Series Overview
Join our host, Dr. Amreen Dinani, as we discuss an often undetected liver disease affecting up to 25% of the world’s population: nonalcoholic fatty liver disease (NAFLD) and its more severe form, nonalcoholic steatohepatitis (NASH). Each episode, Dr. Dinani is joined by hepatologists from across the United States to discuss various components of the NASH care continuum, including early identification, diagnostics, existing and emerging treatments, and the patient care journey. Whether you’re a patient, hepatologist, primary care provider, endocrinologist, or payer, we hope you can join us and learn something new!
Episode 4 - Patient Perspective Bonus Episode
In recognition of International NASH Day on June 12th, NASHNET is releasing a patient story bonus episode. This episode will feature Dr. Dinani interviewing Griselda, an American Liver Foundation (ALF) NAFLD patient advocate. Griselda shares her journey after being diagnosed and recommended resources to others who have recently been diagnosed with NAFLD/NASH. Listeners will learn more about:
NAFLD/NASH from the patient perspective
Patient-centered strategies to manage NAFLD/NASH
Online resources and patient support groups for individuals diagnosed with NAFLD/NASH
Listen to the episode on Soundcloud, Apple Podcasts, Spotify, or wherever you get your podcasts.
Transcript
DR. DINANI: Hello, and welcome back. Over the course of our podcast series, we have been covering a serious and often undetected liver disease affecting nearly a quarter of the world’s population, nonalcoholic fatty liver disease, which we will refer to as NAFLD. The more aggressive form of this disease is called nonalcoholic steatohepatitis, which we’ll refer to as NASH. I’m your host, Dr. Amreen Dinani. I am a hepatologist who specializes in liver disease at the Icahn School of Medicine at Mount Sinai Hospital in New York City. Today, we have the pleasure to be joined by Griselda. She’s a patient advocate for fatty liver disease, and we are very excited to have her on to get the patient perspective and journey of someone who has been diagnosed with fatty liver disease. Welcome, Griselda.
PATIENT ADVOCATE: Thank you. I am very happy to be here and share my thoughts and my experience with other patients. Hopefully, we will get ahead and start a conversation with many other patients to combat this disease.
DR. DINANI: Great, thank you once again. Like I said, we are very excited to learn the patient perspective on being diagnosed and living with nonalcoholic fatty livre disease. So, thank you once again. So just let’s start off by learning a little bit more about you. Can you tell us a little bit more about yourself?
PATIENT ADVOCATE: I am a 63-year-old woman. I immigrated here from El Salvador, and I came here in 1978. I have three beautiful daughters and four amazing grandchildren. My life is a very challenging life. I take everything very seriously. I do my research and do whatever I can to be well informed. I love camping. I love nature. I love cooking. I was married for 31 years, and I had to leave the marriage for various reasons five years ago. I have been dealing with fatty liver since 2005.
DR. DINANI: Wow, that’s a long time. That’s almost 15 years. So, you were diagnosed in 2005 with the disease. How were you diagnosed with the disease?
PATIENT ADVOCATE: Actually, I was diagnosed with autoimmune hepatitis. Then cirrhosis previously to fatty liver, and I was taking a medicine that caused the fatty liver. Well this was according to the liver specialist – what I was taking caused me to have the fatty liver. It was devastating for me since I knew that the two diseases are incurable. I have managed to learn and live with the disease. I have changed my eating habits. I eat very healthy. I avoid sodas. I don’t drink sodas. I don’t drink juices from the store. Everything I do, I prepare myself by scratch. I don’t take any medication unless it’s prescribed by the doctors. They are very cautious about prescribing me anything because I have been at the last stage of cirrhosis of the liver for the last three years. Dealing with everything is very devastating at times because of the tiredness that comes with the illness. It becomes fatigue later on, and you are limited from doing things that you were able to do previously. I have been very active my whole life, and now I need help to get things done around the house, which fortunately my children can help me with. I have three siblings who are willing to help me out too. At that time, I didn’t have much information, but I worked in prenatal care coordinator at a clinic, a community clinic, and I relied on my coworkers to help me out and provide information for me so I can deal and cope with this. It helps me that I am eating healthy. It helps a lot to change your diet completely. Especially the sugar intake – that is something that you have to stop doing. I can see the difference now in the fatty liver than previously, so it’s emotionally devastating sometimes.
