Feelings of sadness with pbc stage 4

Hi all

Lately I have been feeling sad and angry about having cirhossis. My last endoscopy showed varices were hardly visable so no banding needed and no endoscopies for a few months (I had a bleed) . The future is not certain at all and at 67 I probably will be too late for transplant when I at at end stage as it seems to finish at 70. I have a caring partner but he is my only family and I dread something happening to him as apart from friends I would be alone. With a future of pain and illness.

I am not usually a sad person ..could this be just the prognosis or is it part of cirhossis!

It seems that with cancer there is so much help but with liver disease you are left alone except for consultant visits.

Can anyone understand how I feel? Sorry to sound negative.

26 Replies

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  • Hi Bobbycat

    Please don't feel you have to apologise for saying how you feel. This is a great place to vent and I am sure someone with more experience on here will have some fab advice. I think everyone is entitled to feel sad at some point and sometimes we need to do just that - be kind to yourself. Do something that pampers you, reflect but come back fighting. Take care

  • Thank you for your quick reply

  • I'm sorry Bobby, I certainly hope that you can feel better soon. How long did you have Pbc for?

    It's probably best to keep trying and not to give up. It's great that you and your partner have each other. Most people don't have anyone. Really all that you can do is try. I wish that I could say more but I'm learning myself

  • Hi Bobby.

    I Have just seen a Chinese health therapist and the emotions you are experiencing /describing are completely normal according to her and to be expected. It's your liver making you feel this way. All I can say is try to do at least one thing a day that you enjoy to bring in some balance to your feelings. Its always good to pamper yourself when feeling like that. There is a great saying"don't trouble trouble, till trouble troubles you" try not to dwell on what may happen and enjoy your man now. At least you can make some good memories still.

    I really hope you can find something to lift your spirits soon. Also review all your medications as I have over the years been on meds that lowered my spirits and make sure your vit b12 and d are up to scratch because being low in either of those can make you feel worse.

  • Thank you for your kind reply

  • Hi, thank you.

  • So sorry to hear you are going through a bad time Bobby. My counsellor friend says you grieve for your lost health as you grieve for another person. Anger and sadness are part of that grieving process. I am 69 and am unlikely to get a transplant if I reach that stage so I completely understand how you are feeling.

    I have learned it is best not to think about Pbc much because it makes everything so uncertain but focus on the good things in my life and one of them (my grandson) wants us to do some painting 😃. Keep in touch and keep smiling through. Diane x

  • Thank you and I understand what your counsellor means. Enjoy your painting ....

  • I have not been on here for awhile as I went through just what you describe. After seeing a second transplant MD, I was told not only do I have PBC but I also have Hep C Genotype 2b. Of course my first question is can I get a pill to treat that Genotype. While there is one available I will not be able to get treated BC of PBC. They also discovered tumors on my spine and adrenal gland while giving me a MRI. I'm 42 and go from crying uncontrollably to screaming at my only two supporters. I'm looking into Yoga, and as hard as it is when the PBC thoughts creep up and the why me I start to journal. Even if its letters I want people to read years from now. Please stay in touch I can give you my number if you want. I'm also taking one task at a time. I'm going today to my primary and getting scripts for these tumors to be tested. Xo

  • Hi Ter74

    That is a lot to cope with. I see you are thinking of yoga, great idea. I wonder have you ever tried guided meditation. I have just started this using You Tube and my mobile phone. PBC can bring a person very low and at the moment I am finding the guided meditation promising, it has not dulled the itch but my mood is better.

    best wishes

  • You have a lot to deal with and at a younger age. the journal or letters sound a great idea. Are you able to do much in the way of exercise or work? We can keep in touch here I think..All the best, and please do post how your results are.

  • 51 and know how you feel xx

  • Thank you

  • Funny I decided to come out here today. I was doing so well, diagnosed three years ago, been on URSO, told I was stage 2, so probably going to be living a long time without need of transplant. So I've been going like a house on fire with my bank job, stressful as it is, I enjoy it. But then my body reminded me of what I have. I also don't have a thyroid due to cancer and now I'm having breast symptoms that make me wonder if that is my next hurdle. I had a whole day of things to do today and I had to stay home and change my plans. I'm 47, will be 48 in two months. Its hard to explain to people why I can't do things others can. I feel horrible right now, my liver feels huge, having pain in my shoulder blade, and my belly was so swollen last night I looked like I was pregnant. I know my liver is either flaring badly or has gotten worse. I see some doctors in April, but I know they will just tell me they can't do anything. I've been feeling depressed and upset and I thought it was stress, but now I know that it was probably this all along. I am just worried that I will be told I have breast cancer too. If I have that, no way I will ever get a transplant. I already had thyroid cancer but it was handled completely with surgery. But breast cancer, I know my liver would just not be able to hold up to things. All the surgeries I have had in the past two years I am sure haven't helped. I know you can have bad symptoms at any stage, but I worry. So I get where you are coming from. I'm not at stage 4 (that I know of), but it just plain sucks.

