A few days ago I asked for help putting a list of things that are wrong with how liver patients are treated. I have the opportunity to meet with Congress in a couple of weeks and will be able to talk about problems we face as patients. For me, the most important is that doctors don't try to diagnose it until we get sick. We would have a better chance if they didn't wait so long. A second issue for me is the way the constant medical issues grind people into poverty and caregivers have little help.
I got one comment from my previous question from a woman in the UK. Americans usually complain about everything but I guess patients with liver disease must be different. I'll ask this last time for your help but if I'm the only cirrhosis patient with concerns that is a good thing.
Wayne
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I was told over 2 years ago that I have a fatty liver and that was all I was told. It was not until recently that I looked it up online that I found out more about it. The only way I can keep track of it is the fact I had breast cancer and have to go back for blood tests. That doctor just tells me my inzimes are up but that is probably because of my fatty liver. That is all I have been told. Hope someday someone will let me know something
Hi Annie it is hard to get help from the docs many times. If you want to learn more about it here is a place to start with the basics and the site has links to things like the science and diets if you want to dig into it. It might be helpful for you
4 years ago I was informed i had hep c and was cured but he also told me that I got liver cirrohsis from it. I went to the Texas liver institute and had a great doctor. He cured me and I visited him through the treatment and then he informed me he wouldn't need to see me again till a transplant was needed. Ok I do have a GI doctor that has fixed my varcies when they bleed. I have been through many pcp doctors and they really don't know what to do. They always guess and prescribe medicine which I don't take half of the time due to trying to protect what liver I have left and the side effects are terrible. My platelets are around 61 and just recently the doctor put me on a medicine to help with hepatic encephalopathy. Sometimes I just feel like I'm being pushed around the healthcare system. One other thing is I've had a pain on my left side that no doctor can figure out so they tell me it's my gallbladder cause I did have stones but I informed them it was my left side not the right and put me in surgery to remove my gallbladder and fixed a hernia repair. Funny thing after all this my left side still hurts. Feeling depressed
Hi Lorrie, the PCP merry go round can be pretty discouraging. Even a lot of gastro docs don't seem to provide much help. If you have varices it seems like you should be in the care of a hepatologist. Is that possible where you live?
I agree that I need a hepatologist. I had to make an appointment with my pcp in order to get referred back to the liver institute which is like a 2 hour drive which I'm patiently waiting for. By the way I'm 60 years old
Drs tell you nothing! all I get is lose weight! which I am & the pain is all in your head! all my bloods have come back better Not sure if ALT is ok! I ment to ask GP will call Monday to check if all results are in! My ALT has been rising scince 2014! & I am told NOT to worry! how can I not! If I say how I am feeling physically Drs say it is linked to my depression & anxity! I know some of it maybe, but some is not! No one listens to me!
Communication is a problem for a lot of people I hear from. All we can really do is keep asking questions and try to get to a physician who doesn't dismiss our concerns. Do you live somewhere that has liver specialists? Rising ALT doesn't necessarily mean a liver problem but it can and the only way to find out is to get properly tested. I hope you find a solution.
Thanks I know for a fact I have NASH Quite bad & liver tumors all over my liver, they are adomas & are beign,. I have a MRI due on the 19th, I have one every year & 3 monthly bloods, just had those & they are much better in genral As I have lost weight! GP never told me what my ALT is! The diease & Tumors have been stable for a number of years but a rising ALT does worry me I will know more after my MRI! I had alot of pain & GP thought I had Gallstones (not for the first time) & I had a usound just before xmas last year & nothing much had changed no gallstones! Diease was stable as before! I am having alot of pain mainly after I eat stlll! & have to make my self eat alot of the time! I am not listened to over this! it"s all coz I am overweight or to do with my anxity & depression! Why Will know one listen
I hope you get some relief. Just in case it might be of some help, here is a link to the diet we suggest for most people with cirrhosis. The goal is to make the liver work as little as possible. Small, frequent meals are easier for the liver to manage.
I have also learned more on this site from Wayne than I have from my Dr's. I'm just getting started on the "journey" with NASH. Been changing my diet and have learned which foods and supplements to avoid. Thank you Wayne!
Hi Wayne. I don’t have cirrhosis but I have Nash . In my opinion Drs need to give preventative education. Not only do most people know little about the liver, I have never heard one of my doctors ever consider the liver ramifications of suggesting a perception regime. For example in my case I was prescribed an inordinate amount of antibiotics for minor conditions like the common cold. These meds played a part in my getting Nash. Chicken soup or any other natural remedy was never suggested . Today we know so much more about natural or homeopathic treatment. Why aren’t these treatments at least discussed before prescribing the meds that have such serious side effects over time,
Secondly I believe better screening in the beginning before the condition is serious. Blood testing , ultrasound and even biopsing might aid in prevention of serious conditions. Campaigns like the ones for stop smoking should be run to encourage physical fitness early and through out our lives in order to prevent serious illness from taking a hold. And how about an incentive by Congress to stay fit. Such as tax credits for reputable physical fitness programs. Such a campaign harkens back to President Kennedy’s physical fitness programs. I think we need some cultural changes about health that in the long run will save money for the American taxpayer.
