Best hospital for severe MAC infection with many complications

Posted by jld82 @jld82, Aug 10, 2025

My brother is currently in the ICU and has now been on the ventilator for 4 weeks with a recent tracheostomy. He is 46 with a long medical history. He had no complications at birth, but began to have major problems at 6 months old. Pseudomonas that caused him to have to have plastic surgery to replace the roof his mouth. After that we stayed in and out of hospitals with lung infections, collapsed lungs, etc. He was diagnosed in elementary school with Sarcoidosis (which was changed to Still’s disease in 2005 after a splenectomy). He has had a hospital stay at least once every year of his life and many times we thought he may not make it, but he is a miracle and still here. Unfortunately this recent MAC Infection with a newly diagnosed CSID Disorder has him knocking on Heaven’s door (tears as I write this but we need help). He is 5’7” and might weight 100lbs. He is on the ventilator with a tracheostomy and every time they try to test him to come off the ventilator, his BP, HR and RR get extremely high. He has always had a lot of mucus production and now is unable to cough it up. The hospital he is in has been great, but I was wondering if we should try to move him to somewhere that specializes in MAC. Any help is appreciated and I am more than happy to answer any questions that will intern help get him better. Thanks so much.

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I am so sorry for your loss. You were certainly a caring sister and I'm sure he took comfort from that.

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On August 13th, after a month long ICU stay, my brother passed away. 😭 He had fought for 46 years to be the best person and role model he could be despite his poor health. He never complained. Not one time. The only question he had was not understanding why so many people harm themselves with drugs/alcohol/etc or want to kill themselves when he was fighting so hard every day of his life to stay alive? He was a very hard worker and had a very successful career, but stress was not his friend and he always had a lot of stress that he put on himself trying to do his best. I find comfort in knowing he is in Heaven with our Mama.
Thank you to everyone who took time to respond to my questions. I love and miss him so much.

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@jld82 so heartbreaking. It’s clear you were a loving and devoted sister, such a gift to him all these years. He sounds like an extraordinary person, accomplishing so much despite his many health challenges. May we all find that perseverance of mind and spirit on our own journeys. What a blessing your brother was to you, and you to him. Take care of yourself in this time of unimaginable grief. Losing those we love the most is probably one of the hardest things any of us must endure. 🙏❤️

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So sorry for your lost. He was a brave man and you are his angel.

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