Have IPF and outside medicals no one else knows

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Hello all I was diagnosed with IPF 20 months ago. Am married and have grown up children. A t the time I decided to keep it to myself and told family there was a problem and consultant was just meeting me regularly to ensure I didnt get worse. Last three visits have shown no deterioation . I am on OFEV  with no side effects. Maybe my family know but they just ask how I am, which is what I wish for.  . I am trying to keep my life as normal as possible and have gone on regular holidays etc and am really happy that no one is fussing. . I have spoken to my consultant and he said it was up to me who knew at this time and suggested family probably know and accept that I dont wish to have my life as normal as possible. I am also making every effort to have all my affairs in order for my lovely wife should something happen quickly to me. Any suggestions or ideas. I am 66 years . 

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  • Posted

    Sorry i made an error  should have been "accept that I do wish to have my life as normal as possible. 

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  • Posted

    John: Sorry to hear of your diagnosis and while I respect your decision to not inform your family, I do not agree with it.

    I was diagnosed over 5 years ago and told my family about it immediately.  They haven't treated me any differently but by informing them it gave them the opportunity to learn about the condition and what they might expect.  If your condition deteriorates you will have no option but to tell them and at that stage they are suddenly thrust into a situation they were not prepared for.  The decision is yours but I feel they would want to know and should be told.  Good luck.

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    • Posted

      Hello Bob 

      Thank you for your reply . I did not have as much trouble accepting my illness as I have trying to get up the courage to tell my lovely wife and family . I fear what I will put my wife through as all my children are well away from home. I know I will have to tell them and I hape I have the courage to tell them sooner than later My wife has lost the three remaining members of her family in very recent years and I really hate having to bring her more bad news. She is such a lovely person .

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  • Posted

    Hi John. I think Bob is right. And let me add this one bit that I am working through myself. Caregiving. If and probably when you do get sick IPF gets nasty as I have read and discussed with my doctors. I am in pretty good health myself considering that I am on O2 24/7 and am getting a nasty old cough back and have that fatigue thing a lot of folk talk about. Really though, I have no real pain in the classic sense. 

    But I anticipate this will all change. When it does, and I exacerbate, possibly more than once, I'll be headed for bed needing lots and lots of help. That will, no surprise, be my wife. So the two of us saw a doctor doing hospice and palliative care and talked about things. I expressed my fear of my wife having to deal with bed pans. I am quite forrified by that. Probably more than she is. Regardless, she and I are on track and getting emotionally prepared for the likely outcome. 

    So that's it. If you get real sick you will need real help from whomever - family irt seems. I'd suggest not springing it on them. I fear everyone will feel the worse for it. I want to say, "well, it's your life..." but it isn't true. There are others.  

    best,

    es

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    • Posted

      Eric  

      thanks for message  Iam trying to get enough courage to do so. i found it less difficult to accept my condition but fear telling her and my lovely family . I know I will get   her full support but as my children  are all living away from home I feel saddened for what Iwill be putting her through

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    • Posted

      Perhaps taking this task on alone is making this so hard. If your wife knows or uses your family practitioner that might be where to have this conversation with her. Or, if you are religious, your pastor, priest, rabbi, etc. could be great as she/he might come to your home. But talk to those like your doctor and spiritual advisor or (or a good friend) therapist first. That's the best I can think of. Is it possible one of your kids would be best to start the conversation with? Just a thought. es

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