Hi everyone. Just got home after a 9 night stay in Norfolk & Norwich hospital due to Ascites. They drained almost 6 litres from me. I've been home since Friday and already I feel like the Ascites is still filling up. I literally, no exaggeration look 9 months pregnant.
I have been informed that they are now putting me forward for a Transplant assessment. I've had Cirrhosis since 2014. This is my 2nd bout of ascites and Ive recently had grade 3 varices banded. I've been abstinent from alcohol since 2016. I have a terrible stabbing pain on the upper left side near my ribs and I feel nauseated all the time. Probably from all the swelling. I'm dreading it's not something worse. It's not even close to my liver. Probably my anxiety and all the crying.
I am absolutely terrified of this news. Although I've always kinda knew it was coming. Transplant and/or death. I just turned 40 in August. I'm unable to sleep properly. Having nightmares. I hate to run on and complain because this was all my fault. Please stop drinking. Trust me I know its hard, but you don't want to end up like me at 34-40 years old. We all think it'll never happen to us. Reality just got real, real fast...... Anyway.....
My question is, what do I expect at the transplant centre for the assessment stage?? My nearest one is Cambridge Addenbrookes. I guess just be myself. Shall I write notes or a daily diary of my health, what will go on? I've got a ct scan tomorrow and consultant appointment in early October. I just wondered if anyone seeing this has been through the transplant process and could offer me any advice for this upcoming stage of my Cirrhosis. I'm worried also as he asked me if I have any social support and I really don't. I left my 15 year marriage to get well and rid myself of my addiction. Long story short.... Along with covid it's left me with well just me..... Does he mean like who will look after me after the operation. Will it affect my chance of being accepted onto the list??? If God willing and I am given this blessed gift of a second chance. I cant stop crying, I'm a wreck. I'm not quite sure why. It's good isn't it?? Going onto the list. It feels like I'm running out of time now. I'm scared of death at the best of times. This is breaking me.
So sorry to run on. I couldn't keep scrolling the internet, making my anxiety worse. Are there any support groups for people pre transplant? Idk
Thanks for reading x
Samantha 🙏
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Hi SamanthaSorry to hear how your feeling, I really think unless you have been in the kind of situations stated on hear no one knows the anxiety, trauma and emotions yourself and family ( if with a family) you go through.
My husband was fortunate to received the most amazing gift from our special donor/ family. This was a second attempt as the transplant team prepare you all along the way for ups and downs. Our first donor was unsuitable. Horrendous to hear that but kept going and the gift did arrive.
The assessment for my husband lasted or should of done lasted a week. However due to him being so poorly he was in a hepatic comma. The amazing team at kings even though he was in ICU got him through it and out if the comma. We never thought he would get on the list. PLEASE DNT GIVE UP HOPE, HE GOT ON THE LIST AND WAS TRANSPLANTED 17 DAYS LATER. These transplant teams are amazing they totally understand your fears worries so talk to them. The road even after transplant can be rocky for some but to be given a chance is the gift alone. We decided even if we hadn't of got on the list there is still super care and support out there. Sorry for such a long mess take care
Hi Samantha,
There are lots of knowledgeable people in this community that can support you. Could you have chat with the nurses on the helpline as well? I think they will make a huge difference. My sister called the helpline when I was in hospital as things were going wrong, and they helped her a great deal because I wouldn’t fight anymore and gave up. That advice filtered through to me and changed my life as there is hope. I am sure you will receive lots of great information to make you feel supported and positive about the next step.
I wanted to reach out to you as a human being. I can see how upset you are and it’s understandable and ok to feel like that. Please don’t feel that it’s your fault though, you’ve done so well and life happens, we can’t change that. There are many of us here that are in a similar position or seen a family member with this condition for a whole number of reasons, there’s no judgement here.
I have been through a lot of the physical symptoms that you are experiencing so I do know how it feels. I had pain everywhere due to the intra- abdominal pressure. It sounds like you are getting good medical care.
