Can you help me? My relative has been diagnosed with Liver Cirrhosis and is told they will need a transplant. They await an invitation to the liver hospital. Not sure if this is the process to get on the list or a second opinion/confirmed diagnosis. They have diagnosed cirrhosis following a lengthy hospital stay, MRI, bloods, urine and biopsy. My question is, would a gastroenterologist tell my relative they need a new liver if they weren't sure? Is it possible they've jumped the gun?
I understand my relative wants to look at any positive, but I'm afraid they are setting themselves up for another body blow when they find out the diagnosis was 100% accurate, they just didn't want to believe it?
Thank you in advance for your input.
Violet x
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Indigo99
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Quite a few patients get told they might need a transplant when they have cirrhosis because there is no other 'cure' for it. But there are often improvements that can be made and not everyone with cirrhosis will need a transplant or get one.
To get on the list requires a full transplant assessment which is carried out at a transplant unit. It is a multi-stage process involving a whole team of professions.
During the assessment process they will confirm the diagnosis and staging of disease and they may have additional knowledge of extra measures that could be tried before going full steam into transplant.
If they decide that the patient is indeed poorly enough and there is no other potential line of treatment then the assessment goes on to check that the patient is actually fit enough to undergo the listing, operation and subsequent lengthy recovery period.
This part of the process will involve a multitude of different tests and professionals - often there are scans, possible endoscopy, breathing tests, heart and lung function tests, bloods by the armful, educational sessions with co-ordinators, social work, consultants, surgeons, anaesthetists, sometimes psychologist and more. The dietician service slso play a huge roll in getting and keeping patients well enough for t/p.
At the end of the assessment process the multidisciplinary team will gather and go through all the data gathered and come to their decision on listing and there are numerous outcomes that can arise.
1. Yes listing will potentially be needed at some point but not yet - alternative treatment options might be considered or patient not yet 'ill enough' - risk out weighs potential benefits.
2. Yes, listing with regular transplant clinic appointments to monitor health and listing priority level.
3. No, patient too unwell. Survivability chances too poor - insufficient lung, heart health or poor nutritional state.
4. No, due to other factors. Extra hepatic cancers, liver cancer tumour which are too numerous or too big. Ongoing alcohol or drug use or lack of commitment to sobriety.
Not everyone with cirrhosis will need transplant and possibly even if they do it can be further down the line.
In my hubbies case he was hospitalized with decompensated cirrhosis in April 2012, did end up on t/p list for 10 months in 2014/15 but improved enough to eventually be delisted. He had a fairly decent spell of health till late last year when he suddenly went down hill fast. He was assessed and listed in January of this year and thankfully and very fortunately received his gift on 24th June (we are indepted to his donor and family and the whole of the transplant team for their care and continued dedication).
It's a lengthy process and your relative needs to play their own role in keeping as well as possible. It's an exhausting journey for both the patient and any carers - who are all important in supporting the patient.
Thank you so much for taking the time to offer such a comprehensive answer. So lovely to hear your hubby is the right side of the t/p and I send all my very best wishes for a continued recovery and healthy future.
I wonder if I may pick your brain a little further? What is decompensated cirrhosis? I've read about it, but I'm not sure if where they are (or were during their hospital stay) qualifies as that? Are there definitive 'things' that would confirm it? So for example does decompensated mean remaining in hospital, and therefore the discharge means 'carry on for the moment until they see a specialist'?
Main symptoms of decompensated may include bleeding from varices in the oesophagus, ascites and/or oedema (fluid build up in tummy and legs), hepatic encephalopathy (H.E.). Jaundice, weight/muscle loss and a multitude of other symptoms may be present too. Deranged bloods are likely to be present.