Lastly I would suggest that doctors handle liver patients so poorly because they know they don’t have the answers and frankly are ill prepared to deal with the fears of patients when they have no practical advise to offer. My doc told me after diagnosing my Nash that there is no treatment available but lose weight and strengthen my body in case I may need a transplant operation. I would have preferred to know where I could read about proper diet, exercise, clinical trials and the names of support groups.
I know much of what I have said you probably already know but I hope this helps. Good luck Wayne with the Congress. I would love to read a transcript of the proceedings.
I have a very long story but my life's constant stress now comes from a Marketplace insurance policy that will not cover a visit to a Hepatologist at the famed Ohio State Wexner Medical Center in my own city. The policy I have is an HMO through another local system (OhioHealth) and they do not have any Hepatologist providers and they do not perform liver transplants. So, now I am trying to find a way to get the new referral (from my regular GI to a local Hepatologist) covered by insurance. I already went through this once with a referral to the Cleveland Clinic (2 hours away) for a second opinion only to be told 2 weeks after my appointment that the Clinic no longer took my insurance! So now they have sent me a $4000 bill much of which included repeat testing of the results which I carried in with me. I did get a possible different diagnosis. At home I was first diagnosed with Autoimmune Hepatitis and the Cleveland Clinic said it could be NASH. I'm still on the very scary medications for the Autoimmune Hepatitis so I am critically in need of a Hepatologist.
I worked 16 years as an ICU RN. I worked mostly in trauma unit taking care of very sick people and I have saved many lives. I stopped working after my youngest son experienced a Traumatic Brain Injury from prolonged seizures. I am married and we rely on my husband's salary at a very small company with no health insurance benefits. My individual deductible is now $6500. When the Marketplace first started, my deductible was $1000! But then a new President was elected. I find it so frustrating, anxiety producing and plain depressing to now live a life of constant debt related to my medical problems in a healthcare system that is actually creating a population of middle class working poor. I feel that I am such a burden to my family. I find myself resenting my friends who are lucky enough to work for the government or have group insurance. We could try to file for bankruptcy but we have good credit and want to pay our bills. So in order to pay our debts we opted to cash out some of our retirement. What happened with that! Well, we did not have enough taxes taken out at that time so now we are paying the IRS back $10,000 in taxes! Of course with our itemized deductions of unpaid medical, we end up with about $19,000 above the AGI % and that refund also goes back to the IRS to pay down the tax bill. And now, if I am understanding what I've heard, I think that the medical itemized deduction part was removed from the next year's tax plan. If this is true, I belong to two communities that will suffer greatly from that change. First the community of parent's with Special Needs children with health problems and secondly the community of people with chronic illness. This stress is making me more ill and it just seems to get worse.
I thank you for going to Congress. I wish that I had the energy myself.
Our health care has become an evil political construct which will grind millions into poverty as it destroys itself. The unfairness of people who can't afford insurance paying for fat policies for the feds gets my goat fattyliverfoundation.org/goat
gets my goat as well. however, not all of the players in industry are greedy or working under an evil construct. there are a number of scientists and manufacturing teams seeking to provide practical, affordable solutions and health aid. let's have a little ray of hope, shall we...
There are many people working on the problem and a vast goodwill within the community. My beef is with the political and payment systems which posture and preache about how caring they are while ignoring the unfortunates who suffer because they lack lobbyists. My sympathy goes to the unwell who struggle to live within a system that responds to the lucky and powerful but is casual toward the less fortunate. The Foundation is dedicated to patient wellness. Our key initiative is to use Fibroscan to screen at risk people who have undiagnosed liver disease before they get sick so that they have a chance to avoid dying of liver disease.
I know this post is from several months ago but since I’m a newer member, I just found it and wanted to reply. When I was diagnosed with nash my hepatologist asked if any of my family members had liver disease. I had to say no, even though I suspect some of them possibly do. But I know that my father and my sister and brothers have never had a liver scan. My brother who was shocked at my nash diagnosis told me I was the least likely in our family to have liver disease because I drink the least. When my brother went for a physical recently I told him to please tell his primary care doctor that his sister has nash. His PCP said basically that it’s no big deal - a lot of people have nash. To me it sounds as if the PCP is confusing fatty liver disease with the more progressive nash. I think this is common with doctors. And that’s why we are diagnosed after we are already ate stage 3 or 4 so often.
That is one aspect, but it is the official standard of care not to find liver disease before symptoms occur. The frustrated me so badly that I created our screening project. You can read a bit more about it here
I’ve had issues with the doctors acting like everything’s okay. They don’t explain things where I, as the patient, can understand. My lab work comes back and there’s low or high numbers and the doctors nurse will call and say your numbers are staying the same. She can’t answer my questions. Maybe she doesn’t know. I freak out when looking at the lab work. And in the beginning my liver was stage 4, but he never answered my questions about that. I had two doctors telling me that the liver can heal itself. But my specialist said no. What? It’s so scary for me. Hope others have had better luck.
A few stories from the train to liver hell are here, but there are about a million undiagnosed cirrhosis patient in the US who have no idea they are in trouble. I'm pleased that a few here come forward but I think the entire community should be upset that medicine ignores us until we get sick and generate big medical bills.
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& the pain is all in your head! all my bloods have come back better 
& liver tumors all over my liver, they are adomas & are beign,. I have a MRI due on the 19th, I have one every year & 3 monthly bloods, just had those & they are much better in genral 
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Ann… nervous and worried
