Newly diagnosed: Hi - Like others, I am... - Living with Fatty...

Living with Fatty Liver and NASH

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Newly diagnosed

PhoenixRisin profile image
8 Replies

Hi - Like others, I am newly diagnosed and scared. The way I found out was after an ultrasound my PCP sent me an email and said you have fatty liver - we can meet on a telehealth call in a few weeks if you want to discuss it. I was slightly horrified. So now I am working on finding a hepatologist. What are the most important questions to ask of a hepatologist?

I am fully committed to making lifestyle changes and will do it - no questions asked. But I am curious - what do you tell your friends about your condition? I have work friends who go out (pre-covid) and are already looking forward to going out when this is all over. I still want to go out. I am social. I don't need to drink at all (I am a little worried about the salt and fat cravings if we go to a greasy spoon place but I can do it). Anyway, I am pretty sure they're going to ask - what's up? Why no drinking/eating?

I only got the email from my doctor yesterday, so I haven't had time to digest this. I feel like I am embarrassed to say I have fatty liver because they'll assume I drank too much. Even the other day the ultrasound person's demeanor changed when she found out what my scan was for. Do you tell people so they are aware? Do you just say dieting?

Thanks

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PhoenixRisin profile image
PhoenixRisin
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8 Replies
dave_tsda profile image
dave_tsda

Hi, I just came out and told my friends what was going on. Not a single one had heard of fatty liver, so there were a lot of questions. And then followed up with questions of how/why it was diagnosed. It may end up being a good thing as I was able to pass along some insight which may help them in some way clean up their diets. And maybe even prevent them from getting this.

To your 2nd point, life isnt over because you got a fatty liver. You can still go out to eat, but you may have to pick your places more carefully. Or look at the menus ahead of time to make sure you can find something that matches with your diet plan of choice. Almost everywhere will have a "healthy" section but when you really look closely, they may not be all that healthy. Or maybe you save up your cheat meals for days like that.

Alterity profile image
Alterity

Tell them they may have the start of it too. They are finding 1 out of 4 people actually have NASH, so the beginning stages are fatty liver, so you are not at this alone. I was 28 when it said I had fatty liver, but no one told me after my gallbladder was taken out. At 44 I was diagnosed with NASH didn't know it until they opened me up for Gastric By Pass then aborted the surgery because it was the worst liver the DR. had seen. So you have time to change this. I have lost 90 pounds since then, but still have a long way to go. Slow and easy. I go out and usually drink water and laugh that I'm the DD. I might have a glass of wine once a month if that. Just to relax. Dr. said it was actually good for me if I'm stressed and it will help me sleep. I don't know that all your friends need to know unless you want to educate them and save their life too. I am single and usually tell the person I'm dating to help them understand why I am the way that I am. I don't eat Steak, explain that one when you go to a nice dinner or Steak house. No red meat allowed. You will do fine with this. Don't stress it, be positive and turn your life around.

nash2 profile image
nash2Partner

A statistic that your friends might find shocking is that if you have 2 friends one of you has a fatty liver. Odds are that others in your circle have the same situation and just don't know it yet. Our society is becoming unhealthy and sharing the information may help others decide to do something before they get the same diagnosis. There is nothing to be ashamed of here and if you are just frank and factual you will feel better and your friends will view it as just a medical condition that you are dealing with. Letting it be a stigma and carrying negative feelings just makes it worse.

TNWONDER profile image
TNWONDER

I agree with the above comments. You need the play the hand you've been dealt my friend. First, be thankful that its just fatty liver and not something significantly more serious. Next - its time to make some healthy adjustments. Let's bring some discipline and willpower back into your life. These are good traits. Do you want to continue on a track where you will feel sick and not be the best you can be? Since i've adopted this lifestyle i feel better in every regard. Sleeping better. More energy. No more bloating or reflux. Sugar is poison. Red meat is poison. Refined carbs - poison. Processed foods poison. Alcohol poison. I understand the social aspect. Im the guy that went out to business dinners a few times a week - steakhouse, nice bottles of cab, etc. I especially enjoyed my red wine. Have a cellar here at home. My goal is that once i've eliminated the fatty liver (and i will), i will allow myself an occasional glass. I will plan ahead. For example, if i know im going out to a top restaurant, or for a special occasion (birthday, holiday). Gone are the days of cracking a bottle open on a random tuesday night at home or going out with the fellas and having drinks followed by a midnight run to the greasy diner.. A glass or 2 max here and there isn't going to ruin your life.

Notknowmuch profile image
Notknowmuch in reply to TNWONDER

Love your attitude. So true fatty liver is something we can take control and improve the situation.

My husband is recovering from Ivor Lewis surgery for oesophageal cancer. His illness is life threatening and he has no choice as far as having to adapt to a ‘new norm’ lifestyle.

His condition is our wake up call...

Notknowmuch profile image
Notknowmuch

Sorry if people seemed judgemental but there is non-alcoholic fatty liver too! I am not a heavy drinker and do not drink regularly (probably a glass of red in a month) yet I have severe fatty liver.

Mine is due to obesity so it is reversible if i lose some weight (even if it is 10% off my current weight).

Thereshegoes profile image
Thereshegoes

It is very normal to be scared , I was ! But then you learn to eat healthy and you feel much better . My numbers went down after I started to eat lots of greens. I have to say that for the past year I haven’t really been watching my diet . I was never overweight . Mine was diagnosed non alcoholic. But when I went back to my doctor for a follow up, my numbers were normal and she told me she didn’t think I had a fatty liver! but she couldn’t explained exactly why my numbers were so high the first time ! ... I am due next month for blood work again. I am anxious to see where I am at this point. Regardless of the test results I am planning on going back to eating healthy again . I will keep you posted !

confused71 profile image
confused71

I tell my family and friends that I have Non alcoholic fatty liver disease ---if i just say i have liver disease they think its because of alcohol .I have never drank alcohol and people are shocked that it was caused by diet and being overweight. I want to give people knowledge it may help someone change their lifestyle .There isnt enough knowledge out there and had i had more info i know i would not be in the position i am today .If i eat out i just choose the best i can but dont get paranoid if its occasionally its okay

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