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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
my husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley him die. he had so much fluid in his right lung he had to stay sitting up,Finally he was take to hospital where they inserted tubes to drain the fluid. He came home 2014 after 6 months he begin slowly to get sick . he receives medical care thru the VA ,his primary care doctor would treat each symptom with a pill, he went from 200lbs too 136 when his lung Dr. ordered a sputum test it was then he said he has MAI.we started the 3 antibiotics they said he would take for up to 18 months, its been 4 years he still takes them, every 2 or 3 months his torso will get so hot you can barely touch him, his lung Dr. sends him levoquin to take for 3 weeks. I am searching for answers on how too save him, his lung Dr. said he can never stop taking these antibiotics or the MAI will just explode says all we are doing is holding it at bay.
he spends more time in the bed than anything else.
I just happen on this site and hoping for some enlightment and guidance.
Replies to "my husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley..."
What is bronchiectasis? He has emphysema and his right lung is in very bad shape and cause a him pain, I asked his doctor about taking it out he said if he did that all infection would be in his left lung? He also said that he did not think my husband would survive a lung transplant.where do I find the discussion board you referred to
It would be nice if someone could explain to me how he got this horrific disease
@mobmcb The Discussion Board tab is underneath the picture that comes up when you first go to the mac and bronchiectasis group. You have to go to the list of groups and find the 'Mac and bronchiectasis' group, there is where you will find the tabs. The first tab says 'Discussion' The more you poke around this Connect site, the more you learn how to use it. I will see if I can dig up some info of interest to you until you can navigate your way around it. Be back to you in a bit.
Hi @mobmcb,
Let me help you navigate this website. Mayo Clinic Connect is categorized in groups. Here are 2 groups that I encourage you to follow.
> MAC & Bronchiectasis https://connect.mayoclinic.org/group/mac-bronchiectasis/
> Caregivers https://connect.mayoclinic.org/group/caregivers/
If you click the link to each of these groups, you will see the discussions related to each.
Learn more about how to follow groups, manage your notification preferences and other tips here: https://connect.mayoclinic.org/get-started-on-connect/
I'm glad you joined this group.
Connect
@mobmcb Hi there, and welcome to our group. I am sorry to hear that your husband got so ill while incarcerated. It is hard, I would imagine, to get the best in medical care while in there. Getting the PROPER care now is crucial. My doctor has me on antibiotics for life. His theory is that he is treating my bronchiectasis which is inviting the mac. I have been on rotating monthly antibiotics since 2013. This treatment plan has been life-changing for me. I was so sick for years prior to this treatment plan that my dr. wanted me to consider a lung transplant. I feel like a normal human being again aside from waves of fatigue. There is a wealth of info in our threads (conversations) and also topics on the Discussion Board that can give you lots of info. Please tell your husband that it is possible to feel better again. He will have to be diligent with staying on a good treatment plan and avoid catching colds and flu. There is a section on the Discussion Board about changes to make to avoid reinfection (or adding to the existing bacterial load) Please feel free to ask me questions or share what you would like. When we share our tid-bits about this disease, we are putting together a collective puzzle. I know your husband is feeling pretty tough right now and I am sure it is hard for you to witness it. I feel for him, I really do. Is there anything you can think of that you'd like ask?