1. < MAC & Bronchiectasis

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.

Mentor
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)
@lindaaz

Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda Knox, posting as lindaaz.....Have you ever had your IgG count checked.????
Along the road to my diagnosis a blood test showed that I had almost no IgG count........something like 250 when the lowest is around 600......I have been on IgG infusions for 5 months..(immunoglobulin) ..It is now just getting into the normal range with an infusion monthly........It is suppose to help you fight infections.....
I haven't had any new infections while doing this.and I feel better......more energy for sure.....but no help with the coughing !!! Some people I have met while doing this give it rave reviews and are now stretching the time between infusions.......Just thought I'd mention it.....
I have just started the 3 drug therapy but starting with one each week to build up to taking all three 3 days a week....Pretty nervous.......
Hope this finds you doing well.....So happy to have found this site.....
Linda az

Jump to this post

Hello Jen, I have always been curious about NJH, are they as good as I hear
in your opinion? -Terri M.
 

REPLY
Mentor
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)
@lindaaz

Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda Knox, posting as lindaaz.....Have you ever had your IgG count checked.????
Along the road to my diagnosis a blood test showed that I had almost no IgG count........something like 250 when the lowest is around 600......I have been on IgG infusions for 5 months..(immunoglobulin) ..It is now just getting into the normal range with an infusion monthly........It is suppose to help you fight infections.....
I haven't had any new infections while doing this.and I feel better......more energy for sure.....but no help with the coughing !!! Some people I have met while doing this give it rave reviews and are now stretching the time between infusions.......Just thought I'd mention it.....
I have just started the 3 drug therapy but starting with one each week to build up to taking all three 3 days a week....Pretty nervous.......
Hope this finds you doing well.....So happy to have found this site.....
Linda az

Jump to this post

Hi Cila, please keep us posted on what you learn. Get other opinions from
good institutions. What we have eludes most doctors, especially on how to treat
it. Not their fault; MAC is a beast!
 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 12, 2017
In reply to @kate1320 "I too have been on 3 meds for 1 year and the sputum comes back negative..." + (show)
@kate1320

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

Jump to this post

@kate1320, Hi Kate. Do you still look at our forum? I noticed that we hadn't heard from you in awhile; am wondering how you are doing? - Terri M.

REPLY
Kay Strand | @kaystrand | Aug 12, 2017

Hi Jen
My story is close to yours. I'm off meds for cavitary MAC after just a year. Mayo doctor said there is a 40% chance of reoccurrence. She also said, if it does come back, she'd want me to consider surgery.
I had many side effects from meds. Off them for 10 days and I'm having stomach aches on and off, usually daily. I think my gut bacteria is messed up and I have yeast (many infections and thrush tongue) I feel like my gut is worse now, and not sure if going off some bacteria rebounds and you don't have good bacteria you need. Waiting it out.
But, I can't imagine surgery if you are ok. My cavity did get very thin walled and looks like a cyst. I'm sure you'll have many questions!
When's the appointment ?
All the best. So happy you are better.
Kay

REPLY
2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 16, 2017

@kaystrand Good morning Kay! I hope you do mind me jumping in on your conversation. I was wondering if the surgery you mentioned is orthoscopic? I heard them talk about that at the convention last spring in D.C. Also, are you taking any probiotics to help replenish the bacteria for your gut? I drink peach flavored Kefir milk every day, but am going to invest in some GOOD live probiotics. I hope your tummy feels better soon! -Hugs

REPLY
Jen_b | @jenblalock | Aug 19, 2017
In reply to @kaystrand "Hi Jen My story is close to yours. I'm off meds for cavitary MAC after just..." + (show)
@kaystrand

Hi Jen
My story is close to yours. I'm off meds for cavitary MAC after just a year. Mayo doctor said there is a 40% chance of reoccurrence. She also said, if it does come back, she'd want me to consider surgery.
I had many side effects from meds. Off them for 10 days and I'm having stomach aches on and off, usually daily. I think my gut bacteria is messed up and I have yeast (many infections and thrush tongue) I feel like my gut is worse now, and not sure if going off some bacteria rebounds and you don't have good bacteria you need. Waiting it out.
But, I can't imagine surgery if you are ok. My cavity did get very thin walled and looks like a cyst. I'm sure you'll have many questions!
When's the appointment ?
All the best. So happy you are better.
Kay

Jump to this post

Hi Kay, we have emailed (Jen Blalock) and are pretty much in the same boat. Thank you for your response. The appointment has come and gone and have decided against surgery for now. If I get reinfected, we will see then. I am assuming I won't get reinfected which I know is just wishful thinking but rather assume I won't than I will. Gotta live this life. xxoo

