Pulmonary Fibrosis: My husband is ready to give up, how can I help?

Posted by lori01 @lori01, May 20 10:59pm

Hi all I am new here and just recently learned about this disease and how there is no cure. I am struggling with this. I am recently going through a divorce and found the love of my life and he was just diagnosed. I can’t help but not give up on this. He is ready to give up but I refuse to let him, he went through it with his father and knows his is moving quicker. Anyone know of anything we could try I am at my wits end.

Hi @lori01, welcome to Mayo Clinic Connect. We have many discussions about pulmonary fibrosis here in the Lung Health group, so I augmented the title of your discussion. Here are more discussions that you may be interested in:

– Living with Pulmonary Fibrosis (sometimes): Finding strength https://connect.mayoclinic.org/discussion/pulmonary-fibrosis-some-times/
– Pulmonary Fibrosis* https://connect.mayoclinic.org/discussion/pulmonary-fibrosis/
– Stem Cells / Regeneration and Lung Disease https://connect.mayoclinic.org/discussion/stem-cells-regeneration/
– Idiopathic Pulmonary Fibrosis and Hoarse Voice https://connect.mayoclinic.org/discussion/idiopathic-pulmonary-fibrosis-1/
– IPF and Pulmonary Rehab https://connect.mayoclinic.org/discussion/ipf-and-pulmonary-rehab/
– Pulmonary Fibrosis and sudden change in breathing https://connect.mayoclinic.org/discussion/sudden-change-in-breathing/

I'd also like to call in fellow members to help answer your questions, share their experiences and to offer their support, like @walap42 @frane1939 @penlee @cloe001 @waterboy @rayhastings @francko @alancady @lazyironman @kpeace @pfists @ppeschke and others.

Lori, I know this is a frightening time, but you are not alone. Getting such a diagnosis is quite a blow for both of you. It may seem like he is giving up, but that is an understandable first reaction. As a caregiver and new partner, your first reaction is to fight. He may just need you to simply be by his side right now, to be sad first before he's ready to roll up his sleeves and not give up. Might that be the case? What questions would you like to ask?

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My husband had a bunch of stuff wrong with his lungs including pulmonary fibrosis he first was sad then just as colleen said he rolled up his sleeves and fought.

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@tmmmrlts

My husband had a bunch of stuff wrong with his lungs including pulmonary fibrosis he first was sad then just as colleen said he rolled up his sleeves and fought.

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@tmmmrlts– And you were right there with him with plenty of encouragement and support!

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@merpreb

@tmmmrlts– And you were right there with him with plenty of encouragement and support!

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Merry Volunteer mentor @merpreb Thank you

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@tmmmrlts

My husband had a bunch of stuff wrong with his lungs including pulmonary fibrosis he first was sad then just as colleen said he rolled up his sleeves and fought.

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Hello @tmmmrlts,

How are you doing? It has been a while since you last posted. Have you started any new online college classes yet? I'd love to hear from you when you have time.

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Lori, Unfortunately there is no easy answer for your question. I support you reaching out. At times, you are certainly suffer at a significant level, and at the same time trying to continue your support for the man you love, after going through one of life's most difficult challenges.
You can't continue to provide the level of support you desire unless you care for yourself first. If necessary, talk to a professional in order to enable you to continue in a positive, and healthful manner.. You can not change the direction, only to ease the journey.
Acceptance is not necessarily a bad thing; it is what follows that matters at this moment. Encouraging him to recognize you, and any other loved ones support, and especially to take whatever pleasure is available on a daily basis, without appearing to make demands, is a key to a somewhat serene future for both you and him. He must choose that as well.
Best.

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@spudmato

Lori, Unfortunately there is no easy answer for your question. I support you reaching out. At times, you are certainly suffer at a significant level, and at the same time trying to continue your support for the man you love, after going through one of life's most difficult challenges.
You can't continue to provide the level of support you desire unless you care for yourself first. If necessary, talk to a professional in order to enable you to continue in a positive, and healthful manner.. You can not change the direction, only to ease the journey.
Acceptance is not necessarily a bad thing; it is what follows that matters at this moment. Encouraging him to recognize you, and any other loved ones support, and especially to take whatever pleasure is available on a daily basis, without appearing to make demands, is a key to a somewhat serene future for both you and him. He must choose that as well.
Best.