When I had cirrhosis they checked my bloods for a year then told me i needed transplant they give me that time to see if bloods would go back too normal, then they sent paper work off straight away for assessment
I was referred to Addenbrookes, transplant hospital by gastro consultant. I never felt ill and I was told the assessment was to check if I needed a transplant ( he knew I did) had the assessment and was told I definitely needed a transplant. I was convinced they were going to say there was nothing wrong with me and cried for a whole day. Some people are told they don't need one yet but will be monitored by them. The initial appointment will just be a chat, discuss symptoms, look at latest scans, bloods etc. Once you are referred to transplant hospital you will be in the best hands.If you or your relative use Facebook please feel free to join our friendly and knowledgeable group called' liver transplant support uk ' thousands of people that have been in your situation.
Hi Hilary, thank you for your reply. Yes, in constrast my relative was very poorly. A battery of tests, lengthy stay in hospital and is presenting with 5 of the 7 'symptoms' of liver failure. I think the gastroenterologist is more than likely spot on. I think the patient is in denial or hoping the specialist hospital visit might confirm the gastro guy was wrong. In order to support them the best I can, I want to be be able to be fairly confident that I am being equally realistic as well as positive for them....
Hi Indigo 99, it would seem that your relative is going down the usual path. If it’s the first appointment with a liver specialist, it will be a general appointment and getting to know you. They may be told at this point that they are either suitable or unsuitable for a transplant. So it’s important that someone goes with them and is in with them for the appointment, it can be upsetting if told you’re not suitable.
Yes a gastrointestinal surgeon would tell your relative that they need a transplant, it’s quite normal and they would pass on details to the specialist .
I went through this in July in Birmingham and was found unsuitable so it’s all fresh in my mind. Hope this helps.
Hi Keith, thank you for your response. Yes I said to Hilary, in contrast to her my relative was very poorly. A battery of tests, lengthy stay in hospital and is presenting with 5 of the 7 'symptoms' of liver failure. I think the gastroenterologist is more than likely spot on. I think the patient is in denial or hoping the specialist hospital visit might confirm the gastro guy was wrong? In order to support them the best I can, I want to be able to be fairly confident that I am being equally realistic as well as positive for them....
I'm assuming maybe incorrectly the gastro guy would have been one of a panel of other medical professionals who would have agreed the diagnosis before he provided it?
I understand there is a steroid course of treatment - but that has been ruled out as an option, and to me that suggests, t/p is the next viable move for them?
Yes there would have been a multi disciplinary meeting of Drs. Before any decision is made.
The patient may well be in denial, but it’s how they feel and need to be supported with this. Any decision by the specialist is final usually and can be distressing especially if 1. Patient is hoping the Gastrointestinal Specialist was wrong OR 2. The chance of a transplant is taken away.
It is a difficult gruelling operation and someone who is not suitable may not survive the operation!
So all I can say really is to accept what the Specialist says, which is difficult, I did, but the not knowing when things will deteriorate and how much time you have left is the worst part.
Support is the only way to go, as things can get a lot worse, as anyone who has been admitted to a gastroenterology ward will tell you. To be honest acceptance is the way to go, if there’s no transplant there’s little else can be done. But I’m working hard to keep myself well as I’m in end stage disease treatment. Sorry to be negative but it’s the honest truth.
Thank you Keith. I hope to encourage acceptance so that there's not another "fallout" if the news is really bad i.e. they aren't fit for transplant.... I'm sorry your news was not more favorable. Thank you for your time, and I wish you all the best for the future.
Hi when I was diagnosed, transplant was talked about. But because I'd been diagnosed very late, medication had not been tried at that point, so it was decided to see how that went first.
Two years later my consultant told me, that if I stay as well as I currently am, I may never need a transplant. There's no guarantees though, and that might change.
For me though, I feel that my consultant wanted to have that conversation as early as possible, but some could possibly view it as having jumped the gun.
It sounds like your relative needs to accept that as a possibility, as it is for most of us I guess, but see how things go. They might go better than imagined. I do hope so.
Hi Chez, yes, as Keith said, acceptance is key, to enable everyone else around them to support them. It's striking the balance between realism and positivity - it's hard to watch the family at the minute.... I hope you continue to be well. Best wishes.
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