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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shonney | @shonney | 5 days ago

I had a lymphoma tumor in an isolated area of my lung. When it went into remission, it left me with the gift of Bronchiectasis(BE). It took a year for my BE to emerge after remission, which was quite disappointing because I thought I was in the clear. Apparently late onset of 1-3 years is not uncommon in this circumstance. I started having severe bacterial lung infections, and eventually I narrowed it down to the area of scarring from the tumor. Doctors were slow to on this diagnosis and it resulted in a lot of sickness and probable worsening of the BE before I started a good maintenance regimen.

When I asked the surgeon why he might not operate on someone, he gave me two reasons(I'm sure among others).
1. If the BE were located in multiple areas of the lung, he'd have to remove too much lung.
2. If the underlying cause was likely to result in more BE, it wouldn't be worth it.

I'd say it would be very helpful for you to know the answers to those questions.

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@ling | @wangling | 4 days ago
In reply to @shonney "I had a lymphoma tumor in an isolated area of my lung. When it went into..." + (show)
@shonney

I had a lymphoma tumor in an isolated area of my lung. When it went into remission, it left me with the gift of Bronchiectasis(BE). It took a year for my BE to emerge after remission, which was quite disappointing because I thought I was in the clear. Apparently late onset of 1-3 years is not uncommon in this circumstance. I started having severe bacterial lung infections, and eventually I narrowed it down to the area of scarring from the tumor. Doctors were slow to on this diagnosis and it resulted in a lot of sickness and probable worsening of the BE before I started a good maintenance regimen.

When I asked the surgeon why he might not operate on someone, he gave me two reasons(I'm sure among others).
1. If the BE were located in multiple areas of the lung, he'd have to remove too much lung.
2. If the underlying cause was likely to result in more BE, it wouldn't be worth it.

I'd say it would be very helpful for you to know the answers to those questions.

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Yes, these two are the deciding factors for surgery from what I have read too. You are lucky that your cause of BE is clear, but mine is not. My pulmonologist thinks I might have onset asthma, but my ID doctor said no. When I raised the possibility of surgery a few months ago with my pulmonologist, he laughed, I guess he thought the idea was too extreme. My ID doctor said that I am not eligible for surgery. Since I was not sure either at the time, I did not ask further questions why I was not eligible. I am going to see them both next month, I will discuss it with them again. But I have to make sure if I don't have any underlying conditions to make BE come back. That is why to know the cause of BE in the first place is the crucial part. I read some articles, in the old days, surgery was the treatment of BE, later on the approach is more conservative, so managing like we do nowadays is the most common and conventional approach. There is a saying in Chinese " Long pain is worse than short pain" . To me if you have the opportunity and possibility of taking the short pain, why not? Sure it is not going to kill us, but the day in and day out airway clearance and the constant infections are so exhausting. Best luck with your surgery.
Ling

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