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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@alamogal635

Thank you–didn't know. Will not try and post again. My apologies.

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@almoga635
My apologies if I have offended you I didn't mean to I appreciate any help I can get. Or suggestions. He walked 1500 feet yesterday and did the pedals. Yes I talked to the dr Physical therapy doesn't work on sundays but they should of showed up on Saturday.

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@tmmmrlts

@almoga635
My apologies if I have offended you I didn't mean to I appreciate any help I can get. Or suggestions. He walked 1500 feet yesterday and did the pedals. Yes I talked to the dr Physical therapy doesn't work on sundays but they should of showed up on Saturday.

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@merpreb
This makes day 26 in the hospital. He is still on 15 with the rebreather mask with activity. At rest he is at 4.

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@tmmmrlts– That's an improvement! Have you spoken to his doctor about long term prognosis? What will happen when he's discharged?

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@tmmmrlts

@almoga635
My apologies if I have offended you I didn't mean to I appreciate any help I can get. Or suggestions. He walked 1500 feet yesterday and did the pedals. Yes I talked to the dr Physical therapy doesn't work on sundays but they should of showed up on Saturday.

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@tmmmrlts In no way did you offend me. I though I'd interfered in a private conversation where I had no business. I"m glad he walked 1500 feet. Again, I"m sorry to have banged into something private. I"m learning my way around.

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@alamogal635

@tmmmrlts In no way did you offend me. I though I'd interfered in a private conversation where I had no business. I"m glad he walked 1500 feet. Again, I"m sorry to have banged into something private. I"m learning my way around.

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It's not private and I thank you for your input I always try and tag the person that I am answering question for

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@merpreb

@tmmmrlts– That's an improvement! Have you spoken to his doctor about long term prognosis? What will happen when he's discharged?

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Yes I have spoken to dr if they cant get him off oxygen completely he will have to wear it at home. They will continue the antibiotics until the cultures come back neg and he at least has to be on it for 18mo. Then if it comes back he will have to take it the rest of his life.

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@tmmmrlts

@almoga635
My apologies if I have offended you I didn't mean to I appreciate any help I can get. Or suggestions. He walked 1500 feet yesterday and did the pedals. Yes I talked to the dr Physical therapy doesn't work on sundays but they should of showed up on Saturday.

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You have NOT offended me. DOn't worry about it. We are all in on way or another here, dealing with tough situations and express our feelings. Quite normal. I wish you the best with all you are handling.

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@tmmmrlts

Yes I have spoken to dr if they cant get him off oxygen completely he will have to wear it at home. They will continue the antibiotics until the cultures come back neg and he at least has to be on it for 18mo. Then if it comes back he will have to take it the rest of his life.

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Day 42 they told us that his inflammation is slightly better. The honeycomb in his bottom lobes has worsened since January. They said this mac bacterial infection is a tough one to fight. They are wanting him stronger and more nourished. The oxygen is dropping in the lower 80's sometimes even at rest. He is still using the nonrebreather on 15 part time. Other times hes using 8 or 10 and 15 on nose cannula.
I'm just praying for the best.

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@tmmmrlts

Day 42 they told us that his inflammation is slightly better. The honeycomb in his bottom lobes has worsened since January. They said this mac bacterial infection is a tough one to fight. They are wanting him stronger and more nourished. The oxygen is dropping in the lower 80's sometimes even at rest. He is still using the nonrebreather on 15 part time. Other times hes using 8 or 10 and 15 on nose cannula.
I'm just praying for the best.

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@tmmmrlts Mis be so difficult for you. Will also be praying with and for you.

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@tmmmrlts

Day 42 they told us that his inflammation is slightly better. The honeycomb in his bottom lobes has worsened since January. They said this mac bacterial infection is a tough one to fight. They are wanting him stronger and more nourished. The oxygen is dropping in the lower 80's sometimes even at rest. He is still using the nonrebreather on 15 part time. Other times hes using 8 or 10 and 15 on nose cannula.
I'm just praying for the best.

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@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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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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@alamogal635

@tmmmrlts Mis be so difficult for you. Will also be praying with and for you.

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Thank you so much

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