Home Again with My New Liver

I just wanted to thank everyone on here for all your kindness and lovely thoughts, well wishes and prayers.

I got to come home yesterday. I slept in my own bed! Yay! And so far, so good!

Trying to get adjusted..the stairs are scary to navigate..but I'm doing it!

Please wish me luck as these first days home can be hard....but I have faith!

My partner has been a real gem!

Now I'm off to take all my morning meds..I overslept a wee bit..lol

xxxxxxxxxxx

Kimberly

90 Replies

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  • Fab news. Onwards and upwards 😀

  • Wishing you loads of luck and best wishes, don't over do things to quickly though!!!! Annette

  • That is really good news.

  • Congratulations. Take it easy, you have the rest of your new life and new liver ahead of you so take it baby step at a time. I slept downstairs propped up on the sofa for a while after my resection as it was more comfortable than flat in the bed and meant hub got an undisturbed night sleep. Also friends and neighbours popped in and make me drinks and snacks so I wasn't bending and stretching too much in the early days of recovery.

  • thx Bolly..yes, its early days..trying to sort all out! its a bit daunting!

  • Delighted for you Kimberley, How Lucky you are to have had this opportunity. Take Care of yourself and the New Liver, Best Wishes, x

  • I My other half got me something like this for when i first got home amazon.co.uk/dp/B002ALJC9W/...

    It was brilliant.

    Weird that you feel so unstable isn't it? It's not like you had anything done to your legs, but you feel like you've forgotten how to walk.

    It will just get better from now on. It will all seem like life before was a nightmare soon. You won't believe what you put up with.

    Good luck!

    Mine little more than a year ago. So the whole experience is vivid but strangely dreamlike.

  • so pleased for you hoping you have a wondrful life ricky

  • Great news, take care of yourself xx

  • Congratulations Kimberley. Remember, take it easy at least to start. I did the same as Bolly after my resection, slept on the sofa for many weeks. Keep well, stay well. xx

  • nods..yes..im already sleeping ..alot..lol

  • I needed hearing some good news! Look after yourself and glad you've got a lovely partner xx.

  • Take it easy! avoid other peoples germs, sit back and relax, reflecting on the mad journey you have had so far, and the exciting journey you now still have in front of you! mine was 12 months ago, I remember the coming home moment especially as I was in Newcastle Freeman but live in N. Wales (220 Miles) so friends and neighbours were able to visit me (so long as they were cold free) Enjoy!!

  • Am i right in thinling you are the person who had to have all your teeth out?

  • This popped up on my feed,

    < Am i right in thinling you are the person who had to have all your teeth out?>

    If it is a recent question, yes, I had wobbly teeth, PBC, very poor calcium, and all teeth out pre transplant (risk of infection under wobbly teeth that were going to fall out in 12 months anyway.

    Are you having issues? as is usual with PBC, no one (dentists etc) made any connection between PBC and teeth, but to be fair I only knew about PBC for 18 months, then suddenly so ill and transplant...

    Charlie

  • Yes last night.. have pbc am stage 4 varices ukeld 50...had 9fillings after front lower teeth rotting away really quiccly.

    Had an extraction a week ago it was infected underneath...dentist didnt give me antib then had to go bsck re packed and rinsed then she gave me really low dose antib which would have run out this am rang for more...said she couldnt raise dose so had to ring docs who couldnt understand why shed given me such a low dose and has given me rest but now my gum has a groove in ithink it migjt be bone going.!!demtist doesnt get it ...habe 6 more to come oit but dont yhink i can cppe with 1at time and after this first one...

    What a nightmare!!did you go to hosp?

  • Hi pcbnpbc I got home 29/12/15 (North Isles Shetland) after tx on 14/12/15 at ERI tx went well problem is I have HCV as did the donor of me liver who died of other causes God rest his soul. It is a very healthy liver though or so the surgeon says (but he would say that wodent he) I did have a look on the ultrasound and it looks good, better than my old one. How do I feel about this that depends they put an infected organ in to an infected body. Who else was going to take it, and being blood group O+ how long would I wait for a "clean" organ. Yes it was a difficult decision and with only minutes to make it. The right decision? Time will tell, one positive is that the boffins seem to have a handle on treating genotype 3a, what if me new liver has genotype 1 this is new to sience. One thing in my favor is my age 57 it took 40 years to kill my own liver if I get 40 years without something else getting me I'll be a lucky man.

  • Well done you, part one of your journey completed! I bet the surgeon does say that to all the girls, (mine did struggle to say that as on day 4 and 5 I was on nil by mouth on the edge of a retransplant situation)

    They knew they were giving me a "sub standard" liver, but like you, group O, grasp the opportunity when it is there!

