Going back into hospital in December

Hi there everyone!

After a month of waiting and having a HE nearly every seven days or so, then recovering time with vomiting shaking, sleeping on and on, I finally saw one of my favorite specialists at clinic.

We spoke to her about everything. I cried a lot.

It's been just over four months since we got the diagnosis about the new liver failing mechanically and having the shunt done. Still, I had hoped to get more time before going back to be processed.

So in December I will go back into Addenbrookes for the three day work up. To make sure I'm able to, and healthyenough to go back onto the list. I just hope I am. I got lucky the first time around with my blood type..A-.

So, tillycindy and pear-shaped . And my other pals..that is the update.

It's all still sinking in, but as I said, I knew it was coming..I just had hoped it would take longer. I'm on the best meds for the HE. They did up my dose of lactulose and added another one. So I hope that helps.

Love and gratitude to all of you out there still fighting the good fight!

xoxoxoxoxo

Kimberly

Aka your American pickle

64 Replies

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  • Hi DCKimberly, so sorry that your new liver is not working; i can only imagine what you have been going through and now this. wishing you all the best and hope things go well at Addenbrookes. xx

  • thanks you so much!

    hugs & kisses

    kimberly

  • Hi dckimberly I don't know you really well but I am sending you all my best wishes to you and hope that everything goes smoothly for you at addenbrookes. God one transplant is more than enough for anyone!!, never mind having to go through it all again. You are a trooper miss, and I take my hat off to you. Ian x

    PS: what blood type did you say you were?

  • well, maybe 2ce is the charm! :) and I am A negative. So, not the worst, but certainly not the best either!

    xo

    kimberly

  • I'm A negative, was on the list for about a month.

  • the first time it was 3 1/2 months..that is the double edged sword..there are less people who need that blood type..

  • I agree that it is a game of luck. BUT in the couple of years I've been on this site I've not heard of anyone getting on the list and not getting a liver at some point. I think they say around the 10 -20% of people on the list die before transplant. We are all fair warned of this, but I suspect that many of these patients die from other complications before transplant. I think you have everything to be positive about, I really do.

  • Another thing they don't warn you about is complications AFTER the Ltx.

    Like night sweats, diabetes, poorer eyesight etc.

    I know that the mortality rate goes up with each transplant also, so there's that.

    But your right, often people just get very ill, and pass that way. Not necessarily from being on the list, but whatever brought them into hospital to begin with. People often wait, not wanting to complain or thinking it has to do with age, etc.

    my tx coordinator told me that they are doing transplants today that they never would have never done 15 years ago. There is such a high need for livers. He said often you might get an organ just to help you stay alive until the right one comes along. Last month it was a year anniversary. I would have died if they had not transplanted me. I'll always be grateful for This first liver..no matter what. I wish I had more time with it!

    Xo

    Kimberly

  • My 2nd Anniversary tomorrow. I think I'll "celebrate" that by writing another letter to the donors family. It's quite a cathartic procedure. It seems so long ago now that it's easy to forget, but writing that letter will force me to reflect on the last couple of years. Just seeing my kids grow 2 years older is more than enough for me to understand the gift I was given.

    I'm on a roll now so I'll tell you something that happened to me when I had my transplant. I was in Kings hospital in London. My brother works in the city and travels to London once or twice a week. The day I went for my transplant my brother went to London to. When he got to work he was told that one of his colleagues had been killed in a car accident, and that this amazing woman had given heart, lungs, liver etc for transplant.

    Since my brother told me that story we haven't really mentioned it again I think because it's not something I like to dwell on. But I wonder if this woman was my angel?

  • I completely understand..and about the woman, things often happen that way..especially on such a small island!

    And it's a great time to write your letter..on your anniversary! If your ready..you should do it!

    Cheering you on!

    Kimberly

  • Yea that's true. When I wake up in the morning I feel rough, like I've got a hangover, it's really weird. After I've taken my first handful of pills I feel back to normal for the rest of the day, so can't complain when you consider the alternative. Better living through chemistry, although not like in the film. All the best, Chris.

  • Hi Kimberly, you really deserve a decent break with all this now, and I hope so much that you get back on the xplant list and everything works out for you. I wish you all the very best of luck, and if I could share some of mine with you I wouldn't hesitate. X

  • awww, thank you!

    Cheering you on!

    kimberly

  • Hi Kimberley ,,so sorry to hear this ,,sending you much love and positivity ,,,chin up ,,youll get through this all the best sweetie Matthew xoxoxoxo

  • Matthew

    Thanks for all your support my friend!

    xo

    kimberly

  • You must be exhausted (mentally and physically). Keep going, I know the stress of getting on the list but I think you've probably got every chance of getting on it, and from your condition you might get a quick turn around.

    It just doesn't seem possible it can go wrong again second time round.

