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.

Interested in more discussions like this? Go to the Lung Health Support Group.

Merry, Alumni Mentor | @merpreb | Apr 21, 2019
In reply to @tmmmrlts "@merpreb Progressive pulmonary care unit, they say they will check into it, then they still dont..." + (show)
@tmmmrlts

@merpreb Progressive pulmonary care unit, they say they will check into it, then they still dont show. We are in ppcu now its today makes 5 days and they physical therapy has only worked with him 2 days I guess they can get by without doing there job on weekends. I am doing ok. And yes I'm getting some.

Jump to this post

@tmmmrlts- Thank you. That's horrible that PT is not working with your husband.
I'm glad that you are getting some rest. Have you spoken with his doctor about that. What did he prescribe?

REPLY
alamogal635 | @alamogal635 | Apr 21, 2019
In reply to @tmmmrlts "@alamogal635 thank you it is a private room." + (show)
@tmmmrlts

@alamogal635 thank you it is a private room.

Jump to this post

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

REPLY
1 reply
tmmmrlts | @tmmmrlts | Apr 23, 2019
In reply to @alamogal635 "Thank you--didn't know. Will not try and post again. My apologies." + (show)
@alamogal635

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

Jump to this post

@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.

REPLY
3 replies
tmmmrlts | @tmmmrlts | Apr 23, 2019
In reply to @tmmmrlts "@almoga635 My apologies if I have offended you I didn't mean to I appreciate any help..." + (show)
@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.

Jump to this post

@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.

REPLY
Merry, Alumni Mentor | @merpreb | Apr 23, 2019

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

REPLY
1 reply
alamogal635 | @alamogal635 | Apr 23, 2019
In reply to @tmmmrlts "@almoga635 My apologies if I have offended you I didn't mean to I appreciate any help..." + (show)
@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.

Jump to this post

@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.

REPLY
1 reply
tmmmrlts | @tmmmrlts | Apr 26, 2019
In reply to @alamogal635 "@tmmmrlts In no way did you offend me. I though I'd interfered in a private conversation..." + (show)
@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.

Jump to this post

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

REPLY
tmmmrlts | @tmmmrlts | Apr 26, 2019
In reply to @merpreb "@tmmmrlts- That's an improvement! Have you spoken to his doctor about long term prognosis? What will..." + (show)
@merpreb

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

Jump to this post

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.

REPLY
1 reply
alamogal635 | @alamogal635 | Apr 26, 2019
In reply to @tmmmrlts "@almoga635 My apologies if I have offended you I didn't mean to I appreciate any help..." + (show)
@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.

Jump to this post

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.

REPLY
tmmmrlts | @tmmmrlts | May 8, 2019
In reply to @tmmmrlts "Yes I have spoken to dr if they cant get him off oxygen completely he will..." + (show)
@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.

Jump to this post

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.

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.