Many of our fellow patients get involved in The Liver Meeting each year. In 2011, right after my liver totally failed. Someone in a forum mentioned that the American Association for the Study of Liver Disease (AASLD) meeting was being held in Boston. I was SO hungry for information and wondered if it were worth it to attend. Well, I didn’t that year because of another varices bleedout. But I always wanted to go, to hear first hand how I could continue to live with end stage liver failure.
I kept plugging along, reading on the AASLD website and following doctors in social media. It was one of the things that kept me alive. I needed to know that someone cared enough to study the medicines and the treatments that would give me some extra years. Ok. I was definitely filled with deep sorrow and grief. It was a sudden diagnosis. I had slept through the last 2 years. My hepatic encephalopathy was bad enough that I was hallucinating. I wanted my mind and body back so bad.
Because of this group of liver doctors, I’m still alive… AND I’m helping lead a LIVE webinar this Wednesday to talk about Patients Getting Involved in The Liver Meeting. Click here to join me and let’s chat.
My first online doctor
My first personal involvement with the AASLD was through a doctor named Don Jenkins. It was when I was googling cures for Hepatitis C after beginning treatment. I read an article about him and then wrote one about his contribution to liver disease and his use of the word CURE. I tweeted him. It became a friendship where he sent me articles about my ESLD, and encouraged me to keep a healthy lifestyle and never give up. His warmth and friendliness gave me courage. He was an expert, yet he cared about every patients health enough to encourage me to wrote and reach out to other patients.
Patients Getting Involved in The Liver Meeting
Fast forward through my own diagnosis with liver cancer and then a transplant, I am now a huge fan of the AASLD. As a patient, I spend a lot of time reading about the latest developing drugs and treatments. I enjoy knowing what options are available for myself, and for those patients that I interact with here on the blog and anywhere that liver disease is being talked about.
This week, I’m presenting along with Dr. Meena Bansal and Ryan Clary at a webinar. We’re going to tell you more about how patients attend The Liver Meeting for AASLD. We’re going to talk about how patients can attend. You can ask questions about the meeting and I am hoping that a lot of my friends will be there.
As a teacher, I always think of doctors from the academic aspect. Translate: The men and women who make up the AASLD are the ones who did their homework in high school. These amazing people cared so deeply about medicine that they took additional time to get accepted into a university. They spent most of their young adult life studying medicine. At some point, they developed an interest in the gastro system, the field of hepatology – study of the liver – or even transplant medicine. Some became primary care, others clinicians, surgeons, and hepatologists.
Doctors are all very tuned in to understand the patient voice and experience.
The patients who attend The Liver Meeting AASLD will meet many of them in webinars, chats, and workshops. But we will also be gathering together. I love to join the chats where it’s patients like us leading the talk and we all get a chance to ask questions and learn more about how we can Live Longer Stronger with liver disease. Join the webinar this Wednesday, September 22, 2021 and I’ll see you there! xo Karen
6 thoughts on “Patients Getting Involved in The Liver Meeting”
Hello out there l wanted to know if it’s safe to have the vaccine if you have an enlarged spleen and varices & cirrhosis if it can cause a problem to this body that God gave and mess it up with alcohol and drugs that l regret l would appreciate any information. Thank you P.S. also is it safe to go the dentist in this time if you haven’t been vaccinated.
Hello friend and I am so sorry to have not kept up. No excuses, but the reason is that I went back to work during COVID. So You have already made your decision I know. Did you get the vaccine? I went too long without a cleaning and had a cavity. Yuck.
Also, it is never ever ever too late for a new beginning. Stay involved in the community here, talk to your doctor and keep me posted. By the way, I kept my enlarged spleen after my liver transplant. It all goes back down EVERYTHING is possible.
xoxo Karen
Karen, on the scale where 1-15 is undetected & 15.1 and up is detected, I am 13.?. As low as I think I could get is 1.18. I’ve been tested 7 times on this scale since 2012. 23.8 in 2012, 21.7 in 2012, less than 15(?) in 2015, 15.6 in 2019, 16 in 2020, less than 15(13.4) in 2020, less than 15(13.9) in 2021. I just became aware of this test & went back through my bloodwork. I’m keeping up annually now. we shall see what 2022 brings. I feel like I’ve made a breakthrough since G.I. Dr.s won’t tell you anything unless you ask them. Knowledge is Power. Luv, Steve
Steve,
Just seeing this and so glad to hear the news. This makes me wonder what my number is. They probably use the same scale on all of us right? I went undetected in 2012 and can’t even remember what it was? Maybe, but I just wrote a blog on HE and I don’t trust my memory.
YES we have to stay on top of all this. What did you find out on your last test? Knowledge is def where the power is and I wonder about you now with all of that flooding. Sorry to be so behind. I barely wrote in 21/22 but am back with a promise to keep it strong.
Are you going to see GI every 6 months?
xo xo Karen
Hi. I’m Sandy and I found out I had cirrhosis of the liver after I had gallbladder surgery. I had a month later 3 stones caught in the bile duct. I had a fatty liver and cirrhosis. Had no idea. I was a social drinker crappy diet. I guess over the years my liver got worse. It’s been over a year which I dropped 55 lbs, no alcohol processed foods or sweets. I take 2 vitamin E’s along with B12, vitamin D3. I try and exercise 3 days or more a week. I don’t have jaundice, my urine is clear but the most i experience is itching and some insomnia. I’m scared to death and tryptophan do everything right. The only thing my liver doctor has done is seeing me every 6 months, has me taking the 2 vitamin E’s and exercise. Of course he said a low fat diet and no alcohol. I’ve been doing everything he says but I don’t know if it’s enough. Today I received your site in my email. I’m asking what more can I do. I’m a retired RN. Have always been healthy I’m 73 active and except for my liver. Thank you for reading this. Look forward hearing from you. Sandra Depp
Hello Sandy,
First, thank you so much for stopping by. It’s common for people to have abdominal surgery and get diagnosed with cirrhosis. While the doctor is in there, they can see fatty liver and damage. You have been through the wringer with getting 3 biles stones in your bile duct.
Talk to me about your diet. I take it that you have quit drinking still. Stopping sugar is HARD. It had snuck up on me last year and I’m reducing for the new year. Are you keeping up with the exercise too?
About itching and insomnia – I wrote a blog on that you can click the black and white checkered flag on my website that says “Start Here” for a list of all my topics. The Anxiety is real. In fact, when I wrote that blog, it seems like I wasn’t even using perfumed lotions or anything. I’m using Eucerin or the store brand of that right now.
Every six months doctor visit with cirrhosis is the right thing. It sounds like you have a good doctor. This way they can do labs and help make sure you are hitting your targets. I also got an ultrasound to check for tumors at 6 months. That’s how they found my cancer.
I’m just now getting to the bottom of your message. THAT is why you’re working so hard at this. You’re a nurse. Of course you know the consequences. I truly hope this finds you healthy and happy. Do check in and keep me posted. I opened my comment section and saw your message and am glad you connected. That’s a big part of recovery and healing your liver too.
xoxo Karen
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