Patient stories = not personally identified but the experiences are real and posted with permission of the patient

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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" 

Oncologist

Gastroenterologist 

Neuroligist 

Urologist

Neuro surgeon 

Primary Care Provider

Renal Specialist

Genetic Counselor

Mental Health Counselor 

Orthopedic Surgeon

Cardiologist 

Neuroopthomologist 

Physical Therapist 

Nutritionist 

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 


The doctor treadmill might kill me

The patient in this story didn't wish to be identified so we have posted it anonymously.

You don't really experience how excruciatingly frustrating the medical system is in this country until you have a complicated medical problem. Or several. So that each doctor works on only one piece of you - even though all those pieces are connected. They don't communicate well. The hoops you jump through are exhausting.

My pain specialist wants me to go back to the neurologist for an evaluation, my left side is getting weaker and I have an assortment of odd issues. I can't go back to the neurologist until I get a new referral. I can't get a referral unless I actually make an appointment with my primary care to talk about it. Then he'll send a referral to the neurologist who will then call me for an appointment.

Did you get tired reading that? Because that's just one of literally a dozen issues I'm trying to do something about.

I remember when when I first got sick, I'd been hospitalized 4 times, very sick, getting worse, no answers. So they sent me to mental health, because at that point my husband had left me, I was broke, and sick as all heck. So they figured I was just a girl, just stressed, and needed therapy. That gap, where I stopped going to doctors because they didn't want to hear it, where all the problems building were escalating, where I went weekly to a crazy lady therapist who spent most of my sessions talking about what a jerk her ex husband was - that's when I went downhill fast. Because I listened to the doctors who were dismissive of me, instead of listening to me.

Where's House when you need him? Because everything right now is bullshit and I'm frustrated and I feel awful.


warning she is in a bad mood

I'm having a moment (or a day) of self pity and I just need to unload a bit. I'm pretty skilled at pretending to be OK. But not today

Between the ascites, edema and atrophy, every time I look in the mirror I am so grossed out by what I see. I'll be alone for the rest of my life. I can't even be touched without wincing in pain. I have had this drug resistant UTI for 2 or more years, I keep Lactulose in the house for fear of having an accident. Almost all the things on my list of reasons to live have been eliminated by my failing health or by the medications to treat it.

I'm tired beyond anything someone who has never experienced the type of fatigue having MS and a barely functioning liver causes. I feel like depression is going to get to me any minute and because I've been there before I am terrified and feel helpless just laying here waiting for it.

I'm finding it almost impossible to muster even a single happy thought. I'm not the type to feel sorry for myself but the recent Alpha-1 antitrypsin deficiency diagnosis and the the thought of having passed this fate along to my kids is so hard to accept, even worse than being told I'm terminal....the thought of my kids going thru what I'm dealing with health wise is just too much for me today.

Knowing I'll never have another relationship is also getting to me. I spent a lifetime trying to fall in love and live happily ever after and now I feel cheated and sad and I just want to sleep for a few months. I hope I can snap out of this 'poor me' shit. It isn't like me and it it makes me hate myself even more. I'll shut up now and go back to sleep. Hopefully I'll wake up in a better state of mind — feeling fantastic.


Stories from liver land - another hospital visit

Trying to be in a good mood, but feeling like 💩💩💩

They're checking my gizzards. I've had pain in my side for a week. Mucho bad pain.

Hardly keeping anything down. Even on a mostly liquid diet. Extra light headed, dizzy, and the other day I just random fell asleep in the tall bar chair in the kitchen, and then fell out, hit the other chair and the tile floor, and bruised my face.

So I held off on ER, and went to my PCP last Friday. My primary doctor said, "hm, this sounds bad, you should call a doctor for this." He's THAT good. He wouldn't even do labs, he said go to my GI, see what labs he wants to draw, he didn't know what to do. Smart. 😡 (I NEVER use mad faces. That's how you know I'm legit annoyed here.)

