Hi I am new, I am in my late sixties with two tumours in my liver. I am currently on the transplant list.
But scared daily, hourly, indeed every moment. As one of the is quite big and near the 3cm cut off point when you are taken off the list.
It’s the waiting and fear I feel the most.
Anyone else waiting?
Sorry to hear of your stressful wait. How long have you been waiting? Have they indicated whether there are interventions they can do such as TACE (Transcatheter arterial chemoembolization/transarterial chemoembolization) to shrink the tumours to keep them under cut off limits. I don't know how many folks on the site are still waiting for transplant - we seemed to get a spell there where everyone was getting their call.
Fingers crossed your call comes soon. What blood group are you waiting for?
All the best to you, Katie xx
I know it does not seem long, but the journey to get on the list started in May and took until August before I signed. You know the assessment, I mean.
Yes, I have had two TACE and the first did not work completely. They did the second and I am waiting for MRI very soon to see if that one worked. However, there is only .4 cm left to play with...
They say I could be on the list for 12/15 months... as I have O Positive blood group.
Thank you so much for your answer, it is so kind of you to take the time. I know truly I do, that there are so many in the same position. I worry too much I am sure. I should live each day as it is. But it effects my sleep and my everyday.
My hubby was assessed for transplant in June 2014 - we 'lived on the list' for 10 months so I well know the restrctions without the added stress of the tumours. He too is O + so yep it can be a long wait but they must think you are well enough to wait otherwise you'd be higher priority and closer to getting that call. In our case, hubby was actually delisted because his condition stabilised so we are back at the watch and wait stage.
Try and live life to the full and as much as possible normally, I know you jump every time the phone rings etc. but you have to be prepared but not dwell on it 24/7 - your call will come and probably at the most inconvenient and when you least expect it.
All the very best to you and fingers crossed you keep well and your call comes a.s.a.p.
Katie
Hi Katie is it ok to reply to your name? I have no idea is it wrong?
I hear what you are saying and my lesson today is stop dwelling on the what ifs.
To live in the day, for that day. To try to stop controlling and worrying. Being a control freak all my life this is hard LOL.
I am not sure if being delisted is a good thing or not ???? I have no clue does that help your stress or not? How is your hubby day to day?
It was a shocker at the time of his delistment and we felt a bit like the light at the end of the tunnel had gone out BUT we got our heads round it, he's not poorly enough - no ascites, jaundice, varices under control and only mild HE. Lots of symptoms which affect his day to day life and independence but he still has a life so we make the most of the good days - today has been good. A lovely if damp but atmospheric Autumn day with rolling mist rolling over the forest and mountain landscape of Galloway and we've managed to go out and do a 5 1/2 mile walk. Hubby will near collapse later but hey he's been out and had that much needed fresh air, positive endorphine release etc. etc. We weren't allowed to venture that far from home when he was listed so we enjoy the freedom, lots of caravan holidays and days out.
Knowing he may in the future require transplant we hope he gets his chance.
All the best to you, Katie x
Your hubby is incredible, 5.5 mile walk that is great, I cannot manage that. The fact that he is relatively symptom free is a good thing yes.... I think that is a positive.
I am still thinking about your walk wow, that is so good. Since my last TACE I have been quite tired and lacking in energy.
I am hoping that you and your hubby stay strong as you are.
This group is so amazing, everyone helping each other, giving strength and hope to each other. I am so glad I found it. Keep me posted Katie give my best wishes to your hubby and thank you again for your support. Jaycee
Hi Blackpearl. I am now 2 months post transplant and I can tell you that it is natural to have these fears. Everyone whilst waiting on the list will have their own particular issues. I feared that I would become too ill and too weak for transplant. I feared that the cancer would go elsewhere and that I would be taken off the list. I just lived the healthiest way that I could, eating healthily, avoiding fats and sugars and junk food and of course alcohol. That phone call will come when you least expect it. Keep your chin up and try not to spend too much of your energy on worrying. Wishing you all the very best. Alfred
Thank you Alfredthegreat, I so appreciate your reply.
Wow, it is like you are in my head, I have all those fears. I am living healthy avoiding fats not too good avoiding ice cream LOL. I have not drunk for nearly 10 years. You are so right too much energy spent in fear and worry. Like my school report used to say "Must try harder".
Hope you continue to stay well and happy and I really appreciate your support thank you.
Hi pearl
Alfred and me seem to have similar experiences and we both had our transplants in August this year!
