Country boy seeking new liver

So I have been unwell for about three years, described as abnormal but stable, I was diagnosed with two Cystadenoma (or as I call the two poxy bloody lumps) which in turn were restricting bile flow giving me fairly mild side effects (weight loss yeah, no more beer, boo) everything was ticking along quite nicely until I started to feel worst about six weeks ago. My bilirubin level has climbed from 50-60 to the latest 211, liver function has started to decline, my most resent imaging showed little to no change physical of the cysts themselves but something has changed. As you can image at bilirubin level of 211 I get some fairly funny looks, my under coat is nearly number yellow! I'm just taking it really steady at the moment, I'm awaiting my pre assessment tests, which Kings are pushing through this week as they want to list me at priority level for liver transplant. So really just saying hi.

24 Replies

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  • Hi ...

  • Hello , good luck with your assessment.

  • Hope you get a swift resolution .

  • Hi there, good luck with everything . Just to add a good sense of humor which you obviously have will help you a lot on what can be a bit of a roller coaster at times,

  • I have always been like this in regard the sense of humor. I've been pretty low at times, especially in the beginning when I didn't know what was making me feel so ill, then over the next few years it became easier to accept. I have options and I also think i'm in a pretty good place physically and as mentally prepared as you can be.

    I've already asked my wife if I can have a zip tattoo at the end of my scar/stitch line, she said no, but it was worth the ask, she also had a sense of humor failure shortly after, so its knowing when to use it!!

  • Not allowed tattoos after transplant. Probably because of the risk of infection because of the immuno suppressants.

  • I could get one done before hand, maybe a 'cut here' or X marks the spot treasure map style! To be honest I haven't got a tattoo and that's a good excuse to not have one!

  • good luck.

    Obviously these "lumps" are now causing your liver to be "upset". Hope you get listed and don't wait too long. Do you know what you're blood group is . Some don't wait too long. My husband only waited 9 weeks not because it was that urgent but his blood group gave him more options.

    Let us know

  • Yes my liver is definitely upset! I think its done really quite well, because form the look of the scans is a mess in there, the liver architecture is all wrong, my right lobe is smaller than the left, when it should be the other way round. I salute it for getting on with it for nearly 34 years uninterrupted.

    I am blood group O, which means I can only have an O group liver, were as A and B can accept an O, that is what I've been told.

  • Good luck

  • Good luck with the assessment.

    I was in a similar situation to you about a year and a half ago. By the time I was dragged to the hospital my bilirubin was in the 400's, it probably peaked at about 600 and I've heard of people up to almost 1000. I was also bright yellow, and it made me really self conscious, fortunately it's summer so you can make use of a pair of sun glasses.

    If you get on priority then the new liver should come pretty quickly (I waited about 3 weeks). I've said a number of times on this forum that apart from the tablets and checkups I lead a pretty normal life now. I went back to full time work 6 months after transplant (could have been much sooner), cycle 2 or 3 times a week. Life is good again!

  • I also heard that people up around the 1000 mark start to turn slightly green! The 'yellow' doesn't bother me, I tend to tan quite well and it kinda becomes an undercoat! I seem to be really up and down at the moment, its a very odd feeling, nothing more dramatic than that.

    I'm looking forward to be able to get back to exercise, in December I attended the indoor rowing championships with a team from the gym, the exercise really helped me feel alot better as I have been feeling crappy for so long, its just recently I have had to put an end to exercising, I've got nothing left in the tank.

  • Yes about the tan, I did the same and ended up so brown, but then I got ascities and someone once described me as looking like a malteaser. Up and down is a good way to describe it, some days can definitely be better than others.

    I'm afraid the gym will be a bit of a way off, after transplant it's takes months rather than days to get back on track, but give it a year and you could be back to "normal"

  • I'm aware I'm not just going to bounce back, but I will set myself some goals, I'm not just going to park up in front of the tele.

    I don't appear to have ascities as yet, although one of my legs feels a little odd, like its coming round from a local anesthetic, it still works and doesn't hurt, and I've got a spare if it breaks!

  • Giggles at rodeo..malteaser indeed!

    Hugs you for making me laugh!

    xxxxx

    Kimberly

  • I know!!! They had no idea I was ill, but it did make me laugh.

  • hey listen, I'm nearly 50, and a grandma, and last year, I had ascites soo bad people thought I was pregnant..Women (who NEVER ask, unless they are sure as they would not want the same done to them if they had a bit of weight) would walk up to me and say, "OMG! You look like your ready to drop! When are you due?" lolol. And to be fair, I did look like I was having triplets.

    But I'd look at them and say, "oh Im not pregnant." And they would just feel awful!!!! sometimes I'd let them go for a few moments..lol..but I'd eventually tell them not to feel bad, because indeed I did look pregnant, but that it was liver disease! Then when they found out I would sometimes get drained up to 21 liters at a time..well some of them looked like they might faint. poor things!

    shrugs.

    There was one lady who was a bit nasty..so when she asked, I said "I'm not pregnant" then did not say a word more. I let her sputter on and on about how sorry she was. I just shook my head at her and walked away.

    I mean we have to laugh, right? Otherwise we might just go mad!

    cheering you on!

    XXX

  • Good luck cowboy! Will be praying for you to get that new liver. And, then, you'll be back in the saddle again! (((Hugs))) 🙏🏻🙏🏻

  • Hi there! And welcome to our merry little band!

    There is a lot of support here and great information.

    I was told by my specialists to not Google your illness, stay away from sites like WebMd. And that this site along with NIH in the US had the best info and support!

    I hope your assesment goes well for you and the process is speedy. I was not transplanted there, but I've heard good things!

    Please let us know how you fare and just how your doing. I don't know a lot about your symptoms. That billi does sound high! Lol. And yellow is never a good color on any of us! ;)

    Cheering you on!

    xxx

  • So who's Robin hood around here then?

  • Hmm..may guess? Our surgeons maybe?

    Hope your feeling ok. This evening and have enjoyed everyone's responses? This really is a wonderful group of folks!

    Cheering you on!

  • I felt pretty low this morning, but got better as the day went on.

    It's nice to find a decent group and hear all the different stories and get honest opinions about things.

    If it was Robin Hood at the pantomine I think I could play one of the ugly sisters, or am I getting confused with Cinderella!😝

  • Hello! Good luck for the assessment. I hope it goes well for you. I had my liver transplant about 14 months ago. I'm doing well. I write a blog and I tend to share the link so that way you can read my story. transplantmum.blogspot.com

    If you have any questions then feel free to ask!

    Good luck and welcome.

  • Hi Jahida,

    I have read some of your blogs, when I get more time, I'll start at the beginning.

    I think its so beneficial to have sites like this and blogs, there are so many unanswered questions and its really helpful to see how other people have got on. For me having a transplant is a very unbalanced, sometimes I feel like a fraud and have a good day, and I think to myself how can it be, then I have a bad day and want it all to be over.

    Its lovely to see you spending quality time with your family, this is what I most crave having a young family myself.

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