saiyukifg
08-09-2007, 04:35 AM
Is anyone else here that has or knows something about Primary Biliary Cirrhosis? I am at stage four of the disease and have esophogeal varices which severely limits my ability to exercise or be physically active.
I would like to talk to someone who knows something about where I am. The last place I found was rather unhelpful with information. No one was at my stage with my complications. I guess I am looking for a common thread with someone.
I would like to talk to someone who knows something about where I am. The last place I found was rather unhelpful with information. No one was at my stage with my complications. I guess I am looking for a common thread with someone.
Sponsor
1BadLiver
08-09-2007, 08:31 AM
Hi there. Two months ago my doctor told me I was at stage 3-4 liver disease. I also have esophogeal varices. I guess they go hand in hand. I asked him if I could live for "years" at this stage and his reply was "you can live for DECADES." I'm only 46 so I certainly hope so!
The limitation on your physical activity is to keep your blood pressure down. I don't have high blood pressure, never have, but In my case I have to worry about stress. I'm on propananol twice a day (BP meds) and I've got xanax to take when things are really tough. I don't take it every day but it's kinda a "rescue" med for me. It certainly calms me down. I'm the primary caregiver for my mom with Alzheimers, have a teenage daughter and a 21 yr old pain the the butt son that recently moved back in! So you see.. stress is my issue. Of course I can't have a good stiff drink at the end of the day so it's xanax!
What meds are you on? Do you have routine bloodwork/ultrasounds, etc. I have blood drawn every 3 months and an ultrasound every 6.
Good luck.. lemme know.
The limitation on your physical activity is to keep your blood pressure down. I don't have high blood pressure, never have, but In my case I have to worry about stress. I'm on propananol twice a day (BP meds) and I've got xanax to take when things are really tough. I don't take it every day but it's kinda a "rescue" med for me. It certainly calms me down. I'm the primary caregiver for my mom with Alzheimers, have a teenage daughter and a 21 yr old pain the the butt son that recently moved back in! So you see.. stress is my issue. Of course I can't have a good stiff drink at the end of the day so it's xanax!
What meds are you on? Do you have routine bloodwork/ultrasounds, etc. I have blood drawn every 3 months and an ultrasound every 6.
Good luck.. lemme know.
saiyukifg
08-09-2007, 09:11 PM
I am on 1500 mgs of Urso, 60 mgs of Nadolol, 50 mgs of Imuran, and 20 mgs or Prednisone.
I've been diagnosed with a probable underlying autoimmune hepatitis and I've bled twice due to varices. The first time was in December which led to my diagnosis of PBC. I am also going into Portland, Oregon on the 13th for a liver transplant evaluation. I get blood work monthly and an ultrasound every three or six months. Other than that I see my specialist every three months.
My doctor seems to be more concerned about me bleeding again rather than liver failure. If I bleed one more time I have to have a surgery to redirect the blood flow from my heart to my liver.
I've been diagnosed with a probable underlying autoimmune hepatitis and I've bled twice due to varices. The first time was in December which led to my diagnosis of PBC. I am also going into Portland, Oregon on the 13th for a liver transplant evaluation. I get blood work monthly and an ultrasound every three or six months. Other than that I see my specialist every three months.
My doctor seems to be more concerned about me bleeding again rather than liver failure. If I bleed one more time I have to have a surgery to redirect the blood flow from my heart to my liver.
1BadLiver
08-10-2007, 01:15 PM
I guess I should consider myself lucky, so far. They suspected I may have bled but when they did the endoscopy they said the veins were huge and there could have been a little "leak" that had healed itself.
Good luck with everything.. keep me posted about your trip to Oregon.
Good luck with everything.. keep me posted about your trip to Oregon.
saiyukifg
08-10-2007, 04:52 PM
I actually live in Oregon, so it's only a 60 mile trip one way. I'm only 21, which is what makes me so mad about this whole thing since the majority of PBCers are over 40 before they're very far into the disease. It's rare for someone my age to be at stage four. =_=