Very slim chance of transplant - British Liver Trust

British Liver Trust

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Very slim chance of transplant

Dudewheresmyliver1 profile image
Dudewheresmyliver1

I received a letter this week from my consultant that basically says that though I'm still on the transplant list there is hardly any chance of me receiving one.

As this seems to be the case myself & my lovely partner have decided to renew our wedding vows before I get to sick or my time runs out. It's also a chance to get my amazing family together for the last time.

18 Replies
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Dude, this must be devastating news for both and your partner. It goes without saying that the criteria for a transplant follows a strict assessment procedure. I take it this decision hasn't been taken lightly. Are you able to speak about this, and tell of your liver condition and the reasons behind the non-transplant decision?

This is so very sad, and very brave of you. Your are a really courageous person to want to both share and talk about this.

Best Wishes

Richard

Hi

Does the consultant say why?

I don't understand as long as you are on the list your turn will come. If your condition deteriorates you would then go on to the urgent list. So why are they saying you have little chance. Have you querried this?

Was this from the transplant unit or are you seeing a consultant at another hospital?

Very sorry to hear this. Did your consultant give you a good reason for this? It must have been hard to hear this news by letter. Glad you have got a good family and support system. Don’t give up on everything just yet. Hardly a chance does not mean no chance at all, so there still maybe a slim hope. You’re very brave x

Sorry to hear the news. 🙁. But as others have said, does your consultant give a valid reason,

I was under the impression once on.the list you remain there unless you improve? .. i would ask questions if it were me. How lovely though to renew your wedding vows.

Hello Dudewheresmyliver1 .

I also am a bit perplexed as to why you have been told this. Unless your condition has worsened to the point that you would not survive the transplant? Or some other medical issue has cropped up that would be detrimental.

At any rate, I am very sorry this is happening to you. I hope you get clarification.

Cas xx 🌸

I'm waiting for my second transplant what makes it so difficult is the veins that have rerouted themselves to my stomach. Plus they made a bit of a mess putting in the 1st one that has compromised the op for a second liver.

I have been living like no transplant is coming as they need a nearly new liver,then 2 transplant team and somebody to operate a blood machine so I don't bleed out.They have all agreed to do the op but time is getting shorter.

I'm concentrating on my family at the moment. The letter put me in deep shock for a few days but I just need to stay well & loved. I'll be ok

Love Dude

NotGoingDownWithouyAFight

Ok Dude. I kind of understand where you are coming from a bit, if your insides are a mess it makes an operation more difficult but not impossible. The operation itself though does become more of risk. I’m on the waiting list for a forth liver (I’m not greedy) so my insides are a bit of a mess too and the operation itself will be a higher risk than normal. But please don’t loose sight of the fact that they can do so much these days. I also need a nearly new liver, but my consultant told me it would be a long wait but if they didn’t think it would be possible they wouldn’t have assessed me in first place. Try and keep yourself as well as possible and please don’t give up yet. Take care

Adelou profile image
Adelou in reply to Smyally

If you don't mind can I ask why you are waiting on a 4th liver? My hubby is coming up to 4 weeks post transplant & doing really well, however I'm interested to know more..especially as I met someone the other week who is 22 years post transplant

Smyally profile image
Smyally in reply to Adelou

My liver first failed back in 1995 due to an allergic reaction to antibiotics. I had my first transplant in February that year year but it never really worked due to rejection. I had a second transplant in the middle of June but an artery became blocked and I had a third transplant as an emergency a few days later. The third liver has lasted me nearly 23 years now but it has cirrhosis due to medications taken over the years. Because I suffer from portal hypertension and HE I’m now back on the list. Because of the amount of surgery I’ve had done I need a very good liver and the transplant will be higher risk. But compared to the alternative the risk is worth taking x

Adelou profile image
Adelou in reply to Smyally

Wow you have really been through it. Im still trying to get my head round the fact that it's been nearly 4 weeks post transplant for my hubby, still feels dreamlike

Can't imagine what you are going through

Hope it works out

Millie09 profile image
Millie09 in reply to Adelou

Hope hubby is doing well .

Adelou profile image
Adelou in reply to Millie09

At the moment yes, he won't sit still

I guess he is making up for all the times he couldn't

I keep telling him to not over do it, but Scottish & stubborn

Millie09 profile image
Millie09 in reply to Adelou

Awww .. bless. Good sign though. Great to hear he's doing well

Smyally profile image
Smyally in reply to Adelou

Thank you. I don’t feel too bad in myself at the moment. Everyone has their ups and downs and everyone’s situation is important to them. Your husband is only a few weeks post transplant so of course you are still getting your head round things. I try and enjoy and embrace the “up” times as much as life allows me to, do then coping with the down times becomes more easy ( in theory anyway). I hope your husbands recovery goes well and you can look forward to a positive future x

Millie09 profile image
Millie09 in reply to Smyally

Wow , what a journey! But so inspiring to other's who are waiting for transplant too.

I re ally hope things work out for you.x

I understand now. I think you are at peace with whatever happens. I'm happy for you. xx 🌹

Stay positive dude, you just never know. 😊

Sad news!

But I needed a beating heart liver and my portal vein was shot but I got one and am doing well, so keep hoping. If it happened for me I pray you will be as lucky.

David

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