  • I agree my friend..I have hope & faith.

    And yes..I could sleep for days on end! lol

    thanks for your kind thoughts! I'm so grateful for your friendship!

    oxox

    kimberly

  • so sorry to hear this news, im praying that you get back on the list. its heartbreaking what your going through, all the love in the world, god bless you and help you, grace xoxo🙏❤️

  • thank you Grace!

    Hopefully Ill get a new liver soon & be on the mend!

    oxox

    kimberly

  • i pray that you do kimberly, 🙏

  • Hey Kimberley,that's so sad.Sorry to hear your having trouble with the new liver.I thought you had cracked it after the transplant.

    My thoughts are with you and family.

    P.S. Sorry it's been a while.

    All the very best

  • Scotty!!

    Hi there!! I miss you..you are, as ever, my liver partner in crime! :)

    Yes..the ascites did not go away..it was getting worse. They discovered i have a rare form of portal hypertension in my new liver..so all the little vessels are blocking up. Then they gave me the shunt, but now I have hepatic encholopathy. Which is from the build up of toxins that are no longer being flushed out by the liver.

    They warned me that my new liver was going to fail 'mechanically' within 2 years at that point..That was 4 months ago..now the HE is getting worse, so its time to get assessed again for transplant..

    its been a long and bumpy ride!

    But how are YOU? How is the Hep C? Still all clear I hope. I see Tracy every so often when I am at the clinic!

    miss you and hugs you!

    kimberly

  • Bless you hon,I hope the H.E can be treated with a little more lactulose and rifaximin.

    Totally gutted you have to go through more with this disease,you don't deserve this,I hope you get a new liver again.

    What a journey eh,I wish you peace from this shit.

    I've been okay my LFTs are are improving all the time and I'm still undetected from hep c so thing's are pretty steady,just keeping the toxins at bay.

    I'm still seeing Tracy too,she is good stuff.

    As I said I'm sorry to hear this and if you want to talk you know where I am okay.

    Take care of yourself

  • Thanks sweets! I am taking everything I should be!

    They just added another laxative yesterday on top of the other. I am already on those antibiotics, to try and kill the gut toxins. But it's gotten worse..I'm hoping now for a few good days to wrap gifts etc.ecause I'll be in hospital at some point in December and everything has to go across the pond! Lol

    Hugs and love!

    Thanks for keeping up with me!

    Kimberly

  • Bless you I hope you are okay and looking after yourself,I know Tony will be there for you and your family.You will get better they will fix you proper this time at Addenbrookes and you'll beat this.

    You will be well enough to wrap your gifts up too this Xmas,I'll be wishing you a brand new healthy liver this time around.

    You take care Lots of love

  • Good luck for work up.love and best wishes to you

    Cazer.x

  • Thanks slouch sweets!

    xo

    Kimberly

  • Identifying with sleeping !!!are you still struggling to get to sleep at night but then when you do go off you go stay there for hours ?or is it night and day?

    Sorry still asking yoi questions.hoping somerset recharged you mentally for enslaught .xx

  • The sleeping is the day versus night scenario..except I sleep a lot more now with the HE. In fact, I'm on my way to my nap right now! Lol.

    Passing out at my desk.

    Glastonbury was the very best medicine in ALL ways.

    Love and hugs,

    Kimberly

  • Hope all goes well at your assessment and you get a rapid listing then transplant. In the meantime, keep well and stay positive.

    Jim

  • Jim!

    Thank you!

    I am trying to stay busy when I'm awake! Lol

    I'm creating three books with windows in them for the holidays. I'm an artist..that is the one thing getting sick did for me. I had sold my company when I got sober & was attending university in the USA. I was getting my doctorate in anthropology..something I love.

    But as a child and teenager, art was my whole life.

    I walked away from it at 17, when the drinking really began taking over.

    I was doing a bit of advertising art and my partner noticed how happy it made me. Suddenly he was buying me all kinds of paper, pencils, markers, just everything.i began by designing a 9inch tall house made entirely out of paper..in 3D. Then I stated selling the designs to a company in the US and the U.K.

    It's funny, huh? That it took me getting sick..35 years later to pursue my childhood passion...

    I would encourage others to do the same! It's been so fulfilling!

    Forgive long reply!

    exes and ohs and lots of cheers!

    Kimberly

    Ps. I'll post a picture when they are done!

  • Hi Kimberly,

    Wishing you lots of luck for your appointment at Addenbrookes, your positivity is a huge asset to this forum,

    Warm Wishes,

    The British Liver Trust team

  • Thank you sooooo much!

    I cannot gush on enough about what this forum has done for me!

    All the info, support, new friends...

    It's easy with an illness to feel utterly alone. When I found this forum I got all of the above, in spades. I'm ever so grateful for the people here and the staff that closely, yet not obviously so, monitor the boards for all of us.

