Patients Non-alcoholic fatty liver disease and NASH
What is your NASH/NAFLD story? Let's share!
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It is not easy to know the experiences of each member or who to reach out to for advice. However, knowing that another person with NASH or NAFLD shares similar experiences or concerns as you can be a relief, and establishing communication between each other can prove to be very valuable.
Therefore. we encourage all members in the NAFLD and NASH community to introduce themselves to help establish such connections!
To introduce yourself to the community, share a little about your story, when you were diagnosed, experiences with lupus, concerns, etc.
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Hi, I was diagnosed almost a year ago now at 32. I knew I was overweight but I didn't really have any symptoms to let me know what was going on. I've been focusing on my weight and I've been doing pretty good with it, but my results aren't really showing it which is frustrating. I'm trying to stay motivated and keep going with it and hopefully I'll get better!
I'm 22 yrs old and was diagnosed with NAFLD. I was told to just exercise and was also given a list of what to and not to eat. I just found out about this. Is there any advice as I start my journey to fight this disease?
Unsure if anyone is still active on this forum but thought I'd reach out as I'm at my wits end. This past week I received a shocking dx of Hepatic Steatosis. My Physician stated that this is a "Common condition" and didn't seem concerned. She indicated that we would wait for blood work to return providing more clarity on why I have this condition and whether or not it's chronic. I am beside myself and very upset over this recent dx. Approx. 4 months ago, I noticed my fingers were red and swollen. Sought help of a Dermatologist. He said it was Dermatitis. After an anti-fungal cream protocol, it was unsuccessful. He tried Thera-prednisone for 6 days. Unsuccessful. Then, Flucanozal, Unsuccessful. Sent me to Rheumatologist. She ran labs in which they returned with elevated ALT- 34, Glucose - 118 but everything else normal. She diagnosed me with Psoriadic Arthritis considering my sudden onset of joint pain. I was sent to a Gastroenterologist, in which he ran labs (still pending) but did an US and found fatty liver HS. It's been a depressing 4 months navigating from one Physician to another and hearing of these horrid conditions. Everything I research on this subject matter is either not a real issue or known as a silent killer. I'm in tears over this more so due to the varying diagnosis. Is anyone here able to provide insight or at least support? Thank you in kind. Carenti.
Hello @Carenti , thank you for your comment, I've moved it to this discussion for more visibility.
Can any of you relate to Carenti's diagnosis experience? Was your doctor supportive and helpful, or did he or she not seem to be concerned like Careniti's doctor? Can any of you share some some advice or support?
@Tainoloco @Stammer @Mark71 @sadboi626 @david78 @Step1966 @pzburl @matthewwensink @Akang1998 @Laureli18 @MistyDW @baracuda25 @Karmic108 @PennyLove @Capsfloyd @Lemongrass @Windiwendi @llscott21
Feel free to share here!
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Courtney_J, Community Manager, Carenity US
I will be having a liver biopsy on Monday, I am totally freaked. My doctor believes it will give her a better look at what is going on inside my liver, I have had all the test, ultrasound, FibroSure, blood test, MRI and all so far have come back with high levels and/or stetosis. Any one here ever have a liver biopsy?
I been diagnosed with severe steatosis hepatic and fibrosis of the liver stage 2 ugh
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dawn m schafer
My experience with NAFLD is a crazy one. From age 18-39 I suffered from terrible daily debilitating migraines. Starting in January 2017, I had to quit my job because I couldn’t move without immense pain. All I did was lay in bed, my the dark and silent room with ice packs over my eyes and on my neck.
On May 14, 2017 my migraine on a scale of 1-10 was at a 20. I was seeing spots, I could hardly move let alone walk, and I spent most of that day in the bathroom being sick.
The next morning I was still feeling awful. My husband asked me if I wanted him to stay home from work. I told him I’d be fine and that it was just a bad migraine so I’d likely sleep all day. About two hours after my husband left for work my body could’t regulate my body temperature and I kept getting hot and cold. I felt sick so I made my way to the bathroom. After throwing up for approximately 20 mins, I tried to stand up. I ended up collapsing on the bathroom floor. I have no idea I was there for. I somehow managed to get up and tried to make my way back to our bedroom so I could call my husband. I didn’t make it. I collapsed on the floor in front of our bedroom. This time I didn’t wake up.
My husband was quite worried because by early afternoon I had not called or texted him to check in and let him know how I was feeling. He came home early to our pit bull going frantic. She lead him to me and she was bonking me with her nose and pawing at me to wake me up. My husband said I was very cold and very pail. He called 911 and I went to the closest hospital. When I became coherent at the hospital I told them I had taken Tylenol in between my abortive migraine pills because I was in tremendous pain and was trying anything to help. They decided to treat me for acetaminophen poisoning. I stayed in the ICU overnight.
