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Rob, we don't know what stage your NASH is

This is a note to me from a member. I've put it here as I think it speaks to the challenges many of us face.

Dear Wayne,

This is my first attempt to communicate with you directly.  I will understand if you are unable to reply as I know you are very busy what with all you are involved with on behalf of all NASH patients.  Thank you! Thank You! Thank You!  I first came across Fatty Liver Foundation on January 6, 2020.  I read your post and saved it, and read it again just now.  Saying I was both shocked, stunned, and elated all at the same time does not begin to express all of my thoughts and feelings I experienced then, and in the subsequent months that have past by.  I have continued to read and save your posts.

I am a 70 year old male who was diagnosed with a fatty liver in approximately 1986 as the result of abnormal liver numbers which appeared as part of a routine physical exam. A liver biopsy followed, and a referral for consultation at  U.C. San Francisco.  I have those resulting documents, but nothing remarkable was advised at that time. 

My father was made aware that his liver was chirrotic as result of emergency gall bladder surgery in 1965.  He continued without any symptoms or complications until 1978 when he experienced signs of internal bleeding.

He immediately was sent to the nearest VA hospital in Livermore, Ca. He was sent to surgery, eleven hours, upon admission.  It was the first of three surgeries he endured over the next three years.  I was glad to be able to take care of him as he was very sick.  He past away June 15, 1981 at the age of 61.

The surgeons early in his treatment advised us they could somehow tell his cirrhosis was not due to alcohol consumption. 

Your post, “The FDA has got my goat....” was incredible news for me and any concerned NASH patient.  My question is has any NASH patient in the U.S. been able to obtain a prescription for OCA?  I am least concerned with a possible side affect of severe itching.  In that concern the FDA has also succeeded in “getting my goat” as well.

Regarding your post asking “does anyone really care?”, referring to a small online audience viewing the three webinars I admit I am guilty as charged.  What your post did for me is twofold.  First I realized I have been “apathetic” towards my NASH diagnosis has existed since 2008 and possibly earlier.  I was raised to not only respect doctors, but that there is no reason to question their decisions because they know what is best, and they hold themselves to the highest of ethical standards.  Fast forward to managed healthcare systems in our world today.  I had accepted, like so many, what I was being told by my Doctor.  A very caring, friendly, personable individual who I believe sincerely cares about my health.  So, there is no treatment, just lose some weight and exercise.  No reason for any emergency or alarm was what I have experienced.

I have been a member of Kaiser Permanente since 2008.  It has taken me eleven months to realize I need to change course.  I requested and received over 1,500 pages of my medical record. I am working my way thru the paperwork and pulling out all documents related to my liver such as bloodwork and tests performed targeting my liver.  Often the limited bloodwork that was done was the result of my request for an update as to the condition of my liver.

I have had two abdominal ultrasounds, in 2013 and again in 2017.  I never received results or conclusions drawn from those two tests.  I didn’t even ask questions until now.  Such a mistake on my part.

Within the last week I sent an email request asking my doctor what Stage of NASH am I ?  I received an email response from my doctor which included the first sentence which is “ We really don’t know what stage you are.”  Wow !

I really didn’t see that coming.  Maybe I should be angry, but that would serve no purpose.  Actually I’ve just been disappointed and sad for the last few days.  

I am determined to move forward. 

Kaiser Permanente had denied my repeated attempts for their help with regard to losing weight.  For many years my BMI has been in the 32 to 34 range.  KP requires a BMI of 40 to qualify for any bariatric intervention.  A BMI as low as 35 is acceptable if you have comorbid conditions such as diabetes, heart disease, but NASH does not qualify as one of those. KP states they are just following nationally accepted guidelines.

In the same response email from my doctor she lets me know she can order bloodwork regarding my liver, she will also order another ultrasound if I am interested.   I responded stating all of that would be fine, however, I added my opinion as to KP policy towards fatty liver disease, screening for fatty liver, and the desire for information regarding OCA and Intercept Pharmaceuticals success with its reaching the surrogate endpoints agreed upon with the FDA.

Also, what are the parameters set by KP, if any, that must be present for one of their doctors to be able to refer a patient to the National Transplant List. If this is how KP would proceed at some point with any NASH patient.  Hopefully a patient doesn’t have to have symptoms such as sudden onset of internal bleeding, or other serious symptoms.  What I’m most afraid of is that it is no accident that managed healthcare systems being a for profit business, and observing that it functions as a very well oiled machine, those in charge have no motivation to change their present and so far successful plan to simply ignore the elephant knocking at the door until the elephant gets tired of being overly patient and simply knock the door down.  We the patients are the very polite elephant who has been waiting patiently at their door.  I would tell the elephant, sure you might feel guilty for a little while, but you need to just go ahead and stop thinking and just break down the door.  I believe there is a very legal way to do that!

I must pause a moment to apologize for this narrative being so long.  It is the result of all that I have previously mentioned.  I have had a lot on my chest and no one to speak to.  I guess it just suddenly became obvious to me, thankfully, that you and those who have joined the Foundation are absolutely the best people, and most knowledgeable people to share my thoughts and feelings with.  So if anyone reading this is still reading I thank you for your time and consideration.   Any of your thoughts or advice is greatly appreciated!

In closing I don’t expect any additional help from Kaiser Permanente regarding my questions.  I am far from a computer geek, I am somewhat old school, as I think people and our society would be better if we just slowed down a bit, and tried living for at least a short while disconnecting from our cell phones.  Some people have tried this with some positive results.

I have so far been unsuccessful within the FLF website in finding how to initiate a request for help in obtaining a Fibroscan if that help is available.

Also, please feel free to share this email with anyone who might be interested, or wish to comment.  I believe an “Army” of NASH patients, loosely formed, does at least exist in mind and spirit.  As a soldier in that Army, which I gladly volunteer for, I am no longer satisfied to sit on the sidelines, but join with others who may feel as I do that it does no good for ones self or others to remain silent.

Most Sincerely,

Rob and Family