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

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Laura Zoulek's story, a long journey

I have been Type II Diabetic for about 20 years.  I am 55 years old now.  I have had terrible struggles with keeping it under control as I have always had a food addiction.

Also, at age 42, I had triple bypass heart surgery.  I blame that on hereditary and on uncontrolled diabetes. My other health issues include thyroid disease, celiac disease, and now cirrhosis of the liver.  Mom had cirrhosis and was not a drinker.  She did not take care of herself and passed from it at age 79.  I believe she wanted to die.

Many, many years ago, my doctor informed me that I had a fatty liver.  He did not seem concerned at all so I wasn't either.

Time moved on to the present.  In February of 2017, I started feeling tired all of the time.  All I wanted to do was sleep.  I thought it was because we were moving into a brand new home and it was so much work.  Then, out of nowhere, my ankles swelled up terribly with edema.  I went to my regular PCP, and she told me it was because my blood sugar was high.  She said when I got my blood sugar down, it would go away.  The next day, it was worse.  At that point, I could barely walk.  I knew something was wrong.  I decided to call my cardiologist.  His nurse called me back immediately and told me to go to the emergency.

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Silent Killer: Battling a liver disease that threatens 1/3 of Americans - Wayne's story

Back in 2010, a surgeon went in to remove my gallbladder and came out with bad news: He was sure I had stage 4 liver disease.

This came as a shock. I didn't drink much. I had no symptoms of liver disease. In fact, I had hardly ever been sick.

In the weeks and months to pass, doctors performed blood tests, genetic tests and two liver biopsies, which provided conflicting information. One suggested my liver was healthy. Another said my liver was severely scarred. The blood work indicated that nothing was wrong, but then a hematologist diagnosed me as hemochromatosis — too much iron in my blood.

For the next couple of years, every time I went to the doctor I'd take my picture and I'd ask about my liver. I didn't know it then, but I didn't have hemochromatosis. I was, however, very sick — suffering from one of the most common diseases in the U.S.

It's an illness that is growing fast, strongly linked to the rise of the obesity epidemic. The medical term is nonalcoholic fatty liver disease (NAFLD). Doctors sometimes call it the silent killer.

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We want treatment but they can't happen without clinical trials

I have cirrhosis and all of the research being done to find treatments makes me happy.   However, the dirty secret is that there aren't enough clinical trial participants to do the studies required to bring them to us. If you want to try not to die of liver failure one thing you should consider is participating in trials.

We also need to educate people who have a silent liver disease. A good way to do that is to share your story.  Put your story in the pool of people willing to help by telling personal stories by clicking on this link.

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Rick Yeager story

Im 2011 my liver enzymes and iron levels were three times higher than normal. I was seen by a gastroenterologist in Southaven, MS for two years. Every six months he kept say he was going to do a liver biopsy. After two years nothing was accomplished. I had no energy an no one could find an answer. I stopped going to the gastric doctor after two and a half years. I kept feeling horrible no energy and begin having dizzy spells. I had to go to the emergency room and the doctor said my platelets were low but it’s ok. About a month later I decided to go online and chart my labs. I noticed my platelets has been up and down and dropping lower over the last few years. I printed the charts out and made an appointment with my pcp to ask about my labs and why my platelets are low as well as other labs high and low. She looked over my chart and spoke with another doctor. She came in and said both didn’t like my labs results. She decided to call the West Cancer Clinic and made me an appointment and told me she is going to be surprised at what they find.

A week or so later I went to my appointment at the West Cancer Clinic. The hematologist took labs and ran test and came back into the room later stating he doesn’t think I have luekemia but beloved it is my liver. He called and made an appointment at a gastroenterologist the next day. I went for my visit and he made arrangements for an EGD and colonoscopy the next morning. The test showed esophageal varacies and had to remove three benign polyps from my colon. He stated he was making me an appointment to have a liver biopsy because people with esophageal varacies usually have Cirrohsis of liver. The doctor called me later the same day and stated he had a biopsy scheduled for the following morning.


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I was almost misdiagnosed to death

A personal note about this story. Shelley Walker Myers is a heroine, and her journey through life is both cautionary and inspirational. As patient advocates, we deal with thousands of people who face the future in many different ways, but liver disease is hard because it is not managed well by the medical profession or society in a larger sense. Patients often fight battles that in hindsight they should not have had to and we so admire the human spirit that we often see coping with very difficult life journeys.


My story is long and complicated. In 2009 I went in for a gall bladder surgery and woke up to a team of liver doctors telling me in fact nothing was wrong with my gall bladder but I actually had end stage cirrhosis of the liver and was terminally ill! My meld at this time was 28! It started with my first doctor telling me until I lost the weight I had gained, not realizing why I was so sick, I could not meet with a transplant team! Long story short I lost enough to meet with them and the doctor told me in 2012 “Go home and live out the next five years the best you can”!  I was told fatty liver was the cause of my disease.

When I was sent home to die by my first doctor I gave up on myself for awhile and stopped taking all of my meds even the mental health meds I am on for bipolar disorder! I just didn’t want to prolong the inevitable of dying! Well, HE and its fogginess and my bipolar/depression took over my life and all rationality was out the door! I was around the wrong type of people and ended up facing jail. That’s when I woke up and realized my life was still worth fighting for! Looking back now I feel like it was God stepping in and telling me He was not done with me yet!

My first doctor did nothing to truly help me! I had no idea about my disease or the things I needed to know! After talking to another patient, who I didn't even know, who was also going through it I realized I needed to do the research myself!

 

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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 dogs...it’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. 😂

 

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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, “no...you 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?

A NOTE FROM ADMIN

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.

 

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