Beating the Odds

[Karynk]

I have been diagnosed with fatty liver disease, stage 4 cirrhosis, and varicies. I had regular Blood panels done every three to four months because I take Statins so I was shocked to get this diagnosis out of the blue this spring to say the least. I have gone to a plant based diet, work out three times a week lost 20 pounds. My blood work is now “normal” including liver enzymes. I have another liver scan this week. My gastro Dr. Says we may only have to meet once a year and I find that a frightening thought. Any comments? Do you think I should see a hepatologist instead of a gastro. Dr.? Oh yes, Meld score is a 7. I look forward to your thoughts.

[nash2 Partner]

Hi Karyn

You are doing the right things, the question you are wondering about is what is the real status of your liver. The quality of medical care with liver disease varies tremendously. Many gastro docs are ill prepared to deal with it and only the hepatologists have the in-depth training so I lean toward trying to get an analysis by one of those folks. MELD doesn't really tell you a lot. Do you know if your portal vein pressure is elevated for example? What kind of scans were actually done on you? Ultrasound is poor at determining cirrhosis staging. So you know what is happening with your spleen size and platelet count are another concern. Your current Gastro may have all the training needed but asking plenty of questions is key.

Thanks for joining with us and let us know how it goes.

Wayne

[nash2 Partner in reply to nash2]

I should have been more specific after re-reading your post. If you have active varices you need to be sure that is managed actively. Unless they are really minimal and well controlled you need to have them checked more than once a year. They can become very serious quickly if you get a bleed.

[Karynk in reply to nash2]

I will be asking questions about this, she did say they were small but I will be researching them.

[Karynk in reply to nash2]

Hi Wayne, First, thank you, I received info about you from The American Liver Foundation here in Denver and Juliane Swan, you are a godsend! ❤️. I am following your diet ideas down to drinking olive oil and have read What the Heck do I Eat and Hoe Not to Die. I am also working with a personal trainer I figure it is less expensive than medications. I had not heard anything about the spleen? I know Portal Hypertension is important also so will just double check for that information my platelets have been fine I know iron binding is also important. Found out I have a very small kidney stone this week and am going in for a cat scan. With that news I fell off the wagon for a couple of days and got “down” but will be back at the gym tomorrow at 6:30am and get back to my eating healthy. I want to thank you again and please keep steering the ship and being so generous with your guidance and information. Karyn

[mrsmerlin]

Hi

I have also progressed to cirrhosis and I'm really surprised at your yearly checks, I have only heard of 6bmonthly with ultrasounds before each appointment and regular bloods.

I would certainly push for a hepatologist as they are often more up to date with treatments and testing. I'm surprised you gastro hasn't referred you already.

You must have found the golden egg of cirrhosis. Long may your improvement and balance include.

Rita xx

[Karynk in reply to mrsmerlin]

Thank you Rita, I am going to have my primary recommend someone for a second opinion, my insurance will cover me. My primary also wants to keep track with me and I won’t do check ups once a year I definitely want at least every six months. I do appreciate your thoughts, best thoughts to you❤️🥊Karyn