Hello everyone. I just became a member yesterday. As my profile says my husband is the one suffering with PSC. When he was first diagnosed we didn't really know what to expect. Our doctor said it could be years before he has any issues and he really emphasized more of flu-like symptoms that he could have with increased narrowing. Well 1 month ago he became very sick and VERY yellow. We were freaked out. Was it due to narrowing of the bile ducts, was it the little ones in the liver or the big one outside the liver, was it bile duct cancer, ect... We were completely caught off guard. We have 3 young children (ages 1, 3, 6) and we farm/ranch (this keeps him very busy) and so this was really hard to deal with. We see a gastroenterologist who trained at Mayo clinic (which I hear is a big PSC center) so that gives us some comfort, but we still have no idea about anything. Our doctor answers all of our questions, but with this disease being so variable we just don't know what to expect.
I know my husband is the one going through all this, but I am the one who has to sit back and watch. I am tired of having to watch him lay in a hospital bed, get IV's, be poked for bloodwork, ect. I wish I could take it all away from him. He is so afraid of having our children watch him be sick and I am so afraid of him being sick. I just feel like the weight of the world is on my shoulders; and of course I feel guilty for feeling that way when I am not the one sick.
My husband is also having a really hard time staying positive. Actually, he is so negative. He is so angry, bitter and depressed about the whole thing. I have tried empathizing, being tough, being a little cheerleader for him, but none of it helps. How do you keep positive?
I could go on forever and ever, but I won't. I am so grateful just to have a place where others understand. Thank you!