    I have no experience of HCV, presumably they know what they are doing, I wish you well with any further treatment you may require, which makes me think ....I thought I had it bad with a 220 mile car journey (or bad rail trip) each way to Newcastle from N Wales....what is your journey like? how often will you have to attend in first few months (I made many visits)

    I am now 14 months post tx, I suffer fatigue, (sleep overcomes the problem, so now I take a daily siesta)

    My liver and I have IC an effect of a liver that was without o2 for too long, which will deteriorate and almost certainly take me to the need for transplant #2

    Meantime I am well, liver is well, and time to enjoy life, feel grateful for the reprieve, feel grateful to our doner, now it is your turn, Happy new year! Happy new liver!

    Charlie.

  • Fire up your GPStreet there everywhere these days and look up ZE2 9DA that'll show you my house. Hope you get many happy years with your new liver it's a bit like a marriage if she walks out she literally takes every thing so be extra nice too her

    Cheers nooo maty

  • O sorry pcb I have weekly clinics in Edinburgh for the first 6 weeks. that means for 2 days a week I will be travelling. As I don't drive following an incident when I was ecefalitc my wife will have to acomany me. Then hope fully when it becomes every 6 weeks I will be able to drive I hope. That will give my wonderful Norma a well deserved rest.

  • Congrats on making it through and home.best wishes to you.xx cazer.

  • Hi Kimberly,

    My new liver and I returned home on Friday! Stairs get easier especially when the only toilet is upstairs. Sleeping in your own bed is the absolute best and real rest and sleep is so important for recovery. I feel so much better now than I did a few days ago.

    My first night at home I slept for 11 hours and it was bliss.

    I also have an l-shaped pillow- supports the back and night and stops my partner being able to hurt me as it acts as a barrier. On the sofa I use it to prop myself up so I can sit comfortably and lean back into it

    Best wishes for a smooth and speedy recovery

    Jenni :-)

  • So good to know you are home again and doing well Jenni. You and Kimberley can be recovery buddies!

  • Hugs Bolly xxxxxxx

  • oh wow..brilliant! and congrats! Im off to early clinic appointment..question..were you at Addenbrookes?

    If so, were you transplanted around the 15th to the 21st of October? Just curious, as I heard there were 5 of us that had liver transplants..and I know 3 of us were in one bay..all transplanted by super god Mr. butler..who Ive heard has the highest success rate for livers in the UK, Europe, and I'm thinking the world..lol..He's the only one that does the multi visceral (spelling) or the multi organ also, at Addenbrookes?

    Im sleeping a lot..but Ive got some pain? ugh.

    anyhoo..my biggest fear is them trying to readmit me today..if my hemoglobin has dropped again..sighs..fingers crossed it wont±

    I did my charity work yesterday, which was a really small goal i had, but I did it! :) I do the cover art for the Parish Magazine..Im not religious, at all..dont even go to the lovely old 12th century church..but, I love marketing and design..I was determined I would not miss my third Christmas Issue..lol..which also is the anniversary of when I started doing this 2 years ago! :) Still, it did wear me out!

    I look forward to hearing from you XXXX

    kimberly

    ps. we could be transplant pals..since were just freshly minted!! XXXX :)

  • Yes you've got to set them goals!

    I was home from mine probably a couple of days either side of you guys last year. I was Christmas shopping by the end of November and had the best Christmas with my family ever. Hope you get to do the same.

    Just stay away from them germs!

  • Congrats, you're an inspiration!

  • Great news. I also had one a few months ago and already I can do things that I did before and more. Stay positive and you will be fully mobile very soon

  • Congrats to you also, sir, are you in the UK or US? Just curious!

  • UK

  • Brilliant

  • Great news that you are home already--Take care and don't try to do too much, I couldn't managed stairs at all when first home, I tried and my jelly legs just wouldnt work even though i was consentrating and willing them to work they just would not respond, really weird, so my hubby brought the spare bed downstairs --yeah relief.

    Keep doing small things at first and soon you will be running in the transplant games lol. All the best to you and have a great future x :)

  • Great to hear, good luck and best wishes :)

  • Great news, good luck and best wishes :)

  • Dear Kimberley, glad you are home and all my love to you for a speedy recovery.

    julie x

  • That's great news, steady for a few days , you should be ready for a night at the dance hall at the week end ( lol ). But seriously take care and keep positive thoughts..

  • Wonderful new's Kim...Keep on keeping on and shine girl...You deserve!! Xx

  • No, YOU Shine! Scotty, you have always been like a light for me, always encouraging me to not be afraid and to shine on! And us going through the Harvoni was huge...that along with the transplant!

    Speaking of which...saw our mutual friend Tracy today, she was in clinic,but I was seeing doc. Gelson. She was so nice, Scotty, saying how wonderful I looked, how different because I was healthy! That she had never seen me anything but poorly...so that was nice! And Dr. Gelson teased me about being all in pink..lol..which, I was..I dressed like a reall human..it was awesome! Makeup, jewelry, the works!

    It's so nice to actually WANT to do that!

