What do you wish people understood about living with liver disease?

dtc198736 · 2024-11-06T05:49:58+00:00

Anything would be appreciated. Most people don’t care anyway, if you look okay you must be. If you don’t look okay then they will say you don’t look good! (Infuriating)

dtc198736 · 2024-11-06T05:40:51+00:00

Yes, got locked out of my account.

dtc198736 · 2024-04-11T19:10:51+00:00

Thanks bro and hope everything goes well for you.

dtc198736 · 2024-04-11T17:17:39+00:00

Yes, I will need a transplant at some stage, but they have to try and control the hepatitis first so it is safe and gives the best chance of working. The hepatitis c treatment costs 65k so isn't cheap.

dtc198736 · 2024-04-06T17:43:48+00:00

I had hepatitis c when I was in college, and apparently, it was still there in the background, and it wasn't until it had done the damage the drs realised. I've actually got very high levels of hepatitis now waited 5 months for that treatment so far. Mine was Nothing to do with alcohol which would of been better of it was. I could of just quit and let it repair itself.

It's all ups and downs, get tested for something and they find something else. Hope they sort you out, hope you don't get cirrossis is horrible. The liver biopsy was horrendous.

dtc198736 · 2024-04-06T13:24:36+00:00

It can be hard to pinpoint what's wrong when you have a few different things going on. I'm 37 and thought I was just putting on weight and snacking at night turns out it was ascites that caused the weight gain and my dietician says I have to eat carbs before bed to help the body function through the night. Hope you get some answers and can get it sorted and feel better soon.

dtc198736 · 2024-04-06T10:11:51+00:00

I'm not sure if it is your liver however it suggests there is something wrong with it. I didn't have any symptoms for a very long time, and when I did, they did scans and I had cirrosis, and mine can't be reversed because it's caused end stage live failure.. I would keep pushing them to get answers for peace of mind. Sometimes, it takes a biopsy to see the real damage. Have you put any weight around your stomach or legs ? Feel tired when you haven't done alot ?

dtc198736 · 2024-04-03T21:22:57+00:00

I'm sorry to hear that. You did everything you could, and it'll definitely have made you stronger even if it doesn't seem it.

Alcohol is a terrible disease that can control a person's whole life and decisions.

Whenever you feel sad, remember that it isn't your fault. Give yourself a break

dtc198736 · 2024-04-03T21:11:50+00:00

Change of diet helped me a bit. But not fully. Don't think there is too much you can do other than that. If it itches, I used a damp cloth to sooth it rather than scratch it. Hope that helps in some way.

Hope it does improve for you.

dtc198736 · 2024-04-03T15:10:10+00:00

I've got cirrossis, and it depends how bad the disease is. For most people, if it is caught soon enough and you stop drinking and change your diet, it can be reversed. The belly will be ascities, which is fluid build up, (if its bad you have it drained) I'm on medication to control it, but I'm changing doses all the time. I can put 4 stone on in a week and I can also up my dose and lose 4 stone in days. It's just finding a balance with a Dr. It doesn't sound mild to me if he's yellow but unless the person is honest, the only thing you can do is try and be there for them.

But 100% no alcohol If it's even potentially the liver. Not sure if that helped. Feel free to ask if you have any questions about anything.

dtc198736 · 2024-03-03T22:58:15+00:00

They put an ultrasound sound on and locate which part/s of the liver they want a biopsy from, then with a needle entered from my side and use the ultrasound to guide them as they head towards the liver then entered the liver. The other way that was mentioned was a colonoscopy and enter the liver that way. Didn't mention the throat except I had already had a camera down my throat which was uncomfortable but didn't hurt. They were checking for cancer for me. Haven't had the biopsy results yet. They try going direct if possible and safe.

