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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maryflorida | @maryflorida | Sep 8, 2021

In reply to @maryflorida "I've never done that myself. I think it would be uncomfortable." + (show)

I had to go to my own lung doctor today and she said that my husband needs the more complete care that Mayo would give him since they did his kidney transplant. I will ask him tomorrow we can call Mayo. Do you know anything of the wei institute? They feel they can cure this with natural means. ?

Merry, Alumni Mentor | @merpreb | Sep 9, 2021

In reply to @maryflorida "I had to go to my own lung doctor today and she said that my husband..." + (show)

Mary- I am always sceptical of the word, CURE. It actually scares me. I would follow the Pulmonologs'ts advice and turn to Mayo Clinic.

If you would like to learn more here is the WEI website.
https://weiinstitute.org/
I'm a big believer in proven science and hesitate to use herbs as a "medicine." There are just so many unknowns for me. Are there for you?

Sue, Volunteer Mentor | @sueinmn | Sep 9, 2021

In reply to @maryflorida "I had to go to my own lung doctor today and she said that my husband..." + (show)

Hi Mary, I am a believer in alternate medicine as complimentary care, in addition to traditional medicine. I believe that all of our organs, muscles, bones, nerves and our brains function together and sometimes additional strategies help us heal.

That said, any time ANYONE claims they can cure a disease that traditional medicine and science have not yet found a cure for screams CAUTION at me.

Second, herbs are often an important part of alternative medicine treatment. These are sometimes helpful, but they are not innocuous. They can act on or in organs other than the one for which prescribed, and more importantly may interact with prescribed medications. At one point I had a licensed acupuncturist (LAc) tell me to discontinue a prescribed med and replace it with herbs she prescribed. Believe me, I never went near her again.

I believe that, with your husband's history, I would follow the pulmonologist's advice to return to Mayo, where he can get fully coordinated care.

What are you thinking about these options?
Sue

maryflorida | @maryflorida | Sep 9, 2021

In reply to @sueinmn "Hi Mary, I am a believer in alternate medicine as complimentary care, in addition to traditional..." + (show)

He just agreed that I can call Mayo and see if they will take him. He said he tried before but they said they couldn't. Since he is still seeing the kidney doctor at Mayo, I am hoping they will take him. Do any of you have any insight into them approving of a patient?

Sue, Volunteer Mentor | @sueinmn | Sep 9, 2021

In reply to @maryflorida "He just agreed that I can call Mayo and see if they will take him. He..." + (show)

Mary - I'm not sure what the process is, maybe @colleenyoung has a suggestion for him
Sue

Colleen Young, Connect Director | @colleenyoung | Sep 9, 2021

In reply to @maryflorida "He just agreed that I can call Mayo and see if they will take him. He..." + (show)

Hi Mary, I would start by calling the Mayo Clinic where he is a patient. You'll find all the numbers here: http://mayocl.in/1mtmR63
Ask if he as a current Mayo Clinic patient with nephrology, does he need to submit a new appointment request by phone or through the patient portal. I would also ask if it is better in his case to have his doctor submit the referral for pulmonology or to self refer.