    Miss you, partner in Liver Crime!

    xxxxxxxx as ever

    Kimberly

  • Hey Kimberly..I couldn't leave this one alone lol..We kicked some ass up there eh hon..But honestly darling you are an inspiration to anyone...What you've been through this last few years is awful..and for you finally to see a bright future is a dream come true in my book.

    Dr Gelson was right to compliment you on how you looked ..You deserve to made to feel special...I bet you did look stunning.

    I would make you feel special too.

    You enjoy being a lady again Kimberly because that's the best news I could hear.

    Love you Kim XxX

    Catch you on the otherside sweetheart! XxX

  • Thanks Scotty! And, as you know, your card in hospital totally made my day..I was having a rough time that day, and when I opened your card, truly, I felt right as rain..I cannot thank you enough for that card! It's sitting on my dresser right now! Lol

    And yeah, it's fun to be a bit girly again! Yay! Xxxxxxx

    Kimberly

  • Yeah" great news Kimberly. .hope it gets better and better for you from now on your life begins .light at the end of that dark tunnel so happy for you god bless X x

  • Thanks so much!

    Xx

    Kimberly

  • Lovely to hear such a positive story. Enjoy getting back to real life. I am due to go for assessment so your blog has been a great tonic. A lot the best Kimberley

  • Excellent,and well done,take it easy!Don't run before you can walk,get hold of one of those little brass bells with a loud peal,or a walking sticks good-for rapping on the bedroom floor;-)

  • Lol, yep, I have to be careful about overdoing it..I'm infamous for that in my life, but now is the time to be safe!

  • Glad to hear a happy story as I've just gone on the list for a transplant.? Well done and good luck.

  • You sound such an energetic positive genuine and Lovely person dckimberly .Your posts and replies are full of charm and you have a lovely sense of humour - I can feel how bouncy and full of beans and creativity you are and you have certainly done the donor's gift of his/her liver proud. I am so pleased for you xx

  • Awwww thanks you so very much! Well, I can be bouncy..often too bouncy..lol..I talk too much! Giggle..but I do love to laugh and have fun! I feel blessed and one thing being sick has done for me is it has brought my creative self back..if that makes any sense? I mean I used my creative self, but stayed away from some of my true loves from childhood, art being one of them. I did marketing and graphic art..but not actual hands on art..now, in the last year, my lovely partner, seeing how bored I was, basically outfitted me with everything imaginable for an art studio, so I have supplies galore, and have been very creative, except when I got terribly I'll for a few months..Anyhoo..it's made me a bit of money, and looks like it could make me quite a bit more, if I decided to go that way! Which is so exciting! Given that I have not done this since I was 17 and I'm 48 now! Lol..sorry, I do go on!

    But I think I say all this to encourage others..be creative..you don't have to spend money..you can use any pencil or pen and price of paper to sketch, write poetry or a story..you could start an online blog! Collect and press flowers..take up bird watching! There is sooo much to do! So much to be creative with!

    That alone kept me sane though the last year and a half..it truly did!

    Cheering you on!

    xxxxxxx

    Kimberly

  • What a beautiful reply! and one more quality that shines through everything you say is a " happiness" and ability to just 'say' everthing so naturally! like pure fresh water in sunlight bubbling up from a spring! :) yes! that's the 'aura' I perceive through everything you have written since you joined in july 2015 - you see i am a bit of a stalker! but don't be put off! not really! it's just so uplifting as even when you were poorly before; your spirit and humour shone through :)

    I love the fact that you have gone back to 'hands on' proper messy art and you are blessed to have such a wonderful caring partner.

    One of the most important things in life is creativity I firmly agree. I'm replying to things here and there on this community forum as I started when I asked questions on behalf of my beloved poorly husband who didn't manage to survive his liver issues.........a month ago yesterday....... but I still feel this strong need to 'be' amongst you all still as whilst we were battling the horrible disease your names all felt familiar to me as I kept reading things to get some hope and courage. And I did get courage from this forum and I conveyed the hope and courage to my hubby until the very last....... I ramble..........

    Yes, to be creative is an essential thing for humans... that's what makes us different from animals! and like Keats said "Beauty is Truth and Truth is Beauty and thats all we need to know"..... or something like that!

    Two of our chidren are both graphic designers and another in Drama School. My hubby too was creative with both music and art ( hobby more than proffessional) I have been thinking that I may too try my hand at drawing and watercolours with ink, to pass my time.

    All my very best good wishes to you x

  • Oh sweet girl..your loss is so huge, and to be here, inspiring those of us here, and encouraging us and noticing the individual things about us, and commenting on those things, by cheering us on (one of my favorite things to do! Lol) is such a wonderful, beautiful, indescribable thing...it only shows your generosity of spirit, in spite of your own terrible grief..surely this was a thing your partner adored, adores about you..and I'll bet a good portion of it comes from your love of him, and his love for you...

