Newly diagnosed, scared. Waiting for pathology reports.

I'm waiting for diagnosis after almost 2 years of abnormal CT's. I'm going to see a NP tomorrow to ask for a referral to Mayo Clinic.
I've just found the group and there seem to be very knowledgeable people who share. You might want to summarize your CT finding and current plan so that people will know if they have advice to offer. Good luck.

Please give us more information. What were you diagnosed with?
You will get lots of help here, and it will calm your fears. We’ve all been there.
If you have MAC and bronchiactasis — it is so foreign and scary when first diagnosed, but you will find most people do really well dealing with it and once you find a good pulmonologist that’s experienced with this disease you will feel more confident and supported.
Read as many posts here as you can.

Thanks for responding. So far diagnosed with MAI ONLY. MY Pulmonary waiting for testing to come in from Bronchoscopy to see what germs it is. He’s referred me to an infectious disease Dr who specializes. That’s all I know at moment. He wants me to use the flutter valve to get mucus out.

I’m waiting for pathology report. Only have MAI. I WISH YOU LUCK AT YOUR DR APPOINTMENT

It helped me to learn every tiny bit of info about this disease. Like, when I first coughed up blood I was terrified but now when it happens, meh…haha.I also optimise my time by eating good organic food, exercising, hiking with the dog, going out with family and friends, reading a lot. For me the pills did not work. I was diagnosed 10 years ago and at 75 I am still going strong! Yes it’s harder to breathe but those are the cards we are dealt. Deal with it, take care of people, enjoy what you have! Look hot! This disease makes us thin, you can wear anything well. Xo

Thanks for your response. You have very inspiring things to say. Do you use the 7% saline nebulizer thing to break up the mucus? You are doing good things to take care of yourself….living life….I appreciate your suggestions? Bon

I am bad at using the
Nebuliser, it’s boring. I do use the flutter thing, and if I do any little aerobic thing, it comes up. Also someone posted a breathing technique, I can’t remember the name of it, but it worked. I watched a utube video of it and it brought up a lot of stuff. I have a bottle by my bed to spit in and something in the car. Gross! Found out bad to swallow mucous, stomach acid doesn’t kill MAC…anyone know differently? I warn my friends and fam that I have to spit, I try to be discreet, they get it. Keep reading everything!
I did get pseudomonas once from too much mucous (it causes disease) but cleared it with super scary floxins .. floxins like to snap your tendons! So I read a ton on floxins and minimised the risk. Read read read. The docs don’t tell you a lot of this stuff! Xo

@healthybon

You've come to the right place. I was diagnosed with bronchiectasis in 1997 (age 55) when I suddenly coughed up blood. About 10 years later I was diagnosed with MAC as well. At first I was terrified by the blood, and terrified by the diagnosis. But over time, and especially with the help I found in this forum, and the good fortune to finally land great doctors who are familiar with both the disease and the infection, I became calm. I never stopped working and retired from full time work at age 60. After that I worked part time up until just recently. I turned 80 last October. The most helpful therapy in my tool box is nebulizing twice a day with 7% sodium chloride. It keeps the phlegm down to a minimum and has significantly reduced exacerbations. I was on the BIG 3 for 2 and a half years and got no results aside from loss of appetite and loss of weight. Now I live with the goal of just slowing down the disease and the infection and focusing on living my life with gratitude and joy. So, my advice is similar to unicorn's: find good doctors who know this stuff and focus on living the life you have with joy!

Nebulzing with 7% saline will help loosen and bring up mucus which is so important. Think of it as lung hygiene. And even if you do not bring up much or any mucus it will help disrupt the biofilm and minimize your infection. I watch something on TV while I nebulize to help pass the time (with headphones so I can hear over the compressor). Also very important to use the Aerobika ("flutter thing") after nebulizing or simultaneously as some people do. Whatever works best for you. And learn about breathing and positional techniques to help bring up mucus. All of this becomes routine and you will get used to it and hopefully find it helps a lot.

Thank you for the good info. I requested a saline script from my dr today.