Has anyone suffered from excess fluid ... - British Liver Trust

British Liver Trust

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Has anyone suffered from excess fluid when being diagnosed with Liver failure?

Teanna profile image
12 Replies

Hi all, me again (sorry).

When being diagnosed with Liver failure (due to opiates) I was sent an update with all my health issues, but under the Liver failure it has Liver ascites . , sorry for the mispelling. I was hospitalised for a mth & lost almost 2stone in fluids... plus I was put on an high level of steroids. My problem now is that my fluid retention has come back with vengeance, I have a dull ache around the side to the front, it also feels like have a tyre squashing around the upper torso. Would this be due to the Liver again or something else. All my appointments are now done over the phone.

Thank you all, I hope you are keeping safe.

Regards Teanna

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Teanna
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AyrshireK profile image
AyrshireK

If you have ascites again (fluid build up) then you need to be seen as this may require draining or a re-jigging of your diuretics (if you are on them). This is a common symptom of decompensated cirrhosis and needs to be addressed urgently as the fluid can become infected and can impact on your appetite and breathing.

If you have a telephone number for your consultant ring them TODAY.

Are you following a low salt diet? You should have been advised of this on your discharge from hospital.

You sound unsure of what symptoms you should be looking out for with cirrhosis so perhaps should look at the BLT guide on the condition.britishlivertrust.org.uk/in...

Contact your doctor, ascites needs to be dealt with a.s.a.p.

Katie

Teanna profile image
Teanna in reply to AyrshireK

Hi, I’m on 1 tab twice daily. My GP always checks my blood and they all came back fine. (That was 4 weeks ago give or take). My swelling started a couple of weeks ago & I had the pain management team that visit me, I told them & they were going to tell my GP, but I’ve heard nothing, but she is very busy & with this virus u have to make an appointment, wait outside in the rain in my wheelchair, so I’d rather wait until she calls me.... if not, I’ll have to get onto my pain management team and see what is happening.

They did not tell me nothing about diet etc, but I’m due to see them in 2 weeks time, but that is only for a scan & a specialised blood test (apparently they only do this test in 2 hospitals in the UK), but my consultant has booked to see him in 3 mths, I don’t know if it’s something to do with the blood test?

Thanks for replying

Teanna

AyrshireK profile image
AyrshireK in reply to Teanna

If this is ascites, it can't wait, you need to be seen in case you are at a point it needs draining. If diuretics arn't working they may need to change them or up your dose. This is urgent and not something that can wait.

No good waiting for medical teams i.e. you pain folks to contact your GP - you need to give them a ring and get seen. If you have a liver consultant you really need to be seen by them a.s.a.p.

Katie

Good afternoon Teanna,

As AyrshireK suggests, I would strongly suggest you seek medical assessment of your fluid retention, preferably a physical face to face assessment to address this adequately.

I hope you get help soon,

Keep us posted,

Trust9

Teanna profile image
Teanna in reply to

I will do, thank you all very much.

Regards Teanna

Millie09 profile image
Millie09

Hi teanna ,

How are you feeling now? As Katie said you need to see someone at hospital now ! I was very similar to you 12 years ago .

Your taking two tablets per day for water retention? How much strength wise are they . I was on 800mg of spiranalactone amd 400 mg of ferusomide yet nothing was working but other than having any drains done .

Please let us know how you are.

Kind regards Linda

Teanna profile image
Teanna

Hi, I was only in a small dozes of fushiemide, 1 daily until this episode, but they doubled the dosage also spirolactine, & put me on steroids ( A very high dosage ) over a pace of 6mths & weening off. They was going to do a Liver biopsy ASAP but due to the virus all was cancelled... But now I have the scan etc in 2 weeks time.

I hope yr doing well, & I’ll keep you up to date,

Regards

Teanna.

Roy1955 profile image
Roy1955

Sounds urgent so go to A&E.

Emmabskin profile image
Emmabskin

I have liver cirrhosis. I still drink but make sure I eat healthily with a low fat diet. I had ascites when first diagnosed. I went through a heavy duty treatment as I had Hep C from using drugs intravenously. Which was the cause of my liver problems. All through the treatment I struggled with ascites even though I had completely stopped drinking. After 6 months I was pronounced completely clear of the Hep C but I had developed border line cirrhosis and small gall stones. But I was over the moon.

A couple of months back I started getting pains in my side. My niece recognised the symptoms as gall stones getting trapped. Then a couple of weeks back the pain was too much so we called an ambulance and they whipped me away in to hospital. Pumped me full of antibiotics and fluids. After a few days I went home. the surgeon said that there was nothing he could do until I got my drug problem out. Pity I was so groggy.

Anyway the letter they eventually sent to my doctor(they supposed to send me a copy as well) but I had to ask the doctor surgery for a copy. It said the main cause of my problem was dehydration which I'm sure is true. Went on to say that I had Hep C, ascites in my upper right hypochondrium. Really don't understand why one gets dehydration and ascites. Why do these life discombobulating letters arrive on a Saturday when there's no one about to look into it. I'm now a nervous wreck. As for the ascites , see your doctor and he should hopefully give you water tablets and try to keep your legs elevated when you sit down. Also as far as I know after 32 years, the only way you can get liver damage from opiates is by sharing a needle with someone who has it.

Not sure if this helps at all but it helped my nerves settle a bit, : )

Emma

Teanna profile image
Teanna in reply to Emmabskin

Hi Emmabskin.

I had ascites in my Liver (they found out by a blood test that my liver function was quadruple the normal levels). My GP sent me for a scan (in a in health clinic) which just showed a fatty liver & was told not to worry. No one contacted me (like yourself) until I was admitted to the hospital. Luckily all my consultants agreed that it was all the opiates that they put me on but at no time did they all get together to discuss my meds. (None of my drugs was used by needles), opiates comes in tablets or liquid form unless your in hospital & they give you morphine by injection. So you can get water retention with any types of opiates.

But, Again like yourself I knew nothing until I got a letter saying that I’ve got Liver failure & ascites (which I did not know about).

But because it was their fault, I was put on double water tablets, steroids, but they had to ween me off the drugs, but because was for pain, they left me with nothing, I was climbing the walls.

People have this thing about alcohol & drugs, but they don’t understand why what how & when? They are too quick to judge.

I’m still having trouble, but with this pandemic, (I was going to appointments every week until this pandemic), now they are done by phone. (So ask every time your hospital doctors call or you see them) ASK them for a copy.....

Good luck, and if I can help out in anyway, I’ll try.... keep safe...

Teanna

Emmabskin profile image
Emmabskin

Had to go into hospital again and ended in staying in over. Christmas as they completely messed up my meds. I died basically. They insist on giving me Librium and lots of them and I realised, too late, that they were giving me one carbosistene instead of six. That's two three times a day. So I tried to nip out for a quick fag. Next thing I know I'm being bought round. They accused me of bringing illicit drugs in with me. So that was their mistakes covered up quite neatly. And I still have my dicky gall bladder.

Teanna profile image
Teanna in reply to Emmabskin

Hi, sorry just seen your message. I hope yr feeling better..... Funny you saying that they turned it on you.... saying your fault.....

I had to back in due to swelling etc, the professor (liver specialist), blamed it on me, my liver has become very fatty....HOLD ON. I said, I was told it was due to the amount of opiates that all my doctors etc prescribed me. But they was adamant it was not down to them.. well I had in black & white...

so I know how you feel....

I hope your on the right meds now.

Good luck and stay safe

Teanna

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