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@schoolgirl

Thank you all for your informative posts! I'm impressed with how courageous so many of you have been as you've navigated this disease.

I am a 64 year old female and new to bronchiectasis, having been diagnosed in November 2024 after three years of increasingly consistent bouts of pneumonia and near constant rounds of antibiotics. My doctors started the diagnosis with x-rays, then multiple CT-scans, and finally a bronchoscopy. The bronchoscopy also confirmed aspergillus, so I am now taking Voriconazole for three months. So far, this seems to have halted the cycle of unending pneumonia infections and thankfully my weight loss has tapered off. I hope that I don't have to move to infusions as so many of you brave folks have done! I guess I'm a wimp but I feel pretty scared by all of this.

I aced a PFT test taken pre-aspergillus, so the infectious disease doc gave me a positive prognosis since I am otherwise generally healthy and have never smoked. I do have celiac disease, which is an autoimmune disorder, so my gut is constantly inflamed despite 10+ years of a gluten-free diet. In fact, my inflammation numbers were off the charts when they ran the bloodwork. I wonder if I might have other undiagnosed autoimmune issues.

So far I am not doing any of the airway clearance strategies but I want to be proactive about keeping infections at bay. Your comments and suggestions have been very helpful! My GP gave me Ipratropium Bromide .5 mg and Albuterol Sulfate 3 mg. Is this similar to what your doctors have prescribed for your nebulizers?

I've never been diagnosed with asthma or allergies but I've always had major coughing spells and lots of upper respiratory infections throughout my life. I plan to ask my GP for an allergy or asthma test so I can avoid triggers if any exist. Does this sound like a good idea?

Thanks again to all of you for sharing your stories! Most people have never heard of bronchiectasis, so it helps to know that there are others out there who understand!

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Replies to "Thank you all for your informative posts! I'm impressed with how courageous so many of you..."

Hi. I agree there are a lot of courageous people on here, and I think you’re one of them.

You’re not a wimp. It’s normal to be scared. It sounds like you’re forging ahead in spite of it all and are evidently a strong person given all that you’ve been through. Not to mention, you’re seeking help and I think that is very brave.

Since I’m new to all this too, I think others might have more helpful responses, but I’ll add my 2 cents.

My local pulmonologist has me on albuterol sulfate 2.5 mg. I think an allergy test could be helpful. I have had mixed results with these tests. I took my first one probably more than 10 years ago and came up with all sorts of allergies. It was a scratch test. The one I took last year when I started out on this journey showed absolutely no allergies. I did both scratch and blood. Take that for what it’s worth. There may be other tests out there that are more informative/reliable.

Good luck as you go forward, and I hope you continue to see improvements and keep exacerbations at bay.

I am curious about whether the CT scans and bronchoscope showed any evidence other lung damage or infection? If so, it is quite possibly time to seek out a pulmonologist knowledgeable in treating bronchiectasis, aspergillus and the other infections you may be prone to.

In addition to nebbing as needed, airway clearance I one of the pillars of staying healthy when you have bronchiectasis. The fact that they haven't started you on airway clearance suggests your current docs are maybe not so familiar with it - not surprising because in spite of all the discussion here, it is a quite rare disease and often goes unrecognized for years.

I'm glad you are feeling a little better. Have you also been told you have MAC, MAI or pseudomonas?