Scared :(

Hi Guys, how are you all today? I hope you are all doing well. If you haven't read my previous posts, my Dr told me last week that I have Cirrhosis after an US scan at the surgery. Bloods have all come back normal. My state of mind has been up and down but today I am struggling and feeling very very scared of what the future holds. I was fine yesterday, and the day before, but for some reason, today I'm scared. I have read a few cases of people being misdiagnosed etc, but I know that is just wishful thinking, even though me having Cirrhosis just doesn't add up due my lifestyle!! I just feel lost today, not knowing what is going to happen and having to wait such a long time to see the liver specialist. Not many people know my situation and feeling like I am going through this alone. Those that do know just say, you will be fine, or Don't worry!! Anyway, just had to get that off my chest. I hope you are all ok today :)

23 Replies

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  • You are not alone. I'm sure there are many people on here who have either been through or are going through the same thing. I was diagnosed with moderate fibrosis only a month or so ago and it terrified me. My bloods are all fine and my doctors kept saying there was nothing wrong and then... moderate fibrosis on the fibroscan.

    I think the best thing you can do is take each day as it comes. The waiting for doctors drives you nuts but you'll get there. Start thinking about and writing down any little thought or questions that you want to discuss with the expert. It really does help. I sent my specialist a letter as I had more questions after my appointment and am waiting to hear back.

    Stay strong and let us know how your getting on! 😊

  • Hi. Thanks for your reply. Im sorry to hear of your diagnosiis and hope you get your reply soon. Take Care. Xx

  • Evening. I have liver cirrhosis and was diagnosed in October 2013 when I was 32. I'm not an alcoholic, never have been, never taken drugs either. In February 2014 I was diagnose with blood cancer so mine wasn't in line with my life style either.

    Everything has been fine, besides changing my lifestyle and diet, taking medication and being a little more forgiving of myself. I always worried about the future and what it will hold....but as my other half told me, can't worry about things that haven't happened. I was always a watch and wait, just taking medication and stuff....unfortunately things have changed for me and now I am on the transplant list and have been for 10 months. My transplant will come one day but in the mean time, I just have to keep going as normally as I can.

    That's my advice to you. Make the adjustments you can to keep yourself as well as possible and deal with what happens as and when it does. Tell people too, if they have a poor attitude about things then you don't need then around you, if they are family and good friends they will try and assist you where they can. It's better to have someone with you when you go to appointments, they can remember things that you may not.

    Good luck x

  • Hi Chelle. Sorry to hear what you are going through. I hope you have lots of support around you and you get word of your transplant very soon. Thinking of you. Xx

  • Hiya chaibooboo there must be something in the air today as my anxiety levels have been off the scale which meant having to take half a Diazepam to get my daughter to the orthodontist and another half a pill this evening to get me to my docs for a blood test! Even my veins wouldn't play ball... just checking Vit D levels but the nurse said oh and calcium and diabetes... of course with a brain that likes to awfulise I immediately thought ohhh they're looking for signs of osteoporosis perhaps because of the steroids earlier in the year but no idea on the diabetes front... and yet I am sitting here eating salted caramel sponge cake with a chocolate butter cream middle and salted caramel buttercream on top!!! Bizarre! I do think our brains don't like the uncertainly as we can't process it perhaps and also, personally, if I look too far forward or backwards I can quite literally scare myself into a catatonic state! So.... one thing I have found useful is trying to focus on something that focuses the mind, it can be your best friend and your worst enemy.. colouring does it for me or cross stitch.. or a good TV programme.. anything to calm that chatterbox... just being with my daughter does the trick too!

    I have been proved wrong on so many things I worried over, too many to mention really... so I have to reel my mind back in, remind myself we can only have one thought at a time and try and be calm..i try and get off the not so merry merry go round..mindfulness is useful...I'm going to watch Poldark now lol! Keep smiling :) you are definitely not alone xxx

  • I hope you are feeling better today. I will definitely takd your advice and try to focus on something. I am s natural worrier anyway so my mind has been working overtime. Take care xx

  • Hiya, your state of mind will be a little shaky now you have only just been diagnosed but if your feeling well and your blood's are stable you don't have much to worry about at moment.