But of course, my GI doctor is out of town for two weeks. My hep is 3 hours away and needs a new referral, I'm still waiting on that. So, the nurse for my GI doctor said to just get my butt to the ER.

Here I be. #hospitalhairdontcare 💛 Fingers freaking crossed they find something that's an easy fix, and that I don't have to be admitted. Meanwhile, they gave me fluids, dilaudid, and zofram, and I gave them loads of blood and my pee. Fair trade, right?

But no popsicles this time. Seriously, I should get a punch card here. Frequent flier miles. Something.


They think I'm an alcoholic, not fair

I went into surgery to have my gallbladder removed. Once the Dr was in he didn't like the way my liver was looking and did a biopsy. Turns out I have NASH stage 4 grade 2 (I have no idea what grade 2 means) cirrhosis.
I'm scared......
I am a type 2 diabetic and I was never great with treating my diabetes so I'm sure that had a lot to do with it. Two days after my surgery I was back in the hospital due to a biliary leak. They placed a stent in to stop the leak and it will be removed soon. I've started to have a lot of nausea and I believe it is from liver spasms on a continuing basis.  My legs have blown up to twice normal with edema and I can barely walk.  They say it is all because I am fat.  They say there is nothing they can do but maybe I should lose some weight. Diets have never worked for me.  Maybe being sick will make me lose weight.  When I tell people I have cirrhosis they think I’m an alcoholic which makes me mad as I hardly touch alcohol but they rarely visit anymore and I’m lonely.


My husband bled to death in my arms

My husband was 55, we were eating popcorn one night and he suddenly started bleeding in his throat. He went to the toilet and vomited but it just kept coming. He tried to swallow it but it kept coming back up, it wouldn't stop. He became frantic and ran around the house searching for some solution. I called 911 but we were 40 minutes from any medical help and that was too late. In the end the only thing I could do was to hold his head while he died in my arms. We were covered in blood. The doctor said that he had an esophageal varices which burst as a result of cirrhosis. We had no idea. We thought he was healthy. The house looked like a war zone. I had to take all the carpets out and replace them. In the end I couldn't stay there. I don't know why he didn't know he was sick he always went to the doctor for check-ups when he was supposed to. I am so sad.


Cirrhosis death - ghastly way to die

In the early 90’s my wife was diagnosed with diabetes and told she also had a fatty liver.  They said the fatty liver was common and mostly benign but it would be good to lose a little weight.  She had a hard time controlling her diabetes and a few years later her legs got big so they gave her water pills.  After a while she got an irregular heartbeat so she got a pill for that and her blood pressure was getting quite high so she got a pill for that.  Her left foot got very painful from the diabetes and we were afraid she might lose it but some meds helped that but walking was hard.  In 2005 she started bleeding from her throat.  The EMT’s took her straight to ICU and 4 units of blood saved her but they said she could easily have died.  They said she had esophageal varices and wondered why they hadn’t been banded.  We had no idea as no one ever told us.  More testing and she has NASH and cirrhosis.  They say stage 4 but that didn’t mean much to us.  Over the next year she had 7 varices banded and had a lot of pain,  She also developed ascites and they drew 7 liters of fluid from her belly.  In some ways this was the easy time.  Her liver got worse and they put in a TIPS shunt to ease pressure on her liver but that led to ammonia in her blood and hepatic encephalopathy.  It made her a crazy, mean, angry person.  Not at all the woman I’d loved all these years.  They gave her lactulose to control it and it did help some but it gave her frequent diarrhea.  It got bad from there. One day near our anniversary she was pretty good and wanted to go out and celebrate our marriage.  We went to her favorite place, she managed with a walker.  It was a tender moment but she became distressed and had to leave.  She had an attack of uncontrollable diarrhea. She wore an adult diaper but it failed and she left a trail of excrement on the floor as she tried to get out. She never left the house again except by ambulance.  She lasted another year but it was a time of great pain and she spent her last two months in ICU with tubes everywhere.  No one should have to go through that.


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