Fibroscan

[Bellaranger]

How often should I be getting a FibroScan if I was F3 in October of 2020?. What is the usual recommended follow up?

[MINTVCX]

I think nobody can here give you proper advice in this case. The best check with your physician. I think it depends on your condtion, the reason of fibrosis, test etc.

[nash2 Partner]

Monitoring is typically every 6 months with ultrasound. I tried to get a Fibroscan yearly but didn't always succeed. There is variation between docs as to how to follow patients so we often have to push for testing as their view is that they already know what is wrong so go lose weight.

[Bellaranger in reply to nash2]

Thank you for getting back to me. I have to find a liver specialist and stop going to the gastro. She told me she would retest in a year or 2.

[nash2 Partner in reply to Bellaranger]

A lot of Gastro docs don't really pay much attention to NASH since they can't scope it.

[Reb500 in reply to nash2]

Worse. Many gastros don’t even recognize NASH. My mother initially presented with severe anemia and internal bleeding. Gastro kept cauterizing to stop the bleeding. He claimed she had watermelon stomach (catch-all, vague description of stomach bleeding). He never suggested portal hypertension even though that is the primary differential diagnosis that should’ve been looked at AND her blood tests showed abnormal elevations of liver enzymes. Nobody ever combined that information with the physical symptoms. Over the course of eight months she had 8 endoscopies, several blood transfusions, and was totally exhausted, sleeping 18 hrs a day and often nauseous. Doctors blamed her exhaustion on the anemia and older age. My sister and I suggested she go to a more major medical center but she felt too ill to travel. NASH was not recognized until she presented at the ER with ascites and associated liver complications. Multiple organs began to fail and she died a few weeks later. My sister and I combed through her medical records afterwards and subsequently learned that fatty liver had been observed on an ultrasound 10 years previously. She had never been told and had absolutely no idea. Even worse, the Gastro who had access to those same medical records must not have been aware either or didn’t manage to recognize the importance of that finding with what was going on with her medically. Her last year was horrible. If her NASH had been properly diagnosed from the beginning she would have had more options available to her and more appropriate therapy provided and, most importantly, had medical treatment focused on keeping her fundamentally more comfortable during that time. My advice is to make sure you’re getting care from someone who specializes in this disease and understands the seriousness of it and can actually (medically) treat you properly.

[Troutwhisperer in reply to Reb500]

I am not an attorney, but it is so upsetting to read the story of what happened to your mother. Unfortunately there are other individuals with similar stories where there was also enough information in the patient’s file that often more than one doctor could have and should have understood that the picture presented including bloodwork, tests performed, and patient’s symptoms should have lead much earlier to a proper diagnosis and treatment plan. So who is responsible for what is essentially malpractice and a wrongful death that could have been avoided. No one is going to tell you they are either responsible or share responsibility with other doctors, hospitals, and health insurance providers. This was not a suicide. Responsibility needs to be taken by or placed upon those who failed your mother.

It is only my opinion that you and others who are having a similar experience do have a right to pursue legal action. Action that should seek in part a judgement with significant punitive damages. Both you and your mother deserve a judgement that will send a message loud and clear to medical providers that saying “we are so sorry for your loss” is not a proper and acceptable response when those who could have and should have helped your mother failed her.

Sincerely,

Troutwhisperer

[Bellaranger in reply to Troutwhisperer]

It is so sad because she was in and out of the doctors office so much someone somewhere should have seen this happening especially since they knew she had fatty liver. No doctor ever even talked to her about the fatty liver for all those years. It is very sad the doctors do not inform patients what fatty liver can do and turn into. I hear so many stories like mine like my mom's. You have fatty liver lose some weight. They don't tell you it can eventually kill you. My dad has so much blame towards my mom's family doctor. All those years if my mom was just informed. But this is a story I hear over and over. If it wasn't for what my mom went through I would never have know what fatty liver can become and now I do and it's not too late for me and I promised her I would get mine under control.Thank you for reaching out to me

[Alterity]

