New member not diagnosed.

[Lobretto1983]

Hello everyone, I'm a new member here who's spent the last couple weeks researching liver disease, reading your stories, trying to prepare myself for what I may have to look forward to.

A little back story. I'm a 38 year old disabled combat veteran. I sustained a traumatic brain injury while in Iraq that led to my medical discharge. I compressed my lumbar spine, fractured my skull, tore tendons in my knee, the tbi causes seizures and various other small injuries from years of combat.

I was discharged Oct 2006 on an assortment of medicines to manage pain and seizures. Back in 2014 things started to turn for the worse. I started to lose weight, lots of weight, rectal bleeding started and got so bad I've been admitted to the hospital on multiple occasions due to extremely low hemoglobin and hemocrit levels. Since then it's been a long tiring road dealing with the va and their lack of empanty and care. I've had 5 colonoscopies and 3 upper endoscopies, a 4th coming the 16th of this month. I have years and years of labs occasionally showing elevated liver enzymes but never once did a doctor say anything. Hepatomegaly has been noted on dozens of ct scans over the years, never once did a doctor say anything. I've been dealing with chronic fatty diarrhea for years, this has caused deficiencies in sodium, potassium, and magnesium. All the va docs ever did was prescribed fiber which caused its own issues as now I've been diagnosed with pelvic floor dysfunction with dysergenic defecation so anything that isn't liquid doesn't come out without tearing which has lead to mutiple chronic fissures, prolapse and intussusception.

Years and years of docs saying I don't know what's wrong and why this is happening and not one ever looked at my liver, never brought up my Increased inr and prothombin times, never mentioned the times my platelets would drop below normal.

Recently I have had dozens of spider angiomas show up on my chest neck and face, palmars erythema, and mild edema. My GI doc suddenly thinks my liver is not in good shape and is scrambling to get labs, US and mri if US isn't normal, and the endoscopy, she says she'll do a biopsy of she can't make a diagnosis from labs and image studies.

I'm worried at this point all my issues over the last decade or so has been my liver begging for help but nobody noticed the signs. How do doctors get image studies, see hepatomegaly and do nothing. Like it's normal. I feel I could be in a lot better place in my life had doctors listened to me and the signs something was off. Hell I've had ct scans with gallbladder decompression, nothing done, seen nutmeg liver, nothing done, such is the life of a patient at a VA hospital, I rarely find mys

self talking to a doctor how really cares and will take the time to figure stuff out. I get the va is over worked but sometimes things are so obvious maybe you should give that vet a little extra time.

Sorry I just needed to vent, I dont have much of a support system, likely my fault...I'm the kind of fake it till you make it lol.

[nash2 Partner]

Gosh that is an awful journey. It hurts just to read that. Most of us have stories about less than ideal care but you got the full Monty. It sounds like you have a gastro doc that is on your side so I'm not sure what we can do other than hope you can get on a better path.

Wayne

[Lobretto1983 in reply to nash2]

This post was more my need to vent a little then looking for help. You don't need to do anything my friend. Years of fatigue have my support group near none existent. In the end all this dude really wants is a diagnosis, it's the not knowing that weighs on me.

[nash2 Partner in reply to Lobretto1983]

I get it. If you want to pursue it yourself and talk with a hepatologist you might consider this blood test

fattyliverfoundation.org/li...

[TNWONDER]

I just wanted to sincerely thank you for your service to our country. It pains me to read what you've had to endure sir. I will keep you front and center in my thoughts and prayers.

[Lobretto1983 in reply to TNWONDER]

Much appreciated

[geneticnash]

I too, am sorry to learn of your story, and I want to thank you for your service and your sacrifices, of which you've made many. I hope your current doc will keep testing. I think most of us on this site are our own best advocates due to lack of knowledge by our GP's on the liver issues. I wish you well on this next path - keep the faith.

[sosteady]

Each journey is unique but yours is so sad. You joined the service for the good of all of us and our Country and in return we let you down by not supporting the VA and staffing it with caring capable physicians. Please know that I am grateful to you and thank you for your sacrifice. I hope you are in good hands now with your new doctor. In my experience female doctors have been more thorough and more caring. You deserve both. Best wishes for improved health.