The next morning the hospital noticed that the acetaminophen poisoning treatment was not working and decided to transfer me to The Ohio State University Wexner Medical center. Everyone tells me I was awake during the ambulance ride and even getting admitted to OSU. But not much longer I fell into a coma. I was in a coma for 4 days while they tried the acetaminophen poisoning treatment again, they tried yelling to wake me up and lord knows what else. On day 4 the doctors decided my liver was not going to regenerate on its own and put me on the top of the liver transplant list. One liver was passed on, but the 2nd one the doctors liked. The doctors said the surgery would last between 6 and 8 hours but if there were complications it could take up to 12 hours. Happily my surgery went “text book” and I didn’t have any excessive bleeding and the closed on the first try.
I was in the hospital for only 14 days because I was “their miracle” that was recovering so quickly. I had 50 staples in my incision but felt much better than I had in decades because I didn’t have a migraine! I kind of chalked that up to being on all the pain meds and prepared myself for getting these terrible migraines after I was discharged and off the pain meds.
it’s been 4 years (May 2021) since my transplant and I’ve only had a handful of migraines and none of them were as painful as they were before my transplant.
I had to see my GP on the 2nd day after being released and he was ecstatic that my migraines were non existent. He also told me he went to a headache conference where the told him that researchers were beginning to leak these chronic daily migraines to liver disease. If your liver isn’t functioning properly, the toxins stay in your body and can cause all sorts of illness, but migraines seemed to be the most common.
Then my dad showed me a picture of me exactly one year before my transplant next to a picture he took the day I was released from OSU. To say the least, it was shocking! In the year old picture my face was quite bloated and I was extremely jaundiced. In the new picture, my face was back to normal and I was not jaundiced in the least. My illness had come on so slowly that it was practically unnoticeable.
On May 19, 2021 it will be my 4th anniversary of my liver transplant and my gift of life. It’s still so surreal to me though.
My advice is if you have horrible migraines to get a blood test done to see what your liver enzymes are like and to even get at least see 2 different doctors to get a second opinion. I literally had no idea I was sick, but I imagine if my doctor would have ordered blood work to check my liver enzymes, this could have been discovered much sooner. I never had any abdominal pain.
The pathology report came back in my liver as 90% Non Alcoholic Fatty Liver Disease and it was gRey and covered with nodules. My liver would have never recovered. The doctors said I was likely born with a bad liver and my recent battle of taking so much Tylenol just push it right over the edge.
Peace, love, and strength,
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SparkleMotion14 aka Elizabeth
ultrasound confirmed diagnosis of NAFLD. My liver had plaques of fats and I could feel it when I lied down like something pressing against me. Good ending: I started regular exercise on my exercise bike, eat less carbs, no alcohol, lost weight and also taking metamucil once a day at 4:45pm (dinner 7:30). Happy to report 2 months later my intestinal symptoms have gone, and followup metabolic panel showed normal liver function. Maybe metamucil was the key, or maybe all of above. My challenge now is to keep the course. I am eating more carbs now - I am chinese and love my rice, and have beer or wine every other day. Hoping I don't see NAFLD again if i keep up exercise and metamucil and moderate alcohol. That's my story. NAFLD canbe reversed. Praise Jesus.
@Ktanner I have type 2 diabetes and that is where my journey started. I have since been diagnosed with steatohepatitis caused from diabetes and then it progressed to cirrhosis of the liver. I have had the liver biopsy; however mine was done during a colon surgery. I have been told that it is painful but I do not know for sure. My MELD is 9 right now but it fluctuates at times. I was not able to do the fibroscan due to my size. I am overweight but working on this. I am 73 y/o and would not be able to have a transplant so I do not know of a treatment plan for me. Try to stay positive and rely on God to take care of you as he is the great healer. Prayers for you.
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Lorna D. Jarvis
I am in the beginning of the diagnosis process. I am overweight, but not obese. I have felt SO fatigued the last 18 months or so and pain with discomfort in my upper right side. PCP told me stretch more. Hmh!!! finally went to a walk in clinic (per my husband's request) got a CT, which started the whole process!! I have had numerous tests from blood tests, colonoscopy, CT with and without contrast and lastly a liver biopsy. Results indicate severe steatosis with evidence of active steatohepatitis. as well as zone 3 pericellular fibrosis, periportal fibrosis, and focal bridging fibrosis (stage 2-3 of 4). My gastro Dr. said "well you have a few things going on here," but no in-depth explanations. And when I asked what do we do? basically said eat a low fat/carb diet and exercise.... (which I already do), but could offer no medical/professional advice at this time. She did send my info over to Mayo Clinic: haven't heard anything on that yet. Sadly to say, Google has been my medical "go to" for what should I do. Drinking lemon water, purchased some Milk thistle.... and trying to consume more raw veggies; but boy I sure am lost!! It is such a struggle to get up everyday and go to work and try to put in a full day portraying a positive attitude. If I don't work I won't have health insurance LOL!!!
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