I have had a phone call of Leeds today I am now on the transplant list am in shock still think it's going to take a while to sink in
What a start to 2016: I have had a phone... - British Liver Trust
What a start to 2016
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jojokarak
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57 Replies
•
Congratulations! I hope you don't have too long a wait.
That's great news. I know how relieved you must be. Hang in, you're almost there now, just stay doing what you're doing with regards to diet and whatever exersice you can do.
So happy for you, pinch yourself, happy new year and happy new liver 💜
Think positive hun....it will be okay xxx
Thinking of you! All the best x
That's actually great news Jo Jo with how poorly you've been, fingers crossed for a speedy transplant and a good recovery.
All the very best to you,
Katie xx
Fantastic news all be it a bit scary. I had my transplant at Leeds and they were great. The consutants are all very helpful and are easy to talk to, who are you seeing there? I hope you don't have to wait to long and all goes well for you. Happy New Year 
x
That's a great start to the new year JoJo, really pleased for you.
I had my call last Friday and the emotions bouncing around my head are both scared and excited, I expect you may be feeling likewise. Here's hoping you don't have to wait long. X
Mike
jojokarak• in reply to
Thank you and congratulations to you as well it's nice to know I may have a chance to get on with a healthy and productive life x
cazer• in reply to
Comgrats to you also r 1954 its where you need to b if it needs doing.feel like im on a decline...do youknow if spider veins on face are further sign of going into liver not coping.had check brought forward to feb from may2016and then may b assessed but veins new since last check up....not sure if should go to gps or ring qe or neither.dont tend to go to gps unless have to but also have had increased nausea this last week and feel more bloated around abdo.how do you know if enceph starting...been very quick to get cross but not sure if that just normal but memory worse than ever!best wishes cazer.x
Hi cazer and thank you. Regarding your difficulties at moment I would get an appointment with your gp, I always suffer with anger problems just before a H.E bout. Regarding spider veins I am not entirely sure of relevance with the liver. Are you on lactose and water tablets?
• in reply tocazer
I can't lay claim to being the resident expert in this, so please be careful of what I say.
I'm under the impression that spider nevi can also be an early sign of liver problems so to say that it is solely an indication of the condition worsening wouldn't be right. Regarding the HE, it's very difficult for many of us to say we have it, personally, I didn't believe I had it, in spite of doing some very strange things. Once after my wife called for an ambulance, I was put on the Dementia ward, next to an inmate from the local prison who was handcuffed to the bed.
Mike
I had terrible spider veins all over my chest and arms then my face. My consultant took pics as she had never seen so many. Went as soon as i had my transplant
Congratulations now get your body as fit as you can drink plenty of water , good luck . Bob
My husband has cirosis. A failed tipps. Has 18 litres fluid drained every two weeks. Is suffering from malutrition and muscle wastage as he hardly eats. Stopped the peg feed. Wont have the build up drinks.
The consultant has applied for transplant assessment and I presume he priority?
How fit do you have to be?
Why were you put into an induced coma?
The only positive thing is the new drugs has killed off the hepc virus.
I am glad you are getting the treatment you deserve.
I am at my wits end.
Hi Chandler, hope your hubby gets a transplant assessment because he is obviously very poorly but I will warn you that serious malnutrition can be a contraindication for transplant since the patient needs to have a reserve of body bulk to tide them over the operation and lengthy recovery period. My hubby was 8 1/2 stone at TP assessment and deemed (at that time to be malnourished) and they immediately put him onto 4 ensure drinks a day on top of his very healthy appetite and special diet of carbs and protein rich meals and snack - he gained weight getting to 11 stone which the TP team are delighted with.
In order to have enough fuel your hubby would be better off taking his supplement drinks and peg feed or it may be they decide he is actually too ill for transplant.
As regards fitness, they undergo tests to assess the heart (in some centres this involves a heart scan whilst the patient is on an exercise bike or treadmill) & then a very thorough lung test. Even if the liver transplant is needed if the anaesthetist says no it is too risky then they will decide its a no.
Sorry to sound too gloomy but they will not risk such a massive operation if they feel the patient will not (potentially) survive the operation and they also look at a 5 year post transplant survival.
Wishing you the very best,
Katie x
Thank you. That confirmed my thoughts. I just cannot understand how someone will not take an ensure a day when it is beneficial. He does not like the taste.He is his own worse enemy and I'm starting to give up. Im glad your husband is well. Thanks for info.
