Sometimes hoping for the best just isn't enough

Dear friends,

I haven't been here very long, but I have met a lot of very decent and caring people. I am eternally thankful for your friendship and I value your collective wisdom beyond words.

A few weeks ago I had a fibroscan test done. It is used to determine the amount of scarring {cirrhosis} on your liver and determines the stage of the damage {stages go 1 thru 4}

I spoke with my doctor a few minutes ago and he told me I am stage 4. End stage. Time to put me on a transplant list and/or search for a living donor who just happens to be a perfect match to me.

I am at such a loss right now. Don't know what to think or how to feel.

I am not a drinker, I never have been. This is probably due to taking pain killers religiously over the past 25+ years. Who knows?

I am going to go lay down, I was up all night, not a wink of sleep. Insomnia is not fun.

hugs to all of you

~Sha

28 Replies

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  • Very sorry to hear about that.

  • Hi Sha. Hope you're resting now. Anytime (24/7) you need a little extra support, there is usually someone about on here. Gentle hugs. :) XXX

  • So sorry to hear your bad news must have come as a shock to you. It is amazing how many people have liver problems who are not overweight, not a drinker and have taken care of themselves. It actually makes me mad that one of my husband's relatives drinks like a fish and smokes like a volcano yet managed to recover more or less completely from liver damage caused by alcohol it seems totally unfair.

    There seems to be alot of evidence stacking up now about the long term use of painkillers causing liver damage but there is little alternative for many people who can't manage life without them.

    Insomnia (I suffer from it as well) is doubly awful when you have received bad news as you don't get any respite from the worry. I will pray that a solution one way or the other comes along for you. When you have the energy let us know how you are doing.xxx

  • Lucky for me the insomnia came before the diagnosis. LOL

  • Oh Sha so sorry to hear this sweetie, It probably is all the meds, oh bless you. It must be such a scary time for you. There are so many ways they can do a transplant these days. And I pray you get one quickly. Please rest. Please feel free to pm me anytime, if you need s chat. Take care and rest. You are such a kind person, you don't deserve this. Big soft healing hugs, floating their way across the pond Hun xxxx

  • You almost made me cry ~love and hugs~

  • Oh sorry, wasn't my intention. Xx

  • Thinking of you. Pm anytime.

  • Sorry to hear this. Stay strong..thoughts and prayers to you x

  • I'm so sorry to hear that you must be in total shock, my thoughts are with you , be strong

  • Ow Hun I'm so sorry to hear this, if u fancy a chat please feel u can message me and I hope u can get some sleep

    Love sue xx

  • Hi

    I am so sorry

    try to get some sleep its come as a shock

    do you have someone you can talk things over with

    Life's not fair sometimes but somehow we deal with what ever life throw at us

    Sending you a big hug

    I wish their was something I could do

    anytime you need to chat we are here for you

    xxx

  • saying Sorry seem so in adequate at a time like this but like all your friends here I truly am sorry {{{hugs}}} xx

    Mo

  • So sorry to read this. Best wishes to you and your family.

  • Oh Sharon I'm so very sorry to hear this I hope you find a donor .I know how you feel I have fatty liver and I don't drink never liked it.Dont give up yet I know it's a total shock but all is not lost ,get on the transplant list or have you siblings who could help .

    Please keep in touch don't be alone at this time ,understand you must be feeling quite unwell so come on when you can we are here for you .sending a cyber hug and much love 🤗🤗😇🙏🏻

  • I'm hoping for the best for you Sharon, such sad news hopefully you'll find a match and soon. Good night. Chris. xx

  • Hi everyone,

    I am reminded of my friend Pete. Pete was married to another good friend, Rick. They were such a fun couple. And Peter had a sly sense of humor. [one might call him naughty].

    Peter had type 1 diabetes. He had already lost a few toes to it, He was having a terrible time with his legs a few years ago, so much pain and weakness too. He was on and off dialysis so many times over the years.

    Peter needed a kidney and as fate would have it a young friend of Peter and Rick's died in an accident. His mother immediately made arrangements for a kidney to go to Peter, they said it was a perfect match...The surgery was uneventful [thank you] :)

    About 10 days in Peter's body showed signs of organ rejection. The surgeon had to operate again and remove the now diseased kidney. That was such a sad day. After that, Pete went in to a slow-motion downward spiral. I don't think he ever fully recovered. A few years passed and he was about to lose his lower legs. He got sick and weak and I really believe he was so unhappy that he just did not want to "be" here anymore. It wasn't very long after that, Pete passed quietly. His memorial service was very touching and funny too. Peter is missed.

