Cut it out!

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.

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

Hi @shonney. How did your surgery go? Will you have a long recovery period? Wishing you all the best of luck.

Hello fellow health warriors,

Was I anxious before surgery, hell yeah.

My surgery appears to have been successful, of course I have weeks of recovery before I say that conclusively. I haven't had to nebulize or wear the vest since. I'm not coughing phlegm or having that feeling I can't take a deep breath without coughing, hopefully I'm done with continuous antibiotics.

They were able to remove the BE section of my Right Upper Lobe and even leave a little bit of it. The surgery was complicated by my lung attaching to the sack is in. Instead of taking an hour, it took an hour and one half. They took a picture of the inside of my chest cavity. I could see my lung half way cut out, my rib cage, and surprisingly black lines, that I wouldn't have believed, the carbon build up that is "black lung". (It's not nearly as bad as I've seen in medical pictures, but it is real.) I went home to my family the next day, 30hrs from when I arrived.

It will take more recovery time before I can take real deep breaths and give it the real test of climbing a mountain. I'll write again and give an update when I have more to report.

Congrats on having the surgery in the rear view mirror! 90 minute surgery is pretty quick in the scheme of things. Hope things continue to go well with your recovery. Who did your surgery?

It was Dr. Krishnadasan. I am very pleased with his knowledge, communication, and obviously his work. He occasionally works at other hospitals up and down the west coast. He's very respected and a teacher of his methodology.

Hope all goes well and have a speedy recovery. You are a real warrior.
Take care!
Ling

Well I did it.!My Right Upper Lung was robot assisted surgically removed. It went well, but recovery took a lot longer that I expected, 3 months instead of 1. I found out 6 months later that they broke my rib while prying them apart for access. My lung congestion was improved by 80%, but I still was 20% below where I expected to be. I finally went back to my pulmonologist thinking that there was something we were missing. I started a LABA+ICS inhaler and my lungs cleared up immediately because, it seems I developed asthma but it was masked by the BE. Then my kid got a lung cold and I got it too. It turns out it was another bacterial lung infection that my body had trouble fending off. It lasted 2 weeks and the I took antibiotics and it went away. It was demoralizing for me because, I hoped to be done with bacterial lung infections. At the moment I'd say I'm 95% of where I'd like to be regarding lung health. I'm also working with an immunologist to figure out why my immune system is still low functioning from the Cancer Immunotherapy.

Bit by bit I'm putting myself back together the best I can. All in all, it was a good choice for me to "Cut it out!", but it wasn't the home run I'd hoped for.

Wishing the best to everyone dealing with BE,
-Shonney

@shonney For some reason your April post popped up today. Would you please update me on how the surgery went and who was your doctor? Thank you.

@shonney Thanks for the update! Helpful info. I hope you continue to improve.