Go to a hospital that does research. I'm in Ohio and first went to a Gastro in Lima, Ohio which was 20 minutes from me. When I was told I had 6 years to live, I made an appointment at Ohio State University who is also in research. for 13 years they monitored me yearly if things got worst it went to 6 months, only within the last 3 years have fiberscans came available to me. My new Dr which I've had for 18 months ( mine retired) is all about finding a cure. I didn't pick her, my Dr thought she was the one for me and she is great. So if your in Stage 3 I would find one who knows something about Nash, It's your choice call around and interview Dr. for one that cares. Many Dr's don't know anything and they just say, everyone has a little of that. The liver runs your body and is your life. Go get a good Dr who believes. I drove over an hour for years to see my Dr. 3 years ago. I moved to Columbus to be near them. My life depended on it. Your worth it!

[Jkf1 in reply to Alterity]

I'd live to read your whole story from the start, do you have it posted anywhere?

[Bellaranger in reply to Jkf1]

In my posts is some of my story. Basically diagnosed with fatty liver about 10 years ago told lose wait never told how serious it was. My mom had fatty liver forever was always told same thing. Until she got very sick then diagnosed with cirrhosis about 4 or 5 years ago. She died about 15 months ago after a very long and awful battle with this horrible disease. It was awful to watch. So after that I got checked and was told I haD F3 fibrosis and that it would most likely progress into cirrhosis in 5 years. I immediately start eating right. I lost 30 pounds. I have struggled the last few months to eat right. I did gain back about 10 pounds. This is a very hard journey

[Alterity in reply to Bellaranger]

I think I have talked about it off and on throughout the last year. I went for Gastric By Pass surgery in 2001. My blood work said I was fine, I had never been told I had fatty liver or anything. I weight 283 the day I went in. They aborted my surgery, said I was dying on the table and the Dr. said it was the worst liver they had ever seen. I looked back at old medical records and it said in 1983 when I had my gallbladder out that I had fat on my liver. No one told me, just said you need to lose weight. Back then I was like 200. So after 2001 I went to a Gastro Dr. in Lima who said I had about 6 years to live and then I decided I needed to get a second opinion. I didn't tell anyone what that Dr had said until about 6 years ago when I had long passed that 6 years, Between the stabing pain and the flue like symptoms and exhaustion for years, I'm feeling so much better the last 2 years. I think they are coming up with a cure and the research pill I have been taken and the 60 pound weight loss in the last 18 months has really changed my life. I want to lose 40 more but it is so hard. I'm at 90 pounds today since diagnosed in 2001 and I've done it all on my own, no surgery. It can be done and when I retire in 2 more years, I plan to really get out there and fight for NASH to help save lives.

[Jkf1 in reply to Alterity]

Thank you for sharing. I was doing so well and lost 25lbs. I've already gained it back. It's like I need to be locked away for a year and fed only what I need!

[Alterity in reply to Jkf1]

I did too. I yo yo'd for 20 years. 283 down to 262 then 242 back up to 262 then down to 220 back up to 242 now 197 and I'm fighting to stay under 200. I need to just get my head on straight and do it.

[Jkf1 in reply to Alterity]

It's a daily fight!! I need to lose 65lbs. What is the name of the research drug that you tried and had good experience with?

[Bellaranger in reply to Jkf1]

I was told by my gastro I don't qualify for any trials because I have a pre existing stomach problem.

[Alterity in reply to Jkf1]

I have no idea, they haven't told me what drug I'm taking. I learn next month.

[Bellaranger in reply to Alterity]

Wow your story is so inspirational. I don't understand why doctors just blow fatty liver off like it is no big deal. That is so awesome the amount of weight you lost. It is so hard. I was so motivated for months now I'm so off track I feel like I will never get back on track. It's so frustrating.

[Alterity in reply to Bellaranger]

I'm off track at the moment to, but maintaining and that's important. I want 40 more off by Fall so I need to get motivated. Good luck.

[Bellaranger in reply to Alterity]

This is a tough journey. Especially since I love food. Lol

[Bellaranger in reply to Alterity]

Thank you very much for getting back to me and your kind words. I need to find someone in the city because it seems like there aren't any liver specialist near where I live. It's so frustrating.