Eight years ago now (wow has it really been that long?) My NASH journey began with a big bang...

Five years ago I posted THIS on Coping on the Health Unlocked site which may give you a little background. My memory tends to get a little foggy on details these days.

I'm now into year two of bandings for portal hypertension and at this point in my life I'm ready to jump in with both feet and do all I can to try and keep anyone, anywhere from going down the same path that I have been on for the last several years ... like I said it started off with a bang (one that crept up like Prius and hit my life like a MAC Truck!)

Eight years ago I was - HEALTHY - and I mean that in the BIG FAT Healthy way the uppercase letters depict. At 323 pounds I had allowed my weight to creep up about 5-10 pounds per year for fifteen years or more and never really given it much thought. Back when I had a decent job I had health insurance and actually got a glucose test and was proudly labeled non-diabetic. Type two diabetes had run in the family and I was not only proud but somewhat boastful that everyone else in the family was a diabetic but not me. Once, that was true.

posted anonymously with the patients permission

Thumbs up at the ER.

I had to take an ambulance today. Scary stuff happened and I was home alone. Big thank you to my bro-man for staying on call with me, helping rein in my anxiety as I listened to the sirens pull up.

Firemen came. Fedex got here at same time, awkward, but fire men brought my packages in. Nice. Ambulance did EKG, was ok. Ambulance wanted to give me benedryl on the way because my hives were SO bad this time - but then the EMT realized they were out of benedryl. Neat. They said ER would get me some at check in. They didn't. Neat-o. They let me keep the blanket. Appreciated. So I curled up in one of those wide seats with my puke bag and waited. At one point I was crying, all alone like a weirdo. Closed my eyes and tried to rest anyway.

Then opened my eyes because the absolute sweetest old Mexican grandma lady with little English asked if she could go get me water, I was too red all over, and handed me some tissues from the desk that I'd been in too much pain to go get. I cried even harder because she was so nice to me. And this lady, you guys--- she sang to me and sat next to me. I will love her for the rest of my life.

Posted anonymously with the author's consent

Trying to sleep. My legs ache, my mind is running on the anxiety hamster wheel, i just don't feel good.

Thinking about what kind of home and life I want.

I want the only people who walk in these doors to be the safe kind. I want to sing barefoot in the kitchen while I cook mediocre dinners because that's the best I know how. I never want a man to yell at me because the floors aren't clean enough and the laundry isn't finished. I want art, and poetry, and music, and so much love you feel it the instant you come to visit.

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! 

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.

Dear Wayne,

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.

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.

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.

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.

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.

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.