symptoms to my pcp saying "it could be worse". She said "don't make light of this. It is pretty bad and we need to do something about it now". She is the one who tracked down the problem.
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I am not totally sugar free. But cutting down and subbing other natural sweeteners seems to help.
I absolutely know exactly what you are going through and how very scary it is. Do you have a nebulizer machine? I have a portable one for emergencies but if gone overnight I bring my electric one because it is much better at getting neb meds into my lungs quickly. I have learned that if I find it difficult to breathe within two hours of treatment I MUST get to the emergency room immediately. During one of my hospital stays, a respiratory therapist suggested Hypertonic Saline which comes in single dose ampules that are used in the nebulizer. If I am experiencing wheezing or chest tightness, I use DuoNeb first followed by the hypertonic saline. Right now i have discovered using the hypertonic saline twice a day, every day is VERY beneficial to me. I was feeling very good and as if the mucus was virtually gone, but thought I would see what happened if I used it. As it turned out, no matter how clear I THINK I am, the saline will ALWAYS bring gunk up. Keeping it coming up has got to help with avoiding infections.
My insurance will not cover the saline nebs and they are a little expensive but worth every penny.
i will copy/paste a standard post I have for folks that ask. Some of it will repeat this info, but there are other ideas there that might be useful.
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Here is my generic description if what I do to deal with my breathing issues. #3 is info not in my previous replies.
I have adult onset bronchiectasis and chronic rhino-sinusitis, but I can tell you what has helped me the most. I discovered most of the things from groups like this. There is an online forum called Brochiectasis R Us that is very helpful. Here are the things that have helped me the most:
1. This one is hard...but has reduced my exacerbations from 9 very severe downturns in 12 months to 3 MILD exacerbations in the past 10 months. I went on an elimination diet for 10 days under my GP's care. The diet eliminates ALL grains, ALL dairy, starchy veggies, all packaged/processed foods, peanut butter, legumes, and all fruit except berries. Really hard. Then I added back each item slowly. For me the culprit was grains. As soon as I ate a cookie, I immediately broke out in a head to toe red burning rash, followed by breathing so bad, I needed 60 mg of prednisone. There are lots of good substitutes for grains...so it is not nearly as bad as it sounds. I can help you with ideas anytime you need it.
2. Using hypersaline solution in my electric nebulizer. Fantastic for bringing up gunk out of the lungs. I am now using it twice a day even when feeling clear.
3. I started taking my Zyrtek in the morning instead of at night, and taking a benadryl at bedtime. I sleep much better and wake up less clogged. I also have had great success with the following supplement. It is very well regarded by doctors, but they tend to forget about it. It is even stocked routinely in hospitals,because it is a standard treatment for tylenol overdose. You have to give it a couple of months to work,and you might have to experiment with dosage. I started at three capsules a day, but found that dried me up too much. Two a day seems to thin out the mucus, but still keep things flowing normally.
https://www.amazon.com/NOW-Foods-NAC...9%3ANow+Foodsl
Jacquie (aka Lifelong Booknut)
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