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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heathert | @heathert | Oct 17, 2018
In reply to @hydrang3a "@ heather.....Encouraged to hear from someone whose cavity closed. How long did it take? I’m on..." + (show)
@hydrang3a

@ heather.....Encouraged to hear from someone whose cavity closed. How long did it take? I’m on daily meds and inhaled amikacin and I am so encouraged by your response. Thank you! Now they have an improved version of inhaled amikacin made available earlier this month. Has anyone started using it?

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@hydrang3a The new Amakacin is the one I was on (I was in the trial for it). I was on the Amakacin and weekly meds for a year when my cavities closed, I was so thankful that I worked, after being on 3x weekly meds which diddnt do much at all for me. Not sure if it was the weekly meds or the Amikacin that did it(I feel it was the Amikacin as the 3x weekly meds diddnt do much), but the Inhaled Amikacin was so tolerable its worth a try.

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heathert | @heathert | Oct 17, 2018
In reply to @amn17 "@heathert Yes I am on daily meds. Recently added clofazimine and Amikacin inhaled too." + (show)
@amn17

@heathert Yes I am on daily meds. Recently added clofazimine and Amikacin inhaled too.

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@amn17 I feel that it was the Amikacin that worked for me, as the 3x weekly meds did nothing much so why would the daily? I hope the Amikacin works for you, if you need any help with taking it dont hesiate to ask me. Please let us know how you go with your cavity.

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1 reply
amn17 | @amn17 | Oct 18, 2018
In reply to @tdrell "@Amn17...check out Njh website at nationaljewish.org.... you will find their phone numbers there as well as..." + (show)
@tdrell

@amn17...check out Njh website at nationaljewish.org.... you will find their phone numbers there as well as a way to communicate with them online if you don’t have a phone plan to call into USA. I have no idea what the cost of their care would be.....my guess is that it would not be unmanageable....payment could be worked out.if you read their history, they did not charge at all til after 1968.
The quality of care is superior....I should mention that although I am now 100% a consumer.....I was an active RN for 50 years in a number of settings and cities.
The advantage of seeing their Mycobacterium specialists is that they have seen thousands of clients with the condition....the same for radiologists who read your CAT scans....who by the way are certified in reading Thoracic CAT scans.
Their Labs are what is called a reference Lab....again specialized in culturing the NTM specimens.
The Surgeon who does ,mostly VAT lobectomies has done hundreds....With minimal issues.
They will not require you to automatically repeat tests.....if you bring them / have them sent....that helps with cost.
They will work with your local doctors.....for continuity of care.
They are thorough....although I was set up to be seen by the NTM specialists....they determined I needed to be seen by a pulmonologist also...on my initial visit there....that Dr in turn ordered a test to confirm the diagnosis I had had for 30 years...of Asthma. And I did not have Asthma.
They are constantly sharing the findings with you....very open communication.
They have annual workshops on NTM for Physicians then one day for Patients and family. You can watch these on you tube ....type in National jewish NTM workshops....they have not taped the past 2 years....but previous ones are on so you can see some of their doctors and other speakers.
Ask any other questions...Terri aka tdrell

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@tdrell Thank you so much for your response Terri. Helpful information. I'll keep you posted.

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amn17 | @amn17 | Oct 18, 2018
In reply to @megan123 "Amn17. Hi there...I’m from Toronto and you are so right about our health care system..We can..." + (show)
@megan123

Amn17. Hi there...I’m from Toronto and you are so right about our health care system..We can only access 60 percent of drugs that Mayo gets...I to have a cavity app 1 1/2 centimetres and have been on the big 3 for 6 months. CT scan next month. hopefully cavity is smaller..what hospital are you at..I’m at St Mike’s and Toronto Western

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@megan123 Hi Jennifer, I'm in Vancouver. Things are handled differently here in BC however, I go to Vancouver General Hospital. My cavity is about 5cm so it has be removed by surgery. Too big to close on its own. When were you diagnosed?

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1 reply
amn17 | @amn17 | Oct 18, 2018
In reply to @heathert "@amn17 I feel that it was the Amikacin that worked for me, as the 3x weekly..." + (show)
@heathert

@amn17 I feel that it was the Amikacin that worked for me, as the 3x weekly meds did nothing much so why would the daily? I hope the Amikacin works for you, if you need any help with taking it dont hesiate to ask me. Please let us know how you go with your cavity.

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@heathert Thank you! I am using the inhale Amikacin and I agree its tolerable compare to IV. However I recently got a cold which made me more sick and now I have voice hoarseness and sore throat. Not sure if its the Amakacin or the cold. Have you ever experienced that?

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heathert | @heathert | Oct 18, 2018

@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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1 reply
Jennifer | @megan123 | Oct 18, 2018
In reply to @amn17 "@megan123 Hi Jennifer, I'm in Vancouver. Things are handled differently here in BC however, I go..." + (show)
@amn17

@megan123 Hi Jennifer, I'm in Vancouver. Things are handled differently here in BC however, I go to Vancouver General Hospital. My cavity is about 5cm so it has be removed by surgery. Too big to close on its own. When were you diagnosed?

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@amn17. hi there... I was diagnosed app 1 1/2 years ago...

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Nov 10, 2021

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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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 13, 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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@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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2 replies
heathert | @heathert | Nov 13, 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 but I am unable to help with this , I havnt had this surgery. Take care ,Heather

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