Liver transplant: Hi all, I’m looking... - British Liver Trust

British Liver Trust
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Liver transplant

Hi all, I’m looking for information about a liver transplant. Any and all information would be good to hear. How old was you when you had a transplant? What is life expectancy after a liver transplant? I am 31 years old, my consultant informed me it took years off your life. Thanks in advance.

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Hi Neph,

I am sure the forum members will discuss their experience of liver transplant with you.

We do have a publication that may also be of use, here is the link;

britishlivertrust.org.uk/wp...

We do hope that is helpful,

Best wishes

Trust1

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Thank you, that’s very helpful.

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Hello Neph, I'm not sure whereabouts in the world you are but without knowing a little more about your condition, I really don't know why your consultant would be telling you this. I had my liver transplant on the 1st Oct 2016 at the ripe old age of 63.

As for the life expectancy that is hard to predict or quantify as I've known some people who are still alive today after having had their transplant over 20-years ago. Modern transplant techniques, organ suitability, organ screening, and the advances in modern anti-rejection drugs, have all contributed to a persons longevity. Also a persons lifestyle also plays a part.

I hope this helps, but a little more information about your condition would be helpful.

Good Luck

Richard

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Hi richard, thanks for the reply. I live in South Staffordshire, England. I am under the Queen Elizabeth Hospital in Birmingham (one of the leading liver units in England). I have a rare liver condition called Budd Chiari. I also have a rare slow growing blood cancer called polycynthaemia Vera. The blood cancer is the cause of the Budd Chiari. In 2012 I was admitted to icu with liver failure, kindness failure and heart failure. I had a stent placed in my liver called tipps procedure to by pass the blood clot in my liver. This has recently blocked despite my being on warfarin and having regular mri and ultrasounds. A second tipps procedure is an option but it can prevent me from having a liver transplant when I need one, due to the metal work of the stent getting in the way. They are almost positive that the second stent will re clot. I am a mother of two young children, and I am petrified that what ever decision I make it will shorten my life with them. My husband, family and friends are very supportive. But ultimately it is my choice. I don’t want to choose.

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Thank you so much for explaining your condition. It has helped to understand. I too was at the QE and came under Dr Tahir Shah. His speciality is liver cancer. A very nice man. I can totally understand how your own situation isn't so straight forward.

I think in your case, I would go down the transplant route, if at the end of the day the liver transplant panel decided that a transplant isn't really an option then at least you'll know what your options are. For the panel, you'll have about five different professionals all looking at your long term prognosis, and quality of life. They'll look at all aspects of your case, and highlight the risks involved. The only danger of going down this road, is the possibility of building your hopes up, only to have them dashed. If it was decided by this team that a transplant wasn't a viable option, then you still have the second stent put in as another option. I do know about the TIPPS procedure, and have included an American video on my website, that covers the procedure: taep.co.uk/medical%20conseq...

I think you know just how precarious your situation is. Sadly, this has to be your decision. But you strike me as being a fighter Neph, so just hang on in there and talk things through with your family.

Your in good hands at the QE, but I only go there now every six months for a follow up. I'm not far from you, Stoke-on-Trent.

Please kindly keep me posted.

Best wishes

Richardxx

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Thank you for your response richard. I have asked to be referred to Dr Patch in London. I feel if I have the tipps procedure it at least needs to be done by someone who has performed the procedure before. Dr Patch is a specialist with my condition to, so I feel a second opinion is needed from him. Thank you again for taking the time to read and respond.

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Your more than welcome Neph. I really do hope that Dr Patch can sort you out. My heart goes out to you.

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Thank you

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Hi Neph,

I am also under Dr Patch at the Royal Free and he did my Tipps 12 years ago . He is amazing and a specialist in Budd Chiari and I would highly recommend you get a referral to see him if possible . Did you ask your current specialist about taking aspirin alongside Warfarin ?

Wishing you well and please keep us posted xx

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Hi that’s great. I will be seeing Dr Patch hopefully through the nhs, but will pay privately if it gets me a quicker appointment. I went to see professor Clare Harrison in May this year. She recommended I start aspirin as well as warfarin, although this hasn’t happened yet. Thank you for your response.

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Hi

I was 32 when I had my transplant and was told I should have a normal life expectancy. I'm hoping the new liver will last until my 60s but whatever time I get I'm eternally grateful for as without the transplant I'd probably be dead by now at 34.

Good luck

Klodian

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Hi that’s great to hear. I’m glad your doing so well after your transplant.

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Hi

Not sure what your consultant is up to because if you need a transplant then it will add years to your life otherwise you wouldn’t be listed surely?? Am 6 weeks post TX and although am still a long way from being over op my long term future looks fantastic thanks to my wonderful donor and medical team am 54 and was told if I follow the advice am given and go to my clinic appts for monitoring I can live as long as the next person

Huw

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Hi I am not on the transplant list, but it is an option for me to choose. I know I would have to pass the assessment first though. My condition is rare and complicated. (I have commented on Richards post about it, it gives me a headache trying to understand the terminology of it). I am glad you are doing well after your transplant. Take care.

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Hi

Your consultant has a strange bedside manner! All the time there are advances in care and medication. People are alive who were transplanted 20 yrs ago or more and since then care had got so much better. Not to mention the incredible quality of life after the operation.

I am 53 and had my tx just over a yr ago.