DR. DINANI: You’ve given us a lot of information, and I can feel all the emotions that you’ve gone through as you’ve been diagnosed with this disease and dealing with all the complications. I was wondering if you could go back to 2005 when you were diagnosed with fatty liver disease – now, was this something that was found by your liver specialist that you were seeing at that time, or was it your primary care physician? How did it come about?
PATIENT ADVOCATE: It was diagnosed by my liver specialist. I got tested at that time I was tested for blood work every three months. I was having ultrasounds every six months. They were trying to learn a lot of things around autoimmune hepatitis and why the medication was causing the fatty liver. That is the kind of story that got me to read a lot. Prednisone – yes.
DR. DINANI: So, it was through a blood test that your liver specialist suspected that you had fatty liver disease, or did you undergo a liver biopsy? Did they just assume it was fatty liver disease because of the Prednisone? Can you just elaborate a little more on that?
PATIENT ADVOCATE: Yes, they did a liver biopsy. They did three liver biopsies at different years to confirm the fatty liver.
DR. DINANI: And you also mentioned you also have cirrhosis as a result of the fatty liver disease?
PATIENT ADVOCATE: It’s a result/a combination of the autoimmune and the primary is liver cirrhosis and fatty liver.
DR. DINANI: So, when you were diagnosed with fatty liver disease, did you have any symptoms that made your hepatologist, your liver specialist, suspicious of the disease?
PATIENT ADVOCATE: Yes, I did. I was having pain in my upper right abdomen. It was not often, but it would bother me. I saw three specialists before they sent me to UCLA. They assumed that I drank alcohol, that I was an alcoholic, and I was told to stop drinking. I would tell the doctors that I was not a drinker, but every alcoholic says that they are not an alcoholic so they didn’t believe me. I talked to my primary doctor, and he sent me to one of his best friends, a specialist, and he took about an hour and a half to talk to me, and he told me that he would find out what was going on with my liver. He said, “you have something in your liver, but we do not know what it is.” It took him about a year to get my diagnosis. During that time, the process was a lot of blood work. He asked me to change my eating habits and see if I would feel less pain, and it didn’t change. At that time nothing changed. Once they did the second biopsy, then yes, they did said it was fatty liver disease too.
DR. DINANI: It sounds like once you were in the right hands, you had a liver specialist who was able to quickly diagnose you with this disease. Once of the things I’ve heard you say a couple of times now is your diet. Can you give me some examples of recommendations that you’ve adopted to try to improve the fatty liver disease? That you may want to share with other people with this diagnosis?
PATIENT ADVOCATE: Yes. I was never eating out. I never liked to eat out, and that’s one of the things I that completely avoid. It’s a lot of salt when you eat out and a lot of grease and a lot fat and things that you may not know. That’s one thing that I would recommend is you stop eating out, fast food especially. I never drink soda. That’s something that should be avoided too. I do drink coffee regularly, which helps me. I eat a lot of greens, and I see the difference when I eat a lot of greens with my platelets. For some reason, I don’t know if it’s anything related, my doctor is puzzled by it too, but it helps me. I have low platelets. I sauté my food, I boil, and I bake. I never fry my food. I eat raw vegetables at lunch and raw fruit in the morning. At dinner, everything has to be steamed, baked, or grilled. It’s easy on your stomach. It is easy on the process of the liver, without any additives. I have learned to eat without salt. I use herbs and spices—not too spicy—but spices. I bake my own bread. I make my own tortillas whenever I want to eat them. I don’t take advantage of it. I am very careful about what I eat, so before I start trying to get some new items in my food, I do my research so that it won’t damage my liver. I use a lot of olive oil, canola oil, and sometimes I just spray the sauté pan so that I don’t have to use much of it, and the food tastes pretty good. You can use herbs like I said previously, and I drink a lot of water. The juices – I make my own juices and I add water. I don’t add anything else. If I buy anything from the store, I don’t buy anything with more than five ingredients. I know it doesn’t last long, but it’s better for my own health.
DR. DINANI: No, that’s some great advice. What I hear you saying is really try to avoid eating fast foods because typically fast foods are filled with lots of salt and trans fats, and those are things we want to try to avoid with nonalcoholic fatty liver disease. Making meals at home makes a big difference because you know exactly what you are putting into it. One of the things that you emphasized was not to drink soda. It’s great that you never did, but you know, a lot of the struggle we do have is trying to counsel people on avoiding high fructose corn syrup in sodas or sweetened beverages. Some advice I give to people, in general, is that you don’t want to be drinking your calories. There’s a reason why we need to chew our food and take our time to swallow food because it allows your body to adjust to the fact that you’re eating. The other part that I also think is important is portion control and making sure you are only eating a serving of something, versus more than a serving. It’s incredible how we can misinterpret what a serving size should be, so I think those are things to focus on as well.