You take care, you’ve been through so much already, you can do this moving forward xxx
Sending you a virtual hug and strength, don't give up, we are all here to support you on this site, so many knowledgeable people who can support you, when the time comes for a transplant, you will need to relay from the offset that you will require Social Care support upon Hospital discharge, I had support when I had become so poorly last year and they were so helpful, Take Care, Big hugs xxx
Wish I could cuddle you, same age as my daughter. You’re being given the chance of a future, it’s wonderful. All the reports of how fantastic people feel after having transplant. It must be scary but I’m sure you’ll get a lot of reassurance from people on here and the medical profession. Those clever people are going to get you well again. Lots and lots of good wishes. Xxxxxxx
I know it is hard but you need to calm down a bit my wife was in And out of james padget hospital and had her transplant done at addenbrooks who are great very good very hel]full they will look after you the assessment from memory is just a bit of a chat a few easy tests nothing to worry about and post transplant you will feel a lot better and will think what was I worried about
Think new start new life and try to be happy about it
You do need someone to talk to though just for the bad times
For me being sent for assessment was a blessed relief. Like yourself I already knew where I was heading as my liver was deteriorating and there wasn't anything that was going to stop that process outside of a transplant. Please look on it as a good thing not bad. That is what it is, its the chance to start again afresh. New liver, new life.
The assessment process itself is dead straight forward. Nowadays its mainly done as an outpatient over a few days. The first day is usually a quick introduction to the process and lots of info is given out to explain everything. You'll also have a number of tests and scans carried out on that day. None of the tests are particularly troublesome, you give a load of blood samples, lol. Have an ultrasound, an echocardiogram and a lung function test. I think that was about it from memory. Everyone is very friendly and you get the chance to understand the process better and ask as many questions as you like.
After a few weeks you'll be called back for another couple of days. They need a bit of time to get the results of all the tests together, hence the gap. During that second stage of the assessment you'll get to meet with all the rest of the medical and surgical teams where they can examine you and explain their bit of the process to you. Again they are really happy to answer any questions queries or concerns you may have. There's a bit of waiting around during that day so take a book or portable computer to occupy yourself, lol. If they think you need some more tests then these will be arranged for those two days too. Again dont worry too much if that occurs. They are just to fill in gaps in knowledge or clarify things. Usually a few days after the assessment ends you'll get a call to let you know if you'll be put forward for listing.
Its not a bad idea to list your symptoms on a piece of paper before hand. I did that and it was very helpful. Having a daily diary probably isn't necessary, but if it helps you remember then its not a bad thing either. I did my list as I knew I'd forget something, lol. Besides it saved them writing it all down.
Between the first and second part of the assessment you'll probably be asked to take a food diary so they know what you generally eat. You'll only have to record a couple of days though, not every day. Be honest with that too. Its not about giving the impression you are eating healthy everyday. Its just so the dietician can give you advice on what you may need diet wise in relation to protein intake and how you may be able to help relieve things like fatigue a bit better. So dont worry if you have a bag of chips every night at midnight. Just write it down.
With regards to the social support side of things then they prefer people to have someone with them throughout the assessment as after transplant its helpful to have someone keep an eye on you and help you out during the early stages of recovery. However, I do know some people that have gone through the whole process without. I think there are other support mechanisms that can be arranged in those cases. Just raise this with them and the reasons when you go for the first day of assessment. They can then start to get the ball rolling with that. Not having the social support isn't a show stopper, its just helpful to have as it does make the process a bit more straight forward.
Hope all that is helpful. Being recommended for assessment really is a positive step forward.
