Please, any advice?: Dear All, Hello. My... - British Liver Trust

British Liver Trust
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Please, any advice?

mariusforlavy
mariusforlavy

Dear All,

Hello. My name is Marius and is the first time when I am writing on this page. My lovely gf (34 y.o.) has stage 4 compensate viral cirrhosis with virus B and D, hypersplenism, esophageal varices gr. 2, fibrosis 4. She is having abdominal pain, head pain, feeling tired very often. I want to help her to get better, any additional treatment that can help, alternative medicine or supplements that can reverse the liver damage? Thank you!

28 Replies
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Hi Marius, it is terrifying when a loved one is so poorly - I am supporting my hubby who has cirrhosis due to auto immune liver disease. Is your girlfriend being treated for her Hepatitis B and is she being monitored by a consultant? Stay away from any alternative medicines and supplements as these arn't subjected to the same rigorous testing as conventional medicines and some can indeed be more harmful to the liver - everything you ingest is processed by the liver and she doesn't need to be adding more potentially damaging things.

Feeling tired often is a common symptom of such advanced liver disease, she needs to listen to her body and nap if need be. She also needs to eat to keep her body fuelled, little and often with protein and carbohydrate to make sure she gets the necessary vitamins and minerals through food.

Unfortunately there is nothing you can take that will reverse liver damage - the best you can hope for is to stop further damage from occurring and with viral hepatitis that would mean treating the virus so hopefully she is on the antiviral for Hep B.

If the pain is something new or a worsening situation she needs to contact her consultant for further tests.

Katie

Yes, in 2011 she start a treatment with interferon, but they stopped it after a couple of months because of adverse reactions. She got since then also pneumonia, and septicaemia in 2016 I guess. How much is the mortality rate for pacients in this conditions, and how long you can live with compensated cirrhosis? I am a little scared for her, she is getting nervous sometimes and I don't know how to react.

Yes, in 2011 she start a treatment with interferon, but they stopped it after a couple of months because of adverse reactions. She got since then also pneumonia, and sepsys in 2016 I guess. How much is the mortality rate for pacients in this conditions, and how long you can live with compensated cirrhosis? I am a little scared for her, she is getting nervous sometimes and I don't know how to react.

Trust5
Trust5Administrator

Hello and welcome to this forum.

I am very sorry indeed to hear that your girlfriend is so unwell. There are other treatments for Hepatitis B besides interferon . They can be very successful at keeping the virus at a very low level and this woudl help to improve the liver function.

Has your girlfriend been considered for liver transplant ?

regards

mariusforlavy
mariusforlavy in reply to Trust5

Sorry, I must rectify, she've done the interferon 8 months, and is virus D predominant. They said is too early to consider a liver transplant at that time.

Thank you for advice.

Is the virus D more dangerous than virus B?

Trust5
Trust5Administrator in reply to mariusforlavy

You can only get Hep D if you already have Hep B. There is no good treatment for Hep D.

I presume your girlfriend is getting reveiwed regularly by a liver team who will assess suitability for transplant ?

mariusforlavy
mariusforlavy in reply to Trust5

Yes, she took also an ecography, it is necessary to take an MRN scan as well?

Trust5
Trust5Administrator in reply to mariusforlavy

Anyone with cirrhosis should be having at least a 6 monthly scan - this might be an ultrasound, CT scan or MRI depending on the preference of the local team

mariusforlavy
mariusforlavy in reply to Trust5

Thank you for advice! :) God bless you all!

Hi Marius,

Sorry to hear about your girlfriend.

I also had stage 4 and last I checked (2years ago) I was at stage 2. There are many natural things and lifestyle changes you can do to help heal the liver. Doctors are funded by big pharmaceutical and will not be educated on natural remedies most of the time but I do believe that most doctors will let you be your best advocate. You should do your own research. Initially when I started adding natural supplements I would get them okayed by my doctor just to make sure they were not damaging. Even though doctors don’t know everything about natural remedies they could have some information that could be helpful. There are some natural things that can cause damage and once you find out what those are then you just avoid them. I believe I was able to reverse my cirrhosis to the degree that it is because of lifestyle changes and supplements.

