Hi guys, after recent tests it turns out I have Liver Cirrhosis. I am on 5mg Prednisolone and Ursodeoxycholic Acid and Azathioprine 100mg. I am concerned as I have 2 kids, one is just a small baby and the yellowness in my eyes concerns me as well. I feel tired and I gained a bit of weight...I feel people near me don't understand my concerns and they feel like me cheering them up as usual. But I have days when I feel like I don't want to see anyone, I have no idea what doctors think as they only tell me so much...The worse is that I have no time to control anything. People around me are being selfish and at work is very hard to cope. My mum is looking after my kids and it is very painful not to be able to look after them. I feel doctors are relying on me to tell them I am ok. I need advice. Does anyone feel the same?
Autoimmune Liver Disease No one to talk to... - PBC Foundation
Autoimmune Liver Disease No one to talk to...
Do you have pbc and aih both? How old are you ?
By reading your statement it looks to me you have lots of thing going on in your life..you are panicking and your life is chaotic..you need some one who can listen to you and understand you.. why don't you go for counseling?
First thing you need to focus is in your treatment then other stuff..🙏🙏🙏💕
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they say it is what is called autoimmune liver disease. I thought I could keep things under control, by being positive but when things put me down I see the real picture and it is frightening. Do you think counseling helps me cope? did it help anyone you know? what are the things they can help with? Many thanks
Hello, try to not freak out, it is really bad for us to stress. Here I am telling you not to stress, but I myself am stressed to the extreme lol. Maybe try some therapy, I recently started due to extreme depression. Im 43 stage 4 PBC between stage F3-F4 cirrhosis with grade 2 varicies. Plus a list of other issues with my thyroid & fibromyalgia. My youngest daughter will be 9 in three weeks, they grow fast don't they😉. My parents are older but help when they can. You will soon learn to listen to what your body is telling you. I was diagnosed in 2012 at stage 2. You can see that my pbc progressed a bit faster than most. Over the years I know when I've pushed myself too much. Take things a day at a time, take short naps through the day & eat as healthy as you can. I tend to keep my sodium under 2000mg daily as requested by my GI & university heptologist. Make sure your specialists know the ins & outs of PBC. I pray for us all as often as I can. All we can do is take deep breaths & live our lives as we can manage. Hope my words help calm you a little anyways😉.
Stay strong❣️
Shannon
Shannon,
thank you for that, my second child is 3 months old:). I don,t know what stage I am on. I was born with...never had a pint in my life. I really put myself down and I am sometimes mean and judgemental. Are you practising any sports?Are you working at the moment? Are you keeping a diet apart from low sodium? God bless us and help us see our kids grown until they don't need us anymore.
Thank you Adele83, I believe I've had this since I was in my early adulthood. Had my gallbladder removed at 19, then was misdiagnosed with hep C at 26. Went thorough six months of awful treatment for that, which made me very sick. Just to find out down the road that hep C was never the issue, it was PBC. I was a social drinker but that has absolutely nothing to do with ending up with PBC. I've not drank in close to four years. I always make it a point that it's non alcoholic cirrhosis & non alcoholic varicies explained to those who ask questions. For example when I've had to end up at the ER the attending physician was always sceptical about how someone my age, who no longer drinks, ends up with cirrhosis. I no longer work but am in the middle of appealing my disability claim. They failed to request any health info from my university heptologist who is my main liver specialist. Without his info it's as if I've made up most of my diagnosis. I tried without a attorney, this time I've hired one. They wouldn't have taken my case if they didn't feel I deserved disability. I do not play sports but really enjoy watching my youngest girl play softball. My oldest daughter is 19 & recently graduated high school. She played soccer for 12 yrs, I miss watching her play. But Im so proud, she will be attending the same cosmetology academy that I went to in November. My diet isn't a strict one besides for the sodium intake. I still like having a nice steak here & there. Plus I have a wicked sweet tooth. Like my heptologist says, eat sweets & red/fatty meats in moderation. I had to resign from my job with our school corporation at the end of April due to a weight lifting restriction, plus I have so many appointments & procedures I have to have to keep going that I wouldn't be able to keep a job. I like to think of it as having more energy to do the things at home that need done, plus able to spend time with my kids. When I did work I only worked from 10:30 a.m-1:45 pm. But was such a fast paced job that I hurt so bad at the end of my shift I had no energy to do anything the rest of the day. At this point I must choose my battles daily. Go to butyoudontlooksick.com & read the Spoon Theory. The woman who wrote this suffers from lupus. She is trying to explain to someone who's healthy the life of someone like us. It truly hits home for me & other PBC'ers as well. I cannot read it without crying. I am no longer the same person I was just two years ago. I hate how I am now, not being the energetic, spontaneous person I once was, but I try to do the best I can with what I have to work with. I also remind myself daily that the good Lord gives his strongest soldiers the toughest battles. All we can do is fight😊.
Stay strong❣️
Hello again,
Thank you for referencing that website. It is funny indeed :). Why did you have your gallbladder removed?
I am on maternity leave now and left my job at the bank. I also had preeclampsia. I could not keep up with the others and I hid the reason from my boss. I said that I was pregnant and tired. I am thinking that I need to find another job to look energetic but not look like I over do it. All for a few months. Then off for a month or so to recover.
This pattern is now a habit and I hide it as much as I can. No one would hire me if I was open and straightforward. I have jaundice in my eyes and I can't look at people straight back in the eyes as they would easily see and know something is wrong. So I hide my eyes. The color of my skin is yellowish but people say I have got olive skin so I am happy with that. The AILDs usually get worse after delivering the baby - doctors say -, hence why not feeling great, I have moments when I feel I am passing out. I am breastfeeding too. I am restarting my hepatology appointments in October and I am doing bloods meanwhile.
I really need to get some sleep, going next to my little ones. Write me what you are up 2, medications, appointments, life events... Take care my friend! Good night!
Good Morning...wow! lots to deal with! I didn't get diagnoses until I in my mid 40's...I remember the world crashing in on me then. Counseling was able to give me tools to use to get out of my head and to stay in the day. I turned to Metaphysics and deepened my spiritual belief system. When I am in acceptance, I seem to do ok. When i am in my own will, I suffer. Much softer to know this is all part of my journey. You helped me today with the reminder of how scary this can be. All will work out the way it's suppose to without you having to tear the boat
Update: Thyroid cancer surgery and concerns due to PBC
Fed up with my family!
Adderall or Ritalin for brain fog/mood stabilizer and fatigue
Lab Values and Fibrosis 
PBC and Cholinergic Urticaria
