Question regarding lung surgery

Posted by Jen_b @jenblalock, Apr 18, 2017

I just had my 4th CT Scan and the results showed my 2 cavitary lesions unchanged from the last scan 4 months ago. I am now free of NTM disease and have been for a year. I feel good. No coughing at all and I'll be stopping meds in 9 days. I do not suffer from shortness of breath and feel perfectly normal (except side effects from meds). I sent the CT Scan report to my doctor at NJH and she wants me to meet with CT Surgeon during my next visit with her (May 1). I think she might be thinking of surgery to remove one of the lesions. I've read a lot of articles and it seems that surgery is indicated when NTM medical therapy has failed which is not my case at all. Medication was very successful and my sputums were negative almost immediately. I have discussed this with my local pulmonary doc in the past and he feels surgery would be too drastic just to possibly prevent another infection.

My question is has anyone heard of removing part of a lung that has a cavitary lesion to prevent another infection when the patient was otherwise healthy?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

lindaaz | @lindaaz | May 20, 2017

In reply to @colleenyoung "Hi @cila, It has been awhile. I'm glad to see that you felt you come back..." + (show)

Hi, had a hard time finding this again....(.Az. is three hours earlier than the east coast now...).
.The infusions are done at the cancer center.......Everyone there is attached to an IV for whatever their problem is .....Chemo included.....My treatment lasts about 31/2 hours......It goes in the hand vein.....It's not painful......They determine the amount by your weight......If you are small it takes longer......so for me it is longer.......I usually don't have any side effects after.....maybe tired for a while....
They normal range is 694-1618mg/dl......I started around 250-300....I am now at 754...I have that reading after 5 sessions......They want me to be at 1000......If I get there they may stretch out the time....Now I do it every month......I don't think you get to stop because you don't make it yourself.....so ii will just go back to the low point.....back to square one!
I am just in the beginning of the antibiotics so do not know how everything is going to work out....I start the Rifampin Monday......and I am also on
coumadin which brings its own set of worries,,,,,,Has anyone else been on blood thinner while doing the therapy?????
Hope this clears up the infusion info.....
lindaaz

Jamie Olson | @jamienolson | May 20, 2017

In reply to @lindaaz "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..." + (show)

Hi @kate1320! We're happy to have you join this conversation. I would like to officially welcome you to Mayo Clinic Connect. After a month of reading, I'm sure you have gotten a peek at how we operate on this forum. I'm glad you have decided to join in on community discussion. 🙂

@jenblalock will have to answer your question on daily lung clearance.

Can you tell us- how did you cope with symptoms all those years without a diagnosis?

Jen_b | @jenblalock | May 21, 2017

In reply to @lindaaz "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..." + (show)

Hi Kate, It's basically getting the mucus out of your lungs. If you have bronchiectasis your lungs are not efficient at clearing mucus on their own. That is one way that they get infected. I use an Aerobika (link regarding this) https://www.nationaljewish.org/treatment-programs/medications/lung-diseases/treatments/using-the-aerobika. Hope that helps. I would ask your doctor again to see a respiratory therapist.

I was diagnosed January 2016 and am now MAC free and no longer on meds. Daily lung clearance is forever however in order to try to stay healthy.

Best to you. Jen

tdrell | @tdrell | May 22, 2017

In reply to @lindaaz "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..." + (show)

Cilia....dont hesitate....pick up tthe phone or go on NJH website and begin the process to be evaluated there. TErriD

cila | @cila | May 22, 2017

In reply to @lindaaz "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..." + (show)

Thank you Terry. I have to call my insurance if they will cover it.

Kate1320 | @kate1320 | May 25, 2017

I too have been on 3 meds for 1 year and the sputum comes back negative but the CT and xrays show the cavities and other area not changing or getting worse. I had a scope put in my lungs to take biopsies and fluid samples. They came back positive after 9 days for MAC. So they sent the cultures to NJH for a susceptibility test and found out 2 of the drugs I was taking were resistant when tested separately and only moderate together. So now they are talking either trying Clofazimine or surgery. My local ID doc is sending all my notes and scans to NJH for second opinion. Has anyone else taken Clofazimine? It is going to take 1 month to get the drug as you can only get it from the FDA because it is not on the market anymore but it is sometimes used for TB when nothing else works.
Kate

Colleen Young, Connect Director | @colleenyoung | May 26, 2017

In reply to @kate1320 "I too have been on 3 meds for 1 year and the sputum comes back negative..." + (show)

Hi Kate, I'm tagging @e345l who has also been on clofazimine. She may be able to share her experience with the drug.

Terri Martin, Volunteer Mentor | @windwalker | May 26, 2017

In reply to @kate1320 "I too have been on 3 meds for 1 year and the sputum comes back negative..." + (show)

Hello Kate, Seems you are lucky to get 'off lable' meds. As for the
cavities etc., they may be permanent damage depending on what is going on in
your lungs. Having your cultures sent off to NJH is a good thing. I believe they
know what they are doing up there. Please keep us posted on your progress. Hugs
- Terri M.

Terri Martin, Volunteer Mentor | @windwalker | May 26, 2017

In reply to @kate1320 "I too have been on 3 meds for 1 year and the sputum comes back negative..." + (show)

I'd be curious to learn more about that drug also. It came up at the NTM
Conference in D.C.

Terri Martin, Volunteer Mentor | @windwalker | May 26, 2017

In reply to @lindaaz "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..." + (show)

Hello J., I would def seek another opinion, preferably from a research
institution like the Mayo or NJH, or NHI. Trust me, you do not want to
trust your lungs to just anyone; they are vital organs!

View More View Less

Please sign in or register to post a reply.