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They say Be Your Own Advocate - but how does a sick person do that?

Posted by admin with patient permission who wishes to remain anonymous.

PBC stage 3/4 here. Need to be your own advocate and that is so hard to do when you are sick.

I thought I was recovering from flu still months later, took week off from work to just sleep and recoup...that was almost 2 years ago. Haven’t returned to work, cirrhosis due to PBC (diagnosis took at least 2 months). The paperwork for long term disability, filing for SSD (well over a year now, denied and waiting appeal ruling since Sept 2017) and doctor visits, bills...gotta sleep, shower, feed yourself and the kids and the’s maddening.

My 80 year old mother does my grocery shopping because it’s too exhausting. The fatigue is incredibly debilitating, the memory loss embarrassing, the patience gone...socializing/volunteering gone...visits with friends you actually do still see? Fake it till ya make it then go home and finally sleep for a few days. Had to downsize & sell home & car...blew through savings in a few months, luckily I have retirement 401k I now dip into. There was no “accident” but life sure did seem to change quickly. Made it to Liver Transplant Center for live donor consideration and they are excited because I am “sick healthy” great candidate - get biopsy and they say we don’t think you have cirrhosis...Maybe stage 3, possibly 2. Can’t say they can rule in or out PBC although the report clearly refers to damage to the bile ducts which pisses off my GI. No further tests needed...Stay on your meds, lose weight blah blah. Bye...throughout all this I sought out neurologists to help explain cognitive issues such as memory loss, speech impairment (15 months of speech therapy-just “graduated” last month). I sought out nutritionists...3 to be exact and they were all different.

I have liver disease, how is the approach so different with them? Plus with the cognitive stuff going on, just too much at the time...lists of what to do and not do. When folks get diagnosed with liver disease, they should go through a Wellness Program that covers it all. I spent hours, literally ALL of my energy when I first got sick about liver disease, complications, what to expect, what tests should be run my Dr at the time wasn’t. I was and am still so so so tired, to then be told last week my long term disability will end in June because my disease is due to alcohol abuse. Oh lord you got to be kidding me - it just doesn’t end - I was flabbergasted! (Look I get it when I end up in ER with painful flare ups and you tell them liver disease they automatically go to alcohol...the nurses AND Dr all have a better understanding by the time I leave I promise you that lol.

I’ve been diagnosed by numerous doctors with PBC an auto immune disease. Seriously, WHY does everyone go immediately to alcohol? This is my insurance too - they have access to all my records, of course I got a new claim manager who can’t tell me where that came from but “their medical review”. I said fine, I’ll get you letters from my doctors explaining my diagnosis. Here I go again, constantly chasing paperwork and calls when I just want to focus on my spoons for the day and maybe shower! I just feel like I can’t do it anymore. My body is getting worn down physically, tears in my elbow from “overuse”. That’s funny...overuse of the remote possibly?😂. Where I was 2 years ago compared to now? OMG much better! I was having problems breathing and literally couldn’t host meetings at work anymore.

I have no clue financially what the future holds, returning to work how will that work when I never know how I am gonna feel...heck I have reminders on my phone telling me to eat because I forget. Simple things take me a long time, learn something new? I was happy hard working single mom with a demanding technical compliance position in a bank running multi million dollar projects with tons of interest and laughter. Now...I am a liver patient, the fact I can unload the dishwasher in one shot by myself is an accomplishment. I am thankful for my care team I have now...but it took me a good bit to get there. And I am a lucky one, my primary care Dr has been with me the whole way through not giving up and educating himself about PBC.

What to talk to Congress about? How to help get the care & proper tests, get people the medicine that can slow down the disease Ursodiol & Ocaliva (that was a fight to get that approved!) education on the disease and medical terminology such as varices and ascites...I got it from Liver support groups...get sick patients an advocate to navigate all this! Financial Assistance...we learn from reading posts like this, and reach out to each other...”what do you take for energy, what is correct dosage for Urso, do I need a biopsy”...oh here is a good one - one chart for Fibroscan results based on disease that all Drs use...not one size fits all. Ugh! And I’d like to be able to get another one each year to help monitor the health of my liver...I can get a mammogram, why can’t I do this too? Oh boy, I am so sorry - did this end up being some crazy rant? My apologies...sleep disorders are common for us too, lack of sleep can make us a bit irritable 😉😂

why can't doctors communicate?

