Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 I just joined. My husband was diagnosed with PSC in 2004 and has been in denial about it since and wont take his ursidol and when he drinks its all weekend but he doesn't drink for more than a month but when he does he makes up for not. He hasn't passed a blood test for life ins since we have been married over 10 yrs. I am concerned and he seems oblivious to it like I am making this all up. He is 40 yrs old and has always been on the tired side but before understanding PSC I just thought he was lazy with no ambition. Thank you for reading this, sometimes I just am frustrated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2009 Report Share Posted February 6, 2009 >Wow, what a challenge. Has your husband been on this support site with you? Maybe if he reads some posts, he will see that there are very real symptoms and consequences of this disease. There's not a whole lot that can be done, but he is only hurting himself by at least not trying. He will learn a lot if you can get him to read some posts. Do you have children? Tell him that if he wants to be around for any children you have/want to have, remind him that he will have to start taking better care of himself. > I just joined. My husband was diagnosed with PSC in 2004 and has been > in denial about it since and wont take his ursidol and when he drinks > its all weekend but he doesn't drink for more than a month but when he > does he makes up for not. He hasn't passed a blood test for life ins > since we have been married over 10 yrs. I am concerned and he seems > oblivious to it like I am making this all up. He is 40 yrs old and has > always been on the tired side but before understanding PSC I just > thought he was lazy with no ambition. Thank you for reading this, > sometimes I just am frustrated. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Hi! I'm glad you found us. Your concern is evident in your posting and I hope your husband soon comes around and is able to face what is happening to you both. (It's a misnomer that PSC only affects the patient. Anyone with PSC or their families can tell you the disease affects us all.) It sounds like you've tried talking with him about your concerns. Is there anyone else who you could enlist, perhaps a religious leader or a close friend of his? I don't know how PSC was explained to your husband, but you may want to reinforce that while it is life-altering, it is not a death sentence. That he can still live and enjoy his life. He probably should give up the drinking as soon as possible for liver health and to prevent cholangiocarcinoma (although I'm not 100% sure there's a link to cholangiocarcinoma) but also because if he ever does need a transplant, he won't be eligible for the list if he is drinking. In any case, please know that even if your husband is not ready to talk to us about what is going on with him, we are here for you. You're a caregiver and your also living life with PSC and that makes you more than welcome and a part of the family so please continue to share with us, ask questions, whatever you need. If your husband does want to join us, he's more than welcome at any time and we'll be glad to answer whatever questions come up (at least the ones we can answer!) Hope tomorrow's an even better day! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Hi! I'm glad you found us. Your concern is evident in your posting and I hope your husband soon comes around and is able to face what is happening to you both. (It's a misnomer that PSC only affects the patient. Anyone with PSC or their families can tell you the disease affects us all.) It sounds like you've tried talking with him about your concerns. Is there anyone else who you could enlist, perhaps a religious leader or a close friend of his? I don't know how PSC was explained to your husband, but you may want to reinforce that while it is life-altering, it is not a death sentence. That he can still live and enjoy his life. He probably should give up the drinking as soon as possible for liver health and to prevent cholangiocarcinoma (although I'm not 100% sure there's a link to cholangiocarcinoma) but also because if he ever does need a transplant, he won't be eligible for the list if he is drinking. In any case, please know that even if your husband is not ready to talk to us about what is going on with him, we are here for you. You're a caregiver and your also living life with PSC and that makes you more than welcome and a part of the family so please continue to share with us, ask questions, whatever you need. If your husband does want to join us, he's more than welcome at any time and we'll be glad to answer whatever questions come up (at least the ones we can answer!) Hope tomorrow's an even better day! Sandi in VA Quote Link to comment Share on other sites More sharing options...
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