My hubby hates it too but considers it medicine and so down the hatch it goes - he was taken off it but still takes one a day because he feels better for it - feels it gives him minerals and vitamins he wouldn't normally get. (Since hubby is currently delisted again they now want his weight to stabilse and they don't want him to gain any more).
Ensure does come in different flavours - hubby takes a strawberry one. Has your hubby tried all the different ones or he could be prescribed Fortisip which is more a juice type drink rather than the thick milky type.
All worth trying.
Wishing you both all the best.
Katie xx
Thanks again.
In hospital he would only have the strawberry one but wont have at home.
Encouragement ends up in a row.
He has appointment with consultant next week so maybe they will advise but he will prob end up in hospital before then as he is well overdue for a drain and resisting going to A and E again
Very frustrating. Xx
I totally agree ensure is vile. Straight after my transplant I lost a lot of weight very rapidly and found it very difficult to drink the ensure. Has your husband tried the neutral flavor? I beleive it is a lot less sweet, they couldn't get in in time for me to try it. Could be worth a try for your hubby.
Well I've had a chat with him and he seem interested in the neutral one. Hoorah
That's great I hope that you can get it quickly and that it tastes ok. Wishing you all the very best in the future.
Not sure if you can freeze some of these things that might help as they tend to taste different if frozen
I know the fortisip can b frozen as i tried that for my son who is coeliac...he wouldnt have them either although hes only 16 and it was less drastic for him and he just ate lots of cheese and has now started to recoup from 2yrs of undiagnosed gluten allergy.what is about men though they just dont want to help themselves!!!! Do you think he realises the severity of not being heavy enough?maybe a stern talk from someone....has anyone said that he would b eligible for transplant if his weight was okay? Dare i say it but do u think hes feelimg so ill that he given up tryimg....maybe if he knew he might b able to have txt he might buck up a bit.must b very hard for you to see him that.keep strong and take no nonsense he obviously not thimking ot through!best wishes cazer.x
Well you made me laugh. And thanks for the great points you made.made me feel better
Glad to b of some use..apologies for my spelling think it was middle of night!! Ive got 3 sons and a daughter so know all about their ways...they are all hopeless at taking tablets so would rather suffer in pain!!!!!i i think well....blow it then if thats what they want.my 16yr old even has jelly sweet vitamins and doesnt take them if i give him normal omes....they are such babies!my hubby is just as bad and will be in pain rather than take anything...then huff and puff and make a big fuss ...oh im so sympathetic!!!but ive got stage 4liver disease and try not to moan and he has a cold and youd think the end of the world was nigh! Even 2 of the cats are males so lm surrounded and outnumbered!!!what is it they say about if men had to have babies the human race would disappear.i should just say i do love my lot..but they do drive me mad...agh!!! You could always tip it in when hes asleep!..
Now im just being silly and i have a very warped sense of humour.x
I like it-you say it the way it is-how are you feeling-have you given up work x
Unfotunately yhe dreaded fatogue hit when o was pregnant and had glandular fever...baby delivered early was okay but i never regained my former health..that was 17years ago and now 52am borderline transplant assessment.ive not had enough energy to work since and had lots of probs with bowels so i cant be sure if i will have to keep dashing off to the bathroom.not vrry compatible with work!we had to have homehelps and childminders as i just couldnt do very much parenting!its been very hard but they have all survived to tell the tale...how about your hubby?x
Was painting and decorating until a year ago but no chance now-cant see him working again-he 61 now so suppose not too premature but I have to work til 66--but try to do one day at time now-not think too far ahead--you have been through it!! But your attitude is strong-wish you well xxx
Hope ur hubbie manages to gain weight and get his strength built up; good luck .
Many thanks, got appointment tomorrow.Hope there be need of assessment??
Should just say apologies to all the brave men on this site....
Its just a leg pull....hehe!
Yes I agree that's a strange attitude. I had something similar called fortisip, and it was most important to take at night before sleep. It's all about protein for the liver. If you don't keep topping up protein your muscles get used instead, and with no muscle you aren't strong, and this is a big consideration before major surgery.
Not only that but consultants do take compliance very seriously with liver patients. I was explained this just before I went to transplant assessment by my local consultant as a bit of a heads up. It's considered a critical attribute to transplant patients for obvious reasons.