It took me 18 months from point of consultant saying “you can’t go on like this” to getting on the famous LIST. There were so many tests retests etc and all the time I was waiting for them to say, oh now you’re too old lol. 😁 even at the final Assessment clinic the Anaesthetist decided I should have an extra test (3 extra months delay) because I have high blood pressuure and diabetes and that therefore I may have been adversely affected by the anaesthetic. This was despite the fact that I had had both problems for over 25 years and this had been known by several consultants over 4 years and nothing raised. I know he was right to get me checked but why was it left until the very very last moment for it to be raised?
Anyhow, to cut a long story short (oops too late sorry) I was put on the LIST and nearly did a jig 😁😁😁
Within two months i had had my tp despite also having an O pos blood group. And this was at second attemp - first was after 6 weeks but liver not good enough - I felt like crying 🙁
Please try not to worry (easier said than done) look forward to after the tp. It’s like a miracle (not quite an overnight one but not far off) and, I hope, you will feel like a completely new and improved person physically and mentally 😁
It does indeed, at times, seem like #a long and winding road# but it leads, hopefully, to a good, no great, solution.
All the best!
Miles
🇧🇧
Hi there Twosmiles, What great optimism you have given me, you and many others on this awesome site. I told my husband I feel so much better, now it is like a lifeline this group. I can confirm since joining my outlook has changed, I am still scared obviously, but in no doubt, every one of the doctors has my best interest at heart. I also know that it is due to my control freak nature which blows out of all proportion that gets me upset sometimes. I put this down to always running my own business and being responsible for what is happening, putting it right when it goes wrong and then the realisation that I cannot put this right.
Thankfully, since joining I am now reigning my control freak switch in a little. With a huge dose of acceptance with my day, and I am trying to live each day now with hope in my heart that I will eventually get that call.
I cannot thank you enough for your support and encouragement. Is a two month wait for a transplant some sort of record?? That is incredible.
Makes me feel so humble this site, so many people all going through their own battles and still they are there for everyone else. Huge respect for everyone. xxx Thank you.
Jaycee
Hi Jaycee. When I was finally given the chance of assessment and managed to actually get on the list I waited only ten weeks for that phone call, My meld score at that point was 54 and so I did have some priority. Luckily for me it all went ahead first time. Now post op I look at life very differently, like Twosmiles said like a new and different person and I'm going to make every minute of my new life count. I'm so grateful to my donor and family for this miraculous opportunity. Chin up, keep smiling, you'll get there. Alfred.
So fabulous to read this xx
May I ask you what is a meld count?
MELD stands for Model for End-Stage Liver Disease. Its a mathematical calculation and is a scoring system to assess the severity (need for transplant) in patients with chronic liver disease.
It takes into account results from blood tests - Serum Bilirubin, Serum Creatine and INR (blood clotting time). The resultant score then brackets the patient into 'potential' life span brackets.
In the UK the United Kingdom Model for End Stage Liver Disease (UKELD) score is more commonly seen and a UKELD score of 49 is generally regarded as the minimum need for transplant listed (unless other factors such as liver cancers are present).
Hope that helps a bit. Most patients don't get told any of these scores as it is easy to get bogged down or scared silly by them. Best to get on with life and deal with health as it presents rather than mathematical sums that may or may not indicate certain prognosis.
All the best,
Katie
Hi Katie
I have two tumours so that may account for why I had not heard about it. Thank you for the explanation really useful. I have liver disease as well. So I may ask about that. Thank you so much xx
Hope you get the call soon. I can't imagine what you're going through. Take care. Deb 💓
Thank you Deb so appreciate your support. I have feelings of not deserving it and feelings of fear all mixed up. I have to try harder to live in the day. There are many out there with the same problem and worse.
Hi. I’m on the waiting list. I had liver transplant back in 1995 so have experienced both sides. Your fears are absolutely normal and I do feel the waiting is the hardest bit to do. It’s a time when you feel you have not got much control of what happens next. Keep your chin up and eat healthy and try and keep as active as you can(sometimes easier said than done). I really hope your call comes soon. Take care x
Hi Smyally, wow you really have seen both sides. I am so impressed you have done so much and come so far. I have been a control freak all my life so yes the loss of control now is horrid. From reading these posts I am learning still in my life at 67 I am proud to say I love learning new things, and today my lesson is live each day and stop trying to control everything. I hope your call come soon as well. My blood group is O positive they say it is a long wait 12/15 months.
Hiim thinking of you and I really hope you get that call very soon. Take care Lynne
Thank you Lynne for your support I really appreciate it. I hope so too, I have to stay positive and believe. Thank you.
