Fluid retention

I have ecld and severe HE I've been refused a transplant. My gp cut my spironolactone down from 100mg to 50mg, I started noticing a full feeling and put on 5 pounds in a week, I got out the shower today and noticed my left ankle is swelling, I've never had this before, any advice please

[Positive001]

Hi. So are you still drinking ? You will not be even considered for transplant unless you have been abstinent for at least 6 months. You need to have a severely damaged liver and be very ill but well enough to withstand the major surgery. If you have what you call severe HE which has been recognised by your GP, you should be taking lactulose and refaxamin. You need to let your doc know you are retaining fluid again, your dose may need adjusting, keep your legs raised while sitting.

[Hidden in reply to Positive001]

I haven't had a drink for over two years

[Positive001 in reply to Hidden]

As l say there are many other factors which are taken into consideration before being listed for a transplant. It really doesn't appear that you will qualify. Be thankful your liver is in good enough condition to function adequately for you to continue to live a full life. Eat healthily, exercise daily and it will continue to do so. Any change in symptoms re HE and water retention see your GP. Are you taking lactulose and refaxamin?

[Hidden in reply to Positive001]

My liver is end stage decopensated,it is practically useless, so why do you think I wouldn't qualify for a transplant

[AyrshireK in reply to Hidden]

Have you been formally assessed for transplant? Did you get a reason as to why transplant isn't indicated for yourself - there are certain criteria they follow based on how poorly you are, how fit you are to actually go through the transplant, if there are obvious contraindiactions (like ongoing drug, alcohol use) or indeed other health conditions that make it unlikely the patient will survive longer term - things like too many or too large cancers in the liver that might seed if the liver is removed, then be unable to be controlled due to immune suppression. Cancers elsewhere in the body and sadly mental health concerns, none compliance with medical regime and sometime lack of support network.

All of these have to be formally assessed by a multi-disciplinary team in order for them to list / not list.

My hubby was listed in 2014 but delisted 10 months later when he no longer actually met the criteria for listing.

Katie

[Aotea2012]

I’d go back to your GP to talk about your spironolactone dose. It’s tricky to get the dosage right. They like to keep the dose as low as possible because of potential kidney affects but may have overdone it just a bit. Keep to a low salt diet and book an appointment. Get them to review all your medication whilst you are there, I’m assuming you take lactulose and probably some other little gems. It’s important to be on optimum doses for you, so any little niggles are worth raising as minor adjustments can make a huge difference to quality of life.

[Ozzie1961 in reply to Aotea2012]

I've had my spirolactonne put back up to 100mgs a day,so far it's only been a couple of days,so I just have to wait and see ,thanks for the reply 👍👍

[Ranjhaw]

😅