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Mom is 68. She was just dx with PF. Doctors previously thought her scarring was from radiation therapy for cancer x2 back in 89 and 91. She is on 3lpm now. 3 months ago, to the day, she had a heart attack caused by her lungs. She can't talk without gulping for air and running out of breath. Actually, talking, walking, rolling over, etc. But the hospital said her o2 sats are good and released her home to be followed up by her pulmonologist. But if she's not moving, not talking, then she can maintain her O2 okay, temporarily. Everything I've read says from 1st dx is approx 3-5 years. But 1. She cannot live this way for that long it wouldn't be fair to her. 2. First dx should have been years ago as I've sent her to the hospital numerous times for gulping air. 3. She really is tired all the time. This is the first time she has left the hospital still out of breath and not feeling at least a little better. I guess I need to know is did your loved one bounce back from something like this? How did you finally determine that it was time to call hospice? Did you rely on the doctor giving you a time frame? Is she going to suffocate to death? How is that fair to her? We provide her with edibles... It helps her sleep at night. She only receives a quarter amount during the day to help with anxiety when the breathing is worse. But it always seems to be worse now. I know it can hit suddenly, but all I can say is what happened? She was doing good and up and moving not 1 month ago.

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I’m so sorry Jessenm. Please do share her story. I found that talking about MIL & IPF really helped. When she first went on hospice, I searched the Internet for hours looking for stories, I wanted to know what to expect during her last few months & days. I found very little. I know the end is different for everyone, some PF pass peacefully at home, others need major medical intervention at the hospital. I wanted to hear different stories so I could prepare myself for whatever was to happen but I didn’t find much. I plan to share MILs story so it will help others too. Anyway I am so sorry for your loss.
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Reply to worriedinCali
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Wanted to provide an update to this.
Mom just passed as of Monday. I'm heartbroken.
She went onto hospice June 30 after ending up in the hospital. I really thought I would have more time; but nope. She's not in pain anymore at least.
I plan on writing out her story and path we took to the end, just to be able to help others going through this.
Thank you everyone for your advice in this.
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Reply to anonymous746479
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Thank you for your replies. She has had diminished lung sounds for quite a many years now.
I am so grateful for the information you have provided. It helps with where my head keeps going (not too good of a place). I will know more as of the 11th as that is her follow-up with her pulmonary doctor following her discharge. I will be asking about palliative care and/or hospice care.
The unknown is the scariest thing I think.
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Reply to anonymous746479
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worriedinCali,
I am so sorry that your MIL died yesterday :( I know that you have been thorough a lot with her. Thank you for being willing to share your story with jesdenm so soon after the death of your MIL.

Jesdenm, I think that Worriedincali has answered most of your questions for now. And I think that you need to have your doctor ask hospice to evaluate your Mom to see if she qualifies for their care.

My Dad developed pulmonary fibrosis about age 70 and he lived to age 78 (the fibrosis developed because he had a ruptured appendix when he was 8 years old which led to lung abscesses and other problems). He died of a heart attack most likely related to a gastrointestinal bleeding. He was on oxygen for the last 5 years of his life and he had NO lung sounds (so no air was going into or out of ) his lower lungs for the last 2-3 years. My Mom was diagnosed with pulmonary fibrosis last year. So far, it doesn't seem to bother her too much yet.

This is a lot to take in. Take a deep breath and know that we are here for you and for your family.

No matter what happens with your Mom, God will hold you close and give you His strength because He loves you, your Mom, and your family. God Bless.
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Reply to DeeAnna
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Hi, I'm so sorry you & your mom are going through this. We lost my MIL to idiopathic pulmonary fibrosis yesterday, she was only 68. She was diagnosed in January 2017 so she lived 16 months after diagnosis. The doctor initially say she would live 5 years. By thanksgiving he said she wouldn't make it to Christmas 2018. She didn't start needing 24 hour oxygen until last summer. By Christmas it was harder to walk from one end of the house to another--she was getting weak and her breathing was getting worse. Around that time she stopped wanting to leave the house, in part because she couldn't walk without losing her breath and in part because she was in the end stage of this horrible disease.
She went for a lung transplant consultation in mid February (something your mom might want to consider looking into) and was not a candidate due to scarring on her liver. 2 weeks later at the very end of February, her doctor performed a series of tests and said she had 3 months left. She is the one who accepted that and agreed to hospice. And she lived exactly 3 more months. Rest assured, your mother will not suffocate to death. If the doctor feels your mom has less than 6 months left, it would be a good idea to discuss hospice. If and when you and mom decide its time, make sure you talk to her and find out what she wants. Include other family members that are involved.I too was very worried that my MIL would suffocate to death, suffer until the end. But she didn't. Hospice definitely did NOT speed up the process, the meds they provided allowed my MIL to pass quietly, peacefully in her sleep. If you have any questions at all, I'll answer them to the best of my knowledge. My MIL never had any episodes, she didn't get sick and require hospitalization, no flare-ups, she just declined very fast.
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Reply to worriedinCali
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Have you thought about a Hospice evaluation?

Hospice might give you better access to all kinds of symptomatic relief.

I'm so sorry that your mom is dealing with this awful disease.
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Reply to BarbBrooklyn
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