NASH and cirrhosis of the liver.

This is the best reply that I could have hoped for. You have good doctors and you feel that they support you. Me, too! I love my PCP and he supports me and is available when I need him. I think that you will learn a lot about your own liver condition when you see the specialist.
Keep reading and learning.

Thank u I'm sure I will .and I will keep doing all I can to get more information on my rare clotting disorder also I have learned a lot and kept up with the rare disease org.very helpful in with that one illness.with the other 2 there common and. Its not the research I need was just curiosity what to expect and thought since I have No one else that has experienced the clotting disorder to talk to that it would be nice to a least be able to get know others that has experienced the Nash it. Helps the depression I would think

sharonryanbless
Have you checked the Blood Cancers & Disorders Group? That is where you will find people living with blood cancers and disorders or caring for someone with such conditions as: amyloidosis, anemias, coagulation disorders, leukemias, lymphomas, myelomas, myeloproliferative disorders, and more.
https://connect.mayoclinic.org/group/blood-cancers-disorders/

Another possible resource is the Hematology Pages: https://connect.mayoclinic.org/page/hematology/
I found this when I was scrolling thru the newsfeeds, and I don't know if this is related to your condition, but I want to share it with the hope that you might find a piece of information about your condition: Clotting disorders: Factor V Leiden and blood clots
https://connect.mayoclinic.org/page/hematology/newsfeed/clotting-disorders-factor-v-leiden-and-blood-clots/

Greetings,
Just came across this page while searching my symptoms post liver transplant. Here is my past history leading up to problems as of today. I have been experiencing head aches and fatigue for years. In December 2018 I noticed very dark, almost black, stool and started to vomit red blood which turned black. As a result I had 5 separate surgeries for esophageal varices. Finally decided to go to the Mayo Clinic in Phoenix in January 2020 to figure out what was going on. Ended up leaving there with a TIPS after the second attempt. First try the figure they tickled my heart and they had to abort the surgery as my heart went crazy. I was called to get back down there in April 2021 to start the Liver transplant process as I was in End stage liver failure. Got the call at 4:30 am July 23, 2021. Surgery started at 12:30 pm. Had to go back to operating table July 28 for a bile leak. While recovering in the hospital they discovered bladder cancer. Back to surgery on August 20, 2021 to remove the mass. Finally allowed to return home on October 14, 2021.
I seem to not be improving at all. Actually feel worse then pre-transplant. I have had Hepatic Enchephalopathy pre and post surgery. Actually feel this is getting worse along with Massive constant head ache, worse than pre surgery, they are trying to address with Botox treatments. Stomach pains which my local Doctor feels is from scar tissue as a result of the 2 surgeries with the transplant. my list of post surgery problems are: Hepatic Enchephalopathy ( Memory loss, Brain fog), Tremors, Fatigue, Dizziness, Head aches, Stomach pains lower abdomen, Terrible sleep pattern, Itchiness, Hair loss, Vision changes, Just overall feeling terrible. Currently taking Fluconazole 200mg am. Aspirin 81mg am. Mycophenolate 500mg am, 500mg pm. Cylosporine 125mg am, 100mg pm. Lisinopril 5mg pm. Gabapentin 1200mg pm for head ache and sleep. Biotin 5000mcg to try to stop hair loss. Also take 70/30 NovoLOG for diabetes 18 units am, 8 units pm. Hoping this isn't the new normal as I have zero energy. Anybody else experience anything similar to this? Sorry for the long post. I had alot of info to try to get in and could have gone into deeper detail but this pretty much sums it up.
Thanks for any input.

@rstains, Welcome to Mayo Connect. I am a transplant recipient and I also found Mayo Connect a while back (2009) when I was searching for post transplant recipients. I only had one episode of esophageal varices while I was waiting for my transplant at Mayo Rochester and living at the transplant house there. I was lucky that my bleeding was a leakage, and was treated with banding. That was more than enough to scare me. I have not experienced all of what you are and have been going thru, but I do understand the awful fear and helplessness of it.

Recently a couple of members have been engaged in conversation about their TIPS procedure and about before/after liver transplant struggles in this discussion: Liver transplant - Let's support each other
https://connect.mayoclinic.org/discussion/liver-support-group/?commentsorder=newest#chv4-comment-stream-header
Here is another discussion that I want to point out to you: Want to connect with other post liver transplant patients
https://connect.mayoclinic.org/discussion/want-to-connect-with-other-post-liver-transplant-patients/

Rstains, It has to feel good to be at home in your own bed, but I sure hope and pray that this is not going to be your new normal. It sounds like you are at a distance from Mayo AZ with local doctors treating you, that is how I do it. Are the local doctors consulting with your Mayo transplant team about the medications and about your current medications? Are you able to communicate to Mayo via the patient app? When is your next scheduled appointment there?

I was recently diagnosed with Nash from blood work. I have not had any other testing. My doctor was hoping for me to take part in a study that UVA of Va offers however they have never returned my call or my doctors. I have been left with feeling confused and extremely tired. My sister n law has also been diagnosed with the same thing however she is in the stage of cirrhosis. Blessings to all.

@agent, I want to welcome you to Mayo Connect. I see that you have recently been diagnosed with NASH. I can understand why you are feeling confused with a new diagnosis and unanswered requests about your doctor's referral to a study at UVA. How long ago did your doctor make the request? I would encourage you (and your doctor's office) to follow-up with another phone call.

I hope that you have taken the opportunity to read thru the posts in this discussion group. You will be able to read about and meet others who have shared their experiences with NASH. You are not alone.

What has your doctor told you about your current condition? What brought you to Connect? How can I help you?

I was diagnosed with a fatty liver about 2 years ago and then it went to the Nash. I have not had any biopsy of the liver. I assume my liver doctor was hoping that I could get all that done with the study at UVA. My sister n law has been diagnosed with cirrhosis from the same thing. Her condition is very serious and this has me even more worried. I have been told to diet and exercise. Thats all I know for now. Thanks for the reply

@agent, I know how frightened that you feel! I was diagnosed with a liver disease after my PCP noted some unusual lab results during my routine annual visit. He referred me to a gastroenterologist who worked with a liver specialist to make a diagnosis of s rare disease that eventually progressed to liver failure and a transplant. During my entire 'journey' my doctors stressed healthy eating and physical activity.
I want to share this blog article in the hopes that you will find some helpful food information as well as read and participate in the comments section at the end.
NASH Patients: Add These Foods to Your Diet
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/nash-patients-add-these-foods-to-your-diet/

@kathywebb52, I would like to invite you to this discussion. Do you have any thoughts or suggestions for @agent from your experience with diet changes for NASH that work for you?

Thanks for sharing. It is very scary when you wait and wonder not knowing what it is you really have and what caused it.