Please help: After a long six months of... - British Liver Trust

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Please help

After a long six months of telling drs something is wrong with my liver and them only saying it’s fatty liver which is no big deal my MRI revealed an enlarged portal vein at 1.5cm or 15mm. I haven’t seen a de yet but only read that report. All it said was enlarged liver and portal vein. I’m sitting in the ER crying and terrified. I haven’t shown a dr this yet but I came due to not feeling well and worried about inflammation. Does this mean the end for me? Is my liver done and am I counting down the days and months until it stops ? I can’t think right.

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Amethyst91

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3 years ago

Hi Amethyst91,

I have read many of your posts and can completely understand how scary reading that result must be for you. I too was an alcoholic through most of my 20s with periods of abstinence when I was trying to get sober. I have now been consistently sober for 9 months which surprisingly has increased my health anxiety around having cirrhosis. I think my guilt and shame over my years of drinking make me feel like I have to have given myself cirrhosis with the way I was living and that now that I finally have a life worth living sober, it will be taken away from me. I write that just to let you know I can empathize with that deep fear and crippling anxiety that can overtake you when faced with the possibility of cirrhosis. I have been so scared I spend most of my free time reading articles and this forum until I am sick with anxiety but have put off getting an ultrasound since getting sober because everytime I think about finding out I have cirrhosis I get a panic attack, so reading your post tonight I felt like I needed to reach out and send support. I also applaud you on your motivation and determination to look after your health and get things sorted.

That being said, please try and hold on and do what you can to soothe yourself until your doctor can discuss the results with you. Prior to this, you have had so many positive scans that should give you hope! I am not a doctor or medically trained so cannot say what the end result will be, but being on this forum has shown me that even if both of our worst fears come true (and I am not saying that it will), a cirrhosis diagnosis is not the end. There are so many strong, happy, positive individuals on this forum that prove that you can have a life and future with cirrhosis. There are options and treatments for the issues caused by cirrhosis. No matter what happens, you can face this and do things to help keep your liver as healthy and functioning as well as possible, hopefully for the rest of your life. People on this forum have also gone on to have transplants and get a second chance at life. That is a possibility as well.

Also, I found this article that talks about how the mean portal vein length of healthy subjects was found to be higher than previously documented so there are healthy people without liver disease with portal veins at 15mm: pubmed.ncbi.nlm.nih.gov/272...

Amethyst91 in reply to 3 years ago

Thank you. I know I freak out a lot and I definitely have severe health anxiety. It’s so difficult to go from being fine to feeling your body go downhill but not able to get the support and help from drs that you need. I’m freaked out my the portal vein thing as my moms was so severe she was in the hospital all the time due to bleeds that couldn’t be found and it stopped. I saw how hard her last two years after symptoms and diagnosis were and how sad she was that she couldn’t do anything because she was always in the hospital and I just can’t imagine that being my life now as well. I feel so young and like I have so much life to live and see still as I’ve been too poor in the passed to really get out and live and do all the things I wanted to do and now my health might not let me and I have the constant fear of dying in my sleep or just randomly out of no where. I went to the Er tonight and they found possible enlarged right heart and my tight kidney is slightly full of fluid which I just had that’s tests done about a month ago and everything was fine so now something is going downhill fast with me. I’m so freaked out even the hospital said they would have kept me if covid wasn’t filling up all the beds right now and they told me to follow up with my drs. I’m just like I try to buy they are so backed up I can’t get ahold of them. Thank you for your support, this is all just a lot to handle. For me it’s better to know than not to know and the more you know the more you can try to control your condition. I would try to at least get the basic work ups to make sure everything is going ok. I wish you the best with everything 🖤

TBSW3 years ago

I hope you have now been reassured by A&E. I fully understand how liver disease can mess with your head. I assumed every symptom I had was proof that I wasn't going to make it. I too had portal hypertension, along with cirrhosis and and oesophageal varices, however saying that, I only required a liver transplant when I developed Hepatic encephalopathy. I was also told that liver failure doesn't present with pain very often, and it's only tests that can determine the stage you are at. Take care

Amethyst91 in reply to TBSW3 years ago

Thank you. They sadly didn’t say much except talk to my dr as the hospital was too full to keep me for more testing. I’m just depressed if this is really portal hypertension as that means there is no going back and only things will get worse. Getting a transplant is a miracle most ppl don’t get so if I get bad I’m not expecting that kind of luck and to most likely just deteriorate. It looks as though I’m already in the process as the ultrasound picked up right kidney enlargement and until now I had no kidney problems as well as and ECG picked up right atrial enlargement which again until now I had no heart problems. It’s not looking like I’m going to get my life back and I’ll be struggling to keep myself going now.

