Diagnose Liver Cirrhosis: I've told... - British Liver Trust

British Liver Trust

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Diagnose Liver Cirrhosis

Jimmy777 profile image
43 Replies

I've told before that I doubted my diagnose concerning my liver. You can read my previous posts if u would like to.

I remember two and a half years ago I had highly elevated values in my blood, a swolen, painfull liver and I could feel my spleen. Further I told the specialist I had blood coming from my behind once in a while. That had to be varices so the Dr. told me. I was told it was Cirrhosis with portal hypertension, I got beta-blockers and diuretica and sent home.

Of course there where more examinations planned but it was march 2020 and Corona suddenly was there. No more examinations, no more doctors, no more nothing. Very frustrating. In the meantime I was feeling quite well. Depressed of the news but physically well.

Now fastforward to saturday 30th of july. I was constipated like crazy (I thought because of my Liver as well). I already had this going on for a few months. This saturday it was surreal. I was fighting for hours and hours and finally was done. Very relieved of course. Half an hour later an enormous amount of blood came out of my behind. A few hours later, the next morning, it was even more, and again, and again. The blood was not bright red anymore. Called ambulance and of to the ER I was.

I thought this would be the beginning of the end. My Varices finally bursted open of course. My liver ache was insane. My girlfriend was holding my hand when the ER doctor came in with the blood results. I had a lack of potassium in my blood (which can also cause constipation).

I asked how my liver was. He told me my liver was fine. I asked him 'fine taking the circumstances in consideration?' . He said, no: your liver is fine! I saw he was elevated 2.5 years ago, he said. I have Cirrhoses, I said. No, he said, you dont. I said: but two years ago I was diagnosed! Yeah, I read something like that, but that is just not possible, its weird. But no way, you dont have Cirrhosis. I said: portal hypertension? No way he replied. I got angry and asked for my bloodwork. EVERYTHING was in range: asat, alat, ggt, alk. fosfor, albumine, INR, billurrib. platelet count, Everything. Of course I couldnt believe this. I thought they mixed up my results with somebody elses or whatever.

Very long story short: a day later I got a colonoscopy. No varices found! I just strained too much during that saturday evening. I had a good long talk with the Liver doctor and told him everything. He apologized and said: we are gonna rule everything out. Stay another night and tomorrow you will get a CT scan. We can see if anything is wrong there. I was 100% convinced that shit would show up. But... It didnt. Even the size of liver was fine. Pain in my right side was 100% between my ears. Im a week later now. I still dont believe what happened. Happy, but also very angry. Doctor also admitted they have made a huge mistake. It must have happened because of the craziness during the pandemic. Last thing: im slowly going of the meds.

Isnt this insane?! I realize, that a lot of you guys would give an arm for a story like mine. That is also the reason why I doubted to put it up here. But its just too important, too insane. And the key of course is: communication f***** everything up. Im the example where it went horribly wrong. However happy I am. For 2.5 years I was afraid, frightened of every body sensation. Therapy, talking to my girl. etc.

I'm not saying dont trust your doctors or dont trust medical science. I am saying be very critical about what youve been told and keep asking questions and keep pushing. I didnt do that and see where it got me for over 2.5 years.

I wish everybody the best and I will be staying and coming on this platform. It is, and has been a great help for me.

I hope I dont offend people with this story. If I do, I apologize in advance...

Take care and hope to talk to you soon...

grtz, Jimmy!

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43 Replies

I am so proud for you! I know you must feel relieved! Take Care!

Jimmy777 profile image
Jimmy777 in reply to

Thank you very much. I appreciate that a lot!

Rshc profile image
Rshc

What a fantastic story. Go and live a long and wonderful life!

Jimmy777 profile image
Jimmy777 in reply to Rshc

Thx Rshc, that means a lot to me!

Tia2021 profile image
Tia2021

Wow what fabulous news for you but appalling that they got it so wrong. I wish you the very best , xx

Jimmy777 profile image
Jimmy777

Thats great Tia, thanks very much. I wish u nothing but the best. xx

Maui-Mike profile image
Maui-Mike

Great news Jimmy! Supper happy for you. I was able to turn my stage 4.5 (very real) cirrhosis to a stage 2 (maybe lower by now) been a while since I got a scan. So many folks put Doctors on a pedestal, like they can do no wrong. They call it “practicing medicine” for a reason. I just did some healthy living and good supplements and I will keep doing it. Folks need to take control of their own health. Best to you and all!