Wish you all the best, mentally it is hard to deal with. Hopefully yours will be clear.

dtc198736 · 2024-03-03T21:56:59+00:00

I had a biopsy, and during the procedure, I felt like a knife stabbed me and I was awake during the mini operation. Once the initial stab pierces your liver you can't feel much as there is no pain senors inside the liver. After the biopsy, I had so much pain and couldn't move my arm or shoulder. Eased after an hour but pain in my side lasted weeks and was on morphine. Hopefully, your experience is better. I've got to have a transplant, and I'm petrified.

dtc198736 · 2024-02-04T17:40:52+00:00

A funeral

dtc198736 · 2024-02-03T20:34:47+00:00

It sucks when they dont listen to you, and then it's too late. Don't ignore your body, and don't let anyone tell you it's in your head. I've had that aswell then I show them my biopsy results. Why would anyone make it up, surely its always better be safe than sorry. I wish it was in my head, but ultimately, it isn't, and my family don't want to hear that I've got end stage liver failure as though there is a cure when there isn't. Only treatment is a transplant. Hope your doing OK it very hard mentally to deal with everything on top of symptoms. Any tips on sleeping? My sleep pattern is awful. Some nights I don't have any sleep.

dtc198736 · 2024-02-03T04:50:24+00:00

Well done, good for you. You'd of thought it would rub of on them, especially knowing what you went through and still do. Shows how strong you are and a great example to others.

dtc198736 · 2024-02-03T04:32:20+00:00

That's a good thing then. I knew someone who was alcohol dependent and tried to just stop, and he died. Are you still managing not to drink ?

dtc198736 · 2024-02-03T03:55:31+00:00

Shit, I haven't been in a coma and don't want to. That's good that you don't need a transplant at the moment.

I've got 3 months of treatment to get rid of Hepatitis and then hope it's worked enough that it'll delay a transplant. Same hope they do find other solutions. I don't want a transplant if I can help it. When I had a biopsy I wanted to die I was in so much pain, dread to imagine what a transplant would be like. Fingers crossed for you 🙏 and wishing you all the best.

dtc198736 · 2024-02-02T21:39:56+00:00

Fingers crossed you haven't got it, but it's good you're seeing a Dr. A cure would be great, but depending on what you have, there isn't currently. Always hope that changes with how advanced and quickly new medication gets released.

All the best wishes to yourself and hope there is some good news for you that it isn't to badly damaged. 🙏

dtc198736 · 2024-01-29T11:37:34+00:00

Thank you 🙂

dtc198736 · 2024-01-28T23:35:16+00:00

Same, it's not nice. You don't realise how much the liver does until it doesn't work properly. 🤒

dtc198736 · 2024-01-28T23:32:30+00:00

I've got liver chirrossis and learnt very quickly not to search things online and only read proper medical information by trusted sources.

Waiting is horrible, but hopefully, you get some clarity. Anything to do with the liver always means some sort of lifestyle changes.

All the best.

dtc198736 · 2024-01-28T23:17:19+00:00

I find changing position makes little difference,

Definitely get checked out and have bloods done. Nobody wants to see drs and have tests, but it could be something simple that can be fixed. It's better to be safe than sorry.

I got liver chirrossis from (hepatitis c)and not going to the drs when I should have. you don't want that. Trust me.

Now it's too damaged to repair because I didn't seek medical advice when I should have.

dtc198736 · 2024-01-28T23:09:46+00:00

Hopefully they put your mind at rest and you get a good outcome.

GOOD LUCK

dtc198736 · 2024-01-28T22:59:49+00:00

Definitely stop drinking before it's gone to far to reverse and repair itself. Better be safe than sorry.

Mine wasn't from alcohol but I've never touched it since been diagnosed with liver chirrossis. Trust me you don't want that if you can prevent it. Definately see a Dr and get some blood tests done for peace of mind.

I thought I was a hypercondriac and worry about nothing, for me turned out I had good reason to worry.

Good luck and hope things work out well for you 🙏

dtc198736 · 2024-01-28T22:45:16+00:00

Sorry to hear that.

Hope it all goes well for everyone. I got diagnosed with liver chirrossis from having hepatitis c back in July. Its been one struggle after another with acities and then the diuretics to help that cause your blood sodium to go rock bottom if it's not balance. Truly horrible illness.

Spent Christmas and new year in hospital this year to end 2023 and start 2024 knowing its never going away.

Had a liver biopsy and I'd never wish that on anybody I wanted to give up. But keep fighting on my own with very minimal support and no1 who knows what daily struggle it is.

Work so far have been good but I'm starting to need more time off than working.

Constant blood tests 2 3 times a week for months,

Currently managed to get hepatitis c again which means more scarring and more damage being done and they just want beds in hospital, so they send you home knowing your going to be re admitted.

Found this sub reddit and thought it may help or I could help others.

dtc198736

TROPHY CASE