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 -Don't forget, I'm not a doctor or radiologist. Some doctor's don't look at films, they just read the report.

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@merpreb he even showed us the honeycomb on the cat scan

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@tmmmrlts- I believe you honey, I do believe you. Just make sure that any confusions that you have, any misunderstandings or facts, behaviors, anything that is questionable that you- Ask your doctor. You have that right, even if one doctor disagrees with another. If one disputes another than you will have to make your own mind up, make a decision about who you want your husband treated by. Just keep him comfortable for now,if you can.

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@merpreb

@tmmmrlts - Has your husband said anything about feeling that he was dying- NOT that he wanted to die. Do you think that he's at end stage? Many times patients have outlived their test results. What do you think?

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@merpreb the only thing he has said is that he doesn't know how much longer he is going to be here. He has told our kids that they need to get there finances straight because he wouldn't be here to help them.

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@tmmmrlts

@merpreb the only thing he has said is that he doesn't know how much longer he is going to be here. He has told our kids that they need to get there finances straight because he wouldn't be here to help them.

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@tmmmrls- That wasn't a definite for extremely soon. How do you feel about this?

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@merpreb

@tmmmrlts - Has your husband said anything about feeling that he was dying- NOT that he wanted to die. Do you think that he's at end stage? Many times patients have outlived their test results. What do you think?

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@merpreb I know he is very different then just last Sept. He was working around the house. Piddling with his car and now he can't.
We are planning on talking to his dr on Monday. About all this.

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@tmmmrlts- That's good @tmmmrlts. He's the right person to talk to. I'm sorry that you have to deal with this. It's very tough.

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@merpreb

@tmmmrlts- I believe you honey, I do believe you. Just make sure that any confusions that you have, any misunderstandings or facts, behaviors, anything that is questionable that you- Ask your doctor. You have that right, even if one doctor disagrees with another. If one disputes another than you will have to make your own mind up, make a decision about who you want your husband treated by. Just keep him comfortable for now,if you can.

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@merpreb I am trying

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@merpreb

@tmmmrls- That wasn't a definite for extremely soon. How do you feel about this?

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I am a complete mess.

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@tmmmrlts

I am a complete mess.

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@tmmmrls- I know. I'm so so sorry. Can you take a bit of a break and get out of the house by yourself?

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Hi @tmmmrlts, As Merry suggested, I have deleted the message with your husband's radiology report. It contains personal identifying information about your husband and should not be shared on a public forum like Connect. We want to keep you and your husband's information safe.

Understanding pathology reports can be very challenging. It is important not to get tangled in the details until you have time to go over the report with your husband's pulmonologist and/or infectious disease specialist. In my opinion, the best thing that you can do between now and the appointment is to keep pen and paper nearby and to jot your thoughts and questions down. Just write them down. Then before the appointment, organize your questions into priority order.

Here are a few suggestions that I have pulled from the fears and concerns you shared above. Maybe this will help you get started.

1. You have mentioned several conditions. Can you explain what my husband has?
2. What treatment options are there?
3. What do we need to do?
4. Will he die?
5. What do I as a caregiver need to know? How can I get help?
6. What is the next step after today's appointment?

I hope this helps. My husband always says put "worry into action." Writing down your questions instead of leaving them to bounce around in your head might help. What do you think?

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