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.

cila | @cila | May 17, 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

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Hi Linda, glad you found this forum. You can read all the recent post and you will find them very helpful. I will have in my prayer. Cila

REPLY
Jen_b | @jenblalock | May 18, 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 Linda, Checking my blood tests I don't see a measurement of lgG so will write National Jewish and ask about it. Thanks for the suggestion. I am down with pneumonia in both lungs only 3 weeks after stopping meds so something is going on with my immune system.

REPLY
cila | @cila | May 19, 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 Jen, you been going to NJH? I was thinking to call them to make appt. I have been taking the 3 meds for MAC for a year and Wednesday saw my Dr. did CT scan shows that I have new nodules on right lower lung. That means the meds are not working. Told me to increase my zithromax to 500 and do the inhaled amikacin. I just don't know what to do now. Thanks for your info. Cila

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lindaaz | @lindaaz | May 19, 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, I am so sorry to hear that news.....I will be interested to see if your docs think the infusions will help......I saw my ID doc yesterday and he feels I still need them while in treatment......I did hear along the way that many people live a healthy life with low IgG and they only treat the condition if your immune system is not doing its job.....That happened for me last Sept.......I am now in the lower range of normal after 4 infusions.....I go the end of the month.....It takes a few hours and the amount goes by your weight........
Hope you get the answers you need quickly......Waiting is the worst!
Thoughts are with you...
Lindaaz
xoxo
.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 19, 2017

Hi @cila,
It has been awhile. I'm glad to see that you felt you come back to the forum with your questions and news about the meds not working. I'm tagging @tdrell as she gets care at NJH and may be able to answer your questions. I'd also like to bring other members we haven't heard from in a while -- @justjanet @heathert and @imeehaigt

@lindaaz can you tell us a bit more about the infusions? What are they like? What are the side effects? How many more will you have and how often?

REPLY
1 reply
Bidgee | @josephene | 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)
@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

I too have been taking the meds for a year - however latest CXR showed no improvement, although no new lesions! Does this happen with a lot of people? My specialist is now sending me to a TB Specialist, although he said I don't have TB??? I am beginning to wonder if he knows what he is doing?

Tks for your info Bidgee

REPLY
tdrell | @tdrell | May 20, 2017

Jenablock....after spending 7 days as a patient at Njh in january....i can say...dont worry that they would suggest anything that was not the best thing for you .Terrid

REPLY
1 reply
Jen_b | @jenblalock | 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)
@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, Yes, I went to NJH as well as my local NTM specialist. I wanted a second opinion regarding treatment. Their appointments are about two weeks long. You go each day as an outpatient. My insurance covered most of it. Although two opinions can be confusing, I think it is best to be armed with as much information as possible when dealing with this disease and making decisions regarding my treatment. There is so much they really don't know.

REPLY
Jen_b | @jenblalock | May 20, 2017
In reply to @tdrell "Jenablock....after spending 7 days as a patient at Njh in january....i can say...dont worry that they..." + (show)
@tdrell

Jenablock....after spending 7 days as a patient at Njh in january....i can say...dont worry that they would suggest anything that was not the best thing for you .Terrid

Jump to this post

Hi Tdrell, I believe we have chatted at Inspire.com. I did go speak with Dr Huitt this past week and have decided against surgery at this time. We will wait and see if there are exacerbations and visit it again if necessary.

REPLY
Kate1320 | @kate1320 | 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)
@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 am new to this blog as of today. I started reading through posts about a month ago. From your post of Jan 2, 2017 you mention daily lung clearance. What is this? I have asked my Pulmonologist about a Repertory Therapy or anything I could do to help breath during exercising or to help the wheezing. He told me to use my pulmacort inhaler 2 x a day instead of one. Not the answer I was looking for.
I was diagnosed with MAC June 2016 but they suspect that I had it well before 2007. (An x-ray then showed abnormalities but no doctor followed up) I am currently on the cocktail of 3 antibiotic with signs of it getting worse. We are currently waiting for susceptibility test. My main question is what is daily lung clearance?
Thanks,
Kate

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