Shell shocked

Hello,

Having been diagnosed with PBC for about 8 years I've had regular LFTs done and a couple of scans which showed no scarring or fatty deposits so I suppose I've been coasting along pretty much in denial about having this condition.

After my last annual meeting with the consultant he declared himself satisfied that my levels (though not perfect in all cases) were holding and not giving him any concern - especially as I have never experienced any itching or signs of jaundice.

He suggested tho that I have another ultrasound and fibroscan as my last one was a few years ago.

I had both today and when the doctor had finished I asked what she had seen and she said obviously my liver was cirrhotic and I should see my doctor to discuss the results.

I felt stunned and asked her how badly scarred it was and she just shrugged, so I asked were we talking bad enough for a liver transplant (expecting her to say 'God, no!) but she just warned me that an operation like that could also be deadly.

So I felt even more shaken but asked her as calmly as I could, on a sliding scale, how bad would she rate my cirrhosis and she replied 'mild to moderate ' but I should save my questions for my doctor.

I left the hospital feeling for the first time since diagnosis that I've been given a death sentence and just had to share my experience and feelings with you lot as you're the only people who really understand how this feels.

My final question to her was if there was anything I could do to alter this condition and she said 'No' except avoid overloading my liver with toxins as much as possible.

16 Replies

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  • I'm very sorry to hear this. Please know that you have all of our support. Also, please talk to the liver specialist before jumping to any conclusions. If your liver function is normal, you likely don't need a transplant. And the transplant success rate in PBC patients is over 90%. It's a setback, but it's not a death sentence.

  • As Kevin says, try not to jump to any conclusions until you have spoken to your consultant.

    Give us a call, Wingding, and we can talk this through with you.

    Yours,

    Robert.

  • Awful knews honey look after yourself. Sending you a big hug. X I've cut the fat and booze & watch the sugar constantly. But I have no idea what's happening in there as they just monitor my bloods just makes you think. Take care. X

  • That's just not good and so badly handled by hospital. Like you I am in denial. But then go to the other extreme and have night mares. Especially as the medical centre don't know what to do with me.

    I do hope you don't have long before seeing your specialist and have everything explained.

  • I'm sure your consultant will suggest a CT or an MRI if there is concern. I can just imagine how you feel. Please let us know what your Doctor says xxx

  • Am so sorry to hear you need and horrified at how badly it was handled. As others have said don't jump to conclusions before see specialist it sounds like the person doing the scan does not know much about PBC and what can be done. Take heart there's abig group of us all with you. Keep us all posted. Wispa123

  • I too, as others are sorry to hear this, but agree that you should speak to your doctor asap. It causes one to pause though as I coast through this disease realizing that I am never sure what exactly is going on inside! Sending positive thoughts & hugsssss! Btw, I am in Canada & would be interested in knowing who else is. Have a good day everyone😃

  • Hello Wingding,

    You are feeling exactly as I did about 2 years ago when. after going along steadily mostly thinking that there really was nothing much wrong with me, I was told that my liver was quite cirrhotic and that varices were developing. A referral to QEBirmingham as no-one in Wales was sure of my biopsy results only compounded my fears. The first consultant (I see a different one each time) felt that 2 years was maybe all that was left to me. The shock was enormous! BUT- I'm still here- 20 years on from first diagnosis and feel no worse now than before. The main problems stem from beta blockers (for portal hypertension) which made me feel as if I were fighting against a deep current (Propanolol -stopped) and now exacerbate my mild asthma (Carvedilol- reducing). It could be years before you need a transplant (if you ever do) , so enjoy your life. Tomorrow won't necessarily be any worse!

  • hi - just like you I am in denial as my blood tests were not changing and I do not have any symptoms. If your consultant is any good he will explain the scans to you and give you your options. I am sure everything will be ok.

    Good luck

    Goksel

  • I know from experience how scary it is to be told this and that blood results are not always an indication as to how much liver damage there is. I have cirrhosis and varices but blood results in my case didn't indicate this and wasn't discovered until I had an endoscopy and ultrasound. On a positive note It may not be as bad as you are thinking and it is better that your consultant is now aware so that appropriate steps can be taken ie betablockers if necessary. If your bloods are stable and you don't have astites or other complications then you shouldn't need a transplant. Take care. x

  • Wait to see what your Dr. says. If the cirrhosis just started or is even in a moderate stage it could stay that way for a long long time. I was diagnosed 4 yrs. ago not knowing I had PBC and was diagnosed at Stage 4 because there was cirrhosis. I have not been getting any worse. Fatigue, itching all are under control. MRI's, US all the same. You can be at Stage 4 for the rest of your life as long as you take all meds, all precautions and get checked regularly.

    The word cirrhosis is scary but it doesn't mean it's time for a transplant. When I heard I was just about saying goodbye to everyone I loved and now I'm the one who I think will stay here the longest.

    Stay strong and know people care about you...

    Callye

  • Thank you all for caring and for your words of wisdom and sharing your experiences and thoughts. It really does help knowing such support exists. What a special group of people you all are! X

  • Hey WingDing. Oh my goodness, what a terrible experience for you. It seems very much like the health care professional you encountered was very insensitive to your situation and probably has no idea the impact. If I were in your shoes I would request a follow up appointment asap with your specialist. They are the ones that can provide accurate an factual information. For me this is the most helpful thing when I'm feeling scared. Initially, My experience was similar only my health care professional was very compassionate but did not know a lot about PBC. It left me feeling like I had been given a death sentence too. Once I saw the specialist I felt so much better.

    Thinking of you.... Good luck with everything .

  • Hi Wingding,

    By reading the above replies - yes we are here and we do care about you.

    What I know from 21 years with PBC but no transplant ( though first I was told it would be within 2 years) is that there is NO point worrying or stressing until you get the full picture.

    Your reaction to any news good or bad is up to you. This is a tough love statement but if you want to learn more about ACT therapy or Cognitive Behaviourial therapy it may very well help you deal with things. I bought a dummies guide on it. Fantastic! It certainly has helped me anyway.

    Calm your mind and do daily relaxations , or get really busy till you see your doctor. Do as may fun things as you can and don't isolate yourself. Whatever you think about grows - good or bad. So why not divert your attention to the good things in life, no matter how small or half full the glass may seem at times. You still have something in the glass. And that's great news.

    Said with love..H

  • Hi Wingding

    I was shocked reading your post, but then reading all the replies from your PBC friends, it became clear that we really should not assume the worst.

    Wishing you all the best.

    Sending you big hugs.

    Xx

  • Hi Wingding, I know exactly how you feel as I am going through the same thing, I know how hard is to keep your mind off of it, and how easy is to let terrible thoughts creep into our mind, but remember what they have said to you, wait until you ralk to your doctor, then remember that we are here for you! Sending you a big hug.

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