Jimmy777 profile image
Jimmy777 in reply to Maui-Mike

Good for you Mike, keep going. You did so well. Thx for your kind words!

deanw41 profile image
deanw41 in reply to Maui-Mike

I agree!! I question..everything!!

Belleben profile image
Belleben in reply to Maui-Mike

Hi what supplements do you take ?

Maui-Mike profile image
Maui-Mike in reply to Belleben

First and foremost you have to eat clean. Our food should be biggest source of vitamins. Leafy green food, veggies and don’t kill them just cook slightly, no pasta and no bread, and no processed food. Look up foods that reduce inflammation. Eat healthy!

Best of luck!

Aloha!

Belleben profile image
Belleben in reply to Maui-Mike

Did your Dr say that you can take them. Aloha 😊

Maui-Mike profile image
Maui-Mike in reply to Belleben

When it comes to herbs/vitamins that is outside my doctors knowledge base. If I wanted to know about pharmaceuticals/chemical drugs, I would ask her. But I do my own research on anything she doesn’t know about. I did get a list of herbs not to take from her and the ones I take are not on that list. My doctor is a big part of my recovery plan but not my only resource. Many doctors have killed their patients by accident. I encourage all to double check what their doctors are prescribing, again be your own advocate and take charge of your own health.

Maui-Mike profile image
Maui-Mike in reply to Belleben

So you can’t trust British “Trust” they edited my response because my treatment didn’t line up with “conventional” treatment. Really sad that some folks live in such a small bubble. unfortunately you won’t be able to use this forum to share successful treatments unless they align with treatments British Trust advocates. Which again is a narrow minded approach.Good luck all!

Belleben profile image
Belleben in reply to Maui-Mike

What did they edit

BritishLiverTrust1 profile image
BritishLiverTrust1Partner in reply to Maui-Mike

Dear Maui-Mike

Your post was edited as it went against our Community Guidelines.

We ask all members to please read the pinned posts at the top right of the first page on the forum to see the rules and guidelines about making posts on this forum.

In this case, it was about posting information on alternative therapies and solicitations, more specifically:

“Please note that the British Liver Trust does not endorse or recommend any specific products, services, therapies, or activities mentioned by any third party (individual or company).

The British Liver Trust does not recommend the use of any homoeopathic or herbal remedies for those with any liver problems as these may damage the liver and lead to severe illness.”

For more information on this subject please visit the following page on our website:

britishlivertrust.org.uk/in...

Best wishes

British Liver Trust

jbrking profile image
jbrking

Wow what a story. I think if we hadn’t have had the pandemic they probably would have rechecked you a few times before medicating you because levels can go up and down for so many reasons. I have lost some faith in doctors myself. I have nafld, diagnosed 16 years ago now, coupled with dreadful diarrhoea. They kept telling me IBS for 10 years until I was so bad I was being sick as well whilst sat on the toilet for hours. Finally listened to and lots of tests and I have bile acid malabsorption, and needed special medication for it. Due to malabsorption all my vitamin levels were so low for so long that it’s caused other issues. Now I push harder when I know things aren’t right. Good luck to you Jimmy.

Jimmy777 profile image
Jimmy777 in reply to jbrking

I am sorry to hear that u to go through this. It must have been a nightmare. It´s good youre pushing when it doesnt feel right. thx a lot!

Doechloe profile image
Doechloe

wow you have been though the mill , just get on and live your life now, mine is very similar to your symptoms , been diagnosed with cirrhosis with portal hypotension, been given beta blockers, and something with acid in, but all my bloods and scans show that i have it but ive lost weight and exercising more than i have ever done, they told me my liver is functioning ok and is compensed, but you must be so relived, and i am so pleased for you,

Jimmy777 profile image
Jimmy777 in reply to Doechloe

thx a lot. I am glad to hear you feel pretty good.

