Best hospital for severe MAC infection with many complications

@jld82 For someone in your brother's precarious state, your options may be limited to critical care settings near you - it sounds like you need to focus on his total lung conditions and CSID, so a multi-specialty setting would be best.
Do you have access to Mayo, Johns Hopkins, Stanford, NYU Langone, or another large multi-specialty hospital that offers critical care? Since his health issues are lifelong, if his insurance is through Medicaid or Medicare, you need to find a facility that accepts it.

Thank you so much for responding. We are closest to Mayo Jacksonville. He is currently at a University Hospital which I’m sure you know is a teaching hospital (sorry I don’t want to give out exact details). He had just been referred to a new pulmonary specialist that practices at this location, so that’s the reason I took him to that hospital. He was the one that told him he had MAC but with the CSID he had lost so much weight. Approximately 60-70 lbs over the last 8 months, but now he is literally skin and bones with 2 bed sores on his bottom. I am a retired pharmacist of 10 years and haven’t practiced in 10 years, but know in his state, bed sores are a bit inevitable. Anyway, he has insurance through his wife with the school system so I don’t feel that would be a problem. I honestly don’t feel like in his current state it is safe to move him, but when he is able to be moved, would Mayo be a better choice than a large university hospital? Thanks again.

Maybe - ask a lot of questions at the University and Mayo. I'm not as familiar Mayo Jax and their specialties.
In anyone with other infections bedsores present a special risk. Is his wife asking for your help and support?

I will definitely ask questions and do more research. I saw this forum and thought I would just give it a shot. I appreciate you taking the time to respond.
His wife is supportive of him or so I thought. That’s another situation that I can’t say much about other than had someone not gotten him to a hospital, he would have died and she chose to go on vacation. Several different doctors at different times has told my dad and myself that he would have died if he stayed at home any longer without inpatient medical care with oxygen assistance other than a nasal cannula. Right after getting to the ER, they took him straight back and put him on bipap and then ventilator.

We hear your painful and emotional state with your deep concern and dedication in supporting your brother. I, we, understand. Many of us have also been there with a loved one and wanting everything that can be done for them done. it has been a long difficult journey for your brother and your family. Glad to hear you were able to arrange the transfer to the hospital.
Wishing you and your brother the help and the answers you both need.
Barbara

I go to Mayo in Rochester, excellent!!

Thank you so much.

Hello. First of all I am sorry to hear your brother has had more than his share of challenges. He is very lucky in one big way - to have a sister like you. I don’t have any advise/suggestions as far as moving him to a different hospital but I can tell you from experience that packing a bed sore with honey or sugar will help clear it up quite quickly. My mother in law’s father was bedridden for years and he had a wonderful caregiver from down south who treated his bed sores with sugar and it was a miracle. I use honey on a burn and it stops the pain as well as curtailing the burn from going any deeper. I wish you both the best!

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.

I am so sorry you lost your brother at such a young age! Sending hugs your way.
Please remember his successes and not so much his struggles.