What a great video. It’s about how HE ... - British Liver Trust

British Liver Trust

38,081 members18,674 posts

What a great video. It’s about how HE affects those around you

Brett11 profile image
26 Replies

facebook.com/tamiejp/videos...

It’s an eye opener that’s for sure. It made me shed a bit of a tear.

Cheers,

Brett

P.S. I can be serious sometimes lol

Written by
Brett11 profile image
Brett11
To view profiles and participate in discussions please or .
26 Replies
Millie09 profile image
Millie09

Thanks Brett, will have a look .

Gemma68 profile image
Gemma68

Is there a link to this anywhere else? It's not working.

Brett11 profile image
Brett11 in reply toGemma68

See if this one works?

m.imdb.com/videoplayer/vi30...

Brett11 profile image
Brett11 in reply toBrett11

imdb.com/videoplayer/vi3075...

Brett11 profile image
Brett11 in reply toBrett11

It won’t let me paste more than one line? Did you get it?

Gemma68 profile image
Gemma68 in reply toBrett11

Thank you! 😁

Livewell69 profile image
Livewell69 in reply toBrett11

I have just watched this video and I have sobbed and sobbed. This is my life with my husband and my children are too being affected. It's so painful to watch xx

Gemma68 profile image
Gemma68

Wow - I'm lost for words at the moment...

I managed to get on the latest link,I don't think there was a happy ending!.

Thanks for sharing,a real eye opener. X

Brett,

Thank you so much for sharing this....I have forwarded it on to all of our team.

Warm wishes

Trust1

Brett11 profile image
Brett11

It must be shown to people who won’t take their rifixamin and lactulose.

Cheers,

Brett

Thistle09 profile image
Thistle09

Brett, you are sooo right. I probably won't be able to take rifaximin because just the "co-pay" portion in the U.S. is about $2000/month even though I do have insurance that should cover all medications. My GE says she may be able to get it for me for FREE; that was 3 months ago and I haven't seen it yet, so I'm not going to hold my breath. I do take spironolactone and furosemide, as well as Senna (which is a very effective herbal laxative well known to most doctors), every... single... day... I took lactulose for a while, until it started producing explosive diarrhea, constant flatulence and lots of gas. My doctor(s) agreed that the HE scare was mostly over by then. I can regulate the Senna so that I still have at least two or three more or less normal BMs/day. The only test for ammonia in my own blood resulted in a "43," the normal range being 11-51. This was AFTER I was released from the hospital. I could actually recognize and remember strange thought patterns and forgetfulness, although I always managed to pull it together, in much the same way I could eventually remember events from "the night before," when I woke up to a whopper of a hangover.

HOLY CHIHUAHUA!!! HE is looking more and more like a totally separate disease. It may be caused by complications from cirrhosis, but the implication is that, at least for some people, it's a permanent condition and will not improve, even if your liver does! Frankly, that scares the...everything...out of me. When "Lynnette" almost slipped into a coma I stopped breathing for a few seconds.

Brett11 profile image
Brett11

My doctors say not to take just any laxative as they don’t remove the toxins. They just make you poo more. Lactulose gets rid of the toxins especially ammonia. You can get rifixamin/ Xifaxan for free direct from the manufacturer or very cheap from Mexico apparently. There are a few docket things to get for free from the suppliers. Only if you live in the USA.

Your liver will heal over time but it doesn’t do the job that it used to. This is because it uses “old” stem cells to rebuild itself. A REAL liver needs your new stem cells to make it work like the old one used to. Unfortunately, one second after you are born, your body only has old stem cells. With ESLD or stage 4 cirrhosis with 20% of your liver working or less, your liver will never get better. You will forever have 20% of your liver working until you are sick/well enough to go on the transplant list. That’s what auntie google told me and several liver doctors.

Maybe the liver trust can expand on what I said or totally rubbish it?Im only retelling information given to me and I’m not a doctor so don’t take what I said for gospel.

Ta,

Brett

in reply toBrett11

Hi Brett11

As a charity, we cannot comment on medications or treatments.

We would suggest that people discuss their stage of cirrhosis and management of symptoms with their own liver specialists who are best placed to safely advise them.

Best wishes

British Liver Trust

Brett11 profile image
Brett11 in reply to

Sorry Liver Trust,

I meant for you to comment on my stem cell bit.

Brett11 profile image
Brett11

Phew, what an essay and I said nothing funny?? There must be something wrong!! I’m off to A&E now to find out why I wasn’t funny! I wonder if they will keep me in? Or section me lol.

