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How do you tell if you are end stage from MAC
I am afraid that I am dying right now. I was diagnosed with MAC 16 months ago. I have not been able to take the Big 3 due to a heart condition called QT Prolongation. All three of the Big 3 lists this as a side effect so I was not put on them. In addition, I suffered a severe accident in May 2025 that shattered my leg and spine. Spent 7 weeks in a rehab facility while the leg healed after major surgery and. Then had to wait until September for surgery to try and repair my back. It didn’t work. The extreme pain made airway clearance impossible. Any breath sends horrendous pain throughout my body. I am being treated at Northwestern which is 35 miles away. I cannot drive to get there nor can I afford to hire a car. I went to my local ER but they never heard of MAC and just released me. I am extremely dizzy. Cannot walk and have been running a temperature for the last week. I really feel like I am going to die here at home. I use a oximeter and it is averaging 95-97. My pulmonologist at Northwestern is horrible, even if I could get there. They would push the Big 3 which would definitely kill me. And I have already tried my local ER. I am very frightened.
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Maybe you can try inhaled amikacin and clofazimine, that will replace rifampin. Probably this will reduce the side effects. You can also take a lot of probiotics to reduce the digestive side effect. Take care and I hope you can overcome it!
@helen1000 Thank you for the response. Unfortunately I cannot get the medication because I cannot get to the hospital which is 35 miles away. I tried calling my pulmonologist today but as I said, he is terrible. I told them I was dying here and the local hospital could not help me. They just said maybe in two days someone MAY get back to you. And this is one of the Centers for Excellence supposedly. My fever is at 103. For that is very high because my normal body temperature has always been at 97.4
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1 Reaction@doberdoo Please, if you are critically ill, find a way to get to the hospital, even if it means calling a friend, neighbor, your pastor, an Uber or an ambulance!
Did your local ER test you for influenza, RSV, Strep & Civid?
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2 Reactions@sueinmn Thank you but I have no money to call any driver. I live off of very little social security and every cent is spent immediately. No family, friends or neighbors. I always knew I would be going out alone, in my home.
Yes,they tested for those and other things. All negative however the CT showed an increase in the ground glass opacities in both lungs, but the nodules in both lungs are unchanged. I do not believe they checked for pseudomonas which I think I understand are other infections on top of the MAC?
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1 Reaction@doberdoo I'm sorry to hear that you have no way to get help. Are you in a town with a Senior Center? Often they have volunteers who can drive you for little or not cost.
I know this is hard to do when you are feeling ill, but another option is to call your county and find their senior services. I'm not sure what state you are in, but if you go to Northwestern it must be Illinois or Indiana- both states offer count based services.
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Can you call 911 and be taken to a different hospital other than the one you already went to? So sorry you are going through this.
I’m so sorry. It sounds very frightening. The oxygen levels you posted don’t look end stage-one good thing. Are you on home oxygen? Were the levels checked on room air? Do levels drop with only a little activity? I mention this because some people’s drop a lot with activity and that can help them qualify for oxygen. If it stays up, that’s good news!
You must have a local primary doc in addition to the pulmonologist and I’d try calling/seeing them. They could determine a need for a home health care evaluation as well as sputum cultures and blood work in case this is an acute infection. Your doc would also have an idea if you would qualify for hospice. Either of these services could possibly get you a little help at home. Both programs also usually have social workers who can help determine if you qualify for more services. As Sue mentioned, senior services might have someone to help find services, too. These services (home care and hospice) do require medical evaluations and a primary doc is frequently the one ordering the services.
If your fever gets high again and you feel short of breath or as if you’re dying, call 911. While you’re at the hospital, ask if their social worker is available (usu day time). If you go to ER, make sure you tell them you have no help and need some. They’d have idea of what is available in your community.
Hugs to you.
Please call 911 to get you to a hospital ASAP with 103 temp. You could have a UTI or some other infection that needs to be treated.
They will do cultures, find out where the infection is and treat you with antibiotics.