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

Posted by lori01 @lori01, May 20, 2020

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.

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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.

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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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@maryflorida

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- Yes, that would be the next step. I don't know anyone actually sleeps in these studies, do you? 🙂

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I've never done that myself. I think it would be uncomfortable.

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@jdecks

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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Thank you. His brother's death was violent and that is what we are dreading. I will watch this video and see what else I can do for him.

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@maryflorida

Thank you. His brother's death was violent and that is what we are dreading. I will watch this video and see what else I can do for him.

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Ok I see that Bill Vick has a webinar this coming Tuesday. Sept 7 at 8:30 am.

https://us02web.zoom.us/w/82364016057?tk=uWjp64R1Cw8FXXGfOathy8PKEpwyhomFgWjBV_1S0wQ.DQMAAAATLUcluRZvWGNDczVYMVJLLWxhcDJvbUwyYnRBAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA&pwd=THVPaXFHaitHRjRWMHpOcFZ3dXljZz09

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