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@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm also tagging @katemn and @Paula_MAC2007 here so that they are aware of your husband's story. They each have a lot of experience navigating the health care system and MAC.
You can also read many other stories or post a message here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
If you would like to get a second opinion from Mayo Clinic experts, please call the number at the location most convenient for you. See this webpage: http://mayocl.in/1mtmR63
Replies to "@donnavm I can hear the deep concern in your words. We're here and we're listening. I'm..."
Worried Son, you did not say what the diagnosis was. Is it MAI/MAC? If he has lost 30 lbs .. and was on 3 antibiotics .. sound like it could be. If you read previous posts you will see that it is recommended that you DEFINITELY get a second opinion!
I just googled it .. you are not that far from DUKE UNIVERSITY MEDICAL CENTER. Dr. rRichard Frothingham is the principal investigator of a research laboratory which studies Mycobacterium tuberculosis, the cause of tuberculosis, and Mycobacterium avium.
Campus mail: 909 South Lasalle Street, Ghrb Room 1019, Durham, NC 27710
Phone: (919) 684-5455
This is at least a place to get started! I hope this helps you. This Forum is here to help us all on this shared journey .. I know you want so much to help your Dad. I am sending you both a hug! Katherine
https://medschool.duke.edu/about-us/our-faculty/richard-frothingham
Thx so much and yes lung mac also we go to winston on 19th of this month but i am gonna call this Dr tomorrow and sorry took so long to reply lost my bookmarks ???
@worriedson, Hello (do you have a first name) so glad to see you back! Glad you are following up on the MAC! If you have time .. read through past pages of our Forum .. you will find some great ideas on preparing for an appointment with a MAC doctor .. questions to ask .. educating yourself and your Dad on the disease .. all kinds of things. Please let us know how he does! Sending you both a hug! Katherine
@worriedson - Here's how to find your bookmarks
1. Click your @username (@worriedson). This will take you to your profile page.
2. Click "My Bookmarks" in the right hand column.
Colleen, you are such a smart cookie .. thanks for jumping in! We are lucky to have you as a resource! Katherine
Yes Ma'am it's Terry.
@worriedson, Hi Terry, any news on your Dad .. I've been thinking of him. He is so lucky to have you as a son! Hugs to you both! Katherine
thank you we have a appointment in Winston on 20th with the VA but i am contacting the Dr at Duke tomorrow.
these are my Dad and myself and our cars last year at run to the sun in Myrtle Beach SC since he has been sick and lost weight as you can tell he didnt have to loose now he cant walk any with out being out of breath
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I am a Son of a Vietnam Vet and my hero last year he had back surgery and then came down with Pneumonia then that's where they found a spot ordered a scan in 4 months it had spread into both lungs at a 30 % he has been on three anti for nearly six months and in Oct in no sign of improvement they are gonna stop meds and look at surgery, please help me i am a fourth gen VET and my son now carries the torch in the Marines as a guard on Marine one please don't let this do what a war could not do and that is take my DAD away he was in Nam 3 years, i am a three time deployment VET and a Wounded Warrior, but i would give him a lung to save him. We are in North Carolina near Charlotte.Oh and he's lost 30 Lbs and he dint have that to loose to begin with.