How Poorly is he....

[JSR2014]

So, My father is suffering from ELD, HE and is on Rafaxamin and all the usual meds.

He has suffered from Cirrhosis for quite some time, but clearly its suddenly detiorated and resulted in SBP, acute kidney injury/failure and all the usual suspects, suspected HRS, the whole lot.

He is now having bi-weekly drains of 12-18l of ascitic fluid, the Rifaxamin seems to be keeping the HE somewhat at bay.

However, the docs are saying that he will go for referral and possible transplant (he is 68).

HE has had varices banded many times, was in resus a few years ago when the varices in his throat burst.

The ascites are refractive, so do not respond to diuretics. The kidneys however are improving slightly as shown in the Creatinine readings.

This detioration has occured since Christmas and has stabilised, I have details of his full blood tests, the Creatinine is improving (down from 225 to 176 and now 155), the serum sodium is staying constant at around 138/135 bilirubin down from 38 to 31....but he is clearly unwell in himself and the fluid is still building up, he is losing weight at a rate of knots (about a stone every 14 days).

Its classed as decompensated Cirrhosis.

The docs will not give any form of life expectancy, with or without transplant...any ideas?

[Hidden]

So sorry 💚

I wish I knew.

X x x

[grumps]

Push for a 2nd, & 3rd opinion ,, we did and got the head consultant to see our son who then got involved and referred him to specialist at QE Hospital Birmingham has now got final assessments in a couple of weeks & could be on transplant list, if final assessments go ok of course, by the end of March.

Keep pushing ....our thoughts are with you

Grumps

[AyrshireK]

Since you have your dads full blood test results you should be able to do the following calculation which will give you his UKELD/United Kingdom Model for End-Stage Liver Disease score.

The UKELD score is calculated from the patient's INR, serum creatinine, serum bilirubin and serum sodium, according to the formula:[3]

(5.395 x ln INR) + (1.485 x ln creatinine) + (3.13 x In bilirubin) - (81.565 x ln Na) + 435

This will give his score.

Higher UKELD scores equate to higher one-year mortality risk. A UKELD score of 49 indicates a 9% one-year risk of mortality, and is the minimum score required to be added to the liver transplant waiting list in the U.K. A UKELD score of 60 indicates a 50% chance of one-year survival.

Your Dad evidently has very serious end stage liver disease symptoms and I hate to say it without transplant he won't have very long. Older age is not an outright bar to liver transplant - it all comes down to his other health too - his heart and lungs primarily.

Since a referral for transplant has been mentioned, don't wait, push for it NOW.

All the best.

Katie xx

[RodeoJoe]

When you say referral do you mean transplant assessment? If this is the case then he is a very sick man, and the reality is that without transplant he won't get any better, his quality of life will get worse and he may not have too much time left.

You need to peruse that avenue of transplant.

Unfortunately I know from experience that you might have to push before you get referred. I would ask them directly why he hasn't been referred for a transplant assessment, if they've already suggested this might be necessary.

[JSR2014]

Hi,

Yes referral for transplant, his file has been sent to them, we are awaiting decision now but it can take upto 6-8 weeks just for that decision apparently.

His UKELD seems to bounce between 60 and 52 and varies week by week, he is seeing some improvement in his bloods.

So many websites are contradictory re prognosis. Some say that with refractory ascites that it's 80% mortality within 12 months without transplant, others like the post above show 9% when using UKELD.

He's looking at TIPS rather than the drains, any experience or thoughts?