Newly diagnosed after years of chronic coughing. I ended up in the hos

Posted by rlynnh @rlynnh, Aug 1 8:59pm

Diagnosed with Brochiectasis and my pulmonologist downplays it. They gave me antibiotics in the hospital and for a week after I came home. It has been two months now, and I still have chronic cough, plus am weak and very fatigued most of the time. I could fall asleep anytime, anywhere. I have no energy and hate this.
My pulmonologist actually said antibiotics don’t help Bronchiectasis because there is no infection. Everything I read says antibiotics do help. I am at a loss. I need energy and to stop being exhausted all day.
What to do? Anyone else have chronic coughing? Feeling exhausted all the time?
Ideas. I could cry!

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@irenea8

Thanks Irene. At your weight I imagine the 750 mg was too strong. Did you finish the course at and did it help knock back the Pseudo? How many days were you on it? Then they put you on the prophylactic after that? How long have you been on the twice a week dose? Sorry for so many questions but I have chronic pseudo and have been too afraid to try Levo due to side effects (esp kidney and tendons). My BMI is also very low for my height. I hope you are at least very short Irene!

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Yes I am 5 ft . I used to be 5ft. 1 inch but am shrinking like the witch in the Wizard of Oz. Needless to say I have serious thoracic and lumbar back issues as well. I definitely should have drunk more milk. The 750 was because I was soooo sick. I did ok on it actually with only minimal side effects of insomnia and just feeling a little weird, and I am usually very sensitive to drugs. It was a 10 day prescription. My husband can not be on it because of his diabetes and chronic kidney issues, so that’s why he is on Azithromycin. I was put on the 500 twice a week right afterwards. The prescription is for a year. I think my doctors just want to keep abreast of it all. They feel so bad about how things went south for me in 2022, I think they are trying to keep me out of the hospital, and I’m good with that Irene. ( Irene)

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@rlynnh

Thank you! I hope you get better

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I hope you do too! 🙂

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I have asthma, bronchiectasis, and colonized MAC. I keep my asthma under control with 2 inhalers and by getting allergy shots for my chronic rhinitis and allergies. I too have the drainage down the back of my throat. You might consider getting an allergist and be tested for allergies. I take 2 shots once a month for the last 52 years. My asthma has all but disappeared over the years as long as I take my meds and my shots. I do take a Clariten D every day that helps with the sinus issues. The D is a decongestant that will help with those sinus issues. Over the counter at the pharmacist but you have to sign for it. Be careful if you have low blood sugar issues because I forget to eat. It makes you not hungry. Find another Pulmonologist. You don't downplay Bronchiectasis. It is a permanent widening of the tubes inside your lungs, making it even harder to get up mucus. I have coughing fits as well. Have cough drops anywhere you go to ward off coughing fits. Sometimes I steady eat them during the church service. Usually you won't take an antibiotic just because you have Bronchiecasis. Suptum samples will now become a big part in keeping your lungs in good shape and clear. It will take anywhere from 6 days for some bacteria to grow to 6 weeks for MAC. If you have a bacteria, the lab report will tell your dr what antibiotic works best and what the bacteria is resistant to. You need to find an Infectious Disease Dr to work with your Pulmonologist. My Pulmonologist talks to my Infectious Disease Dr and they work together. Infectious Disease Dr will become your best friend. He takes the lead in my case with the other 2 Docs. I only take azithromycin 3x per week for the rest of my life. That is because I have had MAC- Microbacterium Avium Complex. It is bad news . I have only had it one time since 2017 and Dr. immediately started me on Azithromycin to prevent it from rearing its ugly little head. It is colonized in my lungs and can appear at any given time. Thats why the Azithromycin. A lot to deal with but let me say ---- YOU CAN STILL HAVE A WONDERFUL LIFE! I have dealt with this for the last 12 years. I get sick, I take my meds, I get well. It will come in cycles. It is important to get good sleep at night, eat well, and exercise. Moving is your friend with lung issues. Just walk, Yoga, Pilates, lift weights, just move. Moving will up your energy level. You have been through a lot, take your time, rest up, have a positive attitude and then get moving and eating well. You have a lot of things to do and places to go. Wishng you well on this journey, it is not an easy road but I still love my life and you will too again.

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A good rule of thumb is to find the very best doctor to treat your condition. Not all doctors are made equal. And not many doctors are familiar with Brochiectasis. Even is they are vaguely familiar with it, these doctors are not your best bet.....Pam

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@pacathy

I’m so sorry you’re having a tough time of it. I just have a couple minutes now and I know others will respond with great advice, but I’ll give you a couple things you can start reading/thinking about.

Sputum. Monitoring the volume and color is important in bronchiectasis. You want to keep your lungs as clear as possible. Are you producing any? Has it been cultured? It’s the culture results that guide antibiotic therapy.

Airway clearance. Do you do this? It is a key in bronchiectasis management. Many of us use a nebulizer with a bronchodilator or saline, followed by a flutter device then huff coughing to get the sputum out. If you’re able to get it out, it helps with the random coughing. There is a ton of information on this site to search on airway clearance, including a lecture by Dr McSwain that is in recent daily threads.

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I am 77 years old and finally beat MAC after 7 years of nebulizers and antibiotics. My CT scan finely came back ok and I am off the medications. I want to give hope to those still suffering that their is hope even at my age. Good Luck to all!

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