What to do: Diagnosed a year ago with... - British Liver Trust

British Liver Trust
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What to do

skay1957
skay1957

Diagnosed a year ago with cirrhosis caused from NASH. I never have drank. I am overweight. My last visit to hepatologist was depressing after she answered some questions for me. It was my last visit to her until I can get insurance again as I just lost mine after losing my job after 13 years due to computer upgrades. My labs are all okay, nothing really up or down levels too worrisome. Liver ultrasound shows cirrhosis but no ascites and endoscopy showed a few slightly enlarged veins but not enough that would require treatment. I asked her a few questions about my condition and prognosis. I asked if I lost more weight to get my weight down to a good range (now is 217, 5’7”) would it help the cirrhosis to stabilize and not get any worse. She said no, it would definitely get worse over time no matter if I lost weight or not, I also have type 2 diabetes and that # is ok. I said I took milk thistle and turmeric and is that helping me. She said no, that’s not helping. I said so I should stop taking those to save the money. She said yes. I said, well how long do you think I have before I start having major problems. She said maybe a couple of years but she didn’t have a crystal ball. She said she would definitely say in 5 years I would start to deteriorate and show signs and symptoms no matter what I am doing to take care of myself right now. It was just depressing to hear this. I wanted to hear if I took care of myself, lose weight and eat healthy that there was a chance it would stay like it is and not get any worse, that I could live a fairly normal rest of my life, but I didn’t feel that way when I left her office. Just some info, just turned 61, got diagnosed after discovering low platelets and anemia. Had a battery of tests to confirm cause but everything was normal. My weight was the cause. Thoughts?? So nothing I do is going to stabilize it? It’s going to get worse no matter what I do to get “healthy”? I would assume if I don’t take care of myself and eat all the foods I love and enjoy it then I’ll see deterioration sooner than 5 years, maybe a year. I just feel what’s the point now if I’m going to die from this and yes I’m on an antidepressant. I CAN get in the mindset to fanatically eat right and lose weight and exercise and get as healthy and strong as can be IF it will stabilize me and I not deteriorate but not in her expert opinion can I. She also said if I didn’t have insurance I wouldn’t qualify for a liver transplant either. (I’m in USA).

29 Replies
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Sorry I find it hard to believe your cirhosis is caused by your weight.

There is always a reason for it,whether it be self induced ie alcohol or drug abuse.

Sometimes medication. On top of this there are a host of medical and genetic conditions that will be the cause. I cant answer re medical ins for transplant as things are different here in the UK.

Is there no way for u to get a 2nd opinion?

LAJ123
LAJ123
in reply to carmik

Carmik and Skay1957,

Being overweight is a major cause of Non Alcoholic Fatty Liver Disease ( NAFLD). Also, NAFLD if not addressed by lifestyle changes can lead to further liver damage and ultimately cirrhosis.

Please refer to the British Liver Trust website for more information and advice. Also, NHS Choices have a lot of information about lifestyle and NAFLD.

I'm sorry that you are not a British citizen as here as cost / insurance is not an issue

Jim

britishlivertrust.org.uk/li...

nhs.uk/conditions/non-alcoh...

skay1957
skay1957
in reply to LAJ123

Thank you Jim.

Hidden
Hidden
in reply to LAJ123

I'm so glad you wrote this Jim as it needed to be said, I was going to chime in on the response as it is completely not accurate. Absolutely fatty liver left untreated can turn to NASH and cirrhosis. I wish members would stop giving other members advice without knowing the facts.

The hepatologist doesn't know everything and she shouldn't have been so negative in her predictions about your future.

My mother had NASH and cirrhosis for many years before finally succumbing to it. She lived to age 74 and that was despite being totally sedentary, overweight and taking medication that made her cirrhosis worse.

Lose 40 lb. gradually through diet and exercise and you could live another 15 or 20 years because losing the weight would help your liver get rid of fatty infiltration and your cirrhosis to remain stable or at least worsen more gradually than otherwise.

The death rate for any generation is 100%. Choose to get the most out of however many years you have left rather than giving up because of what the hepatologist told you.

skay1957
skay1957
in reply to Edward1952

Thank you Edward.

Wass71
Wass71
in reply to skay1957

Hi,

I totally agree with Jim and Edward. We have seen many examples of people on this forum who have improved their liver health by lifestyle changes. The liver doesn't uniformly get cirrhotic, there will be areas of healthy functioning liver if you have compensated cirrhosis. The liver is a very clever organ and luckily for us can manage its important tasks with only a small percentage working. Currently there is debate on if the liver can regenerate from a cirrhotic state, but as I said there will be areas where the damage is not as advanced. They do think fibrosis can be improved, therefore it makes sense that if you are able to remove cause then those areas of fibrosis may regenerate.

