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I just found out that my husband has a pulmonary fibrosis

Posted , 5 users are following.

ZeldJesus0827
ZeldJesus0827

I just found out yesterday that my husband has a pulmonary fibrosis. There was an annual medical examination at their office so He then went to the clinic and got checked. The result was made last march 22, 2017 and up until this month, he had'nt had any symptoms and he even gained weight instead. My husband is only 25yrs old. I just can't believe He has that kind of illness. He told me He's okay and feels none of any symptoms of PF. What should we do?

0 likes, 3 replies

3 Replies

  • epictetus1939
    epictetus1939 ZeldJesus0827

    Posted

    Hi ZeldJesus

    Sorry to hear this news you must be very worried.   i suggest the following:

    First make sure the diagnosis is correct.  IPF can only be diagnosed fom a Hi Res CT scan and often a Lung biopsy is required. Does he have Velcro crackles?

    There are various flavours of IPF in my case it is slow moving.  I have had shadows on my lungs for 4 years and only got the diagnosis one year ago.  My Forced Vital Capacity (FVC) is 107 % and i only get breathless on exertion.

    While waitng for a certain diagnosis your husband should stop smoking, slim to ideal weight, eat sensible diet and do exercise.   The best treatment is Ofev which I take without side effects.

    Happy to answer more questions.   

    Brian

     

  • bob80691
    bob80691 ZeldJesus0827

    Posted

    Hi ZeldJesus:

    Very sorry to hear of your husband's diagnosie but like epictetus' reply, the first step is to be sure the diagnosis is accurate.  A CT Scan is a must and I also agree a lung biopsy might be warrented.

    I also was diagnosed over 5 years ago at age 73 but I do not exhibit the normal symptoms and I am on no medicatrion whatsoever.  I do take NAC which is a health food supplement and I think this has been very beneficial.

    So think positive and keep in touch. We are here ot help if we can.

  • eric87817
    eric87817 ZeldJesus0827

    Posted

    Hi,

    Yeah, learning you have IPF is quite a shock at any age. It sure took me by surprise. At 67 I am at the age where this is more common. It doesn't feel great to be common today.

    bob and epictetus suggest confirmation of the diagnosis. That is great advice. I think the CT scan is the best non-invasive test. A full on biopsy will get a culture for full confirmation, but recovery can be hard.

    There is a young women named Charlene Marshall with a blog called "Younger Than 30 Living with PF". It is worth looking into - after you are certain that is what this is all ab out. It is here: https://pulmonaryfibrosisnews.com[/b]/author/vicki-hartman[/b]/

    Other worthwhile sites, should you feel the need, are  Pulmonary Fibrosis News https://pulmonaryfibrosisnews.com/ and Team Inspire (I guess Google around as I can't get past my own login page).

    If you are sure of a diagnosis, you can follow the latest stuff on the primary meds: Ofev (nintedanib) which I am taking  with apparent success and Esbriet (perfenidone) which I have only read about.

    Finally, just know that there are a lot of us out here to "talk" to. This has been a great group for me.

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