REPLY
Jen_b | @jenblalock | Aug 28, 2017
In reply to @lindaaz "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..." + (show)
@lindaaz

Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda Knox, posting as lindaaz.....Have you ever had your IgG count checked.????
Along the road to my diagnosis a blood test showed that I had almost no IgG count........something like 250 when the lowest is around 600......I have been on IgG infusions for 5 months..(immunoglobulin) ..It is now just getting into the normal range with an infusion monthly........It is suppose to help you fight infections.....
I haven't had any new infections while doing this.and I feel better......more energy for sure.....but no help with the coughing !!! Some people I have met while doing this give it rave reviews and are now stretching the time between infusions.......Just thought I'd mention it.....
I have just started the 3 drug therapy but starting with one each week to build up to taking all three 3 days a week....Pretty nervous.......
Hope this finds you doing well.....So happy to have found this site.....
Linda az

Jump to this post

Hi Cila, So sorry for the late reply. I just saw this. Yes I went to NJH and I would highly recommend it. You'll have all your questions answered and a much clearer understanding of what's going on. I saw Dr. Huitt and she is very good at responding to questions even after you go home.

REPLY
cila | @cila | Aug 30, 2017
In reply to @lindaaz "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..." + (show)
@lindaaz

Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda Knox, posting as lindaaz.....Have you ever had your IgG count checked.????
Along the road to my diagnosis a blood test showed that I had almost no IgG count........something like 250 when the lowest is around 600......I have been on IgG infusions for 5 months..(immunoglobulin) ..It is now just getting into the normal range with an infusion monthly........It is suppose to help you fight infections.....
I haven't had any new infections while doing this.and I feel better......more energy for sure.....but no help with the coughing !!! Some people I have met while doing this give it rave reviews and are now stretching the time between infusions.......Just thought I'd mention it.....
I have just started the 3 drug therapy but starting with one each week to build up to taking all three 3 days a week....Pretty nervous.......
Hope this finds you doing well.....So happy to have found this site.....
Linda az

Jump to this post

Thank you Jen for the nformation. I have appointment to see Dr. Huitt on the 20th of Sept. and I wiill be there for 2 weeks. Your not taking any meds anymore? Congratulation! I'm so happy for you. Cila

REPLY
Jen_b | @jenblalock | Aug 30, 2017
In reply to @lindaaz "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..." + (show)
@lindaaz

Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda Knox, posting as lindaaz.....Have you ever had your IgG count checked.????
Along the road to my diagnosis a blood test showed that I had almost no IgG count........something like 250 when the lowest is around 600......I have been on IgG infusions for 5 months..(immunoglobulin) ..It is now just getting into the normal range with an infusion monthly........It is suppose to help you fight infections.....
I haven't had any new infections while doing this.and I feel better......more energy for sure.....but no help with the coughing !!! Some people I have met while doing this give it rave reviews and are now stretching the time between infusions.......Just thought I'd mention it.....
I have just started the 3 drug therapy but starting with one each week to build up to taking all three 3 days a week....Pretty nervous.......
Hope this finds you doing well.....So happy to have found this site.....
Linda az

Jump to this post

@cila I've been off meds for a little over 4 months now. SO nice! Thank you and best! Let me know how visit with Dr. Huitt goes.

REPLY
Jen_b | @jenblalock | Sep 4, 2017
In reply to @kaystrand "Hi Jen My story is close to yours. I'm off meds for cavitary MAC after just..." + (show)
@kaystrand

Hi Jen
My story is close to yours. I'm off meds for cavitary MAC after just a year. Mayo doctor said there is a 40% chance of reoccurrence. She also said, if it does come back, she'd want me to consider surgery.
I had many side effects from meds. Off them for 10 days and I'm having stomach aches on and off, usually daily. I think my gut bacteria is messed up and I have yeast (many infections and thrush tongue) I feel like my gut is worse now, and not sure if going off some bacteria rebounds and you don't have good bacteria you need. Waiting it out.
But, I can't imagine surgery if you are ok. My cavity did get very thin walled and looks like a cyst. I'm sure you'll have many questions!
When's the appointment ?
All the best. So happy you are better.
Kay

Jump to this post

Hi Kay, Dr. Huitt at NJH said our but bacteria would be messed up forever after having been on all those antibiotics for so long. I've been off for 4 months now and still take my probiotics and make my own yogurt that I try either eat or add to a protein drink daily. By try, I mean that I usually do but sometimes I get busy and forget. 🙂 I hope your stomach issues clear up!

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