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Jen_b
@jenblalock

Posts: 168
Joined: Jan 02, 2017

Question regarding lung surgery

Posted by @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?

REPLY

Jen, great news about being NTM clear with medical therapy. Good question about the pros and cons of surgery to remove a cavitary lesion now that your are free of infection. ‘m tagging @kaystrand @jewel8888 and @windwalker on this discussion as I think that they may have some thoughts about surgery and cavitary lesions.

Liked by Jen_b, jewel8888

@colleenyoung

Jen, great news about being NTM clear with medical therapy. Good question about the pros and cons of surgery to remove a cavitary lesion now that your are free of infection. ‘m tagging @kaystrand @jewel8888 and @windwalker on this discussion as I think that they may have some thoughts about surgery and cavitary lesions.

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I am not there yet.
 

@colleenyoung

Jen, great news about being NTM clear with medical therapy. Good question about the pros and cons of surgery to remove a cavitary lesion now that your are free of infection. ‘m tagging @kaystrand @jewel8888 and @windwalker on this discussion as I think that they may have some thoughts about surgery and cavitary lesions.

Jump to this post

I guess my question is: still infected or not, do you have cavitary lesions? If so, has there ever been discussion of surgery?

Hi Jen:
I did have VATS SURGERY 9 years ago for non small cell lung cancer and pulmonary fibrosis. I also was tracked post surgery for a nodule.
In reply to
your question 1-Ask questions 2-knowledge is power even when faced with a concerning diagnosis. 3-work with a doctor you trust and can follow up with. My team is great and welcome my questions. 4-you feel good! yeah! keep moving and enjoy life …one day at a time! It’s great you choose to Connect! linda

@enbalok

Im so very happy you are doing well and free from infection. I was very close to needing fulltime antibiotics, but like you my body finally came along after a year and feeling more like myself. It is great news for you and im sure glad i saw your msg, you have been a great support for me,

Dr. Denlinger, from MUSC was concerned in my case because i did not show signs of shortness of breathh, coughing, but had infection in bladder and lumg cavitary nodule that they couldnt rule out infections, cancerous, or fungal in nature. I was experiencing signs of rash systemic, lethargy, and very feeble. He said he knows it is slowly getting better making him ccertain of noncancerous. My scans were repeated every three months, i had four. drs. also agree with this plan. I certainly understand beeing nervous , but hope you are able to give it a bit more time and it heals.
I am now getting steroid injections to help with my back pain, my legs already seem more useful!!

Please keep me updated, my prayers for you.

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

@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

Welcome Linda, we are glad you found us too! It is recommended that you
read back through old posts to collect info that might help you. There were
recent posts about good timing to take your three meds that might be beneficial
if you should come across difficulties taking them. There is a wealth of
information here, feel free to ask questions about any little (or big) thing. It
is nice to be able to compare notes with each other; not to mention the great
support! Again, welcome aboard! – Terri M.
 

@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, Thanks for the information. I was at National Jewish for two weeks and pretty sure they checked every count possible. They are super thorough but I’ll check through my test results and see. If not, I’ll see if I can have it done.

This is how I started meds also. My body tolerated well. I had problems with Rifampin so they put me on Clofezamine instead. Then later they tried Rifabutin which I tolerated well. It’s very weird and scary at first but you do adjust.

Did the doctors prescribe daily lung clearance for you? Both of my doctors (local and National Jewish) stressed that this was a necessity to stay healthy.

Best to you!

Jen

Liked by tdrell

@jewel8888

@enbalok

Im so very happy you are doing well and free from infection. I was very close to needing fulltime antibiotics, but like you my body finally came along after a year and feeling more like myself. It is great news for you and im sure glad i saw your msg, you have been a great support for me,

Dr. Denlinger, from MUSC was concerned in my case because i did not show signs of shortness of breathh, coughing, but had infection in bladder and lumg cavitary nodule that they couldnt rule out infections, cancerous, or fungal in nature. I was experiencing signs of rash systemic, lethargy, and very feeble. He said he knows it is slowly getting better making him ccertain of noncancerous. My scans were repeated every three months, i had four. drs. also agree with this plan. I certainly understand beeing nervous , but hope you are able to give it a bit more time and it heals.
I am now getting steroid injections to help with my back pain, my legs already seem more useful!!

Please keep me updated, my prayers for you.

Jump to this post

Hi Jewel, I’m so glad that Dr. Denlinger is working with you. I apologize that I don’t remember but did you also say that you see Dr. Flume? And have they done sputum cultures? I’m so happy that he is certain it is noncancerous. That’s always the scary part, isn’t it? I hope you are feeling better with the steroid injections.

Jen

@llwortman

Hi Jen:
I did have VATS SURGERY 9 years ago for non small cell lung cancer and pulmonary fibrosis. I also was tracked post surgery for a nodule.
In reply to
your question 1-Ask questions 2-knowledge is power even when faced with a concerning diagnosis. 3-work with a doctor you trust and can follow up with. My team is great and welcome my questions. 4-you feel good! yeah! keep moving and enjoy life …one day at a time! It’s great you choose to Connect! linda

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Thank you for the advice, Linda. I went out to National Jewish and met with Dr. Huitt. After discussing with her and my local pulmonologist, I decided that lung surgery is not appropriate at this time but will reconsider if I have exacerbations. Thanks again.

Jen

Liked by tdrell

@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, 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

@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, 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.

@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

@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
.

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?

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