I have seen many Dr's / specialists over the years and it does amaze me how different their thinking can be. But no one can predict the future, all you can do is try and be positive and give yourself the best possible chance.

Avoid magic cures, detoxes and herbal/ alternative medicines. Don't take any supplements without speaking to a Dr first. The BLT do not recommend milk thistle etc they have info on their website which is excellent.

In fact avoid Dr Google and only read trusted sites. In the UK, we trust the NHS sites as they have evidence based advice. I think esteemed places like Mayo are also considered up to date etc.

I really hope you are able to help yourself, ignore the negative stuff and be positive that your quality of life can only be improved if you eat healthily and exercise.

Best of luck, take care.

E

skay1957
skay1957
in reply to Wass71

Thank you so much for replying. Your perspective makes me feel hopeful. I have only seen one liver doctor, the one that didn’t paint an optimistic future. A part of me “at times” is in denial of the whole diagnosis because I don’t feel sick but then I’ll have a little dull pain above my right rib cage or I’ll recall a few years ago I started having nose bleeds out of the blue when I had never had one before, or knowing two CTs and an ultrasound can’t be wrong, that I continue to have low platelets, and I project back to reality. Thanks again for what you said. It really did lift my spirits.

Kimlescam
Kimlescam
in reply to skay1957

HI

Totally agree with the others - my husband started with a fatty liver and if we knew then what we know now our lifestyles would have changed immediately. He too developed NASH cirrhosis and a whole host of other problems with it.

He was one of the lucky ones and got a liver transplant last year but I am sure he could have held it at bay longer had he made some fairly drastic changes in the very beginning.

Change you eating habits and get more general exercise and try to have positive thoughts about it all. This forum is an excellent help and will try and support you as much as they can.

Good luck and don't give in.

Kim xx

Hi Skay, I am sorry to hear your plight. Based upon what you have told us, you have to do whatever you can to improve your situation. Losing weight and eating healthily come right at the very top of that list. Alternative treatments such as milk thistle and turmeric may help but there is no scientific fact that underpins their use or benefits and as such are often dismissed “out of hand” by the medical community. If you manage to lose weight your Cirrhosis should be under control but please remember I am not a doctor I am merely passing on my experience. I too was diagnosed with NASH cirrhosis and was told it had been caused entirely my my weight 336lbs and 5ft 8in. I had also developed HCC as a cirrhotic Liver is the perfect breeding ground for this type of cancer. I had abused alcohol for many years but have been assured by some very distinguished medical people that this played no part it was purely down to weight. I had already stopped drinking about 11/12 years before the onset of Cirrhosis so accepted it was weight and moved on. I changed my diet completely to a juice regime and freshly cooked food, cut out most of the crap I ate and the weight began to fall off. I was told that the cure for me was a transplant but unless I lost enough weight to have a BMI <40 forget it. I started at 55+. I lost enough weight to qualify for a transplant now around 210lbs. I eventually got the call but I haemorrhaged almost immediately and the procedure was aborted and became a battle to save my life. They pumped 25 pints of blood into me before managing to get me to ICU and my wife was told I probably wouldn’t make the night but whatever happened I would never leave the hospital alive. I went into an uninduced coma which lasted 12 days and when I eventually came round I was told what had happened and when I asked about my prognosis I was told maximum 6 months. Well that all happened in November 16 and I am still here. Happy, healthy despite Cirrhosis and cancer and I honestly have not looked healthier for many years. Every time someone sees me they say “Wow, you look so much better than when I saw you last month”. The moral of this story is that medical science can only do so much, you and the power of your mind can achieve so much more”. Lose weight, eat healthily, be happy, have a positive mind, every day is a bonus so grab it with both hands and live life.

Wow! I am blown away by what you have been through. Thank you for sharing your experience with me. I am trying to get out of the mindset of “what’s the point attitude “ and start eating right and lose weight. I pray I soon turn it around.

You had messaged me months ago when I was really down about what my doctor had told me. I wanted to ask how you are doing now and if you could be a little bit more specific about your diet that you did. Have you had a transplant yet?

Hi Skay,

I can’t find the post you are referring to, so if I repeat anything from before apologies.

I was diagnosed with NASH Cirrhosis and primary liver cancer at the same time. I weighed 155kgs at the time. I had a resection and was told by the surgeon that the cancer would definitely return. I needed to lose a lot of weight to qualify for a transplant when the time came. I do not eat vegetables so with the encouragement of a wonderful nutritionist I started on a shake regime using as much fruit as I could. The taste of Kale and cabbage and spinach can only be endured by psychopaths 😜😜😜.

The surgeon was spot on 12 months later the cancer returned and although I hadn’t lost quite enough to qualify for the list we agreed that if I continued with the regime I would be considered.