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That’s great to hear thanks.

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Hubby is 8 weeks post transplant tomorrow, he is 42 & doing remarkably well apart from a slightly elevated glucose level

But all is good. I've finally got my head around it of what was a whirlwind 4 days on the list....we were just lucky that it was a perfect match after not being so for the original recipient & lived the closest to be at the hospital in under an hour.

At his first check up after being discharged we met someone who was 22yrs post transplant & still going strong

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That’s great to hear. Thank you for your response. Hope your husband continues to do well.

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Hi, To be accepted onto the transplant list, it would be assumed that a transplant would extend your life expectancy not “take years off your life”. I agree with what has been said that the bedside manner could probably do with a bit of work if that is the attitude. I contracted cancer in 2014 and although I underwent a resection almost immediately, it returned a year later. I was put on the list because without a transplant my life expectancy was going to be severely limited. I eventually got my call in November 16 but unfortunately suffered a massive haemorrhage in theatre which caused the procedure to be stopped whilst they battled to keep me alive. I spent 12 days in an uninduced coma and my wife was told it was unlikely I would survive due to the amount of blood they had to transfuse me with (25 pints). I came out of the coma (obviously) and was informed I am no longer eligible for a new liver and my life expectancy was probably 6 months or less. Well nearly 20 months later I am still here, looking and feeling like a million dollars. I have an embolisation every 3 months or so to control any tumours that may appear. Eventually this will get me but every single day is a gift from God. I get to spend quality time with my long suffering wife, my kids and grandkids. Would I go through it again knowing what I know now, yes in a heartbeat. My medical team have been brilliant, always telling me it straight. Working with me every step of the way. So even without having the transplant my life has been improved and who knows how long this ride will last, all I can be certain of is I won’t go down without a fight.

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Wow that’s fantastic. I feel my team are not telling me everything and they shy away from questions. My condition is so rare so I understand they haven’t got the answers to the questions I am asking. Thank you for taking the time to respond to my questions.

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I had my transplant at 40. This was three years ago. For over two years I've been able to carry on with my life as normal.

This is what my doctor's had said as well.

It's up to you but I would recommend going on the list. At least then your in 'line' awaiting the call. The only thing about the list I would say is that it varies from person to person. Some wait only a few weeks/months others much longer.

I had to wait nearly 18 months which was long

All the best

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Thank you for your response. I’m glad you are doing well after your transplant

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My son had his transplant in Feb this year aged 16. He was born with a rare condition called Alagille syndrome and then developed a hepatocellular carcinoma. He had his at the QE too x

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Hi I hope your son is recovering well after his transplant. Dr Tripathi is my liver consultant at the QE. Has the transplant cured your sons condition? Thank you for your response.

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It has cured his liver issues but Alagille syndrome causes other issues with heart, kidneys, bones so he can still have other health problems. Also it’s genetic so he has 50/50 chance of passing it onto children. He doesn’t have a consultant at the QE as he is usually seen at the children’s hospital but it was a good hospital and he will be transitioned there once he is 19/20 years old.

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I am sorry to here that. But hopefully with good monitoring he will be well.

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Hi my wife has had a liver transplant she was 50 when it was done, It was the best thing that has happened to her she is getting back to her old self she had some problems with the transplant first liver did not work so she had to have a second one 5 Days later ans then had a stroke during recovery but that is now all okay she is one of the unlucky ones

I think life expectancy now is about 30 years but I have talked with post transplant people at the hospital who are still going strong after 40 years

On the up side the day after transplant my wife looked at least 10 years younger that is how good it is

If you are waiting on having one done try not to worry to much they do loads of them and are very good at them and you will feel like a new person after it is done

Good luck

Dave

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Thank you for your response. I’m glad your wife is now doing well after her transplant. That’s great to hear that people have had transplants 40 years ago.

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Hi Neph

My transplant was 13 years ago, when I was 67. It has certainly added those years to my life as I was at death’s door and had no waiting time at all. In fact I was helicoptered from where I live, a tiny village in Spain, to La Fe hospital in Valencia. I received excellent care and have continued doing so to this day. I am now 80 and am fit and well and enjoying life in sunny Spain.

I wish you well for the future and hope that all goes well for you.

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Hi that’s great to hear. I’m glad you are doing so well. Thank you for your response.

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My husband had his transplant in November 2017 at the age of 60. He would be dead by now if he hadn't had it. For him it wasn't an easy decision and initially he refused one but somehow found the courage to accept this amazing gift. Things have been a little rocky since but he is alive and enjoying life again. This has added years to his life not taken anything away. Good luck with whatever decision you make xxx

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Thank you for your response. I’m glad your husband is enjoying life again. X

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Hi love my hubby had his two month ago he’s doing really well now he’s 59 his energy level are on the way up and looks amazing 😉. He’s still got a long way to go to be as fit as he was but we have the time now yippee . Wish u lots of happiness x

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I’m glad your husband is doing well. Thank you for your response. X

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I've been referred for transplant assessment and all of these positive messages have made me less frightèned.

Thank you all, julie x

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Had my transplant 12 months ago today. I was 60. On the waiting list 12 days. Discharged from hospital (King's) 8 days later. I've been back in 4 times with infections and I'm now on antibiotics permanently. But enjoying life. The infections will eventually prove fatal but could be 15 years before that happens.

Liver cancer would probably have killed me by now.

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