Copd, pulmonary fibrosis, mac bacterial infection and honeycomb lung

Posted by tmmmrlts @tmmmrlts, Jan 7, 2019

My husband has been diagnosed with all four of these and I just want to understand more about what is to be expected. And what I can do to help.

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@merpreb

@tmmmrlts– Good morning. It's good to hear from you. This is so heart wrenching. Have his doctors suggested anyway of making hims stronger? Since his O2 becomes so low if he doesn't use the non-breather should he be using it all of the time?
This is a very long and tough journey for you. How are you holding up? What do the doctors say about his prognosis?

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I have my good days and bad days

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@tmmmrlts

They have said that 90 percent of his problem is from copd emphysema and ild and honeycomb lung and then the mac bacterial infection and sarcoidosis and inflammation is the rest and until the infection is gone they cant do any surgery.

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@tmmmrlts-This must be so frustrating for you. It's one tough bug. He's lucky to have you. How long will they continue to keep him in the hospital?

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@merpreb

@tmmmrlts-This must be so frustrating for you. It's one tough bug. He's lucky to have you. How long will they continue to keep him in the hospital?

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They are wanting his oxygen usage to be under 10 with activity, right now he has to use 15 liters. Until they feel he is strong enough to go home

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@tmmmrlts

They are wanting his oxygen usage to be under 10 with activity, right now he has to use 15 liters. Until they feel he is strong enough to go home

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On the nose cannula. He is only using the nonrebreather when he goes to the bathroom. On the treadmill and pedals he is using the nose cannula

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@tmmmrlts

On the nose cannula. He is only using the nonrebreather when he goes to the bathroom. On the treadmill and pedals he is using the nose cannula

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@merpreb we are finally going home after almost going home 2 times. The infection is still there. It will take a while for it to clear up. I'm scared to go home.

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@tmmmrlts– Oh I know, I have felt like this before too. If you can, have to hospital line up some at home help. They have social workers to help with this. If you don't get any help there I suggest you call hospice. If they can't help they will know where to send you for help.
You do not need to do this alone. And know that I am here for you! Can you contact these people?

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@tmmmrlts Agree completely with the above by Merry. get some help and don't go this alone. Please stay in touch.

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@tmmmrlts

Does anyone have any idea on cleaners that won't bother my husbands breathing. I used to clean with bleach or pinesol but it bothers him to much any more

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I use soap and hot water soak for 10 minutes prier to cleaning

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@merpreb

@tmmmrlts– Oh I know, I have felt like this before too. If you can, have to hospital line up some at home help. They have social workers to help with this. If you don't get any help there I suggest you call hospice. If they can't help they will know where to send you for help.
You do not need to do this alone. And know that I am here for you! Can you contact these people?

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We are back at the hospital. We are still in home. They are just trying to keep him comfortable. @merpreb @alamogal635

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Good morning- I'm confused by your first two sentences. Are you back in the hospital or at home? Or did you have to go back to the hospital for a treatment?

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It was supposed to be in hospital in our home town.

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@tmmmrlts

It was supposed to be in hospital in our home town.

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Well my husband fought and struggled long enough. He went home to be with our daughter and granddaughter on 6-14-19.

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