You will get so much support on here it is amazing to feel you are not actually alone. Over thinking is a nightmare, but we all do it. I overthink everything all the time. I am finding youtube calmness videos really helpful for calming down an overactive mind. It has an accumulative effect the more you do it. I hope you hear soon. Big hugs.
Gx
Thank you sunnysmile, you are so right I feel uplifted and rejuvenated in mind and spirit since joining. I am 100% certain no one knows just how much it has all helped me. One minute I was in a dark place and the next I am bathed in light and positivity. Just knowing I am no longer alone. Thanks to people just like you.
Jaycee
Fingers crossed you get the call soon xx thinking of you x
Take care lovely.
Lisa xx
Hi Miss Fab, that is a great name I love it as a username, I can never think of names when I am asked. My main lesson from today is to stop trying to control what is out of my hands. I am amazed by the support you guys have given me, I am so very appreciative to just be able to talk to people with the same or similar problems. So thank you.
Hiya black pearl I loveyour name too ....very precious 💖 xx Yes babe it's a great forum we're all here to help,listen or just make you smile a little 🙂 xx
I get the trying to control things though & that's tottaly normal x I'm terrible at thinking "what if" all the time or blaming myself for being ill, when I first got diagnosed I said to the consultant "why me??" & his reply ...."why not you?" it was like a kick in the teeth at the time. 😢 xx
But time moves on & I can't keep looking back so my lesson I've learnt is to try and get better & if I can get back to fabulous xx
Take care lovely xx
We're here for you anytime xx
Lisa ....miss fab 😀 xx
Aww, that is awesome thank you Miss Fabulous!! I kept blaming myself too. I was only told yesterday stop looking back and forgive yourself... At 67 years old, I am taking baby steps to that goal. Thank you all so much, I just don't feel alone anymore. I felt like I was drowning in it all. I can swim I can do this xx
You're very welcome babes xx I think we all have similar feelings. My sister tells me constantly to stop blaming meself ❤ xx
Baby steps is good....take as many as you want to,feel you can or need to👍xx
Omg my fav saying through all this is "its a case of sink or swim & im not ready to sink ....so im learning to swim" xx
You can swim,swim with me,you can do this 💪xxx
Take care lovely xx
Any time you want to rant,cry,moan or smile I'm here for you 💗Xx
Lisa 😀 xx
You can do this. We are all cheering you on xx
Your fears unfortunately come with the territory. As has been stated they will be keeping a close eye on any growth and will intervene with TACE or a hepatic embolisation where necessary. I spent 18 months on the list and had 5 embolisations during that time. I was also told that it is unlikely you would be removed from the list once on it, so the hardest part of the deal is getting on the list. Once on it’s up to you to keep yourself as healthy as is possible to undergo a huge procedure. I wasn’t so lucky, I haemorrhaged on the table and a transplant became a battle to stay alive. The prognosis was a maximum of 6 months, but I am still here, reasonably healthy, just had my 12th embolisation, getting ready to celebrate my 2 year anniversary of the failed transplant on a cruise in the Carribean. I write a blog 1liver1life.wordpress.com which you will recognise all your fears laid out in black and white. I have been told that it is humorous, thought provoking, emotional, and a mixture of all them together. You may enjoy it, you may not, but have a look, I would be interested to know how much you can recognise.
Take care and keep us informed of progress.
Ray
Wow, Barnetaccounts, wow, I am so humbled, you have been through so much. I am so grateful you took the time to reply, as I am to everyone who has written. You have all taken me from feeling like I am drowning alone, to having company and comrades, in a journey that is not easy. I hear all you said. I have had two TACE so far. There are questions buzzing around my head, like what if it does not work again. As the last TACE only had a partial success on one of the tumours, that was the smaller one which was only a small success. The larger one is still there 2.6 cm and has only .4 cm left to grow before I reach the limit of 3cm for more than one tumour.
So maybe I won't make the long time they said they said 12/15 months for my wait.
You have been through so much, I will for sure look at your site. I am in awe of you, to have been through all that got the call and then haemorrhage and given 6 months!!!
Wow, and it's your 2 years anniversary and still 12 embolisations! Seriously, you are incredible. What strength you have.
Thank you so much for your time in reply I really do appreciate it. I hope and pray you will stay well and happy. I will be thinking of you sending positive thoughts your way.
Hi Blackpearl,
The call will come, I am B+, so it was a long and anxious wait, plenty of ice cream for me too but otherwise kept as well as possible and kept working, fortunately mostly from home or hospital. Acites and oedema was bad, shoes a real problem, 14 litres drained in one session.
Now 2 months post transplant, try to focus on life after the operation but right now your focus will be on getting the call.
Good luck and good health.
