Robert Goodban donated 2021-03-22 11:23:57 -0600
Robert Goodban commented on WISH I HAD KNOWN 2021-01-19 12:09:21 -0700Enjoyed reading Rosemary’s comments and getting her perspective. To the list of things your doctor may or may not tell you I would add the doctor does not tell you that depending on your current or future liver status you might best be served by considering joining an appropriate clinical trial. Although the doctor is correct there is no current treatment, but that really is only true if you are referring to a drug being available for treatment. The patient again is mislead as the most important “treatment” at this time is a liver friendly diet, exercise, weight loss if overweight, and the possible benefit of joining a clinical trial depending on your liver status.
So thank you Rosemary for reminding all of us that it is a common experience that doctors unfortunately understate the importance of the “treatment” that we can do ourselves and on our own. We must not allow ourselves to make excuses for not taking our “treatment” seriously. If we are making excuses then the doctors are only partially responsible for our lack of “treatment”.
Robert Goodban commented on SCREENING PROJECT 2021-01-03 12:39:51 -0700Excellent explanation of risk and need for testing regarding fibrosis progression for those with a diagnosis of NASH. All NASH patients should pursue a Fibroscan if they have never had one.
As a member of Kaiser Permanente for many years and because I recently became aware I am pursuing a Fibroscan test with KP. If denied I will pursue it via FLF guidance.
Robert Goodban commented on COVID not the only game in town 2020-12-12 17:36:44 -0700Dear Wayne and fellow members:
Thank you for your post of 9/19/2020. If I understand your timeline you initially presented in 2013 with internal bleeding and were seen in the emergency room, which resulted in an emergency procedure to halt the bleeding. Fortunately you were able to have a liver transplant. In your post you mentioned being four years post op. Transplant would have occurred in 2016. I assume then the emergency procedure not only worked initially to stop the bleeding of esophageal varies, but proved to be successful until you were able to have transplant in 2016. My conclusion is that modern medicine and the emergency surgery team have made remarkable advances over the past few decades. From my own experience NASH was an unknown term or diagnosis in the early 1980’s.
I also wish to thank you for reading and posting my story: “ Rob, we really don’t know what Stage NASH you are……”. I’m hoping someone at FLF will let me know if FLF can help me obtain or direct me where to go to obtain a Fibroscan. I’m also hoping you will advise those of us who are concerned whether a “ live donor” transplant is a better option if available for anyone waiting for a liver transplant.
After my story was posted I received an email from my doctor stating there is no need for me to be concerned at this time, and I do not need to pursue clinical trials and no need to pursue being placed on National Liver Transplant List.
Still I would feel better if I knew which Stage of NASH I am. Are there any accepted parameters for doctors when they are considering whether or not to refer a patient for transplant? Finally, my doctor had no response for my question: “ Has any doctor in the U.S. prescribed OCA for any NASH patient?
If you or anyone at the Foundation has the answers I believe it’s important information for all of us living with this otherwise terminal disease.
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