When I was diagnosed with this diseas... - Living with Fatty...

Living with Fatty Liver and NASH

8,264 members2,163 posts

When I was diagnosed with this disease I got the best support and information from

nash2 profile imagenash2Partner115 Voters
52
I didn't get any support
34
Social media groups
23
I didn't realize it was really a serious problem
20
My doctor or medical professionals
11
My family and/or friends
6
Non traditional health caregiver
5
I wasn't confident enough to ask for support
2
A nutritionist or diet counselor
20 Replies
nash2 profile image
nash2Partner

This survey will be used to help educate interested parties understand the problems faced by liver disease patients. Your responses will be anonymous but it would be a big help if you would take the poll.

Herman7275 profile image
Herman7275 in reply tonash2

I have been very happy that I found Health Unlocked, I have received more information, guidance, ideas, help and assistance from the Administrators and people like me searching out what is the best way for each person to tackle their own issues. Yes, I did take your survey.

Millie09 profile image
Millie09

Done ! very good idea .

Mary505 profile image
Mary505

Have to say my Dr pointed me in the right directions, diet, exercise and the liver foundation. But I've learned more here at health unlocked.

Herman7275 profile image
Herman7275 in reply toMary505

thats great for You, I always felt it should come that way but it still hasn't come that way. I first learned August of last year, but I have learned more from online and Healthunlocked than anywhere.

The poll is missing a very important answer: "Google/Search Engines". They're not the same as social media.

nash2 profile image
nash2Partner in reply to

The goal of the poll was asking about people who helped not where an individual could find information themselves so it didn't include search engines. May have been poorly worded.

in reply tonash2

I understand that, but if "I got the best support and information from" is the question, then "Google/Search Engines" should be an answer. Can you edit the poll to update the question, or add the response? I imagine most people get their information predominantly from Google, at least after their initial diagnosis. Unfortunately, even almost two years into living with this disease, Google is still the only place I can find information without a lot of hassle and waiting.

nash2 profile image
nash2Partner in reply to

I understand your perspective, and I might have phrased it differently but we know anyone answering this on the internet gets information there. We want to document the person to person connections and I can't actually change it once I publish the poll. The statistics guys would be mad. Perhaps in a future poll we can examine where in the internet people find their information.

Andy131 profile image
Andy131 in reply tonash2

Thanks for all your input here....I just joined - I need help navigating my diet at this point. Do you know of any recipe books out there for this??

nash2 profile image
nash2Partner in reply toAndy131

Diets are so individual so we can't know what anyone needs. Here is a link to the general theory

fattyliverfoundation.org/co...

Mamasue1967 profile image
Mamasue1967

I received no information I found info and Dr

On my own

Granny56 profile image
Granny56

i didn't receive any support. I am now getting regular liver scans but I had to ask for them

bluewidow profile image
bluewidow

Medical staff dismissive. Doctor did not discuss. Over a year later got referred to Lipodystrophy.

NYLassie profile image
NYLassie

My internist is great. She is very supportive, though her advice to avoid protein and eat only steamed, non starchy veggies, stay hydrated, and avoid OTC medications until I had a firm diagnosis from a specialist was about all in term of advice. However, she is respectful and not at all dismissive. Most of the information I uncovered regarding proper nutrition and exercise for NASH J glesned using Google and reading articles at the NIH site.

Herman7275 profile image
Herman7275

HealthUnlocked

t3s4 profile image
t3s4

Okay, I am very new to this site and feeling a bit overwhelmed and out of the loop. Is this site HealthUnlocked? What type of testing and how frequent should I have it done? I don't know if I had bloodwork that helped diagnose my NAFLD. I have not had a scan done. Just the ultra sound. I was told it showed no scarring or cirrhosis. Can anyone help me with a diet that works to keep my NAFLD and help me to lose weight? Which herb. Which supplements? (TAKING A BIG GASP OF AIR!) Thank you!

Herman7275 profile image
Herman7275

I was sent to the IU Medical Center for further testing, than I was sent to the bariactrics center to determine what action I wanted to pursue in trying to correct my fatty liver, I told them I wouldn't do the surgery, so I was told if I followed a LC & HP diet thru this dept of the IU North in Carmel IN. and loose 125lbs in a year and keep it off, I would reverse my diabetes and fatty liver, fibrosis and some cirrohosis, so far I started this March 12th, and I have lost all my insulin which was 5 shots 225 units and the Tradjenta pill 1 daily.Plus I have lost 63 lbs. and my A1c is at 6.0 so far... so I am very pleased with support and help I have received plus I learned alot of knowledge from Health Unlocked.....

Bbohnie profile image
Bbohnie in reply toHerman7275

Wow! Look at you! Stellar! Keep at it- this is a life changer as well as changer of lifestyle for the better. Your story is inspirational!

Pirahnawitch profile image
Pirahnawitch

I was 18 years old and was told by a the lady who did my ultrasound scan. She said you have fatty liver and polycystic ovaries. I knew what the polycystic ovaries was as I was having the scan to diagnose that. I did have an ultrasound at 14 but it was clear. So I asked her what the fatty liver was. Her response was your liver has some fat in it and it is an indication that you will get diabetes when your older. Not one person mentioned it to me until I got pain there when I was 29 and i was seeing a gastroenterologist for colitis and was shocked I didnt know what is was or had any follow up. Had regular bloods, ultrasound and fibro scans since. Gastroenterologist only told me that I should hardly drink alcohol and change to a healthy diet and lose weight. I only saw him 3 times and had one 5 minute conversation about it. I have seen other gastroenterologists since and doctors hardly answer my questions and offer any sort of advice other than the words lose weight. I hope to see a metabolic specialist soon

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