Smyally profile image
Smyally

Thanks for posting Brett. Really brings things home

Thistle09 profile image
Thistle09

hindawi.com/journals/ijh/20...

Brett, you may have the two medications confused. I believe the only function of lactulose is to rid your body of as much poop as possible, on a daily basis. It's rifaximin that is an antibiotic. It's often used for treating Montezuma's Revenge or travelers' diarrhea, and it only works to clear up E.coli (in particular) in the intestines. [from the article cited above]: "Rifaximin works differently from other antibiotics because it passes through your stomach and into your intestines without being absorbed into your blood stream." I take that to mean that it does not have to be processed by the liver (??), although I am not a medical doctor. I will do more googling, and will ask one of my two primary doctors the next time I see one of them. I do know that many of the side effects of cirrhosis cannot be treated with the usual panoply of drugs, as virtually all of those drugs must pass through the liver. That makes it even more important to follow one's doctor's orders. I still reserve my googling rights and my rights to have procedure and medications explained to me. I'm not the easiest patient to deal with, which should be obvious by now, hahaha.

I do wish it were available in the USA. But, no I am not going to Mexico to buy it, nor do I intend to order it on the internet. Canada, perhaps. Canadians are such nice people. Unfortunate that "Americans" are less reliably nice.

Unlike you, I enjoy talking at length when the subject interests me. I'm actually very funny/amusing in person, or so my friends tell me. This is partially explained by the fact that I am a retired lawyer, and I'm bored to death by lawyers with no sense of humor -- which often seems to be most of them. I'm not disagreeing with you, just digging deeper for more answers, putting more pieces into the puzzle.

Toodle pip! ;-)

Brett11 profile image
Brett11

Thanks for that but lactulose is the only thing to get rid of the nastys that pooing alone won’t get rid of.

There are a couple of cirrhosis groups based in the US on Facebook. Many people there get their Rifixamin from co payment or from the supplier. They seem to have no problem with it? Doctors still don’t understand how rifixamin helps with HE but lactulose/rifixamin combined really keeps it at bay. I’ve had no further episodes since taking it.

Ta,

Brett

Brett11 profile image
Brett11

Also, I think I would put my trust in myself and the many millions worldwide who benefit from the combination of the two lol.

It’s always good to read up on things though. I do myself.

Brett11 profile image
Brett11

Lactulose is useful in treating hyperammonemia (high blood ammonia), which can lead to hepatic encephalopathy. Lactulose helps trap the ammonia (NH3) in the colon and bind to it.[15] It does this by using gut flora to acidify the colon, transforming the freely diffusible ammonia into ammonium (NH+

4) which can no longer diffuse back into the blood.[16]

Brett11 profile image
Brett11

In the United States, rifaximin has orphan drug status for the treatment of hepatic encephalopathy.[9] Although high-quality evidence is still lacking, rifaximin appears to be as effective as or more effective than other available treatments for hepatic encephalopathy (such as lactulose), is better tolerated, and may work faster.[10] Rifaximin is taken by mouth. It has minimal side effects, prevents reoccurring encephalopathy, and is associated with high patient satisfaction. Patients are more compliant and satisfied to take this medication than any other due to minimal side effects, prolonged remission, and overall cost.[11] The drawbacks to rifaximin are increased cost and lack of robust clinical trials for HE without combination lactulose therapy.

Brett11 profile image
Brett11

Auntie google never lies lol

Brett11 profile image
Brett11

xifaxan.com/

$0.00 co pay in the US

Gemma68 profile image
Gemma68

I still can't get over the cost of healthcare in the US, talk about extortion!

Brett11 profile image
Brett11

I know. And you need a solicitor or lawyer for everything over there? It’s an alien way of living to me??

You get kicked out of hospital dying over there because you don’t have the right insurance? Strange!!

Not what you're looking for?

You may also like...

What do you feel like when you have a HE episode?

Mine is like, Yes, I know the wall is supposed to be the place where you do wee wee. Doesn’t...
Brett11 profile image

a question about family drinking around people with ARLD

my partner (transplant listed) has ARLD and has not had a drink since diagnosis 22.12.21 (almost a...
Rshc profile image

How was it detected, those of you with alchol induced cirrhosis

In was a heavy alcholic (30 units a day) for 4 years, sober now 15months have been suffering from...
whiskertron profile image

What can you tell me about Ascites?

Hubby is complaining that his tummy is getting bigger? The dr old him on Thursday that the ct scan...
mumof3girls profile image