PATIENT ADVOCATE: Oh yes, I learned that the palm of your hand is the amount of meat you can eat. That’s something you should avoid too, a lot of red meat. Maybe I eat meat once every three months. I eat fish and chicken. I avoid tuna because it has mercury. I avoid bigger fish. I the smaller fish, and from time to time, I enjoy eating some lobster. The red meats are a big no. You can eat them but not that often because that can cause the fatty liver too. I know that when I eat meats, maybe I forget and eat meat twice in a month – I can feel it. I can feel the difference. Because I have very good discipline, I don’t do that anymore.
DR. DINANI: That’s great to hear. Any other last thoughts that you’d like to share with the audience, such as any resources that you’ve found to be helpful in dealing with the disease or managing the disease? Any pointers that you have or guidance?
PATIENT ADVOCATE: Yes, one thing is just to follow the doctor’s orders. That’s the main thing. The second thing is to find a group that is dealing with the same disease. I belong to several groups myself – Living with Cirrhosis, Living with Fatty Liver. The same people are sharing this information that might be new. Sometimes it’s very scary when you join at first because you hear a lot of people that are going to the last stage, and it scares you off. Remain calm because you can avoid all those things if you eat healthy, exercise, meditate, whatever helps you relax and concentrate on yourself. Get as much information from other people dealing with this same disease. There are many groups, and they have good information on their websites. I have heard people self-diagnose with fatty liver. The first thing is just to go to the doctor and go from there. Then find a group that fits your desires and get as much information as you can.
DR. DINANI: Can you give us some examples of groups that you think patients should reach out to – in terms of resources that you found to be helpful?
PATIENT ADVOCATE: Yes, there are groups on Facebook: Living with Cirrhosis, Living with Fatty Liver/NASH. On Instagram there are groups that have almost the same names. There is literature in the libraries, and you can find books at universities that are very helpful. I do go to the library even though a lot of things are digital these days, but I’d rather go to a library and get more information from there.
DR. DINANI: Thank you for sharing those resources. A lot of things that we hear patients is that they don’t know who else to reach out to besides their clinician and other people with the disease. Having a support system, just like any other chronic disease, is helpful.
PATIENT ADVOCATE: The American Liver Foundation has a section with group meetings – there are group meetings in different states and cities that you can join too.
DR. DINANI: That’s great. The American Liver Foundation is a pretty resourceful website, which I definitely think is a great source of information in terms of disease, what to expect, and some simple tools that you can adopt.
PATIENT ADVOCATE: Yes. Okay, there are several on Facebook that people can go to. One is called: Reverse Fatty Liver, Fatty Liver Support Community, Liver Disease Recipes, and The Nonalcoholic Liver Disease Awareness. Those are very good groups that you can join and get a lot of information. You can share recipes, and you become friends with a lot of people in there and feel very comfortable and at ease because it’s very important to feel at ease. You’re not alone. There are other people dealing with the same disease, and there’s always somebody willing to help.
DR. DINANI: If you had to do this all over again, what would you have done differently? What would you have wished would have happened differently?
PATIENT ADVOCATE: I would never have taken that medicine if I had known it would cause liver disease. I took it for two years and the doses were high. So, it can cause you some serious problems. I had most of the side effects, so that is why I was taken off the medication.
DR. DINANI: Sorry to hear that. Thank you once again for joining us. It really was a pleasure. We’re excited to bring you into this podcast series to really just give us your patient journey and perspective. We’re just hoping to provide education and build awareness.
PATIENT ADVOCATE: Thank you very much, Dr. Dinani, for inviting me to be a part of this. I’m here to help in any way I can. Thank you.
DR. DINANI: Thank you to our listeners for joining us in this podcast series to increase education and awareness related to nonalcoholic fatty liver disease and nonalcoholic steatohepatitis. Please feel free to check out our other three episodes at your convenience. This podcast series was developed by NASHNET, a global center of excellence network dedicated to improving NASH care delivery. Thank you again, and please tune in next time.