Me and ascites are old adversaries having had approximately 26 drains, the largest volume being 15 liters. My assessment lasted just 2 days but normally it's 3.and involves meetings with alcohol nurse specialist, social specialist, financial advisor, Consultant along with transplant coordinator. Everything i experienced was very positive and conducted in a professional and friendly manner at St. James Hospital in Leeds. I had my transplant on 06/12/16 and I'm still here, so far, so good. Don't worry and stay positive, easier said than done I know but do try. In the meantime good luck and keep smiling, I should be dead but I was saved by a total stranger, how fantastic is that, the ultimate gift x
Hi, I live near Norwich I had my transplant at Addenbrookes may 2017. The transplant team are wonderful the best in the country. Assessment is lots of tests, blood, CT. Scan, x ray, heart scan, lung function test, you meet the surgeon and coordinators, they have to make sure you are fit enough to survive the surgery. They are all very friendly.There is a support network ALTA, Addenbrookes liver transplant association, we have a group on Facebook and offer lots of support please look it up if you use Facebook you would be very welcomed , several people going through assessment and waiting for transplant.
Please feel free to pm me either here or on Facebook
Sorry to hear you're having to go through this, sounds like you've already been through enough. I had the assessment just over a month ago in Edinburgh. Were you told much on what to expect? You probably get some info posted out to you before you go for it. I'm not sure if the procedure will be different. I was in hospital for 4 days for near enough non stop tests and meetings with different professionals. It really sounds more daunting than it turned out to be though. I cried a lot too, it's difficult to get your head around it but the staff really were a great support, that helped a lot. For me, the tests included:
A vascular test (cycling one),
A respiratory test,
CT scan,
ECG and chest x-ray,
Also had a physiotherapist test my strength and monitor how far I could walk in 12 mins.
The endoscopy I got out of because I had one 2 months before (yas!)
Blood tests - a lot of them lol. I guess we're used to that.
A lot of the tests are to make sure your body can survive a transplant.
Saw a lot of people - a hepatologist, a surgeon, a registrar, transplant coordinators, a psychiatrist, a social worker (they make sure you'll have support pre and post transplant), a dietician, the physiotherapist, an anaesthetist, a radiologist...I think that was about it.
A meeting was held on the last day about who would be placed on the list. I'm on the list now. I'm not classed as super urgent so I could be waiting a few months. It's been an emotional roller coaster but I'm relieved and will be forever thankful if it brings some normality back. I can't stand living like this. I'm 36 and it is effecting absolutely every aspect of my life. My liver is dancing of my very last nerve. 😭
Try not to worry too much about it. You will be guided and supported by staff every step of the way. The British Liver Trust do a group video chat at the end of every month. I'm hoping to catch this month's. Took part in one for autoimmune hepatitis before and found it really helpful. There's also a helpline. I'll get the info for you and post it in a reply to this massive ramble.
Please don't be hard on yourself. It's difficult enough to process without adding guilt into the mix. ❤ Drop me a message if you fancy a chat.
The BLT helpline is 0800 652 7330. You can call Mon to Fri between 10am and 3pm. I registered my email to get notified about the support groups. Here's the link -
Hello,My husband was assessed and registered for transplant in January this year. We had a consultant appointment first, then came back for a day of tests, followed up with a phone appointment to let us know their decision to go ahead. Yours will be similar unless the lifting of Covid restrictions have changed things.
He has been called twice so far, but both times haven't worked out unfortunately, so be prepared for this! My husband is also only 41, and is lucky enough not to be classed as urgent, hence our wait. They have said because of his age, they would rather wait and get a perfect donor for him.
He focuses on keeping positive, and busy as possible. He has thrown himself into getting as fit as possible, as he knows this will help him recover quicker from the surgery.
It is stressful, and I reccomend you use the waiting time to build some sort of support around you - have you looked into support groups? It won't affect whether you get listed or not, but it will be a big help to you.
Good luck and keep us posted with how you get on
Xx
Awwww bless you darling you must feel so scared but please try and stay positive I have recently been diagnosed with a Hepatcelluar Carcinoma I am 75 and I am totally bewildered by it all as I am already fighting breast cancer from 2019 I am sending you the biggest hug all we can do is stay strong and fight, everyone on here will support you take care xxx
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