66yrscared

[66yrscared]

I actually posted on this site before but somehow got knocked off! I have really missed it! To refresh everyone’s memory, I was diagnosed with cirrhosis of the liver late in December. I have had a CT scan, bloodwork, and a liver biopsy. I do not know the actual stage of the cirrhosis. My G.I. doctor wants to do more bloodwork and the next couple of weeks. Apparently it is going to be every three months! I have been told to lower my blood sugar and to lose some weight. My sugar is about 130 , sometimes less. My weight is still way up there at 228 although I lost about 20 pounds since all of this has begun. I am only 5’2. I do not drink alcohol. Even though I am trying to lose weight and lower my sugar... I keep having pain on my liver area and it has me really scared. Does anyone know if this means it is getting worse??? My dr has not been very helpful. So far, he has only told me I have full blown cirrhosis - but that the good thing is that for now my liver is still working! Does anyone have any information or advise for me ??? THANK!!!

[nettl1]

Doctors think we know everything. You are paying them and have every right to ask questions. It’s very scary at first. I’m two years in and my liver cirrhosis is stage 2. I took 90 days of Epcluza for the Hep C. After 3 months more blood work and Hep c but always will carry antibodies. The medicine was very expensive but I only paid $5 out of pocket. I go every 6 months for blood work and scans for fluids the liver disburses. They say the liver gives no pain. But we’re in pain. Also my Spleen is enlarged helping liver and sometimes I feel pain when I turn. Not sure if spleen gets between ribs, but that’s what it feels like. Low salt, no alcohol, low protein and your sugars. It took me a long time to lose weight. I weighed 180+ but now 140. Hang in there. And keep this communication open. We’re all going through this together! Prayers for you.

[66yrscared in reply to nettl1]

Thank You!!!

[nash2 Partner]

Hi 66

You are on a track that many of us know. Since you are diagnosed with biopsy you do know where you are which is good. The quarterly testing is standard and your doc is looking at your situation in more detail it sounds like. Knowing your enemy is important. Losing weight and eating a liver friendly diet are critical for you. For now they are the only treatments in your problem is NASH not something like autoimmune. The pain is probably from your liver as it is a common symptom but your doc should rule out other possible causes. You have made a good start but you need to continue to get your weight under control. It is possible to stop the progression if you can eliminate the things that cause inflammation in the liver. Many people here have been able to do that. Think Food As Medicine. Eat to minimize the work your liver has to do which is really a mostly plant based diet with no added sugar and minimized saturated fats. It isn't easy but can be done. Here is a link which may give you some things to consider.

fattyliverfoundation.org/na...

Wayne

[Chellie007]

I was diagnosed with a fatty liver which was a Stage 3. I have since lost about ten pounds though I was never that much over weight. My blood sugar upon waking was at times 113. My experience in changing my lifestyle which meant for me cutting out all alcohol, sugar, a lot of carbs. My blood sugar is now down to 92, my fatty liver is Stage 2. But what I can tell you in my experience during the initial 6 months of this process was my liver seemed to hurt more. I’m not sure if it’s because I was more aware of my liver or if it was from the inflammation decreasing and the liver echostructure changing because of that. Anyway my liver or that area did hurt more during that initial 6 months even though I was actually improving.

[66yrscared]

Thank you. I really hope that is the reason for me as well. It just really worries me! Also, I have noticed the vains in the top of arms sticking up - is that another symptom of the cirrhosis???

[Chellie007 in reply to 66yrscared]

I’m not sure about the veins in the top of arms with cirrhosis. I’ve heard of spider nevus....a little center red dot with red lines that extend out like spiders legs....and from what I’ve read they can occur on the chest and face area.

[Hidden]

Hi

I too get do much. My consultant told me my liver is very enlarged which is stretching the capsule around it , this then causes the pain, it's the capsule that has the nerves in it. I get pain around spleen too as that is also enlarged. Please take care. Lynne

[66yrscared]

Hi Lynne! I’m trying to, but sometimes I just don’t do a very good job. But I am trying!😊 Thanks, and you take care of yourself also. All we can do, is do our best!

[RosaRugosa]

Cirrhosis is a scary condition. It is dangerous, and there is no cure. However, there are many tings that can be done to reduce risks and improve health.

