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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@tmmmrlts

@merpreb the scan is showing he has minimal air space left. Due to the mac bacterial infection and other things he has. They keep bumping up the oxygen to 8 or 10 then turning it back down to 6. They are talking about a feeding tube. Because he gets to out of air eating

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@tmmmrlts– Oh I am sorry about this. What does your husband think about a feeding tube? I'm glad that they are being vigilant about his O2. He probably needs to have different amounts at certain times of the day.

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@tmmmrlts

@merpreb the scan is showing he has minimal air space left. Due to the mac bacterial infection and other things he has. They keep bumping up the oxygen to 8 or 10 then turning it back down to 6. They are talking about a feeding tube. Because he gets to out of air eating

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@tmmmrlts My dad had a feeding tube and I can answer questions about it. His was permanent because he wasn't able to safely swallow without danger of aspirating into his lungs. My dad had a skull fracture head injury when he was in his 60s, and had to relearn how to swallow. He was able to get off the feeding tube after a while, but when he was much older in his 80's, he again had difficulty swallowing and had aspiration pneumonia because of swallowing wrong, and he had to have the feeding tube again and have no food by mouth. Over time, when a person is not expanding their stomach with food volume, the stomach shrinks and has less ability to accept the liquid food. That presents a problem, and feeding then becomes a slow drip. It gets difficult to keep to a schedule to get enough in a day when it has to be done very slowly. At first, we could dispense a syringe full, but then had to use an IV type bag on a stand. If my dad would start coughing up the liquid from his stomach, and I would have to quickly use the tube to empty stomach contents so he would not aspirate on it. That could happen after a feeding was finished, and he had a limit, so I tried not to over fill his stomach. He was also at end stage heart failure and passed away. That was a few years ago. I was his caregiver. I can answer questions, so please don't hesitate to ask. Hopefully, a feeding tube would be a temporary therapy until he recovers.

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@jenniferhunter

@tmmmrlts My dad had a feeding tube and I can answer questions about it. His was permanent because he wasn't able to safely swallow without danger of aspirating into his lungs. My dad had a skull fracture head injury when he was in his 60s, and had to relearn how to swallow. He was able to get off the feeding tube after a while, but when he was much older in his 80's, he again had difficulty swallowing and had aspiration pneumonia because of swallowing wrong, and he had to have the feeding tube again and have no food by mouth. Over time, when a person is not expanding their stomach with food volume, the stomach shrinks and has less ability to accept the liquid food. That presents a problem, and feeding then becomes a slow drip. It gets difficult to keep to a schedule to get enough in a day when it has to be done very slowly. At first, we could dispense a syringe full, but then had to use an IV type bag on a stand. If my dad would start coughing up the liquid from his stomach, and I would have to quickly use the tube to empty stomach contents so he would not aspirate on it. That could happen after a feeding was finished, and he had a limit, so I tried not to over fill his stomach. He was also at end stage heart failure and passed away. That was a few years ago. I was his caregiver. I can answer questions, so please don't hesitate to ask. Hopefully, a feeding tube would be a temporary therapy until he recovers.

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I'm sorry about your father he has started trying to eat a little bit at a time my question is would it be possible for him to get off it

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@merpreb

@tmmmrlts– Oh I am sorry about this. What does your husband think about a feeding tube? I'm glad that they are being vigilant about his O2. He probably needs to have different amounts at certain times of the day.

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@merpreb he says if they have to

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@tmmmrlts

I'm sorry about your father he has started trying to eat a little bit at a time my question is would it be possible for him to get off it

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@tmmmrlts Thank you for your comment. I did the best I could for my dad and he lived longer for it, so I have no regrets. They do swallowing studies with a moving x-ray to determine if a patient is swallowing safely. It could also be if there is a weakness that could cause aspiration, and they do a feeding tube to prevent it. A speech therapist works on strengthening exercises for swallowing. That didn't help my dad much because for him, it was a traumatic brain injury that caused the problem years earlier, and he had some minor strokes and he even got pneumonia from aspirating his own saliva. No one could prevent that, and we did nebulizer breathing treatments for his lungs. Yes, it is possible for a patient to get well enough to have a feeding tube removed. There can also be infections around where the tube exits the stomach wall and that must be kept clean and padded with gauze pads to prevent irritation. Medications (pills) are crushed and administered through the tube, and it is flushed with water afterward. You'll have to monitor appropriate food and fluid intake. Talk to the doctor about therapy that may help with swallowing. There is some discomfort for a few days after the procedure, but not bad pain. My dad did fine with it.

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@tmmmrlts

@merpreb he says if they have to

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Day 19 in hospital getting better on eating, has put 1 lbs back on walked approximately 320 feet. Waiting on a room in ppcu. Hoping physical therapy will come today, they have supposed to have been coming since last wed. But havent seen them yet. Praying he will get better soon.

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@tmmmrlts– Good morning. Wow, you must be very worried. What is ppcu? Pulmonary something? What do the nurses or your doctors say about PT not showing up? I'd be furious! How are you doing? Are you getting any rest at all?

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@tmmmrlts

Day 19 in hospital getting better on eating, has put 1 lbs back on walked approximately 320 feet. Waiting on a room in ppcu. Hoping physical therapy will come today, they have supposed to have been coming since last wed. But havent seen them yet. Praying he will get better soon.

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@tmmmrits I'd be furious as well about the PT bt showing up. That is too long a wait. Glad though the eating is better and so is the walking. Will keep you in my prayers. Also, hope and pray for a more private room–it helps in healing.

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@merpreb

@tmmmrlts– Good morning. Wow, you must be very worried. What is ppcu? Pulmonary something? What do the nurses or your doctors say about PT not showing up? I'd be furious! How are you doing? Are you getting any rest at all?

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@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.

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@alamogal635

@tmmmrits I'd be furious as well about the PT bt showing up. That is too long a wait. Glad though the eating is better and so is the walking. Will keep you in my prayers. Also, hope and pray for a more private room–it helps in healing.

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@alamogal635 thank you it is a private room.

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@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.

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@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?

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@tmmmrlts

@alamogal635 thank you it is a private room.

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

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