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

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Terri Monclova Milton

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The picture was taken June 2018. My hubby and I are about to be 55. It’s hard to believe that in the past 11 months I was diagnosed with cirrhosis, diagnosed with HCC, had 3 surgeries and about to have a 4th, been admitted 4 times to hospital for non surgical reasons and in the ER 17 times. I’ve lost count of the number of CT scans, MRIs, ultrasounds, and other diagnostic Radiology tools. I don’t remember all my doctors names or even what their specialty is. I’ve gone from not being able to walk to the toilet from my bed to hiking to see a waterfall. I’m alive.

When I was first diagnosed, my doctor told me his goal was to get me to die of an old age other than Cirrhosis complications. I was severely decompensated, leaking 2-3 liters a day of ascites from a surgical incision, and didn’t have a clue. I was scared to death because of all the things I had found on Dr Google. I was ready to give up.

One of the things he really emphasized was to not pay attention to any statistics. There were things I needed to do to help my body heal...but he couldn’t do it without me really jumping in and owning what needed to happen. I had to cut my sodium intake to less than 2000mgs per day. I needed to cut out processed foods, focus on lean protein and plant based protein. Even though I don’t drink, no celebration drinks for anything. I needed to increase my activity in whatever way I could...even if it was lifting a soup can 10 times with each hand. He also asked me to listen to what he said and not be afraid to ask questions.

It’s been a year since diagnosis. Yes, there are still things I have to deal with every day...some days more than others. And this disease is never far from my mind. Every thing I do or don’t do impacts it. I do constantly have a running calendar in my head of my doctors appointments and test dates. Due to being diagnosed with HCC in May and had an Ablation last week, everything is slightly increased in speed. I see my Hepatologist every three months and have blood work and CT scans every three months. Every day my breakfast appetizer is a handful of pills that keep the symptoms at bay.

It doesn’t matter what the cause of your Cirrhosis is.  Mine is from NASH...but it could also be left over damage from being a hardheaded college kid who liked to party too much 35 years ago...or from being a teenager who liked “speed” a bit too much to get through what life had dealt me. We all have a past. Sometimes it’s yesterday. Sometimes it’s 50 years ago. Our past doesn’t define us.

You matter. Your story matters...even if you’re not ready to share it...it’s still important.

My story isn’t done yet. It’s being written everyday. Someday, not soon, there will be a finishing period to my story. But not yet. I’m going to live! How about you?


Micki wasn't told of her liver disease, why? Doc said no need

Posted with Micki's permission:

I think the doctors are just really learning about this beast!! I had a procedure and my liver was biopsied (unbeknownst to me- but luckily records included info) and when I started getting sick- my docs were able to investigate my history and access my records and saw what the problem was.... I was not once notified of the biopsy or results. I went back to the dr that performed it to ask why he failed to notify me- he said there was no reason to bc there is no cure!! I could’ve turned things around- this is going to be one of the fastest growing medical issues over the next 10 years!! These docs better get in the know!!!


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.

VOLUNTEER TO SPEAK WITH TV PRODUCERS ABOUT AN INTERVIEW


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.



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