    It's like your sharing that love of him, with us, thus allowing us to feel that love he inspires you with also...thank you for that.

    I find that gratitude is really an action..like I can say thank you all day long..but when I act on it, then I'm really experiencing it and sharing it with others..you know?

    It's the same with love, don't you find? When we share it, more is heaped on us...or we just feel more love?

    I hope you do pick up your art again! I know for me, for my daughter, and my parents, who are actually professional artists, it's a wonderful way to express our feelings or deal with them... I can't tell you how many times, especially after I got ill, I'd see my daughter struggling, and then she'd disappear into her room, canvas on the easel, paints in hand, into the wee hours of the morning..only to come out with a fully painted piece, and her face was relaxed and smiling, and she was able to actually talk about her pain or worries.

    I think you should stay as long as you like..and pls..message me whenever you like.

    We have something in common...I lost my partner 10 years ago..but to a drug overdose..still,loss is loss.

    Cheering you on, and so grateful for you and your kind words today!

    xxxxxxx

    Kimberly

  • I read your your truly compassionate reply and it brought tears to my eyes, as you expressed so precisely the way i'm feeling even though I myself couldn't have found or been able to put it into words or even fully undesrstand why I am still 'here' and thanked me for it too!- but it is precisely 'that'!! WoW! you also made me feel better! :) And I too am so grateful to you and will keep re reading that post and thank you for your encouragement to pick up art again. I am also sorry to hear of your loss ten years ago. I shall try and be like you and keep my chin up!

    Thank you xxxx

  • Sorry to hear this news 'liveronmymind'. I hope you are still finding support via this forum. xx

  • Dearest Bolly,

    :( He lost the battle......it was simply too late. Thank you for your kind words xx and thank you also to having replied to previous questions and things I had asked........and yes - it's incredible ~ I am like I was saying above finding support via this forum!

    Thanks again Bolly and am pretty sure that you will always be "Onwards and Upwards! xx

  • Hello Hun,

    I am so sorry for your loss... It must be so difficult for you...

    You have and always will remain in my prayers...

    Will do a special one for you husband.

    Your support and inspiration has been endless...

    Yours,

    Pear

  • Dearest Pear,

    You were my very first source of Inspiration and Admiration on this Forum. Reading Your postings gave me strength and strengthened my own determination to remain positive and strive to be as dedicated to my husband as you are to yours and I was in some small way able to identify myself with you, in fact you became my role model.

    Thank you Pear for every prayer for myself and for those you offer for my husband. May God bless you and your family,

    xxxx

  • I think this the hardest thing to think of is that if we dont make it its the heart ache we leave behind! I have no fear of dying....sorry ive said the word ....but lm sure a lot of us think it but am scared for my family and am scared that my family will struggle with it if something drastic happens.the fact you are on here 'liver on my mind' is a tribute to your strength and makes me feel comforted that you are still supported by this website....dare i suggest that if it doesnt already exist a specific section for those that have lost loved ones to liver disease might b a great addition to the site.ihope i dont offend you lomm by suggesting this but you sound like a lovely positive person who did a wonderful job supporting your hubby through thick and thin...sadly to loose him...but at least having the comfort that you did what yoi could.although i dont say it to my husband and should i am eternally grateful to him for his support as he is always willing to put himself out if there is something i want to try and do ,despite the fact hes tired from a long days work and has to help a lot at home.im sure a support chat area for those who have lost dear ones/parents etc would really help alot of people.i would imagine that the day/night seems very long if you have had a large caring role which leaves a big void of time.i have end stage pbc with portal hyp ten and varices diag 16 years ago after 4th child(prem baby) now16! And bound to worry about kids as they are still my babies even though eldest26.my love and best wishes go to you lomm at a really hard time(as i say hope i havent over stepped mark by suggesting...those loosing loved to liver disease tlltld.best wishes.also not to ditract from kimberleys transplant wishing you a speedy and good recovery.x

  • That was my greatest fear, dying. Oh, not for me..but for my partner and my children, especially my daughter. How they would cope. I also like the idea of a group, especially for people like liver on my mind and others..

    My own mother belongs to a widows group at her church. They do things together, do some charity work as a group, and talk to each other, support each other..not that I mind liver on my mind being here at all..I don't at all..

    But at some point, she may need a group like that..where others understand her loss, in a manner many cannot.

    I think wherever we get support to make our lives better and healthier is ok. It's hard enough out here without having to do it on our own, right? And that's the thing..traveling the road together..be it in a group forum like this, in a widows group like my mom, or even starting a group that not only helps self, but others as well.. People should be there for each other...

    There's never enough love and kindness in the world...helping each other should be mandatory if your a human being..just my humble opinion..for what it's worth

    Cheering you on!

    xxxxx

    Kimberly

    Ps sorry if I'm a bit groggy just woke up from a bit of a nap..I sleep a lot right now..