I quit smoking, I quit drinking and I stopped putting chemicals in my body. I eat organic, limit my meat and dairy, take Milk Thistle, and take a few Asian herbs.

Best of luck!

Milk thistle detoxifies the liver.

Yes! Detoxification is very important, The less your liver has to work the more it will be able to heal. But just as important you must feed it things that will help it repair itself.

The Trust guidelines are that no one is permitted to advertise such products on these forums.

I am not advertising a product, I am merely informing my fellow liver patients what I took to assist the healing of my liver. There are a multitude of products and that’s why I said do your own research.

I "highlighted " your name ie press and hold and up popped a bottle of milkthistle you are promoting .... also on the blood pressure forum ... blatant advertising of a product unsuitable for your fellow liver patients.

What? 😂 I am a Facilty Engineer and nothing more, I promise. I would like to see a link to the specific product you say I am promoting.

The only thing I am trying to promote is self awareness. I am trying to promote strength from within because I know the power that we have as well it’s effectiveness. I am trying to guide folks to a strength they did not know they possess and give hope when I hear there isn’t any.

Please try not to twist my intentions just because you are not comfortable with the conversation.

Yup, click on your username and this comes up:-

uk.iherb.com/pr/Doctor-s-Be...

What exactly are you diagnosed with and where are you being treated?

That’s odd as I wouldn’t think they would allow Hyperlinks as a user name 🤔 and that’s not Milk Thistle 🤔.

It doesn’t do anything when I click on it.

It may help your cause if you change your user name ?

Belleben
Belleben in reply to Shield123

Is milk thistle safe to take and do drs recommend it. I have never been told to take it.

AyrshireK
AyrshireK in reply to Belleben

Many members of the forum have been told NOT to take milk thistle by their hepatologists as it is potentially harmful to the liver - their is no set dosage for it, not medically tested and any so called improvements based on milk thistle are anecdotal rather than scientifically proven. A lot of the milk thistle sold in the UK is done in a tincture which is alcohol based.

The British Liver Trust have a page about these so called herbal and alternative remedies.britishlivertrust.org.uk/in...

Laura009
Laura009 in reply to Belleben

I've sent you a private message but see Katie has summed it up perfectly

Shield123
Shield123 in reply to Belleben

Your doctor will not recommend it because it not pharmaceutical. A functional medicine doctor might, since they give natural supplements.

The natural stuff is not medically tested because pharmaceuticals companies are not making money off them. Doctors are taught to prescribe pills not about nutrition. You can join other platforms that talk about natural stuff. This one seems to be based on medication only.

Belleben
Belleben in reply to Shield123

I will stick with my Drs advise they are the ones that have looked after me since my lowest point (march 2019) and going by my last blood and scan tests all is good but thanks for your replies. Karen

That’s my point, nutrition is medicine! Your body has been designed to heal itself.

Don’t listen to me, do your own research and be your own advocate. Your doctor should be a tool that you use but give yourself other strength and research other ways to heal. I have a great relationship with my Hepatologist and last visit he said “whatever your doing, keep doing it”.

I don’t blindly limit my self to one doctor’s opinion or a single group of doctors. (They call it “Practicing medicine” for a reason) Doctors make plenty of fatal mistakes. I want the knowledge of all doctors! (Natural and traditional) and I base my medical decisions on my findings and research. I choose what to do and what to take. Most of the time I agree with my doctor but sometimes I don’t and that’s ok 😊

I had to take a Chemical treatment Years ago and I am glad I did. There have been some great medical breakthroughs on treating liver disease but just don’t limit yourself to those. Grow your knowledge and engage in conversation with your doctor. You deserve it!

And a lot of natural remedies have been studied by universities and they have shown positive results. But again do your own research.

Be healthy!

Laura009
Laura009 in reply to Shield123

...... and your liver illness is ? ........

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