    The information packets available for download have also been of great use to myself & my partner. We often find the answers to our questions in the information, when not easy to understand our doctors.

    I don't know who puts those together, but they should be commended. I find that the better informed a patient is, the better I feel, and I feel empowered, not like a victim to my own problems.

    Thanks again for taking the time to post to me.

    Please thank the whole team over there from me to you!

    Cheering you on!

    A grateful pickle!

    Kimberly

  • Thank you Kimberly :)

    I am just sending you a private message.

    Best Wishes,

    Rebecca

  • Hi Kimberley

    A friend had his third transplant and is doing well. So second time lucky for you I hope. Thanks for sharing your ups and downs as I like to be as well informed for all the scenarios That can occur after tranplant. Week four of my husband being on the list so I imagine we got a long way to go. X

  • Hullo there & thanks so much! Reading this made me feel better!

    I do hope your husbands wait is not too long and that he has a successful surgery once it happens.

    Cheering you on!

    Kimberly .

  • Thanks for posting buttercup. It,s Pear that does the nagging not moi !. You know It,s cuz we care. so perhaps pickles may be missing from all our tables this Christmas. I don,t suppose you know yet when abouts in December?. Hope so much that you get to spend it at home with Tony and family. Still we all know how you try to make the best of a rum situation, I,ve heard Hospitals can be quite a laugh around Christmas. Don,t quite know whether to be pleased and congratulate you or not, if you understand. As Pear once said going for being re listed must be daunting in one aspect but gosh kim, if you do and all goes well this time, wow, watch out world!. Things will eventually turn out fine for you, of that I am sure. Please let us know how you are. Much love anne.

  • Hi love!

    No clue when in December..I just know it will be then. I'm wrapping gifts early. I told the children yesterday. I just hate giving them the news. But yes. I'll spend the holidays with Tony, his mum and dad.

    Watch out world is right! Lol. I'm a fully engaged kind of person to begin with!

    Love & cheers my friend!

    Kimberly

  • Hi Kimberley . So sorry to hear things have gone pear shaped , your such a strong lady and I really hope that things get better for you , I am praying that you get a new transplant soon . Sending you my best wishes Hun .. Regards Linda xx

  • Thanks you so much, Linda!

    Every prayer and good thought helps..every single one!

    xoxo

    Kimberly

  • No need for that's Kimberly ... Sending big ((( hugs ))) to you 🌹..

  • Just a big hug 💖💖

  • Hugs you right back Freddie!

    Xo

    Kimberly

  • Good to hear from you , I was thinking about you yesterday when we were out walking 😊 Hope your assessment goes well Kimberly, all good at this end , much love xx

  • thanks you sweets!

    Hoping your enjoying the walking during what we in the USA call the Fall Color Show. I'm from the DC/Baltimore area and I love how the trees on the mountains look like they are on fire! :) It's amazing!

    cheering you on!

    xo

    kimberly

  • Had my follow up yesterday and met someone recovering from two transplants in the same week - he looked amazing for only 2 months post op. So you will be fine.

    By the way my new liver seems to be working perfectly at seven months post op and as I said to the consultant, I'm now a perfectly well, fit man who happens to have a big scar. Next appointment not for another three months.

    Jim

  • Congrats on you tx. I'm in the big backwards L scar club also! Lol

    😀

    Cheers!

    Kimberly

  • Was only thinking the other day that I hadn't seen you post in a while and now I know why. So sorry that the 1st liver didn't work out, but along with everyone else, I really do hope that the 2nd works out to be a charm, as they say.It's good to hear that you are remaining so positive, especially with all the meds and HE to boot. All the very best to you and your contributions to this board have always been appreciated. :)

  • Aww, thank you!

    And yep, I sure hope the second time around is the charm!

    Cheering you on!

    Be blessed!

    Kimberly

  • Hi ya I used to be on here under the sydonym of rickyrocket now I am urbanblanks but with my real name bri reason for change my account got hacked so that's just to let u know who I am I did talk on here a few times before any way this is just to say I hope all goes well for u and I know it's hard but positive thinking and all that I know u have been through a lot so good luck with it all and God bless ya love brixx

  • Thanks Bri for the kind thoughts!

    Hugs !

