Copd, pulmonary fibrosis, mac bacterial infection and honeycomb lung

Posted by tmmmrlts @tmmmrlts, Mon, Jan 7 3:37pm

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.

@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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@tmmmrlts

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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@merpreb Thank you for all of your help through all of this. You are a very special person.

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@tmmmrlts

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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@tmmmrlts – I am so sorry. You fought with him for a very long time.
I hope that you will find peace now.
If I can help in anyway you just need to call out.
You are also very special. It's been an honor to stand with you.
There is a grieving site on connect. My cellphone is acting up otherwise I'd write the link.
My best to you with a warm hug.

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@merpreb

@tmmmrlts – I am so sorry. You fought with him for a very long time.
I hope that you will find peace now.
If I can help in anyway you just need to call out.
You are also very special. It's been an honor to stand with you.
There is a grieving site on connect. My cellphone is acting up otherwise I'd write the link.
My best to you with a warm hug.

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@tmmmrlts– Good morning. This is the site I was referring to if you need it. I hope today is a better day than yesterday.

Loss and Grief Group: mhttps://connect.mayoclinic.org/group/loss-grief/

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@merpreb

@tmmmrlts– Good morning. This is the site I was referring to if you need it. I hope today is a better day than yesterday.

Loss and Grief Group: mhttps://connect.mayoclinic.org/group/loss-grief/

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Yes I'm sleeping better especially when I keep my grandchildren. I guess it's just knowing someone else is here. Thank you I will go to the site you recommended. I also started going back to church.

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@tmmmrlts– Good morning. I'm so glad that your grandchildren are a comfort, and that you are sleeping at least. No matter what kind of relationship we have with a spouse, loving or otherwise, it's not easy to lose them. And time will be your best healer, and for you church and your beliefs. Other than church are you getting out at all? Are you ready for that?

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@merpreb

@tmmmrlts– Good morning. I'm so glad that your grandchildren are a comfort, and that you are sleeping at least. No matter what kind of relationship we have with a spouse, loving or otherwise, it's not easy to lose them. And time will be your best healer, and for you church and your beliefs. Other than church are you getting out at all? Are you ready for that?

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Yes I am going places my friends her and her husband have been there for me through all of this. we go out and eat lunch together. His cousin and I went to sikeston and went shopping together and had lunch.

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@tmmmrlts – This is great news! I'm so glad.

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@kathydyd

I am so sorry. He is so young. I smoked for 46 years. Your husband needs to choose – life or premature death. Give it up one cigarette at a time. The urge comes on so strong, but it goes away once you fight it. I love being a non-smoker. I no longer feel like I have leprosy. It has been 4 years and there are things I do miss about it, but I know/hope that my choice to stop will allow me more time with my kids and grandkids.

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Smoking , quitting can be done when you have a strong will to live!!

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@tmmmrlts

He has had copd since 2011, and dont know how long he has had pulmonary fibrosis, or the honey comb lung and it's been almost a year since he was diagnosed with mac bacterial infection.
I know my husband and he is not one to just sit around and do nothing. But he has been running fever in the afternoon and throwing up every day. No matter what he eats. He has lost 20 lbs in about a month. He lays down more than he ever has. I brung this up to his dr in dec and he said I will let the infectious disease dr handle it. We have used this doctor for 30+years and I dont understand him anymore.

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I wish you the best of luck and I would see another doctor, sounds like the one you used all these years is not what you need. Have you seen a pulmonary doctor?

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