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Cannot find on internet: Why is my phlegm salty? Something new happening. Anybody know? Peach

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@peach414144 . Hi Peach. When phlegm mixes with saliva, as it can, it will taste salty. Nothing to worry about.

Are you feeling well, no fever?

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@merpreb

@peach414144 . Hi Peach. When phlegm mixes with saliva, as it can, it will taste salty. Nothing to worry about.

Are you feeling well, no fever?

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Peach, I agree with merpreb, not much to worry about:
Post-nasal drip from a sinus infection or allergies could also be to blame. The mucus from your nose can build up in the back of your throat when you're sick. If it mixes with the saliva in your mouth, it can cause a salty taste. You may also feel like you have a stuffy, runny nose or like it's hard to breathe.

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@merpreb

@peach414144 . Hi Peach. When phlegm mixes with saliva, as it can, it will taste salty. Nothing to worry about.

Are you feeling well, no fever?

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No fever. However, I have never had my phlegm taste like salt ever. This just started about two weeks ago.

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Morning @peach414144– I know that when things change with me, ( "oh, no…what now?") it scares me. One more thing, right? And I think the worst too! But this isn't necessarily true. It could just be that your body is changing- just because it does. Maybe is it be a chemical change, or that you just hadn't noticed it before. An increased amount of saltiness can often mean that your body is making more saliva. Our bodily fluids are all salty but we become used to the taste. If medication changes have taken place, new food is introduced, if you are dehydrated or even if you have more reflux, they can all cause a saltier taste.
If you feel that other things have changed then it's time to seek medical help. I hope that you find some answers in the following links
https://www.medicalnewstoday.com/articles/321202#causes
https://www.health.harvard.edu/diseases-and-conditions/why-do-i-have-a-salty-taste-in-my-mouth
Have you changed anything in your diet or medications?

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@tmmmrlts

My husband had a bunch of stuff wrong with his lungs including pulmonary fibrosis he first was sad then just as colleen said he rolled up his sleeves and fought.

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How to fight. My husband was just diagnosed yesterday. His brother had died from it, and my husband was by his side.
Please help me figure out how to help him.

me

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@maryflorida

How to fight. My husband was just diagnosed yesterday. His brother had died from it, and my husband was by his side.
Please help me figure out how to help him.

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@maryflorida– Good morning Mary. Pulmonary fibrosis can be inherited, but symptoms will show up later in life. But this is rare. Pulmonary fibrosis occurs when lung tissue gets thick and stiff. That makes it hard for you to catch your breath, and your blood may not get enough oxygen. Causes of pulmonary fibrosis include environmental pollutants, some medicines, some connective tissue diseases, and interstitial lung disease, and rarely genetics.

That must have been just awful for your husband to watch his brother die from a disease that he now has. You must both must be horrified and scared. This is a time to help with giving him all your support, help with research to find out everything that you can. Knowledge is power, or you both might already know a lot because of his brother.
https://www.pulmonaryfibrosis.org/life-with-pf/pulmonary-fibrosis-treatment-options
https://www.pulmonaryfibrosis.org/medical-community/health-provider-resources/familial-pulmonary-fibrosis-for-patients
Here are some suggestions to keep him comfortable.

Try and find the most comfortable positions for him so that his breathing isn't taxed more than it already is. Has his doctor suggested any treatments?

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No treatments as yet. He just had his first visit this week and the doctor said she was pretty sure that is his problem. Sleep study coming up next.

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@maryflorida

How to fight. My husband was just diagnosed yesterday. His brother had died from it, and my husband was by his side.
Please help me figure out how to help him.

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Hi Mary. I am sorry to hear about your husband's diagnosis and especially the family tie. I recently watched Noah Greenspan on YouTube. This video was very informative. Dr Kaner was a guest and he gave information that I had not seen explained in such detail before. Just as important was the other guest who at that time had had IPF for three years and what he was doing to keep himself as heathy as possible. That vid is 5 years old and I googled the guest, Bill Vick and he looks to be doing just as good now. He's part of PF Warriors and it's in TX I believe but they are on FB. A support system from others going through the same thing is important. I wish your husband, you and your family all the best.

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