prognosis to short to consider transplant

[Harriet-sarah]

I’ve just received a letter from my consultant saying my prognosis may be to short to consider a transplant. I don’t know how to feel, I have an appointment next week to see consultant to talk through it further, but my blood has improved somewhat but scared it’s not going to be enough, my alcohol worker is coming in to say I am completely committed to never drink again. I don’t know how I’m going to get through this week I really don’t.

[Shep666]

Hi

I can see that it would be scary - and it is ok to feel that way in the short term. As usual the not knowing makes it even worse.

It is good news you have an appointment with your consultant - use that meeting to ask questions as well as listening. Good news you have someone to vouch over the alcohol, but more importantly not drinking will help make you "feel" better, that you have control over something in your medical bag of issues. While there is no actual time frame on abstention preventing transplant listing - they like to see 6 months as a commitment and what effect that has on the liver. Obviously if the liver can't support that time frame they will have to talk through the options with you.

Those early few months of abstention also will give them a firmer indication on how much the liver will stabalize also helping in the longer term prognosis.

You will get through this week - please stay strong and as positive as possible, it will help 🙂

[Harriet-sarah in reply to Shep666]

I’ve just woke up with blood over my pillow, and spat out a load of blood is this the beginning of the end? That was really helpful advise thank you. I’ve called 999 about the blood this morning and they said I don’t qualify for an ambulance I don’t know weather to go in or not, I haven’t coughed up any more blood for an hour now so maybe I won’t go cause they will just say there is nothing they can do.

[Aotea2012 in reply to Harriet-sarah]

I would go to the hospital. Spitting up blood is potentially a medical emergency and whilst you may not need an ambulance to get there, as you are able to get there by other means and the bleeding has currently stopped, it’s a sign that not everything is right. You do need medical attention just to check you over.

[redpoint72 in reply to Harriet-sarah]

Harriet,please go to hospital, if you haven't already. We can be much more prone to bleeding

Medics need to see you love.

Best wishes. Chris

[Readlots]

Hi Harriet, If you’ve got someone to drive you, get to A&E. If not call 999 and tell them you think you’re having a variceal bleed. It is an emergency, but it can be treated. Good luck and a big hug x

[PeterP54]

So sorry to hear of your problems. As others have said, a variceal bleed can be life threatening but is treatable. I had / have PSC and am 15 years post TX and pretty well. At one time (pre TX) I had blood coming out of both ends, but I am still here. Go to A&E. Best of luck.

[Harriet-sarah]

went to hospital the A & E dr sent be home after a blood test, and said it could have been anything, I did not get to see gastro, so I’m home now shattered, glad the blood has stopped. Scary but ok thank you for all your advice xxx

[Aotea2012]

Always better to get checked over. With varices it’s safer to have a wasted journey. Hope you get a good nights sleep. Take care.

[lonmallin50]

l was scared when they offered me for a transplant never thought it would come to this but went though with it the assessment was not that bad they treat you really good got on the list last Wednesday cant wait to have it done now mine was through drink as well not touch a drop for 14 months now you got nothing to worry about your in safe hands with the team looking after you good luck with everything

LON