A note from a patient who gave me permission to post it here.
I texted you two years ago when the doctor told me, my husband had weeks to live. You texted me back which really shocked me and so impressed me. I was able to medically transport via ambulance from Pensacola, Florida to Emory in Atlanta and thankfully my husband is still with me. We are still fighting and have learned so much. He is on the Liver and Kidney transplant list but due to YOU he is changing so much and recently his meld score went from 26 to 12!
Now we have a tumor and things are not looking good due to age. I get it, there are younger people who deserve to have it rather than a 69 1/2 year old man. I have just been married to him for 42 years and want at least 20 more! I write this to thank you and to say I agree with the patients report of not getting enough information 100 percent. Prior to Emory, I met a lot of doctors who were totally idiots including one gastric doctor who didn't recognize ascites!Read more
This is a note to me from a member. I've put it here as I think it speaks to the challenges many of us face.
This is my first attempt to communicate with you directly. I will understand if you are unable to reply as I know you are very busy what with all you are involved with on behalf of all NASH patients. Thank you! Thank You! Thank You! I first came across Fatty Liver Foundation on January 6, 2020. I read your post and saved it, and read it again just now. Saying I was both shocked, stunned, and elated all at the same time does not begin to express all of my thoughts and feelings I experienced then, and in the subsequent months that have past by. I have continued to read and save your posts.Read more
I wanted to write to you and tell you that your website made a huge difference in my journey to better liver health.
Sometime prior to 2010 I was told that I had fatty liver. I don't even remember specifics. In 2013 my liver enzymes went so crazy that my GI doc was extremely concerned and ordered a biopsy. I was never told the results of the biopsy. Nor did I ask. I got approved for gastric bypass surgery but canceled two days before deciding I would try and lose the weight myself.Read more
I haven’t posted a personal update in a while and so here you go.
First, before I begin, I’m doing really well right now. I still get tired easily. I still have minimal energy to exert. I still take naps during the day. But I’m doing good.
As a reminder…in August I had a procedure done to remove a cancerous tumor from my liver. The cancer is called HCC, or Hepatocellular Carcinoma. It is a cancer that originates in the liver. This is the third tumor I’ve been diagnosed with.
The procedure I had was a Microwave Ablation. I did have to go under general anesthesia. The Interventional Radiology Doctor who did the procedure used one probe that he inserted through my abdomen into my liver. He moved it 3 times around the tumor to get clean perimeters. The total amount of current through the probe was 16 minutes. And yes, it is a microwave current. Just like you heat up your food. Gross, huh.Read more
As I write this I see the covid numbers are rising again. I hear people in denial, it could never happen to them. Today I have something equally life threatening to write about. It is not about Covid. It’s about ANOTHER little recognized epidemic. I lived it. I will be very happy if this resonates with just one person.
Here’s my story.
Christmas Eve 2013, I was feeling pretty proud of myself. I was on my way to a healthier life. Earlier in the year I joined my local YMCA. I exercised 6 days a week. I was eating healthy and watching calories. All in an effort to lose weight. I had been overweight since I was a child. Smaller clothes was just a small part of why after 30 years I was losing weight. Feeling good was a great reason but what gave me real motivation was the fact I wanted to be a living kidney donor for a family member. I had lost 96 pounds in 7 months. Then I woke up with what I thought was the flu. By evening I thought I was doing better. When I got sick and vomited up a huge amount of red blood. I found myself in my local ER where I was literally bleeding to death with no clue why. I was taken to the back where I was still very much awake and scared to death.Read more
12 years ago I was diagnosed with NAFLD. When I asked what does that mean for me the doctor replied (and I quote), "Lose weight and you will be fine". Well, here I am 12 years later and I am NOT fine. I AM SICK.
After many years of admissions, thousands upon thousand of dollars in medical bills, hundreds and hundreds of tests. I am not fine. I am sick. Lose weight and I will be fine????? WRONG! I have followed all of the instructions and still I am sick. My first diagnosis was NAFLD, then I was diagnosed with gastritis, then acid reflux, then gastroparesis, then ulcers. Then in 2018 I was hospitalized in June with "gastritis". In July 2018, I was once again hospitalized with gastritis. After 5 years of telling my husband they are missing something, and the last hospitalization they were talking about discharging me home; I told my husband, when they discharge me take me Vidant or Duke because there is something extremely wrong.Read more
I was a Very Healthy 26 year old when A Respiratory Virus robbed me of every freedom' I had. It took the very life out of me. No, I couldn't breathe. Or walk. Or talk. Or see my son. In fact, my family was told they'd never see me again, say your goodbyes, she isn't going to make it. BAM. I was dead.
I never thought at 26, with a 4 year old son, I would have my funeral being planned. The vivid Coma Hallucinations haunt. I didn't do anything to cause this. Im here for a reason, though.
The only place out of ordinary I had been was to A Family get together for Granny's 90th birthday .. some folks came in from out of town, and my sons school- to tour the school for pre-K. 31 days in a Coma and on a Artificial Lung Machine and Extended form of life Support with Cardiac (heart) bypass.