I eventually lost 50+kgs and my call came in November 16.

I wish that everything’s then went tickety boo for me. The transplant was aborted due to a massive haemorrhage and I spent 12 days in a coma. My family were told the end was imminent as they had to transfuse me with 25’pints of blood which a healthy liver would struggle with never mind a diseased cancer riddled one.

I am still here still at about 100kgs, I’ve stopped juicing but that was a personal choice. I haven’t drank alcohol for 16 years. All in all

I am doing well. I have now had about 14 embolisations and will find out next week what the next step is. I have been on 3 cruises and spent December in Florida with my grandkids. I am 60 this year and I am planning the party “The Medical World Said Could Never Happen”.

If there is anything else you want to know just ask.

No chance of a second transplant attempt.

Ray

The reason I sought you out was about 7 months ago you were one among others that told me not to give up and that doctors can be wrong when they tell you there is no hope left. I just wanted to know how you were doing now. When I first found out about my NASH cirrhosis I read everything I could and I went on a strict evolution to change my eating habits and lose weight. I lost 40 pounds and I was on my way to getting my “figure” back. 30 more pounds and I would have been there at a normal weight. Then I went back to my liver doc and she pretty much stuck a pin in me and made me lose all hope that anything I did was going to make a difference, that I would get worse, that there would come a time if I lived that I would be faced with transplant and/or death. My endeavor was to stabilize my liver and thought if I took care of myself that I would live out the rest of my life and not reach that point of transplant, get my weight down, take care of myself and eat right. Leaving her office that day I felt defeated and decided there was no point in doing all this if the outcome was the same in her opinion. I gained back all the weight and haven’t seen a doctor since. That was last summer. I am slowly starting to care again about myself and your ordeal was on my mind and wanted to see how you were doing. I’m not sitting around feeling sorry for myself. I went to New York City right after that on vacation. I actually went on a cruise too back in October. I would have rather had someone with me but my son who is 28 decided he didn’t want to go so I just went ahead by myself. I enjoyed the food! Thank you for writing back. I wish you well. Take care of yourself and write back when you can.

Kay

Skay,

I am convinced fighters do better than people who just accept the inevitable. No one is leaving here alive regardless of health. You sound like a fighter, so just learn to roll with the punches. This is a hard path we tread, and your reactions to developments will make all the difference. I take every little setback as a challenge and that helps me cope. I can occasionally get on my pity potty and feel sorry for myself, but family and friends make sure these visits are pretty short. Medicine doesn’t know all the answers but I still have to do my part. Get back to the healthy eating and reach out anytime you want to talk.

Ray

Hello Skay1957....I'm curious to know how long ago were you diagnosed with NASH before it developed into Cirrhosis? Don't let the grim outlook from that doctor be the final say but do thorough research on this disease and you will find that making a healthy lifestyle change and regular exercise has a positive effect. Much prayers for you my friend.

skay1957
skay1957
in reply to Bikerguy54

About 9 years ago I had an ultrasound that showed inflammation, enlarged spleen and fatty liver. The radiologist that read it I personally knew and I sat down with him at the computer where he talked to me about it as he looked at the images. At that time he told me I had a lot of inflammation but he didn’t elaborate on what it all meant. In hindsight, I really think he felt it was my doctor’s place who ordered it to diagnose me and make the decision on what to do next. Well, when I went to see my doctor he just pretty much brushed it off. I remember asking him what could it turn into and he said cirrhosis but he assured me he didn’t think that would ever happen. In hindsight of course he was wrong. He never ordered another ultrasound, nothing, just labs to keep check of LFTs which never were that elevated. I am not exactly sure why I had the ultrasound in the first place. I think I was complaining of dull pain in my right upper quadrant and concern was gallbladder but that was ok. I continued to see this same doctor for years. It was only at a particular time last Year I saw a P. A. Because I couldn’t get an appointment with him that a CBC was done. Unbeknownst to me he wasn’t checking CBCs ever. CBC showed anemia and low platelets. Terrified thinking I had cancer or leukemia. I was sent by the P.A. To a blood oncologist who did a battery of tests including a CT and that’s when the cirrhosis was discovered. The cause of the cirrhosis as being NASH was only given after every test in the book was done to rule out other causes. So you see I went 9 years of not being monitored for the ultrasound results from 9 years ago. I was told not to worry about it 9 years ago so I didn’t. And obviously my doctor didn’t either.

So I was diagnosed with early to mid stage fibrosis. From the gazillion things I read it may be possible to cure my liver. Cirrhosis is a bit more complicated, however I've read much that says it may be possible as well. I wouldn't go so far as to say that, I'm not even totally sure mine can be cured.