Posted anonymously by admin with the patient's agreement

The system is broken. Such a lack of communication between providers. I’m always worried that one Dr might give a medicine to my husband that would further damage his liver (stage 4 NASH cirrhosis). Thankfully our PCP, gastroenterologist, and hepatologist seem to all be good at communicating and seem very knowledgeable of the disease.

It’s when we have to go to the ER or be admitted that’s the problem. We use a local hospital from where he is listed and it’s like every time the ER wants to run every battery of tests known to man and “re-diagnose” him. Example. He had bronchitis a few weeks ago. The PCP’s nurse practitioner saw him. First time we’d ever seen her. He had a 10 lb weight gain in about two weeks so she sent him to the ER to make sure it wasn’t ascites. The ER did two CT’s one of his lungs to rule out clots for the shortness of breath and one of the abdomen to check for ascites fluid. (He had just had an ultrasound as an outpatient 5 days earlier to check for ascites and there was none). Everything came back clear. But the ER Dr was trying to figure out the fluid gain. Finally after 8 hours in the ER I said look, we’ve dealt with this fluid gain and loss like this for two years now. ( I knew my husbands compliance with his meds and diet) he was wheezing, coughing and no other symptoms. I’ve had asthmatic bronchitis off and on my whole life. I know what it’s like. And I’m no Dr, but really? Finally the Dr said, just nothing makes sense. I spoke up and said, could he not just possibly have bronchitis? He was like well yea that is possible. Diagnosed him with bronchitis, gave him an inhaler and cough meds FINALLY. We then got to walk out thru a very crowded standing waiting room only in the height of flu season getting exposed to who knows what.

On another note, the transplant team wants to know everything but they don’t want it to help with his care it seems, more to just use the information to monitor the progression of his disease. That’s what we’ve learned anyway. Outside of them receiving info and monitoring him yearly any time we have an issue we use his local pcp or gastroenterologist. His gastroenterologist trained at his liver transplant hepatic Dr. So we’re lucky in that sense but for folks who don’t have good local Drs their care can be mismanaged.

doctors don't listen to patients

Posted anonymously with permission of the patient

 In October of last year (2017), I went to the ER with what I knew were symptoms for Hepatic Encephalopathy. When the ER doctor asked me why I was there, I told him. He patted my hand and told me, “ probably just have a uti. As you get older, they can cause confusion.” I looked him straight in the face and told him, I have cirrhosis. Test for Hepatic Encephalopathy. Thirty minutes later he came back a little paler and told me yes, I tested positive for elevated ammonia and was being admitted to the hospital. Four days and two episodes later, I was finally discharged. 

Doctors don’t listen. They know what they know and won’t change their minds. Incidentally, I did also have a uti. If I hadn’t spoken up I would have been sent home with antibiotics and orders to follow up with my PCP. 

The other thing I have to constantly watch are drugs that are prescribed. It is maddening to realize that my husband and I are constantly on watch even with the doctors we trust. Always the question is “How does that interact with the liver?


Drug interaction and liver toxicity are a serious problem for liver disease patients.  They may have been diagnosed by a gastro or hep specialist but they end up in the care of their primary care doc who rarely has training in liver disease and potential liver damage tends not to be top of mind.  Communication between specialties is very limited until a patient is so sick that they are in the care of a transplant team which increases the risk for their disease to progress.

I don't know who to trust

Posted by admin as the patient wishes to remain anonymous.

I was sick over 2 years ago and my husband asked the doctor if it was due to my fatty liver. He was told fatty liver was not going to give me pain and uncontrolled nausea. He asked if I should have another biopsy and was told no not needed. He explained I had two done 6 years prior. Was told not to worry. Fast forward this past summer, I was so ill that I couldn't even keep water down. We went to the ER and was told maybe food poisoning, I had been seen 3 times over 3 weeks for the same issues. I asked the doctor if she was sure my liver was ok ( my dad died of liver disease at 36) was told no it was ok, then I made it to my car and had a phone call from the ER doctor saying after looking back on my labs, my AST and ALT tripled in the past 3 weeks. I went to a new GI and he did a biopsy to then tell me I had full blown cirrhosis. I feel like I probably had had it and was having flares for 2 years but I was just being told not to worry. Now I really trust no one.

I don't think the doctors care if my husband dies

This patient story is posted by admin as the writer is afraid to be identified.