I kept getting the Mocha flavour which I literally had to down in one with my nose held. Particularly cruel as I quite liked most of the others.
Thank you for that. Will suggest x
Much appreciated
As Katie has said they need you to be at a certain health status and weight to make sure you have every chance of coping with the operation and recovery. I had major problems with water retention but since I was told to have a diet of fresh food and no salt at all and also a drink restriction I have had no problems with water. I was in a coma because I was throwing up blood the varices had burst and that was why I had the tipps. I hope your husband finds his appetite and gets the listing he needs.
Thank you for info-much appreciated.
No problem it's good to share for poorly ones and family members you don't feel so alone then. My husband has his rants on a Facebook group which is just for carers. That's if you use it x
Congrats! And believe me.. I understand..the whole thing is shocking and scary..people expect you to be crazy with joy..but for me it was not like that..I got really scared, and felt like the clock had started ticking backwards like a bomb. I only had to wait just under 4 months, and yes, I am super grateful for that...now, but at the time, I felt I was not ready. Period.
So yeah..but that's my story. It's a really big thing..and a transplant is life changing. Take time for you..maybe journal your feelings, if you need too. Or paint, walk, bubble baths..whatever works for you. I hope you get the call quickly, and that you have a wonderful team of surgeons doctors and. Urges around u to take care of you..if you at addenbrookes, you should recieve this awesome little book they called a personal assistant..for everything you need to know about liver transplants. Before during and after, and boy, do they cover Everything! Soooo cool! places for notes, questions, diet, you medication regimen after, etc.
I love mine! I feel like the more educated I am about something, the more at ease I feel, in general..if that makes any sense!
Good luck!
Cheering you on!
xxxx Kimberly
Hi kimberley how u doing.
...is everthing stable and did u manage to be at home for christmas?hope all is calm?my bilirubin has gone from 22 to 26 in a month so i think things are def on the change!
Hi there sweets. Sorry for waiting so long..I saw u wrote other replies also. The holidays at home were great, but tiring. I just posted something new last night, as I'll be getting admitted in the next couple of days again.
My liver enzymes, A L T seems to be getting higher, should be a 30 and its 180. My white cell count is still low also, but better than when I left hospital. So I'll be getting a liver biopsy and a bone marrow biopsy, possibly, along with some other tests and procedures. I don't know what the raised liver enzyme means, other than refection, but I think that can be managed with meds?
So that's me.
How are you feeling? Any worse with the bili change? I hope not! And how were your holidays?
Did you manage to stay out of trouble? Lol
I ate some yummy food, that's always good and was spoiled rotten.
It's also my birthday (29th dec) and my anniversary (1sr. Jan) at this time of year..so that's fun also!
Hugs you
xxxxx
Kimberly
Sorry to hear your new liver is not behaving itself! I hope youve given it a stern talking to...is it something they would expect and part of the settling down process or is it something else? Whats with the marrow biopsy? What will it tell them?
Unfortunately i am getting an increase in severity of symptoms nausea increased fatigue and my abdo feels very bloated...did wonder if that might b beginning of ascites...have been off my food more and more crabby! But that could just b me! What no was your bilirubin?ive also developed spider veins on my face....wasnt sure if this sigmificant?
So glad u enjoyed xmas and happy birthday and annivrrsary.i emjoyrd xmas too like uoi say knackering.not sure if its that what has made me feel worse.the blood test was mid december so im not sure if its gone up more in the last month.
Spent too much on pressies but who cares....life reallycan b too short.!!! Muchlove cazer.xxxx
I am really pleased for you. When I had my liver transplant my Surgeon congratulated me on my fitness and said it was what helped me get through the surgery so well. I think getting into a regular routine is more or as important as the exercise itself. For me although I didn't realize it at the time the routine must have imprinted on my brain and was so helpful when I was being mobilized (which can happen sooner than you think) after the op. Good luck.
Hope u dont mind me asking but what ukeld score are you and do you have varices etc...im borderline assessment go to qe feb and they will consider then but not sure if i will b waiting a long time yet for assessment?its the waitind game.x p.s. sorry didnt say congrats getting on list....ots a shock im sure but if you need ome best to b on lisr asap thats how i feel anyway.