Wow, that is amazing I am truly so very happy to hear you have had yours and doing well. Such great encouragement. I have not had any ascites, don't want to speak too soon LOL.
Although I have noticed I cannot seem to lose weight. I am exercising and eating normally and trying to be really healthy in truth around 4 days a week. I tend to go a bit mad after that. Bring on the cake and ice cream time LOL. So maybe the weight gain is something I should talk to the doctor about.
I am so thrilled to hear you are 2 months post I am truly.
Congratulations.
Jaycee
Talk to the Doctor, one litre of fluid equals one kilo and if you are exercising muscle mass will keep the weight on. I am now 5 stone lighter than my worst point. The call will come, can I ask which hospital?
I am in Dorset, but my transplant team is the Royal Free Hospital in London. They have been great in fact everyone has. My biggest fear is the size of the tumours one is 1.5 and the other 2.6 as we know the cut off is 3cm so I live in constant fear they will take me off the list. I have had two TACE but the first did not work as well as they hoped and the second was in September I have my MRI on Monday so don't know the result of that one yet.
Jaycee
Good luck, it is not a decision they will make lightly. My transplant was at the Royal Free, can not fault them, everything was superb (apart from the food). Long trip for you to get there. Keep well and look after yourself.
OK great to know. Thank you. Since I first came to this site only a few days ago you would be amazed at how different I feel. I am much more positive, I don't feel alone anymore. I am humbled by everyone who is going through this or has been through it, is so helpful and kind. I can honestly say this site has made a huge, huge difference to me. So thank you all so much. xxx
Hi
I had 3 tumours on my liver and one was 3cm others 11/2cm and had 4 lots of TAE to keep them at bay and 1 abilation was on list for 17months thinking that call would never come but it does.I totally get where you are right now and it’s a place that only those who are there or been there will understand the best advice I can give is don’t let it control you,go live your life and do anything you normally would with the only exception of being within 3-4hours away from your hospital,your constantly checking your phone has charge & signal anyway so I won’t mention that ( ooops I did) lol
That call will come my friend and when it does all thoughts will go through you relieved,happy,anxious,sad as you realise some hero has lost there life but it’s the call you need so off you’ll go and it’s really not as bad as you imagine I had hardly any pain just very light headed (drugs) and relieved
I wish you all the best on your journey and use this sight as there is a lot of really good people on here
Huw
Hello, 1 football, great to hear from you. Thank you for what you have written it gives me such hope and brings me reality and clarity. 17 months was a long time you must have been where I am with your fear level, and worry? I am so truly encouraged by your words. I cannot thank you enough. Everyone has been so amazing. This new me since joining this site is getting her positivity back !! Thank you. Jaycee
Hi again Blackpearl,
Something that occurred to me today and I hope that this has been explained to you. You might get the call, head to the Royal Free in an ambulance and be prepared for theatre. On some occasions, the liver may not be good enough and you get sent home under your own steam and cost. My first one I even took the pre-med. Hopefully you’ll avoid this scenario but bear it in mind. Best to wait for a liver that is up to the job.
Just thought I would share that one in case it has not been explained. Fingers crossed, you avoid this scenario.
Hi
I can better that!!
My first call came day after my 54th birthday, called at 2.15pm got to hospital,had tests and was taken down at 11.15pm, woke up in icu 11am following morning had all tubes attached even catheter and breathing tube down throat when they removed that I thought great I don’t feel to bad only to be told that I was 15 mins away From knife to skin when somebody in more need than me had taken priority.
Wow, that certainly takes a lot of beating. One thing, breathing tube? More like a breathing wide bore pipe, not nice.
Have you had the full procedure yet, I do hope so?
Lol yes it does feel big and yes got 2nd call on 20th may all went like clockwork returned to work 6 weeks ago
Hi Snoutie, I was sure I answered your message but when I looked it was not there. What am I like. Yes, I knew about this because I was in the Bournemouth Hospital at the Liver clinic, the waiting room was busy and there was this lovely couple. We spoke and he asked me had I ever been blue lighted? I said no, as I was here for my assessment for transplant. He said that he had been sent 3 times and sent home again. So this was one of the things I did actually find out about before I went on the list... I have not seen this guy again or his lovely wife, and I am hoping by now he has had his call and is recovering xx Thank you so much for telling me again it is good remember that fact. I saw 1 football reply after I sent this the first time... what a journey this is... But thanks to the awesome folks on this site I am now more relaxed and not so stressed. Thank you again.
scared newbie
Newbie Looking for reassurance I suppose. 
Newbie here - supporting my dad through Cirrhosis
Hello - I'm a newby here