When my husband was first diagnosed with ESLD, his GI doctor told him that his liver would repair itself, even though an ultrasound had recently shown scarring of the liver. He prescribed him Xifaxan but his insurance wouldn't cover it because they needed preauthorization. The doctor's office would not follow through with my request to call them. His next visit, the doctor told us that he could do no more for my husband and dismissed him as a patient. He told us that his only option was to go to our local transplant hospital's ER department so that he could start off there to try to get seen by the Hepatologists at the transplant hospital. My husband got in to see them and they told him not to worry about the Xifaxan and, for the next year, he underwent rigorous testing, invasive procedures, counseling, weight loss, teeth extractions, etc...

He got cleared by every doctor that he needed to be cleared by to get on the list. However, since my husband's liver disease was caused by previous alcoholism, he was told that he must complete 3 AA meetings a week. He tried extremely hard to go faithfully. After all he had already done to be considered, why would he want to mess up his chances because of not attending meetings? But, his physical and mental deterioration, made it impossible and he was only able to attend 1 meeting a week. I spoke to the social worker with the transplant team about this concern numerous times and was told that there were no exceptions for no reasons. This ultimately led to my husband's dismissal from being placed on the list. Later, I found out that there were online meetings but was never told of these by the social worker. But the hospital not only decided not to consider him for transplant, they also decided to drop my husband as a patient as well.

After my husband regrouped from that devastating blow, he found a new GI doctor who told him that his liver was doing so well now, that he wouldn't even need to be considered for a transplant. And he was therefore approved to have his 4 hernias, that had been caused by ascites, surgically repaired. Though he was warned by the surgeon that his liver may tank given his history with ESLD, my husband proceeded with the surgery to try to improve his quality of life. He had been miserable for years because he also has chronic neck and back disorders and no doctor would prescribe any high doses of pain medication to try to make him comfortable. So he was trying to rid his body of one of the major causes of pain and discomfort by having the hernias repaired. He couldn't get any doctor to sign off on a neck or a back surgery but he did get one to sign off on doing the 4 hernia repairs.

His liver did tank after surgery and he developed Spontaneous Bacterial Peritonitis possibly because the surgeon didn't think to send my husband home with prophylactic antibiotics, even though he knew my husband's health concerns. However, he quickly bounced back again. He was doing good up until this past Christmastime when he developed his second bout of SBP and he had also gone into septic shock due to this. He was in ICU for 4 days and spent another 3 in the hospital. He was released with his WBC being higher than it was, at any point previously. He develop ascites again. He hadn't had a problem with ascites since he was first diagnosed. Back then, he was drained weekly for 8 weeks before the doctors got it under control with diet and diuretics. After the redevelopment of the ascites, he had to visit the ER again to be drained.

The next time we went back with ascites, a doctor said that he was going to try a home drainage system for my husband. We expressed that we did not want that device implanted because the doctors at the transplant hospital told him that would be a very high risk for infection and it would never be advisable. The doctor noted our concerns and told us that he would just drain him and that we would come back to the idea of the home drainage system at a later date. However, when my husband came back from the procedure, he had the home drainage system in place.

We left the hospital and a nurse came out to the House to drain him and teach me how to do it. But after day two, the tube had become clogged and was unable to drain and my husband was in extreme discomfort because of this device. When we went back to the hospital the following day, we were told that it was infected and he had cellulitis on the inside of his stomach wall and on the outside of his stomach where this device was placed. The Doctor who implanted the device said that he was given an earful from a senior doctor for ever implanting the device in the first place. He took the device out and sent us home. We ended up back in the ER a few days after and were told that he had a blood infection, a gram positive bacilli. At this time, the doctor told me that my husband's health appeared to have declined to the point that he didn't think he would live much longer and i should consider Hospice to help him enjoy his final weeks or months.

After he got a week's worth of IV antibiotics to give him the best chance possible, we left the hospital under the care of Home Hospice. His troubles only got worse after that. But that's a story for another time. My husband is still fighting for his life. But NOT ONCE has any doctor ever done a liver biopsy on my husband to evaluate his liver disease. I looked back at some of my husband's medical records from 10 years ago and it shows that even then, his liver enzymes were through the roof. But we were never talked to in any detail about this or what it meant. I believe he has always been given subpar quality of care from doctors. I wonder if they just wanted to write him off and hope that he would just pass away so they wouldn't have to deal with him.

