1. < MAC & Bronchiectasis

Lobectomy, Cavitary lung lesion and VATS vs Thoracotomy

Posted by amn17 @amn17, Oct 14, 2018

I am in the process of getting a lung resection due to a cavity. I would like to hear about your experiences and tips regarding these surgeries. Risks, recovery, complications, and anything I should be mindful of during the surgery/recovery? And whether if its safe to not proceed with the surgery and leave the cavity? Thank you

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Dec 12, 2021
In reply to @colleenyoung "@bluesplashgirl Carolyn, I'm sorry to hear that you're on your second go around and that now..." + (show)
@colleenyoung

@bluesplashgirl Carolyn, I'm sorry to hear that you're on your second go around and that now have to consider Video-assisted thoracoscopic surgery (VATS). I think @kristiemlove @alleycatkate @angiejohnson @hydrang3a @heathert may have experiences to share.

I can imagine your disappointment and being scared with this turn of events. What questions would you like to ask about VATS?

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Sorry for the late reply. I am also going on Arikayce (jury is still out because of cost and side effects) I just want to talk with someone who has had the procedure and could tell me about their experience and recovery. Thanks Colleen.

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judyhodgern | @judyhodgern | Dec 27, 2021
In reply to @bluesplashgirl "This is my second go around with MAC. The Big 3 did not work and now..." + (show)
@bluesplashgirl

This is my second go around with MAC. The Big 3 did not work and now I have a cavity in my upper right lobe. I will go on Arikace in addition to other antibiotics and my Mayo doc says I need a VATS procedure to wedge out that portion of my lung in 3 - 6 moths (at Mayo). I have dug through the discussions and have not found anyone who has had this procedure. Any information would be great. A bit sad and scared regarding this turn of this disease. Thank you, Carolyn

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My pulmonologist worked on Arikayce experimentation and he put me on it when I started with the Mac it is pretty time-consuming because you have to sterilize the equipment after each dose it also has some minor side effects like hoarseness and sore throat which are supposed to leave after a month I have been on it for three weeks I had been on it before but my kidney blood test went up and they took me off of it for a bit it wasn’t real real high but my pulmonologist feels like this can eradicate the Mac so I’m willing to do this my creatinine blood test is taken every week to try to keep on top of anything that would be detrimental. I may be on it a year or two but if it can eradicate the MAC I’m all for it. My Humana pays the co-pay which is wonderful, I’m going to give it my all and try to get rid of this terrible bug. I give you my sincere hope for an easy road. sincerely Judy
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almap | @almap | Dec 28, 2021
In reply to @heathert "Hi @amn17 Are you on daily meds? I was on 3x week meds for 2 years..." + (show)
@heathert

Hi @amn17 Are you on daily meds? I was on 3x week meds for 2 years without cavity closure, but when I changed to daily meds and Inhaled Amakacin they closed. All the best.

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Can I ask what your dose is for the Amakacin. My mother tolerates it well but only takes it 3 times a week.

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hydrang3a | @hydrang3a | Dec 29, 2021
In reply to @heathert "@amn17 yes I did early on, but diddnt have a cold, it was the Amikacin and..." + (show)
@heathert

@amn17 yes I did early on, but diddnt have a cold, it was the Amikacin and it lasted a few days. Try not to try and talk for a few days and get some Strepfen, which are a throat lozenger with neurofen in them, they are fantastic.Also rince your mouth out after you Inhale. I was also asked not to use Amikacin for 3 days as I could not talk at all. It all worked well and I got most of my voice back after 3 days so started inhaling again. For the next few months I had half a strepfen after I inhaled. It never happened again. All the best. Heather

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Hi Heather…this is my second round of Arikayce. We connected 3 years ago when I as on it the first time. The lose he’s you recommended helped then but now I have what feels like a chest cold…raw irritated lungs …this is only my second week of Arikayce and I am hoping it is in reaction to this strong nebulizer. But also worried it could be something worse. I go nowhere….and am boosted etc. I was set for surgery twice but doctor cancelled twice as my 3cm was slightly improved each time…most recently after 4 months IVs. But this is a long haul and I just want to feel well…..hope to hear some encouragement and ideas about why my chest is raw and I get hot flashes and chills occasionally.

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2 replies
hydrang3a | @hydrang3a | Dec 29, 2021
In reply to @hydrang3a "Hi Heather…this is my second round of Arikayce. We connected 3 years ago when I as..." + (show)
@hydrang3a

Hi Heather…this is my second round of Arikayce. We connected 3 years ago when I as on it the first time. The lose he’s you recommended helped then but now I have what feels like a chest cold…raw irritated lungs …this is only my second week of Arikayce and I am hoping it is in reaction to this strong nebulizer. But also worried it could be something worse. I go nowhere….and am boosted etc. I was set for surgery twice but doctor cancelled twice as my 3cm was slightly improved each time…most recently after 4 months IVs. But this is a long haul and I just want to feel well…..hope to hear some encouragement and ideas about why my chest is raw and I get hot flashes and chills occasionally.

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Heather …I meant losenges…..and my 3cm is my cavity. I have both MAC and m.Abscessis

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heathert | @heathert | Dec 29, 2021
In reply to @hydrang3a "Hi Heather…this is my second round of Arikayce. We connected 3 years ago when I as..." + (show)
@hydrang3a

Hi Heather…this is my second round of Arikayce. We connected 3 years ago when I as on it the first time. The lose he’s you recommended helped then but now I have what feels like a chest cold…raw irritated lungs …this is only my second week of Arikayce and I am hoping it is in reaction to this strong nebulizer. But also worried it could be something worse. I go nowhere….and am boosted etc. I was set for surgery twice but doctor cancelled twice as my 3cm was slightly improved each time…most recently after 4 months IVs. But this is a long haul and I just want to feel well…..hope to hear some encouragement and ideas about why my chest is raw and I get hot flashes and chills occasionally.

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@hydrange3a unfortunately it is a long haul with these bugs but sounds like cavities are getting smaller which is great.The hot flashes can be part of MAC, not sure about the chills, but cavities reducing is positive.

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