I've seen a drastic improvement since I was put on Metformin for prediabetes. I lost 30 lbs. The docs say most lose about 10lbs on Metformin. But I have changed my eating. I dark green salad every single day, usually with grilled chicken. I only eat 2 small meals a day, between 11am and 7pm. Intermittent fasting allows my liver to clean itself without having to filter food. I don't eat sugar or artificle sweetener. I have been eating fruit because it summer and the fruit now is so good, but I will even mostly stop that in the winter. I also don't take any pain killers or decongestants. Only my allergy meds so I don't get sick. I used ice for head and body aches.

I've also started to cut down on chemicals. I only use pure olive oil and apple cider vinegar. I use sunflower oil on my skin and hair in place of lotion and frizz control products. I clean my kitchen mostly with vinegar and water. And I continue to look for other changes I can make.

I won't know if any of this helps until I go back in November. But I feel so much better! I used to be sweaty all the time, had nose bleeds and retained water like crazy! All of those things have completely gone. I'm not exhausted anymore and I feel much less depressed. I feel like my old self. I still feel that little dull pain under my right rib, more so when I eat. But in the end, if my liver doesn't heal, but also doesn't progress, then I've accomplished a lot. I have my quality of life back and the remaining healthy part of my liver is working.

skay1957
skay1957
in reply to Lara86

I really admire your drive. You are so lucky. You probably are reversing your diagnosis of fibrosis. Keep up the drive. I bet you will get great news in November that your liver has regenerated and you’re going to be okay. If it hadn’t progressed to cirrhosis then You probably caught it in time.

Lara86
Lara86
in reply to skay1957

Thank you, I hope you are correct. The reason I told you that is so that you could get ideas of what to do. I hope I can reverse it but I don't know. Your diagnosis is more severe but you can still take many steps to prevent it from progressing and possible reverse some damage.

My diagnosis came from ultrasounds, CT and Fibroscans, not a biopsy. It's possible the damage could be worse. The point is that I feel so much better and you can too. It's not as hard as it sounds because I notice a difference when I slack off. Sometimes on weekends when I'm out I don't eat as much greens or I eat something not as healthy (never alcohol, sweets or pasta etc, I still NEVER eat those things) I don't feel as good. Try it. Baby steps. Change a little at a time. It'll help you feel so much better!

VeeWat
VeeWat
in reply to Lara86

What stage fibrosis were you on the fibroscan?

skay1957
skay1957
in reply to VeeWat

I never have had a fibroscan

I would go for weight loss and exercise to beat the odds. Doctors don’t always know everything. It certainly won’t hurt you and you might feel better.

skay1957
skay1957
in reply to G1nny

Yes, you are certainly right there. I think losing weight ought to help even if my doctor didn’t think so.

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I agree with everyone else. I have got Nash with fibrosis. I have received lost 10lb!! I'm hoping if I carry on I will get less pain. I'm in pain when hungry but also when I eat!! I can't win!! Love and hugs to you all Lynne xxxx

You know, if anything, changing some of the eating habits will help you in a good way, or another.

I am stage 3 fatty liver, with mild fibrosis, PCOS/insulin resistance. I am doing the KETO diet and have seen great results--lost weight, feel good, feel full earlier, and just found out i am pregnant, despite PCOS :) Check out Dr Ken D Berry videos on youtube regarding fatty liver. I believe you can still reverse it or at least stop the progression if you cut out all grains/sugar. Eat meats, high fat low carb, nonstarchy vegetables, cheese, eggs, nuts. The simple carbs (breads, cereals, rice, pasta) will further damage your liver. Also, coffee has liver protective properties, just use a little stevia to sweeten.

skay1957
skay1957
in reply to SamHodge

Best wishes on your pregnancy. My fatty liver has progressed to cirrhosis though so once it progresses to that stage of fatty liver, there is no reversal (so the doctor says). That is where I am at.

Hidden
Hidden

Anything you can do to reduce the inflamattion and fatty infiltration will definately help slow the progression possibly even right down to a halt. Losing weight is going to help and exercising as well. All of these are great responses. I would add though that because the livers fat is visceral it doesnt drop off like exterior body fat. Proper nutrition and making absolutely sure you are strict on diet is going to help that front. As far as what my hepotologist has told me is that one doesn't want to lose weight at to fast a rate as it can cause imbalance in nutrition which can hinder you from getting rid of the visceral fat. I'm a whopping 175 lbs at 6'4 in height. I'm a toothpick. But my fatty liver got a bit worse for a while and I was told it was likely because I went from being 220lbs to 180lbs in the span of 2 months. Noone can tell you how much time before something happens in liver disease or even if it will be certain to happen. Your hepotologist was wrong to have done that to you. Keep your head up love!

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