My brother's liver was ignored by doctors, all of his doctors

This was posted by admin with permission of the writer who wishes to remain anonymous.

My brother, was diagnosed with cirrhosis in 2017. He went to ER on 6/16/17 because of leg pain. It turned out to be sepsis. Over the next few days his abdomen began to distend -- we were told that we had just never seen him lying down before (!!??), as it continued to grow, we were finally told "that's just him" "it's called a beer belly". We asked about a liver consult and we were told that we would need to do that on an outpatient basis -- earliest available appointment when i called was almost 2 months away! Anyway, looong story short. we found out in late august the diagnosis -- when we finally got to the outpatient hepatology appointment -- even though my brother was in-patient in some type of facility from 6/16 - 8/31! he lost 55 lbs, in 6 weeks before they finally gave him his first paracentesis so that he could finally eat! he used to weigh 196, he now weighs 123. it is unfortunate that he was allowed to de-condition all that time, not able to eat or walk -- it set him back so far, right from the beginning simply because they would only focus on his knee!

it took the PCP calling foul on the whole thing and sending him back thru the ER to make them deal with what they should have dealt with weeks prior. also, sadly, He had been to the doctor 3 times for an unexplained rash over the course of a few months prior to this June event with sepsis. if they had actually done any exploration, they may have realized that it was his liver BEFORE it failed. anyway, not to write a book here (because it feels as though one could!), I guess I would just trim it all down to the fact that the medical model seems to dismiss patient's complaints too casually. then the system with the "hospitalists" creates a lack of continuity and opinion when one is in the hospital (6 different doctors in 14 days! -- no wonder they could not observe the change in his abdomen).

I would complain about the lack of patient education even after diagnosis, but frankly, so many of the practitioners don't seem well informed themselves -- you can't pass on knowledge that you, yourself don't have. While specialists are a good thing -- it can get to the point that everyone is so micro-focused on their specialty that no one is watching the macro -- and sometimes things fall into the trenches that divide the specialties. ( I've likened the experience of this to the scare crow in the wizard of oz after he was attacked by the flying monkeys: first they took my knee and they threw it over there. then they took my liver and they threw it over there. then they took my brain and they threw it over there. and so on). it's not only exhausting to see all these specialists, it's risky. (I've been trying since 1/27 to get someone to claim domain over dangerously low thiamine. pcp says ask hep, hep says ask neuro, neuro says ask the pcp --- in the meantime, he's at risk. in short, I guess you look to them for guidance, and there is little guidance given. It's a lot of work just navigating the medical waters, when all you want is a lifesaver that can pull you along to safety.

When HE, hepatic encephalopathy, steals your mind

One of the most difficult challenges of advancing liver disease is when it can no longer manage the ammonia in the blood well.  Ammonia is poisonous to the brain and mimics dementia in many ways.  It can be subtle but it is a challenge for a patient and everyone around.  Some are able to keep a sense of humor for a time.  A friend gave me permission to tell her story here, anonymously of course, as an example of how a bit of ammonia can disrupt your day.

I suppose it's not a bad day when you are headed out the door with your purse and pants and shoes even had my car keys! Just forgot I needed a bra and a shirt. I inhaled a big amount of lactulose after that. Thankful I didn't go out but it's time to get a babysitter for me I think.

Most patient stories are about getting lost, driving and having accidents, or conflict with caregivers.  The great difficulty is that the personality changes are often destructive and the poor patient is a blameless victim but is the center of drama or conflict as a result of a medical problem.  Something to keep in mind when you see an apparently deranged person on the street.  

It is a failure of our system that so many liver patients are destroyed financially by this disease and end up in desperate situations and are uncared for.

Well, a story of disease that had a chuckle in it has turned a bit preachy so I'll stop but HE is one of the challenges our patients deal with that is not typically understood when mild.

All I want is to let him die in peace, why do they make it so hard?

posted anonymously by admin

I am going to be taking him to hospital in a little bit to try to get his paracentesis done. If anyone has any pull at that hospital, PLEASE try to help us get him drained today. He needs to be comfortable. He is in so much pain. 

The on-call doctor at this hospital won't call in his team after hours or on the weekend for paracentesis. Even though I called the department this afternoon, and was told otherwise. We are about to head home. They said he can try another hospital or come back Monday. 