My UKELD is 56 and I'm still waiting for an assessment desk it's being under the care of the QE for 11 years, my Gastro letter received today stating massive splenomegaly despite no variaces!!
*despite it rather
Depending on how symptomatic you are tommyc you should ask the question regarding are you likely to get an assessment, sometimes you have to be the squeaky wheel. With a UKELD of 56 you meet the minimum criteria for listing but it does depend on how symptomatic or how 'poorly' you are along with the blood results to see if you are in 'need' of a transplant. Ask the question if you feel you are at or nearing the need for transplant.
My hubby was listed for 10 months at Edinburgh but delisted because he was deemed too well and the risk outweighed the potential benefits. He continues to be monitored and should the need re-arise we trust that he'll be reassessed and relisted.
Wishing you all the best.
Katie
Hi Katie, thanks for the response, do you mind me asking where your husband is in tens of UKELD now and when he was listed? Many thanks, Tom
We have never been told his UKELD score at any point, never been told any staging or anything regarding figures. We were told he was 'borderline' at TP assessment but they did decide to list.
During the 10 month wait his blood levels fluctuated so sometimes he didn't meet the criteria and eventually they decided it was pointless keeping him waiting when there was no chance he would reach the top of the list in his current condition.
He (I suppose) has minimum symptoms. Did have portal hypertension and varices (obliterated after banding of 42 varices), portal hypertensive gastropathy, minor HE symptoms, aneurysms in splenic artery (had to have embolisation operation after discovery at TP assessment). Zero libido, hand tremors, spider veins but thankfully no jaundice, itching, acites - his major symptom is chronic fatigue which isn't just physical tiredness but a complete fatigue, lethargy, no interest in anything, little drive, difficulty with concentration, memory and speech, sleep disturbance and difficulty sleeping at all. Doctors have said that the chronic fatigue may not be cured even by TP.
On most recent blood tests everything barring AST and one type of white blood cell were completely in normal range - his spleen has died so he no longer has issues with anemia, blood clotting or low platelet count & it has also reduced the Portal Hypertension - most recent ultrasound showed absolutely normal portal veinous pressure & flow of blood.
Transplant is a life saving operation only, they don't do it purely for life improvement. We were told they used to do quality of life transplants but with so few available organs and many QOL patients not actually getting much improvement post transplant then they see TP as a life saving operation - it's only those who life expectency without a new liver is limited that rise to the top of the list.
Katie
Hi tommy..
They seem to take most notice of bilirubin and albumin.ukeld 50and above makes us eligible for txp but not if not ill enough
I too have very large spleen and do have varices
My albumin and bili are gradually heading in wrong direction.he thought prob another bad cough etc might be enough to tip.me into decompensation but ive been ill for 17 years...im fed up with the wait now...i know it will be another wait but i just want to get on list.i expect you feel the same.cazer.
I feel exactly the same, despite the risks associated with transplant I just want mine out, how is illness measured and defined, is decompensation deemed ill enough to list, my bilirubin is 46, my Alb is 43, the latter I haven't taken much notice to as it's not part of the UKELD criteria. If UKELD is a good measure of mortality in most cases and an indication for Liver Transplant, how else do we measure how I'll we are?? I'm not sure why my Gastro is writing letters to my GP quoting MELD scores, isn't this form of scoring now defunt and thus irrelevant? I tried contacting my Gastro after my recent appointment as I calculated my UKELD of 56 and the secretary responded, confirming my Gastro would discuss this at my next appointment which is 6 months away!! Thanks for listening!!
Think ukeld has to be 49 but that will not get you listed on its own
Dont take my word for it but i was told bilirubin of 50 is another milestone but i think its probably a combination of things once you get sort of in this ballpark.
Think this must be longest feed ever!!!! Dont you think.cazer.
Good luck Jo-jo; at least you are on the list now.
Hi Tommyc,
I have had PBC for 10 years now. Diagnosed aged 31. I have had my assessments and have been successful as a result to be placed on the waiting list for transplant. I try not to focus on my numbers as they scare me but my UKMeld score is 56 but the factors that make it worse for me is my bilirubin is now at 207. My INR is going up and I'm generally not feeling well at all I'm very jaundiced and zero energy levels 😩 I have my monthly appts with my consultant where he tells me I'm reviewed and the transplant team are kept up to date with how I am. I have been on the list now for 7 weeks. Hope the information helps. Much love. Nicki 💞
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