  • Hi Cape_Cod_Sharon

    I really am so genuinely sorry to read this my friend and my heart and thoughts go out to you. I want to sincerely wish you all the best of luck and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Long term use of medication can cause undesirable effects. Part of my regimen is regular testing for kidney and liver function. I don't really notice, as it comes in with the other battery of blood tests :(

    Alcohol is not the only cause of cirrhosis - or any other liver condition.

    I hope you get some sleep - anxiety wont help, and I really hope you get the treatment you need. Aside from donor availability, I gather its not easy in the States?

  • I'm so sorry you've had this awful news.

    I can honestly say I had no idea pain killers could do so much damage ( I knew they could hurt the stomach) so will pass the information to my daughter who has frequent migraines.

    You have the support of everyone here, hoping , wishing, and praying for a successful donor for you.

  • Hi

    So sorry to hear your bad news.

    We are all here if you need to talk, hope you manage to get a bit of sleep.

    Trace xxx

  • I can understand how you must be feeling. I would ask your GP is there is a support group .face to face one that you can join to share how others have dealt with there problems. Samaritans are a great support and should be able to give you more information on any groups that are in l your local area. There is a lot of emotions around your thoughts right now and you need help to deal with this challenge.dont be scared .help yourself. Good luck and big hugs. We are all thinking of you ..

  • I am so sorry to hear this news Sha, I wish I could give you a big squishy hug. This just confirms my thoughts that meds can do as much harm as good but what can you do when nothing else eases the pain. It is a horrible vicious circle to be caught in and feels so unfair when you've done nothing to bring it on yourself. I know it must be hard to be positive especially with what happened to your friend Pete. But people do find matches and have successful transplants so I sincerely hope you find yours as soon as possible hun. Sending you positive vibes, quiet prayers and a big but gentle squishy hug. xxx

  • Thank you Ramjets,

    I went to bed last night hoping I might awaken with a renewed sense of purpose...that didn't happen. Instead I have a fussy six month old who had shots yesterday and is as grumpy as grumpy can be. She's still wicked cute! even if she is a grump.

    And you are so right. I could get on my soapbox and sing to the masses about the evils of opioids, but I won't do that either. All those years of taking Vicodin/acetaminophen was necessary to help me find a way to get through pain filled days and nights. What do you do? Tell sick people "Don't take those pills! They could kill you!!" what would be the point?

    I am beside myself, full of grief and disappointment. I have to have a conversation with my doctor and find out what my Child-Pugh score is.

    The Child-Pugh Score

    Physicians use a system called the Child-Pugh score to assess life expectancy of patients suffering from cirrhosis of the liver.

    Five measures are combined to generate the score: total bilirubin, serum albumin, PT INR, ascites, and hepatic encepalopathy.

    Each of these is given a value of 1 to 3, where 1 indicates mild damage as in the early stages of cirrhosis while 3 indicates severe imbalance.

    The results are added and generate one of three levels of overall damage:

    5-6 ("Class A," 100% chance of survival for one year, 85% chance for two years);

    7-9 ("Class B," 81% chance of survival for one year, 57% chance for two years);

    or 10-15 ("Class C," 45% chance of survival for one year, 35% chance for two years).

    Given the information I have today I am Class C...not good. Not good at all. :(

  • Hello Cape_Cod_Sharon . I am so sorry to hear your terrible news about your liver.

    Please think of me as one of your many friends and well-wishers on this forum who will be praying for your well-being.

    Best wishes xxx

  • Hi

    I am so so sorry to hear of what you are going through .... I really wish you the best of luck and pray for you that you get that much needed liver....

    Every time I get bloods taken at doctor they ask if I'm drinking too much but they have never ever offered a scan of my liver ....

    I sincerely hope all goes well for you and would appreciate if you keep us posted ....

    Also everyone here is like family and we all help each other out with what knowledge we have or even just an ear to bend and share your problems with .....

  • I never had so many people ask me how much I drink on a daily basis as I have in these past few weeks.

    "I don't drink.'

  • Hi

    I am so so sorry to hear of what you are going through .... I really wish you the best of luck and pray for you that you get that much needed liver....

    Every time I get bloods taken at doctor they ask if I'm drinking too much but they have never ever offered a scan of my liver ....

    I sincerely hope all goes well for you and would appreciate if you keep us posted ....

    Also everyone here is like family and we all help each other out with what knowledge we have or even just an ear to bend and share your problems with .....

    Don't forget we are all here for you.

    Aud xx

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