I laid lifeless for weeks while a Machine (a room full) worked to pump the blood through my body and re-oxygenate it, because no function was left in my own body to be able to do that. I had a complete lung failure which lead to heart failure and now, Cirrhosis, TBI, Apnea, and much, much more. In a matter of a day or 2, I developed a severe case of ARDS, became septic, went into shock. Was clinically dead for x amount of time. Caused a lot of damage, permanent.
I promise you... THIS CAN HAPPEN TO YOU.
I am a smart young lady. At the time, I worked at a residential care facility (private) My job was to take care of the sick and elderly.
Then I became one, myself.Read more
I know my story will sound far fetched. It's something that I don't share with everyone because it's totally away from the mainstream medical thought and treatment protocols, but it is a true story nevertheless and I am a living testimony to what happened.
I was already working in the holistic field as a massage therapist when I was diagnosed with stage 2 liver cirrhosis back in 2004. I was not in the best of health as I gained weight and not really taking care of myself. By chance, a routine blood test had found that I had high levels of iron in my blood. After biopsy and testing, the gastro discovered that Hep B that caused damage to the liver, which did produce fatty liver from the constant attacks. The prognosis was like all, cannot reverse cirrhosis except delay the inevitable. Doctor prescribed a Hep B suppressor med, blood letting for the high iron, and to be monitored every 6 months for progress of the disease.
Although the prognosis seemed grim. At this time, which was about a year in, I had to make a choice. The doc told me that I would have to take my Hep B meds for life. I reasoned that the meds may be suppressing the hepatitis, but will be filtered out through the liver. So that meant that cirrhosis may become worse or hastened, among other possible side effects. During my career, I read about people miraculously healed of their diseases by the use of herbs, diet, prayer, and meditation, and although I was a believer, never had to put it in practice. Being at a crossroads of delaying the inevitable, I decided to go the holistic route. Someone I followed very closely named Edgar Cayce was instrumental in this journey and followed the advice as best as I could.
I changed my diet to mostly vegetarian slash vegan to decrease the strain in the liver but also provide the neccessary rebuilding nutrients needed, I took herbs that encouraged liver health and elimination of toxins, exercise, I used massage and osteopathy to help the bodies circulation, and lots of prayer and meditation.
What happened? The first year I decided to take the meds and did not apply it just yet. I reasoned that I needed the speed of medical treatments to get me out of the woods first before going down this path. After 1 year I went on it and didn't tell my doc I stopped taking the meds. He found out a year and a half later. He said, "Oh, looks like the drugs are working, Hep B numbers are good". To which I said "Doc, I stopped taking the meds a year and a half ago", to which he said "Oh, I guess you didn't need them". Fast forward to 2016 when doc decided to order a fibroscan as it has been awhile. During the followup he went over the bloods and it still showed minimal activity of Hep B and mild fatty liver, however, something else shocked him. The results from the fibroscan showed a normal liver! No sign of cirrhosis whatsoever. This shocked him and the only thing he could say was "I thought you would be in stage 3 by now!"
I know this all sounds like fantasy but I do swear it is a true story. I had to walk this alone and it was hard. No support group and the fear of going away from conventional medical thinking. Also, there was a fear of me dying. But it is my life, and these things are what made sense to me. But I came out on the other side and am a living medical anomaly.I can only thank God for that. May God Bless you on your journey.
A message from Terri, a liver disease warrior.
I have some things on my mind. Pretty big stuff because it involves you guys. It has to do with the liver disease I have. You see, had I stopped it when I first heard I had fatty liver in 1998 I wouldn’t have cirrhosis today. Yes, the doctor told me it wasn’t a big deal and not to worry about it. Turns out it was a big deal. The thing that bothers me is that doctors are still saying the same things. The EXACT same thing. How do I know that? I’m an admin for a support group for liver disease with over 9000 members.
So let me tell you some stuff. I have NASH Cirrhosis. NASH stands for Nonalcoholic Steatohepatitis.Read more
Hi my name is Brian I'm 42 right now . When I was 40 I was diagnosed with liver disease cirrhosis. I started drinking alcohol in highschool and in my 20s got a lot worse as time went on. The day after i got out of the hospital, which they took out 3 liters of fluid out of my stomach ,I stop drinking and smoking cigarettes . I started taking the water pills and low sodium diet and just Tee spoon of salt here and there . On my 6 month checkup , ultrasound came up cirrhosis, but blood results came out better then before and I was feeling better and no ascites and vein was ok . After about 8 months I started to get stronger and energy was getting better so I got a membership at the gym and started lifting weights and running and stair master . My second visit it's been 1 year and 2 months. All blood results came out normal and no cancer . Ultrasound showed evidence of fatty liver and not cirrhosis. And now I don't take water pills and feel great again and healthy. My advise to anyone is to stay positive, believe in yourself, stop drinking immediately , and all bad habits, and once you start feeling better , exercise, diet and is huge to become better . Anything is possible if you believe In yourself , please never give up . You can do it don't listen to all the negativity the Internet says . I hope I help someone out there .Soon I will be getting my personal trainer certificate, and professional nutrition certificate, and want to help people with liver disease..