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Question regarding lung surgery

MAC & Bronchiectasis | Last Active: Apr 9, 2021 | Replies (60)

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@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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Replies to "Hello Jen, I am new to the posts. I just signed up yesterday.....My name is Linda..."

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

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

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

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!
 

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

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!
 

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.

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

@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.

what drugs are you on? I am scheduled to begin the clofazamine and am nervous...