  • Dear Kimberley, thats such a sweet and thoughtful post.

    The idea of belonging to a widows group with others who have suffered the same loss seems rather comforting and something to look into. Also being involved in charity work too.

    "Love and kindness in the world" - Thank you Kimberley for your vision of love and kindness.

    I am so happy for you Kimberley and that you made it through and I too would like to Cheer you!

    Take lots of beneficial sleep and naps (you weren't at all 'groggy' either!) And All the BEST! xxxx

  • Dearest liver on my mind

    So sorry for your loss. My thoughts are with you and your family at this time. As long as you find this forum helpful it will always be our pleasure to learn from your experiences and keep up with how you are. Take care of you and yours.

    X Cibble

  • I'm glad we have helped in some way. It does seem to one of the harder cancers to 'cure', yet there is always a Cibble amongst us popping in now and then to let us know she is still checking if she can help, and a 'me' who I think just got lucky - lucky my hubby sent me to the docs when he did, lucky it was a locum GP who started from scratch with my medical history, lucky it was caught early and was operable, lucky the surgeon ignored the protocol of not to do resection on a cirrhotic liver and risked it!, lucky he was a good surgeon and I made it through (there is a long blank of time post surgery I have no recollection of, so not sure how touch and go it went) lucky I didn't need chemo, lucky to tick off the years and have had 5 more years of reasonable health (though still a bit of a scaredy-cat that this new 'spot' is more than something and nothing).

  • Dearest Kimberley,

    Huge hugs, I am so pleased for you!!!

    I'm praying that you are blessed with all the happiness you so rightly deserve...

    Lots and lots of love :)

    Pear

  • Big kisses you you Pear!

    xxxxxxxxxxx

  • Not been on here for a while but what fantastic news to see Kimberly ! So pleased for you. Wishing you lots of happy times ahead x

  • Thank you so much! Great to see you here, and hope all is well!

    xxxxxxxx

  • Hi kimberley...ive just had my 6month check up changed to 3 month and my clinic letter says bilurubin now22 also ukeld 50 !!!! This has all changed since last check up where everthing was stable.did you have a slow process to listiing or speedy? The registrar said they would hold off on asessment till ive had next check up then go from there.have been expecting this type of news for years but now its looking more like listing i have say im a little shocked.x

  • Hi there, alas, I don't know about my numbers and all at time of assesment..my ascites had started to get bad in November a year ago, by Christmas I stopped eating regular food, had no appetite and only could handle soup. I also had Hep C. Then in Feb last year they assessed me and said via numbers I could go either way, but the ascites was the clincher. After that I went from every month to every three weeks for drains, sometimes draining as much as 21 liters in a session, in less than two hours, then it went to every two weeks to every 10 days by October. I actually was not placed on the list officially until June..that's when I was in hospital for a week due to a staff infection. The transplant coordinator came to see me. I was not on the list before that due to another issue that had nothing to do with my health. I took the harvoni treatment just prior to my transplant which cleared my body of the Hep C.

    But your right, it can go very quickly..in my case, I took a turn for the worse and went down hill fast. Despite my chipper demeanor on this site and others, I was very ill prior to transplant..my levels had changed and they could not drain as much because my proteins were bad. But the consultant had said I was not very high in the list because my numbers were still good, my bili etc. BUT the ascites was very bad. She wanted me to get the Tipps proceedure, which I was considering...

    Then BAM, I got the call. To be fair though, I am A negative..although not the rarest, it is rare..so I was blessed that way..there would be only so many people on the list waiting for that. Strangely, in hospital, others told me that they each were waiting with one or more for the same organ..while I was the only one waiting for mine.... So they did not have to decide who was sick enough to get it.

    I would say this. If your next labs are not good, they will set up the assesment. I knew I was getting mine two months prior. I knew in November that I was going in Feb.

    How are you feeling? Ok? Or no?

    The liver is strange that way, I think..you can go years being ok, then you get sick fast. I know I did. I only had symptoms for three years.

    I hope some of this info helps? I know this is a scary time..no matter how prepared you think you are, your just not. Period. I know the Britts like the stiff upper lip, but if you need to talk, please message me..it helps to talk. It's ok to be terrified..in hospital they say constantly how it's a major surgery and life altering..it is, my friend. I'm 38 days post transplant and I still can't believe it happened, let alone that I'm not going to die. I can't believe I was even on the list. I cried a lot after surgery..so did my roommates..they say that's normal..it's getting better. But I still sometimes sit alone in my room and sob for no reason. This is a big deal..it's a huge deal. It is, literally, life or death. When they wheeled me into surgery, and I said goodbye to my partner, it was wretched. Neither of us knew if I'd survive....sorry, I'm not trying to upset you..this is my story and I'm sure yours is different..but I just want you to know, if you need to talk, I am here.

    And I hope if it's time, you won't be on the list long. Can I ask, what hospital are you at?

