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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
I was surprised to find a person with exactly the same things I have. I have never met anyone who has bronchiectasis, let alone MAC also ! After a lot of nighttime coughing, I had a broncoscopy in 2002 after which I had a diagnosis of bronchiectasis and MAC. My doctor explained that the goal was to avoid a worsening of the disease, I have done pretty well at that, but it has progressed over these 16 or so years. I also have ankylosing spondylosis (arthritis) which is not much fun either. My doctor (s) think this arthritis has stiffened my breathing cartiledge so my lungs don't expand properly.
I will be 80 this year and have been able to live a pretty normal life, even with those diseases. I am an artist, which is a fortunate activity not requiring a lot of movement.
I am now taking Azithromycin and ethambutol for a year in hopes of getting rid of my MAC. I seem to not be adversely affected by the antibiotics.
Anyway, I appreciate knowing there are others in my shoes to talk to.
pkayh
Replies to "I was surprised to find a person with exactly the same things I have. I have..."
Hi @pkayh Welcome and nice to hear your story. Please tell us all with MAC and bronch how you stopped the bronch from worsening as that is what we are all trying to do. Thanks you
I was probably too upbeat in my first post. Since 2 or 3 years my breathing ability and energy has been steadily reduced. My doctors seem to think I am doing OK because my finger oximeter reads 95 - 98, but that is AFTER I have been sitting still in the waiting room ! Any activity is exhausting.
I did not understand how you "thicken your liquid".
@pkayh
@pkayh, Good day. Your words are very familiar. For years, before my diagnosis, I have said even taking a shower is exhausting. I couldn't figure out why. But I've cut back to every other day just to conserve energy.
You asked about how to thicken liquid. There is a powder I think it's called thickit. You can buy it at cvs or other places with a pharmacy. Medical supply stores would carry it too. You just add it to your liquid and stir. I used it in nursing homes for patients with swollowing issues many year's ago.
Becky
Thanks for the information.
Pat
@pkayh you can also order it on the internet. Check for simply thick or thicken up by nestlé but use the CLEAR. I could send you few packet for you to try if I get your address. Send me a private message. Talk to Colleen how to do that.
Thanks for the information.
Pat
@pkayh , Hello Pat! Welcome to our forum. You are in good company here, we all have the bug. I hear you (about the exhaustion). I am 59, my spirit wants to do so much and have ziltch in the way of energy to do it. You've done good girl; to get this far. I find that if I do a little, then rest for 20 mins., do a little more, rest for 20 mins., etc. I eventually get the job done. I, too, am an artist, but find I that I don't have it in me to paint anymore. I tried yesterday, but gave up. I also make jewelry, but even that is a choir anymore. It is hard to explain. You would think that sitting in place and working on these projects would be a breeze.....but I just don't have the creative juices and passion any more. I think my brain has shifted to the left side. I enjoy math, and numbers and day trading. Who knew???! I have to wonder if we all could benefit from accepting a shift in life when chronic illness becomes our reality?
Yes, you sound a lot like me. Do a little, rest, do a little, rest, etc. I am in a stock club, too. I do go once a week to a painting group, but I don't seem to paint at home. The trouble is, even though these activities involve sitting, you always have to get up and get something. It's the same with cooking. Fortunately, my husband does most of the cooking. I have to spend a lot of time with my breathing activities - Vest machine, nebulizer, Acapella, cleaning equipment, exercise (I force myself to go to the Fittness Center, but it exhausts me). But I fear if I don't I will be able to do less and less.
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@pakyh , wow! You made it good you are now eighthy! Keep up the good work ! I appreciate you for sharing with us! I too have Bronchiectasis and had MAC found with my broncoscopy in 2012 but never taken antibiotic. I had a lot of mucus in my throat and find
out it was due to aspiration. Now that I thicken my liquid I don’t have that anymore. I’ve being taking probiotic and in october my bronchoscopy lab test reveal no MAC.