Quick question re swelling and spirolactone

[Harriet-sarah]

hi All

Hope you all had a good Xmas and new year I see from some posts Santa gave some people a liver so hope your recovering well. Quick question really, I’ve tried coming off Spirolactone a number of times as instructed by my consultant, but every time I do my tummy and ankles start blowing up, so he puts me back on it again. However the spirolactone is effecting my kidneys with AKI. My consultant said if I can’t get rid of the swelling he would have to look at a transplant as he can’t keep draining me due to previous infections. I don’t really want to go through a transplant just because I swell up, but understand I can’t mess my kidneys up also. Does anyone one know any other way? Remember I can’t have TAP or drains

Thanks in advance x

[AyrshireK]

Have they mentioned a potential TIPSS procedure (Transjugular intrahepatic portosystemic shunt) ? - this is a means of reducing portal hypertension and ascites without going direct to transplant. It can be very effective but not entirely without some drawbacks (it can increase issues with Hepatic Encephalopathy).

Diuretic resistant ascites is one condition that increases a patients priority when on the list. If your doctor intimates that transplant IS necessary then don't wait too long because changing your mind later on may not be an option and your ship may have sailed.

Best wishes, Katie

[Harriet-sarah in reply to AyrshireK]

Yeah we talked about TIPSS but it isn’t an option and I had HE before too. I’m seeing them again on the 7th Feb as have to have another scan cause I got a black area on liver too and he doesn’t know what that is yet he wants to see if the black area has increased, until he knows what that is no decision is made

[Confused2024 in reply to Harriet-sarah]

Hi Harriet-sarah ! I hope all goes well for you !!

A question for you...you mentioned you had HE - did you have ascites with it and do you know how they actually made the diagnosis? I have a liver stiffness of 9.0 kPa and ascites with a nodular contour and my GP is diagnosing me with cirrhosis. This is two years after having severe fatty liver which I did not know about unfortunately...I am just trying to figure out if maybe I have Alochol hepatitis versus Cirrhosis as I thought you had to be pretty bad with a much higher liver stiffness to have ascites due to cirrhosis? Thanks!!!

[Harriet-sarah in reply to Confused2024]

I had every symptom I was extremely confused with HE and hallucinations it was terrible I had hep aswell with acities also huge heamatomas coving my body and vomiting up tun of blood. It was horrible, they gave me 2 weeks to live but I fought through it, still doctors to this day say I’m a medical mystery.!

[wp69]

I was told to keep to a very high protein diet , not much ankle swelling now , working for me anyway , hope this helps.

[Millie09]

Hi Harriet, Sorry to hear your issues with fluid retention and kidney problems.

When I was first diagnosed with end stage cirrhosis, I was given spironolactone, I was on 200mg per day along with 3 drains I had over 6 weeks .

Like you , I was told I had to reduce spironolactone so they gave me frusomide lower dosage, also I had no salt diet which is really important and one I have carried through even up to this day ,infact I hate the taste of salt now ,can really taste it when one of my friends cooks a meal for us .

I take it your already on a very low salt diet ? . High protein included

If you cannot have TIPPS procedure and you've tried many times to come of diuretics along with no salt etc.. then as much as your not so keen to have A liver transplant, I'd maybe reconsider the offer given to you Harriet.

In my recollection if you keep filling up with fluid then that tells me your liver cannot function sufficiently hun as you know so see what happens in February at next appt .

Good luck and I hope things do improve for you

Linda xx

[Kristian]

Unfortunately Harriet, it looks like it is that time now. If the diuretics are not really working or you can no longer tolerate them, as suggested by the impacts on your kidneys, then assessment for transplant is the next step.

I know it can be a worrying thing. But, transplant is a good thing. In the vast majority of cases it does lead to a really great improvement. Yes, it's a big operation and yes it's not without risks and complications. But, you will never be better looked after.

[bcsurfer]

Hi

There are alternatives he could subscribe but I think those may be more frequently used where there are side effects from Spironolactone. I am not sure if those alternatives may be kinder on your kidneys, but it might be worth asking.

If alternatives are used to offset side effects logic would suggest they could be worth trying and at least give your body a break from Spironolactone. If you try an alternative, test results on that new medication would use your previous "control" results from Spiro as a measure of which was more successful.

Maybe you could suggest that as a course of action before a leap into a commitment to transplant.

I am presuming of course that you are not drinking at all.

Best of luck.