  • Hi were you awake in the night?thanks so much for post and no you havent scared me.....i was suddenly bad with symptoms when 16 years ago i was pregnant and had glandular fever....turned out to be pbc and glandular fever but i never made it back to work

    My son was born prem but fine.at that time i had severe itch loosing weight,feeling v.nauseous and would chuck tea back for a pastimes.felt like my heart was all over place.sickness and upset bowels was not from pregnancy it wasdifferent some how.l had terrible fatigue which has improve very slightly from then but means i dont usually get dressed till mid day then have to rest again.im quite nocturnal and have lots of blank moments with names etc...forgot my brother in laws name for 2 weeks.l know what you mean about crying....when i had my son i lost a lot of blood prob due to clotting disturbance and the room when fuzzy i thought this is it im going to die...

    I didnt obviously as im here talking to you now....but later that night when i came round from passing out i cried buckets ....but i think it was the near miss thing....cant say it was sadness more a sort of relief of emotion and to know i hadnt left my poor husband in charge of a prem baby and 3 others under 10!!! So since then weve muddled our way through....had some homehelp time as couldnt even hold dom(baby) up he had to go to childminder and others quite alot of the time so all a bit crazy but theyve survived....2been through uni one now it lecturer and other physio,middle one dairy herd worker...works so hard and littlest at college doing music tech.sorry proud mummy moment despite my incapacity theyve all done/doing well.i fought for himehelp time as was determined they would not be my main carer or carer for baby.i think that would have been a wjole different story! My liver functions have been stable for years despite the symptoms but last year approx they ve gone in wrong direction! Now ukeld 50 which is apparently just at listing number so we will see.x cazer

  • Wow! You have been sick much longer the me, bless your heart, and raising your babies! Your a real fighter!

    I don't know if I could have been so brave...there were days I thought, I just can't do this anymore, the ascites pain, not sleeping for days as I old not get comfortable....

    Being chronically ill can be so tough.

    I know they offer therapy after getting a transplant if you ask for it...once you have lived your life being sick for so long, it can be hard to deal with being well..it's a different world..I know for me..well, to be honest..it's been a struggle. I've thought about seeing someone..just to talk.. I've felt elation and depression since the surgery..for me, it's just the idea of making plans for the future..lol, now that I actually have one...probably sounds silly, but this is a common thing.

    But I am doing better with it everyday..actually saying things out loud, even on here makes you feel brave, and less fearful..and that's a wonderful thing..also my partner and my kids..texting the kids in the US daily helps a lot, and my love is the best care giver ever...now we can do all the things we wanted too, at some point..lol travel being the big one!

    Just hold on, and remember ...everything happens in the time it was meant too...lol, at least that's what I tell myself daily, and it helps!

    Cheering you on!

    xxxxxxxxx

    Kimberly

  • Sorry should have said qe birmingham.didnt think about the rare blood group thing !dare i say think im o+which means presumably there will be most competition for this group.when first diagnosed there wasno where nwar the call on organs that there is now so back then they might have even done on quality of life grounds!!!!apart from itch i gather thats pretty unheard of!i think my biggest fear is getting on list after all these years then going before i get a transplant!!that has to be the worst....like lomms hubby.xx

  • Nods I know what you mean..but wow your lucky, there maybe competition, but you will have so many options, just don't give up if you get on the list and your called in several times..they'll warn you each time, that they won't know for sure until your surgeon sees the liver.

    I am at Addenbrookes. Mr Butler was my surgeon..he was so brilliant, he's the only one in the UK that does the multi visceral organ transplants...that multi organs, like 6 at a time in one person or 4, like that. I was really lucky, his reputation is outstanding . They are moving the heart transplant center at Patworth (is that how you say it?) to addenbrookes in the next two years, all the staff is coming too. They are building it now. It will be the transplant center of the country..it's amazing, the things they can do these days, huh? My surgeon has built a machine they are in trials with..in fact, they used it on my bed mate..it keeps the liver warm and flowing with oxygen and blood versus being iced between the donor and the recipient! Just WOW! Lol I'm amazed by these folks!

    Xxxxxxxx Kimberly

  • So is it good to be o+ or double edge sword?im afraid ive beenlike this for so long that ive never really looled into any of it!did watch a transplant documentary once full cover of surgery..

    Not sure that was a good idea!i can understand your feelings.when your ill your world gets smaller so lm sure it must be really be really hard to suddenly think you might be able to do lots of new/old things once youve recouperated.like jumping out of a plane witj a parachute.thatsprobably a really rubbish way to say it.did you expect to be wellet quicker...

    Spose the excitment /relief of beimg alive is squashed by the pain etc.when the kids were little it all passed in a bit of a blur and some days i did just cry at the thought of not being able to do stuff with them and feeling so ill.

    .but at the same time they were my saving grace.cazer

  • WoW Kimberley xx My Hat Off to You! - You are were so brave! and to be back so soon and to be telling your inspiring story!