Benwillfred profile image
Benwillfred

A brilliant outcome after years of stress !! Bet you'll now look after your liver !! No one seems to realise its importance until it starts or appears to start acting up. Good luck.

Jimmy777 profile image
Jimmy777 in reply to Benwillfred

Thanks so much Ben! Yes it has been quite a rollercoaster...

oap74 profile image
oap74

Thanks Jimmy it’s always nice to read good news. Believe me in this day and age we need it. All the best.

Belleben profile image
Belleben

Fantastic news Jimmy, now go and enjoy x

kensimmons profile image
kensimmons

Great Job Jimmy! Way to go!

JackyAM profile image
JackyAM

That's awesome new Jimmy777 ! But so bad that you were left thinking you had this really bad liver.

Funny how our minds work though isn't it - you were told your liver was bad so your mind gave you all the symptoms and pains.

Jimmy777 profile image
Jimmy777 in reply to JackyAM

Yeah Jacky, I really had tremendous pain in the Liver that day. And 2 days later I didnt feel a thing. Mind is truly exceptional. Thx for your post!

JackyAM profile image
JackyAM

It is amazing, we use only a fraction of what it is capable of.

Awagn445 profile image
Awagn445

Congrats. My 2 fibroscans showed cirrhosis. Biopsy showed healthy non fatty liver. Very disappointed in medical community. Especially imaging results. Just because results say one thing dig deep for real answers.

Jimmy777 profile image
Jimmy777 in reply to Awagn445

sorry to hear that, I wish the best for u of course!

LorraineLouise profile image
LorraineLouise

So happy for your wonderful news. Enjoy!!!

Jimmy777 profile image
Jimmy777 in reply to LorraineLouise

thx very much!

Louby1954 profile image
Louby1954

That’s great new. You must be ecstatic well done xx

Margolia profile image
Margolia

Great news!!! This is awesome. Thank you for sharing. 👍

Researchfreak profile image
Researchfreak

Pleased you are ok and they were wrong but that is not the point. My problem was dr said I had nothing wrong with liver refuse an other pair of eyes on situation. I was adamant to fight him and unfortunately I proved him wrong and he is unable to look me in the eye. But I’ve had a 1.1/2 years wasted and my situation has worsened. So I fully understand your anger frustration and worry. I have had to do research into everything myself, I’m lucky I’m quite capable of doing in-depth research but that doesn’t make it right.. good luck for the future

Foxdud profile image
Foxdud

Great news Jimmy , all the best for the future 👍🏻

chelley69 profile image
chelley69

Good for you! I’m assuming you’re in the UK, because in the US a mistake like this would likely be met with a malpractice lawsuit for undue mental anguish, and rightfully so. Two years is a long time to worry about something you never had to begin with.

Jimmy777 profile image
Jimmy777 in reply to chelley69

I live in the Netherlands. Its possible but its not really in our culture to start lawsuits.

chelley69 profile image
chelley69 in reply to Jimmy777

I understand. I just can’t imagine the unnecessary mental anguish and anxiety you must’ve endured for two years.

Louby1954 profile image
Louby1954

Fantastic news 🥳 go forward alcohol free & enjoy your life to the full. Congratula...tions 🥳

Louby1954 profile image
Louby1954

Congratulations 🥳 go forward & enjoy your life alcohol free 🥳💖

Dolly1001 profile image
Dolly1001

Hi Jimmy, your story along with one other gives me hope. Am still teetotal, but not whole time. Have finally reached point where I could say goodbye to all alcohol! None has passed my lips since May, In fact, I’ve reached a point where the very smell is stomach churning - long May it stay that way.

I can now face the world! Safe in the knowledge that I can get better (I was stage 3). Reading yours and others story gives me hope! Thank you so much!

The Liver Specialist is ringing in 3 days (telephone consultation) I’m going to be asking more questions now and getting better answers! If two that’s your good self, another person who is part of this community (sorry I don’t splash names without permission and even then it’s reluctant). But if 2 can, I certainly can - get better!

Thank you again for sharing.

Dolly

Jimmy777 profile image
Jimmy777 in reply to Dolly1001

Hey Dolly. You are right, Positivity is very important. I hope the best for u.

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