Healthnut223 years ago

I really don’t know much about this and this is certainly not medical advice of any sort, but just read your post and did a quick google search of “normal size of portal vein”, and 15mm was within the normal range for the 2 top hits...granted it is the high end of normal, but still said normal. And as another poster pointed out, there also seems to be some controversy on what the normal range is. One link said up to 16mm. I’m sure you have done lots of your own research and discussed this with doctors during your journey, but just wanted to throw that out there in hopes that it may ease your mind a bit until you can get to the bottom of what is going on. I know how scary it is to have health issues and I also know that waiting for answers is one of the hardest parts. Personally, I always jump to the most serious conclusions and get myself worked up to which does nothing but harm my body more due to stress. I truly believe that stress can cause just as many, if not more problems than an unhealthy lifestyle can. I know it’s easier said than done, but try and think positive and don’t jump to the worst just yet. This one piece on a test certainly doesn’t diagnose you with anything on its own. Hang in there!

Amethyst913 years ago

Thank you. Yes I have read that and it does kind of ease me but my Doppler test a month ago showed main portal velocity at 17.6 which is pretty as 16 and lower is a sign of cirrhosis. Also my ultrasound from May showed the portal vein was 1.2 cm and now it’s at 1.5 (15mm) so it definitely got bigger for some reason. I feel like my liver is in the process of developing cirrhosis as we are testing so nothing is major red flag as it’s slowly developing or fast my developing as my symptoms are only getting worse with time. I’m still praying for that hope it’s not true but at this point with that finding I’m preparing for the worst. I just wish I had more time before things like this started happening. In some ways I feel like I just started getting to live and have fun and now it’s dangling on the edge of no longer being a possible.

Healthnut22 in reply to Amethyst913 years ago

Was this your first MRI? I would imagine numbers would vary if you are comparing ultrasound numbers to MRI numbers. They are separate tests that each have their own strengths, weaknesses, sensitivities, etc. Do you have a follow up with your doctor to discuss these tests? Try not to get too worked up about the what if’s until you can speak to a professional about your results. Nothing is black and white in the medical field. There are always multiple possibilities, explanations and severities of things. It’s hard not to worry constantly but that is really doing you nothing but harm right now. Stress can raise cortisol levels that also can have a negative affect on your liver (among other things). Try and take comfort in the fact that you had many other promising tests in the past. And if in fact things are as you suspect - that you are just now developing cirrhosis, you are going through the diagnosis process now and they will most certainly be able to catch it and treat it while it is still early. Many people can live normal, full lives even with cirrhosis. But that is still a lot of assuming at this point. It may be far less serious. Keep us updated on what answers you are able to get.

Amethyst913 years ago

Since they keep telling me liver doesn’t cause pain I feel like PH could be the reason for my URQ pain and chest pain. Sadly the drs don’t seem too concerned one tried to cancel my Wednesday appointment until I told them my MRI report and they said they will get back to me. I feel like they just would rather I die or end up in the hospital which won’t take me due to covid overflow.

Amethyst913 years ago

Truly thank you for your words. I know I stress so much and I know it’s probably because I watched my mom go through this and she was in the hospital every week until she passed. The right atrial enlargement on the ekg also freaks me out as I’ve had a few this year that were completely normal and now that’s showing up. I’m trying my best but it’s hard. It’s hard hanging out with my friends or trying to work through all these pains and feelings and trying to hold it all in

Healthnut22 in reply to Amethyst913 years ago

It’s very hard not to stress and think the worst in these situations. Especially if you saw a loved one very sick. I have health anxiety that I’m positive is mostly due to my mother being sick for 13 years and then passing (non liver related). It is very scary. In your case, it’s also worth considering the fact that tests can vary from hospital to hospital and so can the interpretation of the results. And the more testing you have, the more likely they are to find “incidental” things that may or may not mean anything or be related to your liver. Our brains have a sneaky way of convincing us all our issues must be tied together and caused by the most serious outcome though. You have a lot going for you with your age and recent lifestyle changes. Try not to jump too far ahead and just do your best to enjoy life. Whatever the outcome may be, it is probably not as bad as what you have envisioned in your mind.