    I was diagnosed 6 years ago and the first few years I was fine apart from tiredness so I got on with my life, the doctors /consultants can't predict what is going to happen we are all individuals but you keep your mental strength strong and you talk about your diagnosis and how your feeling it will help you. I had my transplant 11 months ago and I am still living by the same thoughts because nothing in life is guaranteed so make the most of the great days and as we all have bad ones scream, shout, talk or cry whatever makes you feel better ☺

    Things could always be worse and they aren't so enjoy xxx

  • Chaibooboo,

    cirrhosis is usually dignosed by a combination of imaging, labs and symptoms.

    Do you have any symptoms? Why did you get an US scan?

    Best,

    P.

  • Hi. I went to th GP as I was suffering right abdominal pain, 7 out of 10 times when i drank wine and a couple of times when not drinking alcohol. Dr thought it may be gallstones so sent me for the US scan. All bloods are fine and no other symptons. I havent had the pain since, well yesterday i had very dull pain but that could have been anything xxxx

  • So the diagnosis seems mostly based on the US. Was it a Doppler-US scan? Did the doctor thoroughly look at your eyes and face, your hands, your upper abdomen, neck, check your ankles etc.?

    I just wonder what the US report says.

    As for 'all bloods being fine', consider that a GP will only run very basic tests. A hepatologist will order proteinogram, coagolation study, iron metabolism study, antibodies and what not. In case of cirrhosis, some irregularities should certainly show up even if basic LFT's are fine.

    Be patient and wait for what the hepatologist says.

    P.

  • No All I have had was a normal US scan and blood tests. Nothing else yet xx

  • Did the physician make a definitive diagnosis already? Maybe he just sent you to the specialist with the suspicion of cirrhosis.

    P.

  • Hi

    Maybe you could ask him to send you for a fibroscan. Take care xxxx

  • Hi Lynne, yes I am seeing GP again on Weds so I will be asking :) xx

  • Good luck and please let me know how you go on xxxx

  • Thanks Lynne x How has your day been? X

  • I've been quite rough today but I will keep smiling. Thank you for asking. And you? Xxxx

  • I am sorry to hear that. You seem like a very strong positive person. Keep shining hunni. Xx

  • Thank you, will do xxxx

  • I know how you feel I am 69 and when diagnosed with cirrhosis 6 yrs ago I could not believe what visas hearing. I don't drink have diabetes but keep it pretty well under control. Blood work always comes back good I couldn't see how this happened it was because of diabetes which runs in my family. When diagnosed I read everything I could find out about it so I would know what to expect that scared me even more. I try to eat right watch my diabetes and cholesterol which specialist told me was important and still sometimes I get scared of what may happen in the future. I get a lot from reading posts on here and what other people are going through which at times seems a lot more than I am going through. I guess being scared of the unknown is pretty scary at times. I just try to take it one day at a time, do whatever dr tells you to do and maybe tomorrow won't look so scary. Keep reading the posts there is some very good advice in here. Everyone has had the same feelings at times. Good luck and keep us posted you have a lot of friends.

  • Fab post Mel glad you're ok xx

  • Hi

    The advice everyone has said above is a clear sign of the support you will get here. Someone else is either going through the same or has done.

    One of my coping mechanisms is to plan for something happy. It could be a holiday or a party for one of the grandchildren - or their parents if they behave lol.

    I find that focusing on the details of what to do etc calms me and kind of reminds me that the future is good one step at a time.

    Whatever you need to say, moan or ask about you will more than likely find your answer here.

    Rita x

  • Hope you are keeping up alright. I am in the same boat as you at the moment. All tests normal except fibroscan so waiting till Nov 28th for gastro appointment. Trying to just get on with things in the meantime. I am in Vancouver but I'm British. Interesting to see how the process differs here to the UK. Stay positive, for me the best thing is regular excersize as well as work and life's usual things. :-)

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