    And to Cazer I'm sure you will make it!

    the reason why my hubby didn't - is because he was never on the list because of HCC ( primary liver cancer) they have criteria for the size and even though he was hardly over the crireria he was simply not a candidate.

    Being a candidate for transplant would have been like a gift from heaven so although it's scary and scary to have to be waiting it can be got through - Shining Example is Kimberley here!

  • Hugs you, not a shining example, just a girl who got lucky! And I was terrified of getting cancer, they told me I was a risk for it, and yes, the size can determine your outcome..I'm so sorry love..to be honest, I think YOUR the shining example..on here after so recent and serious and loss and encouraging others? No, you the example...trust me sweet girl

    Xxxxxxxxxxx

  • How you doing this week kimberley?whens next check up.

    That must b bit of rollercoaster! Did u say u have a daughter and is she abroad?recouping from concert so much use for anything!! Take care of yourself cazer.

  • hi sweets! I have my checkup on Thursday, along with the possibility of a drain..we'll see. Hopefully it will be my last :) I had massive ascites prior to the transplant and have had three drains since it..They actually had to drain 15 liters before they operated on me. (I was due to have a drain the day they transplanted and was going in every ten days at that point..lol)

    My daughter and Son both live in the US. My son is married and they have a lovely baby boy names Henry who I just adore..I actually got to see one of his milestones..last week, on Facetime, we were chatting for nearly and hour, and suddenly, he pulled himself up into a standing position..he's been wanted to do that for a couple of weeks, his dad has been pulling him up next to his toy table and he can stand there for like an hour! Needless to say, his Granddad and I were just thrilled..we miss so much being 5000 miles away. I've been up late with my 20 year old daughter the last two nights..Its so nice that she feels like its safe to need me again..we just message and laugh, then I sleep..a lot :)

    Actually, I'm American..I've lived here a little over two years. I came here to be with my partner..I was so ill, I thought I'd see the end here..with him..

    But, miraculously, things changed for me! :) As you know! lol.

    They make you go to clinic appointments once a week for a month, then it goes to every 2 weeks then once a month, and so on. They take your bloods each week and then, if needed, call you during the week to adjust your meds.

    how are you feeling these days? ok ,i Hope..

    I'm doing ok, still have some pain and I rest a lot, but I'm wrapping gifts to send out in packages..goodness, there is so many:) lololol

    love hugs and kisses

    XXXX

    Kimberly

  • Sorry to hear you have to have drains still do they leave a port or sometjing in place or you have an incision every time that must be very uncomfortable/painful for you!shame your lifs in america ...i suppose you cant wait to fly to see them.those baby milestones are wonderful arnt they...i still remember when our eldest walked ...across the room we had visitors from ireland over....we were all encouraging him and he just did it

    So glad you feel up to chatting over intetnet as sure before transplant you didnt have energy or feel well.enough.im okay well.much as usual.quite awake for big bit of night then fall.back to sleep till late morning force myself out of bed.dont really have enough energy to cook...sometimes start but hubby finishes as just makes me feel even worse.getting used to idea that asessment might b sometime soonish although of course it still could be ages but o hppe not!i know i shouldnt want to b rushing onto list but i know now my liver is getting closer to packing in so i would rather not be left in limbo especially if and when i make it on to list i could be a long tome waiting.love and hugs cazer

  • Good for u can't wait to join the club of transplantees

  • Dear liver on my mind when i suggested an extra bit to forum for this site for those who have lost people i did not want you to feel i was saying not to be on main site chat.it is comforting to know that despite your very recent loss and sadness you are carrying on in a positive way....thinking of others a very kind person you sound but just maybe you could help others in the same boat unless ive missed something on the site yhere is no specific help/chat for the carers.i think a lot of us 'sickies'can be wrapped up in our own coping and illness and its so easy to forget that all those who support us go through worse as they have to watch us being unable to change anything.your post lomm has reminded to try and show my thanks to my hubby for his love and care(not saying we dont have our arguments) more as i am very neglectful of this so thankyou for your post as it puts all in perspective again.love cazer.

  • Dear Cazer, thank you for all your ideas and thoughts. I am glad that my posts have been of some use and that (but may you live a long and happy life) that if you ever did go before him he will draw comfort from your appreciation of his care as it's so easy not to say the things the wish we had said and this goes for me too......

    In a way I agree with you about having a separate chat forum for those who have lost a loved one - but then again this is a forum for people to gain encouragement and hope for their conditions and for companionship knowing there are others in the same boat, even when outside in the road, shops, everywhere, everyone seems to be happy and healthy - this forum is one for sympathy in illness and also and in the main for HOPE and advice -

    The example of that is that this very thread here that we are on (and also please forgive me of having somewhat sidled in with my grief) is of Kimberleys triumph over liver disease and successful TRANSPLANT :) and really one should never give up hope!

