Hi everybody. It was a pleasant surprise finding out about this community and I’ve enjoyed reading a lot of the posts so far.
About me: Dad, Husband, Pilot. My guilty pleasures include reading comics and eating ice cream from the tub.
As for more of an introduction, everybody in my family is more concerned about my diagnosis than I am. Maybe it’s because I’m putting a lot of trust in my doctors to figure out and fix whatever is going on, or maybe it’s because if I start displaying worry then it’s just going to get worse for everybody else. Either way, I look at is as them being concerned about my welfare and can only be grateful.
Anyways, looking forward to networking with folks on here.
Anybody on here that has been separated from the military for having PSC?
Sam,
Welcome to the group. Glad you found us. We are here for you to support you in any way we can regarding PSC. I trust you are now in the care of a good transplant hepatologist who will follow you through this journey. I encourage you to take your spouse or trusted friend/family member with you to each appointment especially as the disease progresses. You need an advocate to be with you especially on those days you are just not feeling well or thinking clearly.
I can understand your family being rightfully concerned about you. As you go through this journey, educate them along with yourself. You need a good support system in your family as this thing progresses. You’ll find they will bring great comfort to you when you are just feeling poorly. I worked throughout all my time with PSC prior to transplant which is not the case with every patient. I did come home most days give out and would rest till supper at times. Just get in harmony with your body when it tells you to slow down, but don’t let PSC stop you from your dreams, plans, etc. Live life to its fullest!
Do let us know if we can be of help.
@Longroadahead Thanks for the reaponse. I am pretty sure that is the direction I am heading. How long did his MEB process take? I’m still waiting for my hepatologist to determine IBD or any other AIH so the process hasn’t began for me yet.
@fcmmark I appreciate the advice and the offer for help. My wife has been doing a good job with research and coming along to appointments when she is able to. Thanks for the welcome to the group!
Hi Sam,
Many years ago I was separated from the military for Ulcerative Colitis. Right away I was put on long-term medication. In the process, my Liver Function Tests were later checked to see if the UC medicine I was taking was affecting them. At that time (1994), my APT was especially elevated, along with various others. PSC was confirmed via ERCP, but the experimental treatment was Ursodiol (Actigal) at the time. Been on it since. VA seems to be good about treating my UC and PSC as closely related (or perhaps the same?) disease.
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Sam.
Your comment that your family was more concerned than you struck a nerve. I think that it is often harder of the caregiver than the patient. I saw that with my wife. Like you, I had trust and faith in my docs-my wife had to deal with the thought that the health of her teddy bear was disintegrating slowly. That is the tougher road to hoe.
I liked your comment about ice cream. When I was losing weight, I took that opportunity to eat a boatload of ice cream, guilt-free, although not in a tub. To each their own.