The hospitalist called the on-call radiologist and he said that he couldn't call in his team at night or over the weekend. My husband seems to hit some kind of road block everywhere he turns. I told them that he didn't have many days left but they still wouldn't help. It's the same hospital that suggested Hospice. I feel so bad for him. I would do the procedure if I had the needle. We still have the liter bottles used for home drainage but they took out his tube when he went to hospice. If he feels like he's up to another ER trip tomorrow, I'll take him to another hospital.

The Hospice nurse got him an appointment at the hospital to be drained but the earliest appointment they had was the 14th at 2:00 but he can't wait that long so they told me to just go to the ER and Hospice will pay for this one last draining. We just got here and are waiting.

The on-call doctor at this hospital won't call in his team after hours or on the weekend for paracentesis. Even though hospice called the department this afternoon, and was told otherwise. We are about to head home. They said he can try another hospital or come back Monday.

Well, his pain doctor gave him his meds. I asked for the same dose he was on at the hospital because he was doing good once they got on top of his pain. But his doctor told him that those Fentanyl patches are very bad for his liver and he won't prescribe those. He doesn't like the patches either. His pain doctor said that unfortunately, nothing is going to be safe as far as long lasting pain relief with end stage liver disease. So, he still has nothing for long lasting pain relief, only immediate. But, I had to put another patch on him this morning because he was in so much pain and his appointment was the last one of the day. His swelling is progressing and about to the point where he will begin oozing out of his feet. The patch, plus his lack of sleep & restlessness has his hepatic encephalopathy flared up. But he is still fighting. Thank y'all for all your thoughts and prayers.

Liver bad, now liver good, not well, confused

Posted anonymously by the admin

So, more about this. This is high on my mind currently. I was diagnosed cirrhosis, at 35, no cause found, happened really fast. I was decompensated, extremely malnourished and skinny and haggard, lots of ascites and HE, portal hypertension, varices were found that were small, but no bleeding. I was diagnosed via a biopsy by a hepatologist at a liver transplant center. I was told that the biopsy 100% confirms cirrhosis, and that once you've had things like repeated ascites, your liver is damaged enough to never fully heal. So what you do then is try to live healthy and keep your own liver holding on as long as possible, get a transplant if it can't hold on. That was a year and a half ago. Now, my last appointment yesterday - the GI that I see in town says my platelet levels are great, that shouldn't happen if I have cirrhosis. That all my labs are good. That he would never believe I had cirrhosis, considers that a thing of the past, and encouraged me not to worry about it anymore. He wants to stop my lactulose and diuretics, and sodium restrictions. He said I must have just had an acute inflammation, that's resolved now. Googling it is no help. I see the hepatologist who diagnosed me soon, to see what he thinks, since it's been a year since the last visit. So, like the original question asked - where do they draw the line? Even with a biopsy, they're only taking small bits to examine? How do you know if you could totally recover, or not? Because I thought I was starting to understand liver stuff, but I'm lost right now.

How many specialists do I have to support?

Posted by admin for anonymous 

My "team" 





Neuro surgeon 

Primary Care Provider

Renal Specialist

Genetic Counselor

Mental Health Counselor 

Orthopedic Surgeon



Physical Therapist 


I'm fairly certain fewer than 2 of these doctors know my first name

I also know that they do not communicate with each other 

This is a stupidly long list of specialists

Each only addressing one issue 

My problem is getting any of them to consider the multiple symptoms and adress them collectively

For instance, could there be one thing causing all these things to happen 

Im just feeling overwhelmed and frustrated with diagnostics and labs and procedures and automated calls from clinics and pharmacists and appointments overlapping and I'm beginning to question whether all this is even necessary 

Like how does it benefit me ?

Is it going to improve my condition ?

Better my quality of life ?

Is it even worth it ? 

Spending all these days that I can manage to get up going to appointments and stressing out ? 

Maybe I should take some time to enjoy my life a little bit before I get too sick to ever enjoy anything ...

Im exhausted 

Mentally and physically

This routine is making me unhappy 

Im normally fairly cheerful but now I'm just miserable 

I hate my life 

I feel like I'm wasting it 

Every appointment brings more tests and more appointments 

Im sorry to be so complainy 

I try not to complain to my friends because Im afraid they'll stop coming around 

I just need to unload every once in a while

Thanks for allowing me a place to do it 

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