[Lobretto1983 in reply to sosteady]

The way I like to explain the VA quality to people is pretty simple. In the civilian world doctors are often paid for each individual appointment. The more they see you and the more they do for you the more money they can potentially make. Even civilian doctors on salary typically make far more then the VA offers doctors. Then you add an overwhelming amount of patients to this systems and the lack of care becomes evident. My new GI doc definitely communicates better then most VA doctors and she does do her best to find time for me but she is just one of many cogs in the the wheel that is the va and she only has so much authority even over her own schedule.

[Lobretto1983 in reply to Lobretto1983]

Hell my sigmoid resection with rectoplexy was one hell of a journey. I was have serious rectal bleeding, admitted and had to have a transfusion even. 3 different VA docs, my primary care doc, my gi doc, and a general surgeon all said it was hemorrhoids based on digital rectal exam and did nothing. I moved and the area I moved to was rural so the va sent me to a community doctor, he took one look down there and said that's not hemorrhoids that's a prolpased bowel. Had surgery 3 days later but the va wouldn't approve the laprascopic resection so he tried a delromes procedure. That was horrific. 2 months of hell, permanent nerve damage leading to my pelvic floor dysfunction and dysenergetic defecation, Urine retention leading to catheter for several days. And finally a return of the prolapse leading to the resection. But because of the nerve damage and the way my body uses my lungs and abs to press down on my guts to have a movement caused the rectoplexy to fail and now I have intussusception. Currently trying to use biofeedback therapy to retrain my pelvic floor but so far it's not working and a sacral nerve stimulator is now on the table. If we can't get things worked out then my entire colon is in jeopardy and an ileostomy would be the last step.

[Troutwhisperer]

First and foremost Thank You for your service!! Regarding your liver I can share my experience with my own fatty liver disease which was diagnosed via liver biopsy in 1986 when routine bloodwork showed abnormal liver panel numbers. Also, my dad passed away at age 61 in 1981 due to liver failure as the result of a fatty liver that was first observed to be cirrhotic in 1965 during an emergency gall bladder surgery. Surgeons then described his liver as being hard and hobnailed in shape. He had up to that time any symptoms of a problem with his liver. After the ‘65 surgery his life went on with no symptoms until 1978 when he suddenly experienced rectal bleeding. As a WWII vet he was admitted to the VA hospital in Livermore, Ca. Immediately he had an 11 hour surgery to control internal bleeding. He had two more lengthy surgeries over the next two years. Surgeons did their best, but none of the surgeries succeeded in controlling the bleeding due to cirrhosis of the liver. He was not a drinker.

Today what my dad experienced would be diagnosed as Nonalcoholic Steathiopathic Hepatitis or more commonly referred to as NASH. I am now 70 years old with a sHdiagnosis of NASH. A diagnosis of Fatty Liver Disease does not mean automatically that the disease will progress to a diagnosis of NASH. Only one in five fatty liver patients’ fatty liver disease diagnosis progresses to the more serious NASH diagnosis.

Everything I know today about this disease is due to my finding the Fatty Liver Foundation on the web in early 2020. Many fatty liver patients including NASH diagnosed patients also find information and advice on Health Unlocked website.

I recently had my first ever Fibroscan of my liver, and a test well advised for patients with Fatty Liver Disease and/or NASH. I also had a new blood test, Liverfast, which is also highly recommended by the Fatty Liver Foundation for liver disease diagnosis.

I will be posting my Fibroscan results on the Health Unlocked website in the next couple of days. I will be looking forward to receiving comments from members. Beyond that my focus is on several new drugs that have showed promising results in clinical trials aimed at halting and/ or reversing the progression of this disease so as to avoid the liver becoming cirrhotic and the patient being able to avoid end stage liver failure as experienced by my father.

Best wishes for you and your health as you move forward on your journey. I have learned the best thing I can do for myself is the realization since 2020 that I need to be my own advocate and standup and speak out for what I need from Kaiser Permanente. I was relatively silent way too long. I do feel a lot of support from the Fatty Liver Foundation, Health Unlocked, and all those who post their thoughts, experiences, and best advice.

Hope this helps you in some small way.

Sincerely,

Robert Goodban

aka: Troutwhisperer

Turlock, Ca.