1. < MAC & Bronchiectasis

In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Aug 17, 2019

I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot...have been doing it for years. This year we had a new mulch supplier...... I could use a pep talk, if anyone has that for this!!

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vetnyregr | @vetnyregr | Sep 3, 2019
In reply to @catalin "Thought to share my experience with those who are treated with 3 antibiotics. Recently it has..." + (show)
@catalin

Thought to share my experience with those who are treated with 3 antibiotics. Recently it has been confirmed that my vision loss was due to a year treatment of 3 antibiotics. The culprit was Ethambutol. My vision gets a bit improvement about two months after stopping the treatment. Good to know that the process seems reversible. During treatment I have been monitored by a ophthalmologist, the problem was discovered at ~11 month treatment. Please note that not everyone will have this problem, please discuss with your doctor about this issue.

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I am also on this regime. How did you notice your vision loss?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 3, 2019
In reply to @sylvermoon8 "Thank you for telling me this. I was told no gardening, I figured it just meant..." + (show)
@sylvermoon8

Thank you for telling me this. I was told no gardening, I figured it just meant no digging. I was going to go outside and trim bushes. Now I won’t!

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My pulmonologist and ID doc both recommend caution. Here's how i do it with their blessing. Long sleeves and legs, washable gloves and N95 mask. Avoid windy dusty days. Upon coming inside, remove and launder all clothing, shower and wash hair. Also, remember that whatever is in the yard and garden is in your house if shoes are worn inside. For many years, all in our home have replaced outdoor footwear with slippers when coming in. We wipe the dog's feet with a frequently washed towel.

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heathert | @heathert | Sep 3, 2019
In reply to @vetnyregr "Has anyone had a hole in their lung due to MAC. I do. I was wondering..." + (show)
@vetnyregr

Has anyone had a hole in their lung due to MAC. I do. I was wondering at what point do they sew it up or? I am so tired of amocacin infusions and my 3 oral antibiotics. It is so restrictive!

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@vetnyregr I had 3 cavities in my lungs,they closed over after time on the big 3 and inhaled Amikacin. The big 3 are very restrictive, I have been on them around 5 years, I am about to go off in a few months, yay.

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1 reply
vetnyregr | @vetnyregr | Sep 4, 2019
In reply to @heathert "@vetnyregr I had 3 cavities in my lungs,they closed over after time on the big 3..." + (show)
@heathert

@vetnyregr I had 3 cavities in my lungs,they closed over after time on the big 3 and inhaled Amikacin. The big 3 are very restrictive, I have been on them around 5 years, I am about to go off in a few months, yay.

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5 years!!!!!!!!! Did you ever take Amikacin infused? That is what I'm on besides Zithromycin, Ethambutol and Rifadin. I am prepared for a year and a half but 5, Oh MY! I know everyone is different. So glad your cavities closed on their own. I pray mine does the same!

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heathert | @heathert | Sep 4, 2019

@vetnyregr My Dr said she wrongly put me on them daily for 2 years, it should have been daily for cavities, she had not told me I had cavities for 2 years or I could have corrected her. Yes its a very long time on the big 3 but only a year on Amikacin inhaled, no I haven't had infused at all. My cavities did close on their own but they left a small scar, which I guess would also happen with surgery. I hope yours take alot less time, and hope you are on daily! The big three and Amikacin is a good combination.

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1 reply
kp5450121 | @kp5450121 | Sep 5, 2019

Hi ,I am Karen Harrell and I went from doctor to doctor trying to find out why I could not breath and they all asked if I was a smoker ,which is no ,no drinking ,no smoking meth nothing .well at 44 I need a lung replacement of both,and if not I have 15months to live. Because of BOOP AND COP. I had this for 2 years and it scared my lungs to where they are hard. This has hit me so hard I could just cuss,but I'm not giving up. I want you to BELIEVE god has something for us. I don't feel my fight is over,I want to live and scared to death.

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1 reply
alleycatkate | @alleycatkate | Sep 5, 2019

@kp5450121 Hi Karen, I read your post about BOOP & COP. I had to look that up as I had never heard of either. I can understand you being scared and very upset with this diagnosis. You seem to have a strong makeup and be full of fight... I hope your strength and trust in God can pull you through and give comfort. Are you on a list for a transplant? Do they give you an idea of a timeframe for that? I am wishing you the very best. Please let us all know how you are progressing and please know that we are all here to support you. Please try to stay strong and positive. Kate

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kp5450121 | @kp5450121 | Sep 5, 2019

Alleycatkate
I got 15 months til heart failure or new set of lungs and no. THE GREAT MAYO SENT A LETTER IN MAIL DENIED. I gonna fight to get my lung transplant even if I go somewhere else. I was hit real fast with this and did not process it but its so darn hard to breath and I am on very high oxygen,I miss alot

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2 replies
Jennifer | @megan123 | Sep 6, 2019
In reply to @kp5450121 "Alleycatkate I got 15 months til heart failure or new set of lungs and no. THE..." + (show)
@kp5450121

Alleycatkate
I got 15 months til heart failure or new set of lungs and no. THE GREAT MAYO SENT A LETTER IN MAIL DENIED. I gonna fight to get my lung transplant even if I go somewhere else. I was hit real fast with this and did not process it but its so darn hard to breath and I am on very high oxygen,I miss alot

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🙏🏻💕

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alleycatkate | @alleycatkate | Sep 6, 2019
In reply to @kp5450121 "Alleycatkate I got 15 months til heart failure or new set of lungs and no. THE..." + (show)
@kp5450121

Alleycatkate
I got 15 months til heart failure or new set of lungs and no. THE GREAT MAYO SENT A LETTER IN MAIL DENIED. I gonna fight to get my lung transplant even if I go somewhere else. I was hit real fast with this and did not process it but its so darn hard to breath and I am on very high oxygen,I miss alot

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@kp5450121 Oh Boy!! Sorry to hear this. You are on a MAC/Brochicstatis site so I do not know if folks here are familiar with your issue. I am hoping someone here may be and will jump in with some thoughts. Also what other hospitals have you tried? Is your insurance limiting you or was it just MAYO? @windwalker ...any thoughts?

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