  • You seem very strong....and hopefully the PBC wont get worse........isn't it tiring having to rearrange things and explain why especially when you are used to a busy life. All the very best.

  • Hi @bobbycat

    I am 66 this year, have no family of my own and also not usually a sad person however I do find that this PBC has a lowering effect so I do understand how difficult it is to put sad thoughts to one side.

    I recently joined in with the PBC Foundation's webinar sessions - one of those sessions talked about the benefits of guided meditation and visualization in addition to the benefits of exercise like walking, dancing or singing which apparently release those all important endorphins. I have only just started getting into the meditation but I think I am noticing a benefit. I do drop off to sleep whilst listening to meditation at the moment which is a good thing for me. In case it is of interest to you I go to You Tube and choose a voice I like and then listen through the headphones that came with my mobile phone.

    Not sure where in the world you are but if you are in the Northern Hemisphere spring is on its way and that always cheers me up. Hope it can do the same for you.

    best wishes

  • Thanks. Yes Spring is almost here, garden full of daffodils and hyacinths...lovely. If it is any consolation I had PBC second stage for 18 years so it doesn't move ahead too quickly usually. I have done mindfulness and I should resume with asap!

  • Do they tell you in the UK that you can't have a transplant in your 60s? They don't say that here. I have been told that if you have cancer once you may never get it

  • Hi, no I was told cut off age 70 and you have to be as fit as is possible and be also very ill.....I am not at that stage yet.

  • Here in Australia the cut off age for a transplant is 70 - I'm not sure about the 'cancer' thing though, I haven't heard/read anything about that.

  • I can, bobbycat, I'm stage 4 and turned 70 last year, so no transplant for me. Though I do get sad sometimes, I experience more of a sense of inevitability, than anything else.

    You have been given some very good advice from many of the members here, so you have a range of things to try - but I would also suggest you speak to your specialist about the possibility of you experiencing bouts of Hepatic Encephalopathy, this can cause 'mood swings' etc.

    webmd.com/brain/hepatic-enc...

    Hugs

    Di

  • Hi, when I get to see him I will ask, but I think it is not HE, but an accumulation of many things in my life and the fact I was always very active and I see that going more and more. I remember you mentioning you were not able to have a transplant sometime ago ..but you had a relative that did? How is she? thank you for reading my post and answering.

  • Yes, my cousin, who was diagnosed the same year I was, had a transplant a couple of years ago and she is doing very well now.

    In fact she and her daughters are 'doing' New York as we 'speak' - they all live in Kentucky, so the 'going to New York' is being plastered all over Facebook in pictorial form. Lol.

    I hope all goes well for you ;-)

    Di

  • In the US the tumors were the first thing all three liver specialists here in Philly said were the next step in my treatment plan. If malignant that of course changes my treatment plan and no chance of being placed on the list. So far the adrenal tumor, while it is growing, I'm told once my hormones are back in order I can have an adrenalectomy. What is bothering me is the fact that the US will not even consider giving me the anti viral drug for HCV Genotype 2b and I know its causing me to become sicker faster. The drug has a $400 off program for people with commercial insurance. I was out on workers comp while in corporate banking when all of this was discovered in 2014. My Dr kept me in work with accommodations but I couldn't do it anymore. I would be stuck in the bathroom for 45 mins, running to vomit out of nowhere and finally when I realized all I did was work sleep then work and sleep I took the advice of my Drs and family and am waiting for a SSD decision. Thank you for the YouTube meditation idea. I also picked up a coloring book with markers from the dollar store. Sounds crazy but that with some good tunes= a happy Terri. Xoxo

  • So sorry to read this :( my heart goes out to you and your husband ... this has got to be so difficult. They don't do transplants after 70? I didn't know that ....

    I'll be thinking of you !!

    Rebecca

  • I didn't know there was an age limit I thought it dependent on prognosis after transplant.

    Treat yourself, do something impulsive and try to think positive, really think it makes your health better!

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