    Kimberly

  • Hi Kimberly, i missed You and didnt know what happened to you, i think of You a lot and send You the very best thats what You deserved, i want to share with You my sad story, my husband passed away two weeks ago, he agreed to go to the Dr, maybe it was too late for him, he showed all the symtoms mentioned always; encephalopaty, edema on hes feet, and strange sleep patters, he was at the hospital for 4 days because he caughed a lot and had fever, de Dr told us he was ok, now we think that maybe the Dr told him something in private about he's condition, he went to work and looked normal 2 weeks put he lost lots of weight, he started again caughing and at night he got fever, hes hands Shaked and the new Dr prescribed lots of medicines, lactulose, antibiotics, diuretics, lots of things, i stayed with him most of the time and cooked hes meals, it was really sad because he forgots lots of things, after 48 hours he was much better, and then after a week, on sunday he looked really bad even though he didnt' want to go to the hospital, maybe he knew something will happen because he said goodby to our sons, we Took him to the hospital and he suffered a heart attack, hes lungs did not work, he couldt breath on hes own, they told us he had neumonia and hes kidneys failed.....he died at the ER and we stayed with him all the time, remembered i told You he didnt want me to be with him and he wants to walked out of our marriage, sadly he did. I am very lucky to find this group and specially You, You helped a lot, and part of what You told me I used it to convince him to stop the homeopathy and went to the Dr. It was too late but I tried until the last moment.

    You always will have a friend in México and You are welcome when You can come and visit, i am sure You will find another chance, You deserved it, You have being an angel to me and will always be in my prayers. Wish You the very best,

    Clara ( desperate house wife)

  • hello my love! just seeing this..I am so sorry for your loss..but am glad he was getting help in the end. I am glad if anything I said might have helped..but I'll bet your determination was what REALLY made the difference! You were so strong.

    And you will always have a friend here in the UK, should you ever come to visit.

    I wish only good things for you and your sons, and wish your husband safe travels home. This is exactly why seeing a doctor is so important. As you've read above, I have the encholopathy also..it is draining and scary. Waking up, not knowing if its day or night, shaking, sick..but I'm glad you were there with him in the end. Remember the encholopathy would have changed his personality drastically..It has mine. Sometimes I am mean to my beloved..then I cry once I come around again and he tells me..I hate they he suffers because of my illness.

    thinking of you and praying for you and your sons..

    Be blessed and please write to me anytime..I will answer when I am able..

    hugs and love,

    kimberly

  • THANK You for your Kind though tí keep them in my heart,

    Xx

  • So sorry Kimberly. That must have been so hard to hear. Praying that you will be called in again soon and that the next transplant will be successful AMD you'll have a lovely long and healthy life.

    Sorry been a bit AWOL. I lost my dad just over a month ago. Then other stuff going on....we Dont have it easy do we!

    Wishing you lots of luck xxx

  • Jahida,

    thank you so such and good to see you!!

    I'm so sorry for your loss..When I lost my dad over ten years now, it still hits me. I dream about him still and often. I am definitely a Daddy's girl. I am adopted and have another dad also..but I am not nearly as close to him.

    I think I dream a lot about Daddy because he always made me feel safe..and being sick, well, I often don't feel safe.

    Again, so good to see you!

    wishing you all the best!

    XO

    kimberly

  • beautiful lady. Wishing you luck all the world.Noticed in ur bio tipps . I've had 2. Pls msg me anytime. For anything ❤❤ xxx

  • Yes, I had the Topps shunt put in 4 months ago and have developed HE from that. I just hate that! Bleak!

    Did you ever get that? You've had two of these? Did it get clogged up?

    Just curious!

    Thank you for the kind thoughts!

    Sending you much love! And cheering you on, as ever!

    xoxo

    Kimberly

  • hi Kimberly. I had 2 of them but both failed then i had my transplant. I hated having them done to be honest. They said it was unlucky to both fail but i was in cloud lah lah land and had no idea what was going on due to the toxins affecting my brain. When are you going back in? ☹ that sucks I'm sorry.

    sending you so much love n hugs ❤ 🤗 xxxx

  • nods, yes, the toxins are crazy. I hate how sick I feel afterwards also, I sleep when I'm having a bad episode. Tony says its like I'm sleep walking..I will rock back and forth for a long time, eyes closed, till he makes me lay down. Then I'm scared when I come around..not sure what day it is..sighs, then it's the shaking and vomiting..ugh.

    I go back in for my next transplant assessment next month..they have not said which days, so i am trying to wrap all my gifts etc right now. Because I have to send all my family gifts to the US.

    xoox

    love ya!

    kimberly

  • I know how it feels. Slept for almost a year. Frightened my kids as id lash out not recognize anyone i kicked with my parents i put everyone through hell. I feel so bad now. I'm glad i don't remember a lot of things. I went to the bathroom one day and bled out everywhere. My son broke the door down n saved my life i had to have the whole of my blood replaced. I don't remember 😣. Anyway I'm keeping my eye on you now. No escape now.

    Love you lots sweetheart ❤ xxx

  • oxxoox

  • *♡* *♡**♡*

  • My Dearest Kimberley,

    I know how daunting this all may be but you are doing the right thing... you want to be aware and conscious when the work up is going on...

    I am so happy for you and know you will be fine once you have this 2nd transplant...

    We are going in over Christmas for the operation so have that all hanging over us now...

    Lots and lots of love.

    Pear

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