1. < MAC & Bronchiectasis

Cut it out!

Posted by shonney @shonney, Mar 11 1:31pm

Well, you know what I'm talking about. After almost 6 months out of the last 12 with exacerbations, I'm looking widely for solutions. I'm getting a consultation with a Thoracic surgeon to investigate removing the BE surgically. It's localized to my Right Upper Lobe(RUL) and therefore might be "easy" to remove that lobe, which accounts for about 18-20% of lung capacity. Has anyone else explored this or done it? What were your findings?

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Rick | @rstel7272 | Mar 12 7:35am

Yes, I've been on the fence for 2 1/2 years for RUL removal but more so for cavity and aspergillus.

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@ling | @wangling | Mar 12 11:55am

I have been pondering about the idea, simply because I am so tired of dealing with it on a daily basis. But is it going to cure BE even cutting the infection part out? Is it going to cause more potential risks and damages in the long term? My personal understanding is that surgery would be the last resort.
But I do think age is a factor too, if you are young, you probably have a better chance to recover.

Ling

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shonney | @shonney | Mar 12 1:48pm
In reply to @wangling "I have been pondering about the idea, simply because I am so tired of dealing with..." + (show)
@wangling

I have been pondering about the idea, simply because I am so tired of dealing with it on a daily basis. But is it going to cure BE even cutting the infection part out? Is it going to cause more potential risks and damages in the long term? My personal understanding is that surgery would be the last resort.
But I do think age is a factor too, if you are young, you probably have a better chance to recover.

Ling

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I wrote you a long reply but my computer erased it. In short, my condition was caused by a one time tumor and is likely not to reoccur. Other people may have underlying conditions that cause the return of BE even if they cut out part of it. I'm young and have a kid to support, hence I'm not taking this being sick all the time very well, I've got to take action, and this is something I'm exploring while doing all the standard therapies as well.

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shonney | @shonney | Mar 12 1:50pm
In reply to @rstel7272 "Yes, I've been on the fence for 2 1/2 years for RUL removal but more so..." + (show)
@rstel7272

Yes, I've been on the fence for 2 1/2 years for RUL removal but more so for cavity and aspergillus.

Jump to this post

Have you had any discussions or consultations that helped you frame your situation and weigh your options? If so, I'd love to hear what you have to share.

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@ling | @wangling | Mar 12 3:46pm
In reply to @shonney "I wrote you a long reply but my computer erased it. In short, my condition was..." + (show)
@shonney

I wrote you a long reply but my computer erased it. In short, my condition was caused by a one time tumor and is likely not to reoccur. Other people may have underlying conditions that cause the return of BE even if they cut out part of it. I'm young and have a kid to support, hence I'm not taking this being sick all the time very well, I've got to take action, and this is something I'm exploring while doing all the standard therapies as well.

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I seem to remember that some people in this group had surgery when they were young. They could live a normal life. You have good reasons to do it, you might want to consult with different doctors to get more insights.

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Rick | @rstel7272 | Mar 12 6:10pm
In reply to @shonney "Have you had any discussions or consultations that helped you frame your situation and weigh your..." + (show)
@shonney

Have you had any discussions or consultations that helped you frame your situation and weigh your options? If so, I'd love to hear what you have to share.

Jump to this post

Shonney, a bit of a long story but NJH wanted me on Amikacin IV for 6 weeks prior to surgery.
My first experience with Amikacin IV put me in the ED and a wheelchair with dizziness for weeks. I refused the Amikacin which perplexed the Dr's. I went on to find another surgeon who could do the surgery without Amikacin. Each Dr I saw started to question the need for surgery as I was getting better each week. So it's on hold for now. Rick

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shonney | @shonney | 2 days ago

Update: I'm going ahead with the surgery. I have a good surgeon who uses Robot assisted tech. April 18 is surgery day. I'll try and let ya'll know how it goes.

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1 reply
@ling | @wangling | 2 days ago
In reply to @shonney "Update: I'm going ahead with the surgery. I have a good surgeon who uses Robot assisted..." + (show)
@shonney

Update: I'm going ahead with the surgery. I have a good surgeon who uses Robot assisted tech. April 18 is surgery day. I'll try and let ya'll know how it goes.

Jump to this post

Best luck withthe surgery, shonney!
Where are you going to have the surgery?

Ling

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shonney | @shonney | 1 day ago

Multicare General Hospital, Tacoma

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