Just need to vent

I'm just finding all this out in the last few months its very scary but I'm trying to keep it together. I have PBC stage lV Cirrhosis I just had an upper endoscopy I have Esophageal Varices Grade 1. I'm having another Ultra Sound on May 22nd. I went from a little stomach pain to all my joints hurting 24/7 nausea constant liver pain confusion forgetfulness. It's awful my whole life has changed in less than 5 months. Some nights I don't sleep sometimes I feel like I'm never awake. I've always been healthy and strong and now 90% of the time I'm in bed. The Urso gives me horrible headaches about once a week. I just found out I'm Diabetic, I have Lung nodules, Sicca syndrome, high blood pressure it hit me all at once. I'm sorry I'm feeling sorry for myself today, I just needed to vent...

30 Replies

  • You can vent to us. We all vent to each other. Did you join the Pbc foundation. You can ask a lot of questions they answer you in a timely manner.

    What country are in

    And how old are you

  • Just this one and thanks I don't have anybody to vent to. I'm in U.S. I'm 53.

  • Me too. 53 with two liver diseases getting ready to go through a divorce while starting azathioprine for remission

  • Wow, I'm sorry, that's bad enough without all the stress.

  • Hope all goes well for you

  • Thank you and for you to!!

  • I'm sorry that you have to go through this. There's quite a few in here that are in stage 4. They make a lot of diet changes. If you want to talk I'm here for you

  • Thank you I appreciate that. I'm here also.

  • Thank you. I'm hoping that yur ok. I know not to ask cause you'll lie and say I'm fine. Lol.

  • Let's just say, right this minute I'm ok 😊

  • But really are you ok tonight? I'm in Florida where are you

  • I'm in Ky. My daughter is in Miami!

  • I used to call it your ami when I was a kid lol

  • How long have you had Pbc for

  • Well I'm not sure I was diagnosed in February but my enzymes have been elevated for years.

  • How are you tonight?

  • I haven't had dry eyes at night since January

  • Hi, I'm sorry for you and I can understand very well how you fell...unfortunately, I'm on same situation :( Exactly how you say.... "I've always been healthy and strong and now 90% of the time I'm in bed"...but I try to not give up and I'm fighting every day with my new and awful present...Can you tell me, please how you know your stage of PBC (IV Cirrhosis)? I'm living In Romania and we don't have so many possibilities to investigate this disease...It will be helpful for me to tell me about what kind of tests you've done... I wish you a lot of power and positive thinking! Thanks in advance for your replay! Sorry if my English is not so correct...

  • Hello Katmin

    I had something called a fibroscan which showed the state of my liver also the blood results indicated this. If you cant get a fibroscan, they will do a biopsy..this is also an excellent way to find out how you are. Good luck

  • I've done fibroscan and result is IV, also...regarding biopsy...I'm afraid so much....My dr gave me a score named Child Pugh: 2minutemedicine.com/the-chi...

    and here, things are not so bad...I'll be 58 years old after 2 days...I have a son, a granddaughter 11 years old...and I'd like to live, to see her a doctor, as she likes to become....unfortunately, I'm afraid to not succeed....

  • My Dr did the Fibroscan and my result was 21.3 anything over 12.5 is Cirrhosis. Your English is very good. I also have Esophageal Varices and they come with advanced liver disease. I hope this helps you.

  • So sorry you have all of this.

    I, too, am stage 4. I am 67. Last year I had a varise bleed so if your consultant hasnt suggested it, do mention a betablocker, it gives some peace of mind and helps with this particular problem. I have had PBC for 22 years but only stage 4 for two years. The urso does upset my stomach but not too badly..its already is upset a lot of the time anyway....

    I find just pushing myself to do things helps....I know it can be hard but exercise, albeit, a small amount really helps. i also have fibromyalgia and back problems and lately a lot of missed heartbeats so off to the Dr for that now...' so life can be a pain. literally...but sometimes it all eases and everything is almost fine. Lets hope this happens with you.

    Keep writing on line..there are quite a few of us with Stage 4.

  • Thank you I wish you well!!

  • Prayers.....

  • Thank you!!

  • Believe us when we say you're not alone. I just turned 43 in March. Was diagnosed in 2012 at stage 2/3. The fatigue & the itching were crazy but my Dr just stumbled across it because my liver enzymes were extremely elevated. Was in the ER for something completely different. I was doing great, found a job I loved, with people I loved. Until about a year ago everything turned inside out. Went from stage 2/3 into stage 4 basically over night. Last May I woke up puking a lot of blood. Esophageal varicies have seemed to take over. That's how I found out about mine. Ended up in a step down unit of the hospital for six days, with a 2 pint blood transfusion & completely out of it. Welcome stage 4, cirrhosis. Muscle/joint pain, the fatigue had never gone anywhere, & the upper right quadrant (urq) pain is sometimes unbearable. Among other effects of this disease. Just recently had to resign from that job I loved so much due to a weight limit of 25 pounds (lifting can apparently cause the varicies to bleed).But we seem to push through. Always try to be positive. Look for your joy treasures in life to help you focus. Mine are my girls (18 & 8) & my to be stepsons (10&8). Take care & feel free to vent any time you need

  • I just turned 45 and also in KY. I am stage IV with varicies. I was diagnosed in 2012. I have also always been very healthy. It always keeps me asking what did I do to make this happen. My family also keeps me going. I have two boys 22 and 18. My husband is wonderful and couldn't do this without him. I have found that exercise helps with the fatigue and brain fog. Urso also made me feel terrible but after a couple months the side effects seem to disappear. It is scary and no one else really understands because we all look normal. This is a great place to vent and get advice. Please reach out if I can help you in anyway.

  • Another Kentuckian here - though I have lived in Australia since I was a child - seems there are quite a few of us here.

    Vent away RebeGarcia10, it not only helps you feel better (knowing you're not alone), but it also helps us (who have read and answered your post) to understand, and recognise, our own emotional upheavals - well, I for one, certainly do, anyway.

    I was diagnosed 28 years ago, on Urso for the last 20 years, and am now Stage 4 with most of the usual complications that go along with advanced liver cirrhosis. While the initial diagnosis of PBC was frightening (at the time little was known about it here in Australia) the confirmation (24 years later) of my having moved into cirrhosis stage was, to say the least, traumatic.

    Though I still have my moments of thinking "what's the point?" (read 'panic'), as I'm sure most of us do, particularly when some 'new' symptom pops up, I'm finding I can override many of those 'moments' by arming myself with knowledge. In other words, I will research the 'bejesus' out of any new symptom - but only from sites such as, the Mayo Clinic, universities, and medical institutions, NOT 'wellness' type sites, particularly if they are trying to sell a product/book. I can only speak for myself here, but I feel the knowledge I gain from my research affords me a sense of having some control over a condition that has no cure (at the moment, anyway).

    As I said at the beginning of my post "vent away" - we're all here to help and support each other.

    Take care


  • Hi! I'm in Colorado. I'm 62 and just diagnosed with PBC. I'm going next week for a liver biopsy. My goodness, I'm terrified! I haven't really had any symptoms though. Sometimes I am a little tired. I try to stick with a good healthy diet and exercise every day. I find it hard sometimes because this disease does not fit in with everything I thought I was.

    Do what you can on your good days and rest when you need to.


  • Thanks y'all for all your kind words and support. I love it here!! When you're new it's really scary!! I agree DianneS I research everything! I only look on Mayo clinic also!! Thank y'all so much and I to am here if anybody needs to talk!! 😘

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