1. < Lung Health

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 | @alamogal635 | May 8, 2019
In reply to @tmmmrlts "Day 42 they told us that his inflammation is slightly better. The honeycomb in his bottom..." + (show)
@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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1 reply
Merry, Alumni Mentor | @merpreb | May 9, 2019
In reply to @tmmmrlts "Day 42 they told us that his inflammation is slightly better. The honeycomb in his bottom..." + (show)
@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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1 reply
tmmmrlts | @tmmmrlts | May 12, 2019

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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1 reply
tmmmrlts | @tmmmrlts | May 12, 2019
In reply to @alamogal635 "@tmmmrlts Mis be so difficult for you. Will also be praying with and for you." + (show)
@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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tmmmrlts | @tmmmrlts | May 12, 2019
In reply to @merpreb "@tmmmrlts- Good morning. It's good to hear from you. This is so heart wrenching. Have his..." + (show)
@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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Merry, Alumni Mentor | @merpreb | May 13, 2019
In reply to @tmmmrlts "They have said that 90 percent of his problem is from copd emphysema and ild and..." + (show)
@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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1 reply
tmmmrlts | @tmmmrlts | May 13, 2019
In reply to @merpreb "@tmmmrlts-This must be so frustrating for you. It's one tough bug. He's lucky to have you...." + (show)
@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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1 reply
tmmmrlts | @tmmmrlts | May 13, 2019
In reply to @tmmmrlts "They are wanting his oxygen usage to be under 10 with activity, right now he has..." + (show)
@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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1 reply
tmmmrlts | @tmmmrlts | May 29, 2019
In reply to @tmmmrlts "On the nose cannula. He is only using the nonrebreather when he goes to the bathroom...." + (show)
@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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Merry, Alumni Mentor | @merpreb | May 29, 2019

@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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