Anxious about everything.

[Dudewheresmyliver1]

I haven't posted anything for a while but this week has thrown up a lot of feelings I've been pushing down.

I have been offered/put forward to trial the new liver cleaning machine (OrganOx metra).

They take a liver that would normally be discarded,clean it until it can be transplanted into a person who would have trouble getting one.

This is great news for me or anybody like me but I am so scared in case it all goes wrong. I know there's always that chance but this time the fear has hit me like a bag of bricks.

[Paulwil]

I saw a documentary about this at the Queen Elizabeth Hospital in Birmingham. The process was remarkable.

They were able to measure how well the Liver was working in the laboratory, so they were confident it was a good liver to transplant.

I am sure it would be great opportunity for you

[Kate50]

Hi, I can’t imagine how you are feeling as I know how scary it was 1st time around but to do it a 2nd time with the new procedures must be hard to get your head around, I would say getting as much information as you can will increase your confidence and trust that your medical team will be doing their best for you, I get your fear I still feel it, Take care of yourself 🌼🌼

[Hidden]

Hi wheresit

I think you’re a very lucky person. Since it’s a trial I would imagine tremendous care will be taken to ensure everything goes smoothly. I sort of understand your concern but I know what I would do.

Good luck whatever you decide.

Miles

🇧🇧

[mncold]

Hi,

I guess the best thing would be to discuss it with your doctors for their opinion and learn all the possible risks and benefits and then discuss with family and/or friends.

Best of luck to you,

Mary

[carole-shaw]

Hi, I have also been asked if I would like to be put forward for this trial as I could have long wait for a transplant. I have polycystic liver and blood group o neg. I am waiting for information to be posted out to me at the moment. My consultant recommended I should go for it as it will be like a Rolls Royce liver (his words) I would try anything as my quality of life is getting so bad it’s practically none existent.

Carole

[Dudewheresmyliver1]

I haven't been able to

[Dudewheresmyliver1]

Sorry about that.I haven't been able to go today and sign as I've got a virus of some description. I am so pleased to hear there is somebody on here who is having the same thing. I'm really concerned about the veins on my tummy they have to cut threw to get to everything else. It will be lovely not to have to worry about fluid gain & throwing up. Not to mention montages in hospital.

Keep in touch Carole. It would be nice to see how you get on &your thoughts on it.

Antonia

[carole-shaw]

Will do I dont have any information about it yet as it was only discussed last week at clinic appointment then short phone call 3 days later from team doing the trial. They said I am a complicated case due to the size of my liver @ 12 - 15kg in weight it is covered in cysts and they think I would benefit from this trial. Will let you know outcome when I get all the paperwork.

Carole

[Dudewheresmyliver1]

Thanks. I've had the paper work and emailed yes.Its still a shocker