After a lifetime of being almost constantly on a diet, and doing lots of exercise to keep my blood sugar down, I developed a nasty infection at age 45 and could no longer exercise. My blood sugar soared, my physicians ignored the problem, and my liver "decompensated" and developed cirrhosis. I have been severely disabled ever since. At the age of 51, I had massive internal bleeding from ruptured varices, and nearly died in the ER.

I am now on a ton of medications, and they do help some. I am still very disabled, but no longer expert to die soon.

It's important to find a doctor who will work with you. I did much better fter I was able to see a liver specialist (hepatologist), not just a GI specialist.

Make sure your doctor prescribes all the drugs you need. NASH, and NASH-induced cirrhosis is not caused by behavior. A healthy lifestyle might help short-term or in a few people, but all studies attempting to improve metabolic syndrome long-term with diet and exercise have failed. (Metabolic syndrome is the constellation of disorders that include Type 2 diabetes and NASH.) If your physician blames your "lifestyle" instead of getting you on medication, find another physician.

Although lifestyle interventions in general have failed, there is some good evidence that limiting carbohydrates may be helpful. (This is the exact opposite of what I was told when I first showed signs of liver trouble -- I was told to eat a high-carb, low-fat diet based on whole grains.) Also, there is increasing evidence that fructose is especially bad for NASH. Fructose means "fruit sugar", and about half the calories in sweet-tasting fruit are made of fruit sugar. (The other half of calories are almost all glucose, the type of sugar in blood.) Some vegetables are high in fructose, too. Table sugar and high-fructose corn syrup are also half fructose in calories. People with NASH are often encouraged to eat lots of fruits ad vegetables, but eating lots of sweet fruits and vegetables is probably bad advice.

Almost everyone with NASH-induced hepatitis should be on metformin. Some patients (including me) improve on the drug Actos. Actos can cause dangerous water retention, and one needs to follow a low-salt diet while on it. A diuretic may also be needed. Some patients improve with Victoza, Byetta, or another similar drug (one that increases GLP-1.) Insulin worsens the problem long-term, and should be a last resort.

You should have an endoscopy to check for varices (weak spots in the blood vessels in the esophagus), with banding of the varices if they are found. If varices are present, this procedure may need to be repeated multiple times. You don't want to wind up nearly bleeding to death, as I nearly did. Feeling out of breath, with a high pulse, can be a sign of internal bleeding. For $20, you can buy a pulse oximeter on Amazon that will check your oxygen level and your pulse. If you see an elevated pulse with a low oxygen level, call an ambulance. When I had my bleeding episode, by pulse was about 110 (normal for me is about 70), and my oxygen level was in the 80s (anything below 95 is abnomal, for anyone.)

Do not tale aspirin or any other NSAIDs because they can cause GI bleeding. Your hepatologist should review and approve all the drugs you take. Do not consume alcohol -- it can dramatically worsen the liver problems. Ask your hepatologist how much Tylenol you can take -- I am allowed half the usual dose (four extra-strength tablets a day, maximum, instead of the usual eight tablets.)

You will need frequent monitoring for liver cancer for the rest of your life. This can be done easily with a routine ultrasound. And, things could be worse -- I have not only cirrhosis, but also a genetic defect (a defect in my BRCA1 gene, the same as Angelina Jolie) that makes me very susceptible to cancer. (I have already had early breast cancer and early uterine cancer.) The good news is that liver cancer is extremely treatable when caught early. Small liver cancers can be removed by an electric current, done on an outpatient basis.

Your physicians should calculate your MELD score, which is a measure of the severity of cirrhosis. You should monitor the score to see how you are doing.

You may want to be evaluated for bariatric surgery. Bariatric surgery can confuse the brain into thinking the person has just consumed a large meal when they have eaten only a little. This leads the brain to send signals that shut down hunger and cause the body to burn lots of energy. Sometimes, cirrhosis improves after bariatric surgery. The problem is, bariatric surgery is risky and many people with cirrhosis are too ill to qualify.

All of this may sound like a lot, but the good news is, there are many things you can do to help preserve your health.

I started off as a patient, but decided to research my illnesses, and have now had success as a self-taught scientist. I have worked as a volunteer researcher for the Cochran Collaboration, and have been published in the New England Journal of Medicine on the topic of obesity and lifestyle. Most of what I suggest here is evidence-based medicine, although I have noted some of my own experiences, as indicated.

[66yrscared]

Thank you so much for all of the information. I agree that I need to find a specialist. I like my GI doctor, but he is just leaving me hanging...with a lot of unanswered guestions! Please continue to take care of yourself!!!