    I should really take myself off elsewhere and go to one of the many bereavement forums on the internet -( in fact that was the ery reason why I fired it up right now but when I open my laptop I still want to see the HealthUnlocked forum and my name as it connects me to my past if that makes sense......? and that's why I have just been writing and also to thank you

    lomm xx

  • Oh dear lomm forgive me i in no way was suggesting that you should go off somewhere else...in fact i obviously communicated it very poorly as i meant the opposite....that someone like yourself could be in touch with those who are ill or getting better or those connected to pbc or liver disease that are scared of loosing someone or have lost someone as that would be a great comfort im sure.it was rather callous of me to think of trying to put such an idea to you so soon after loosing your husband but i was thinking along the lines of an extra section for carers etc etc running alongside the main forum not a separate entity but tied in so that noone does feel excluded even after someone is gone.my sincere heartfelt apologies to you for making you feel the way i have.my only excuse is poor communication at 4am when i should have had more sense than to write anything.it has really made me think about my husband having heard the story from your perspective and will try to show him more that i appreciate all he does.i also now realise that you need hopeful stories and positivity ..not more sadness.i also agree with you about creativity l sing with a choir and allowed to sit when others stand but suffer the consequences for several days afterwards but it is wotth it it lifts my mood and is a complete distraction from all the symptoms.once again please accept my apologies and hope to keep speaking to you long into the future.best wishes cazer.

  • No Cazer !!!! xxxxxx I hadn't imagined for a second you had thought i should take myself somewhere else! Solemn Promise! I understood exactly your meaning and if you thought otherwise then it's myself who has the poor communication and my apologies to you! xxx I was being ironic saying that I was about to go elsewhere and at the same time explaining why I'm still on here!! and will continue to be I think because its more positive than the bereaement forums! xxx and it's great to hear you sing in a choir! How lovely! I was thinking of joining a choir somewhere too as it takes you out and away of everything.

    Hope you are feeling well as possible xx Sincere regards for your thoughts and suggestions ~

  • Thankyou so much lomm i am very relieved to say the least think im being a bit thick at the moment ill blame my liver...ha ha!!!!sorry i did miss the irony bit.anyway on a more positive note the choir is great for the soul and meeting people.if you fancy the idea give it a go....if you dont like the first one try others as there are so many different sorts.i sing with a choral society...we are doing handels messiah this week...i will struggle for the rest of the week but it is definately worth it.its a complete distraction and my mind switches off from everything else.give it a go.thanks again for not being offended.all best wishes.cazer

    X

  • Love Handels music :) - it's just so upliftng! and to be singing the Messiah too! and if its with an orchestra it just transports you physically as you can feel all that music going right into and through your body!!

  • oh we like sheep...have gone astray!

  • Have gone a stray ....lm sure i will be emotional!

  • OH great a handel fan yes full orchestra saturday...illssit for some movements but stand for higher ones..got picked for semi chorus for lift up ye gates and since by man so chuffed about that...struggle to keep concenttrationgoing but at least semi bits in first half.sunday monday etc will.feel like ive got the flu from exertion sat but lm prepared to put up with that althougj been sick a few times this last 2weeks so hope i can hold it togeather for concert.feel like things are definately changing.when i was first diag i was ptetty much in bed all time then improved a bit once he was delivered(4lb6oz) now im feel like its heading back to that.lomm please please find a choir i think you would love it i take it u used to belong?it will prob make u cry though.i had one time whenwe were singing in the cathedral and the chorus be mot afraid cant rememberwether its b minor mass or st matthew passion prob something completelydifferent but o had tingles up my spine literally as if something was telling me be not afraid......ive aiways remembered that.

  • :) :) :) :) :) :)

    So True!

    And Bach too is simply Out of this World ( my very favourite) and when i read what u said it gave me the spine tingles too!

    Thank you for explaining all that! xx

    I will be thinking of you on Saturday!

  • Messiah went well it was wonderful to be part of but struggled as eve went on aa concentration flagged.missed some entries which is unusual for me but did smaller group bits okay....i.think.re couping yesterday and today.how you doing weather not great down here v.windy.xx

  • Written so much i thought i better post it before i lost it!!!thanks so much for encouragement both of you lomm and kimberley o really appreciate your chats and interest.im so sorry lomm your husband never got a chance of a liver you must feel cheated...so near and yet so far,and you kimberley sound like despite the difficult times you are doing very well lm sure it must be natural to big highs and lows.i will be mentally well prepared if a get a shot at it at somepoint thanks to the honesty .im someone who likes to know what your up against.i could be ages being listed yet i suppoae its a bit like ...how longs a poece of string???? Mucho best wishes to you both.x

  • Best wishes for your recovery.im a pbcer that is on verge of tipping into liver decompensated so more frequent check ups and maybe listing.were you on list years?sorry for asking silly questions but new to your posts.good luck again.x

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