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

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How many specialists do I have to support?

Posted by admin for anonymous 

My "team" 

Oncologist, Gastroenterologist, Neurologist, Urologist, Neuro surgeon, Primary Care Provider, Renal Specialist, Genetic Counselor, Mental Health Counselor, Orthopedic Surgeon, Cardiologist, Neuroopthamologist, 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?

I'm 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 ...

I'm exhausted Mentally and physically This routine is making me unhappy 

I'm 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, I'm sorry to be so complainy 

I try not to complain to my friends because I'm 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.


NASH, no treatment, who knew? Now what?

When diagnosed with NASH, I read everything I could about the fibrosis and cirrhosis. As good as the doctors are, they don't know everything about how these diseases affect each person. I have feelings of dread, loneliness, uncertainty as my doctors can't even agree as to what I have. One hepatologist thinks it is cirrhosis and the other thinks that it is a rare one called focal nodular regenerative hyperplasia. It doesn’t matter, they both have told me that there is nothing that they can do for me. So, here I sit wondering if and when it will get worse. I talk to some who actually are hoping that their liver gets bad enough so that they qualify for a transplant because sometimes it is easier to think about that than the uncertainty of being ill for who knows how many years. They say there is nothing they can do for me except monitor my symptoms every six months and treat  the symptoms. It is a little disheartening to hear from the ALF that they don't have much information on your disease and that they recommend going to the NIH; which doesn't have much either. Sometimes I think of suicide.


Doctors don't agree - I am so nervous

I am always in a panic or fearful. My primary doc is earnest but not very helpful. I’ve seen one seemingly incompetent gastro & another gastro who is much more knowledgeable but says he can’t help me. I have an appointment with a hepatologist but am scared & hopeful at the same time. Hoping the hepatologist will calm some of my fears giving me hope & scared he will only increase them with bad news for me. My liver biopsy says severe fibrosis at least stage 3. What does at least stage 3 on a pathology report indicate? I have no idea what this means. Could this mean it was inconclusive on whether I have fibrosis or cirrhosis? My gastro feels I could have some cirrhosis since I have very small grade 1 esophageal varices. This all started after Colonoscopy & EGD when gastro was surprised to find the varices. I have not been ill at all. I am confused about all this. My gastro just tells me eat a balanced diet no processed food. That is about it. Just wondering how long I have before I get really sick or can I just remain at Stage 3 indefinitely. Kind of nervous about hepatologist take on this but primary care doc always said no worry you just have fatty liver. I sit around now waiting to get really sick & get HE and lose my job, and who will care for me. I am so nervous.


I wonder how people become cruel

I have had a very rough time dealing with my liver disease. I feel sick taking my medications and I still feel sick not taking my medications. I’m on all the standard liver treatments and medications. I also have panic attacks and I am suffering again from depression. I get medical care regularly and will continue with therapy and psych medications to help me cope with this horrendous liver disease process. I have been living in the ER and cancer center for my blood, and doctors appoints. But the worst thing that has happened to me was at a recent graduation party, a family member, commented while others were asking me how I was doing, "well you did it to yourself".  “I don't feel sorry for you and many more people feel like me". To those who are suffering from Stage 4 decompensated liver disease either caused by NASH or alcoholism this seems to be the attitude of many people. Most people don't comment. But she did. I have NASH..... yes I have been overweight for most of my life. Infancy, toddler, childhood, my 20, 30, 40, etc. So yes, I did it myself. But, I researched and only 25% of the worlds overweight people get NASH. So there has to be other mechanisms here going on. I have been a diabetic since childhood, but the testing standards were different then. I am heartbroken.



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