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Best hospital for severe MAC infection with many complications

Posted by jld82 @jld82, 1 day ago

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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Sue, Volunteer Mentor | @sueinmn | 1 day ago

@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.

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jld82 | @jld82 | 1 day ago
In reply to @sueinmn "@jld82 For someone in your brother's precarious state, your options may be limited to critical care..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@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.

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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.

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Sue, Volunteer Mentor | @sueinmn | 1 day ago
In reply to @jld82 "Thank you so much for responding. We are closest to Mayo Jacksonville. He is currently at..." + (show)
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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.

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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?

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jld82 | @jld82 | 1 day ago

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.

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blm1007blm1007 | @blm1007blm1007 | 12 hours ago
In reply to @jld82 "I will definitely ask questions and do more research. I saw this forum and thought I..." + (show)
Profile picture for jld82 @jld82

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.

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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

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