Amethyst913 years ago

I hope. I do feel I really did myself the serious damage but I’m hoping that if this is the case they will find it sooner than later. I just know my quality of life is not what it used to be or should be for my age.

Onesmallstep19693 years ago

Do you mind me asking, what is your diet like? Do you eat meat?

Onesmallstep19693 years ago

Yes, I do accept that of course. Everyone makes their own choices. I hope you accept that my view that a plant-based diet is healthier than one that includes meat is based on many studies and my own experience. Only trying to help. I know that people get sensitive or touchy sometimes when it comes to what they eat. The choice is always their own to make. It seems that merely suggesting that plants are better to eat than animal flesh triggers a lot of negative backlash and that's a shame. Here are a few studies to consider on this question:

pubmed.ncbi.nlm.nih.gov/305...

ncbi.nlm.nih.gov/pmc/articl...

Amethyst91 in reply to Onesmallstep19693 years ago

I eat veggies a lot because I actually like them but I do eat chicken and salmon as a protein option often. However I’m not good at cooking so most my home cooked meals will not have meat and if I order food outside I typically order the vegetarian option. I do love hot wings though and occasionally treat myself which I might have to put off again for a while.

Onesmallstep1969 in reply to Amethyst913 years ago

Good for you! You're on the right path with trying to eat vegetarian. I know it's hard sometimes to stay the course 100%. Just remember that eating meat and fish is always inflammatory. Eevry single bite is inflammatory. Science has proven that. As one doctor put it, it's like healing your injured ankle by doing the right things (eating plant-based) and then, once it's almost healed, re-injuring again by jumping up and down on concrete before the healing is complete. So, when you eat plant-based, you are encouraging healing. Don't interrupt the healing or re-injure yourself by eating animals or fish or dairy. Get healed all the way.

Laura009 in reply to Amethyst913 years ago

Your diet is looking good and there is nothing wrong with eating salmon and chicken. As you say it is a great source of protein. Well done xx

Onesmallstep19693 years ago

Please read the studies that I linked to. They may help. One of them found that "Vegetarians had less severe fibrosis than nonvegetarians." Who wouldn't want to know that, if they have liver disease and are trying to help their body to heal? Just trying to add to the body of knowledge and experiences that we all have to share.

Laura009 in reply to Onesmallstep19693 years ago

Many people on this forum have alcohol related liver disease and struggle greatly with giving up drinking. To add to that " give up meat and dairy" aswell would be wholly unfair and completely unnecessary. Lean white meats and fish will not hamper their liver in any way. To replace this form of protein, essential to liver care and avoidance of muscle wastage, would require taking suppliments which are dangerous to a struggling liver unless specifically prescribed by a doctor. Historically and anatomically we are carnivores.

Onesmallstep1969 in reply to Laura0093 years ago

No, anatomically, we are herbivores. Carnivores have extended, long, canine teeth to tear into meat flesh. We humans have flat edged teeth and small canines like other herbivores. There are many other anatomical features that carnivores have that we humans simply do not share. But I take your point that many people, struggling with alcohol, can't also take on the added change of giving up the meat and dairy that they've eaten all their lives. Have a good weekend.

Amethyst91 in reply to Laura0093 years ago

I honestly cut out as much dairy and meat as possible when I was first diagnosed. I can drink black coffee but I do like a bit of milk so I use almond milk mostly and sometimes even get a plain non dairy yogurt. Cutting out junk food isn’t that hard though I was a huge snacker type person vrs full a meal type so realizing there are not healthy snacks has probably been the hardest part for me especially realizing even fruit needs to be a minimum.

Laura0093 years ago

Agreed. And my husband died of cirrhosis caused by alcohol addiction not from eating meat !

3 years ago

Whilst sharing experiences and difference of opinion can be of interest - please always seek medical advice from you own doctor /registered dietitian/ health care professional before undertaking any new dietary regime to ensure it is safe for you as an individual.

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