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

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Parth00028k


Parth00028k


Monique, you will be fine

12 years ago I was diagnosed with NAFLD. When I asked what does that mean for me the doctor replied (and I quote), "Lose weight and you will be fine". Well, here I am 12 years later and I am NOT fine. I AM SICK.

After many years of admissions, thousands upon thousand of dollars in medical bills, hundreds and hundreds of tests. I am not fine. I am sick. Lose weight and I will be fine????? WRONG! I have followed all of the instructions and still I am sick. My first diagnosis was NAFLD, then I was diagnosed with gastritis, then acid reflux, then gastroparesis, then ulcers. Then in 2018 I was hospitalized in June with "gastritis". In July 2018, I was once again hospitalized with gastritis. After 5 years of telling my husband they are missing something, and the last hospitalization they were talking about discharging me home; I told my husband, when they discharge me take me Vidant or Duke because there is something extremely wrong.

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Fair warning this was a mild coronavirus NOT COVID-19

I was a Very Healthy 26 year old when A Respiratory Virus robbed me of every freedom' I had. It took the very life out of me. No, I couldn't breathe. Or walk. Or talk. Or see my son. In fact, my family was told they'd never see me again, say your goodbyes, she isn't going to make it. BAM. I was dead.

I never thought at 26, with a 4 year old son, I would have my funeral being planned. The vivid Coma Hallucinations haunt. I didn't do anything to cause this. Im here for a reason, though.

The only place out of ordinary I had been was to A Family get together for Granny's 90th birthday .. some folks came in from out of town, and my sons school- to tour the school for pre-K. 31 days in a Coma and on a Artificial Lung Machine and Extended form of life Support with Cardiac (heart) bypass.

I laid lifeless for weeks while a Machine (a room full) worked to pump the blood through my body and re-oxygenate it, because no function was left in my own body to be able to do that. I had a complete lung failure which lead to heart failure and now, Cirrhosis, TBI, Apnea, and much, much more. In a matter of a day or 2, I developed a severe case of ARDS, became septic, went into shock. Was clinically dead for x amount of time. Caused a lot of damage, permanent.

I promise you... THIS CAN HAPPEN TO YOU.
I am a smart young lady. At the time, I worked at a residential care facility (private) My job was to take care of the sick and elderly.

Then I became one, myself.

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A miracle through holistic healing

I know my story will sound far fetched. It's something that I don't share with everyone because it's totally away from the mainstream medical thought and treatment protocols, but it is a true story nevertheless and I am a living testimony to what happened.

I was already working in the holistic field as a massage therapist when I was diagnosed with stage 2 liver cirrhosis back in 2004. I was not in the best of health as I gained weight and not really taking care of myself. By chance, a routine blood test had found that I had high levels of iron in my blood. After biopsy and testing, the gastro discovered that  Hep B that caused damage to the liver, which did produce fatty liver from the constant attacks. The prognosis was like all, cannot reverse cirrhosis except delay the inevitable. Doctor prescribed a Hep B suppressor med, blood letting for the high iron, and to be monitored every 6 months for progress of the disease.

Although the prognosis seemed grim. At this time, which was about a year in, I had to make a choice. The doc told me that I would have to take my Hep B meds for life. I reasoned that the meds may be suppressing the hepatitis, but will be filtered out through the liver. So that meant that cirrhosis may become worse or hastened, among other possible side effects. During my career, I read about people miraculously healed of their diseases by the use of herbs, diet, prayer, and meditation, and although I was a believer, never had to put it in practice. Being at a crossroads of delaying the inevitable, I decided to go the holistic route. Someone I followed very closely named Edgar Cayce was instrumental in this journey and followed the advice as best as I could.

I changed my diet to mostly vegetarian slash vegan to decrease the strain in the liver but also provide the neccessary rebuilding nutrients needed, I took herbs that encouraged liver health and elimination of toxins, exercise, I used massage and osteopathy to help the bodies circulation, and lots of prayer and meditation.

What happened? The first year I decided to take the meds and did not apply it just yet. I reasoned that I needed the speed of medical treatments to get me out of the woods first before going down this path. After 1 year I went on it and didn't tell my doc I stopped taking the meds. He found out a year and a half later. He said, "Oh, looks like the drugs are working, Hep B numbers are good". To which I said "Doc, I stopped taking the meds a year and a half ago", to which he said "Oh, I guess you didn't need them". Fast forward to 2016 when doc decided to order a fibroscan as it has been awhile. During the followup he went over the bloods and it still showed minimal activity of Hep B and mild fatty liver, however, something else shocked him. The results from the fibroscan showed a normal liver! No sign of cirrhosis whatsoever. This shocked him and the only thing he could say was "I thought you would be in stage 3 by now!"

I know this all sounds like fantasy but I do swear it is a true story. I had to walk this alone and it was hard. No support group and the fear of going away from conventional medical thinking. Also, there was a fear of me dying. But it is my life, and these things are what made sense to me. But I came out on the other side and am a living medical anomaly.I can only thank God for that. May God Bless you on your journey.


A cautionary tale

A message from Terri, a liver disease warrior.

I have some things on my mind. Pretty big stuff because it involves you guys. It has to do with the liver disease I have. You see, had I stopped it when I first heard I had fatty liver in 1998 I wouldn’t have cirrhosis today. Yes, the doctor told me it wasn’t a big deal and not to worry about it. Turns out it was a big deal. The thing that bothers me is that doctors are still saying the same things. The EXACT same thing. How do I know that? I’m an admin for a support group for liver disease with over 9000 members.

So let me tell you some stuff. I have NASH Cirrhosis. NASH stands for Nonalcoholic Steatohepatitis.

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Brian's story

Hi my name is Brian I'm 42 right now . When I was 40 I was diagnosed with liver disease cirrhosis. I started drinking alcohol in highschool and in my 20s got a lot worse as time went on. The day after i got out of the hospital, which they took out 3 liters of fluid out of my stomach ,I stop drinking and smoking cigarettes . I started taking the water pills and low sodium diet and just   Tee spoon of salt here and there . On my 6 month checkup , ultrasound came up cirrhosis, but blood results came out better then before and I was feeling better and no ascites and vein was ok . After about 8 months I started to get stronger and energy was getting better so I got a membership at the gym and started lifting weights and running and stair master . My second visit it's been 1 year and 2 months. All blood results came out normal and no cancer . Ultrasound showed evidence of fatty liver and not cirrhosis. And now I don't take water pills and feel great again and healthy. My advise to anyone is to stay positive, believe in yourself, stop drinking immediately , and all bad habits, and once you start feeling better , exercise, diet and is huge to become better . Anything is possible if you believe In yourself , please never give up . You can do it don't listen to all the negativity the Internet says .  I hope I help someone out there .Soon I will be getting my personal trainer certificate, and professional nutrition certificate, and want to help people with liver disease..


Kimberly Martinez

A Twist of Fate:

My older brother Paul was put on dialysis in 2012.  He's my older brother and always looked after me and my 2 younger brothers when we were growing up.

  When he was told he needed a kidney transplant.  I offered to be his living donor.    So Early May 2013,  I got myself ready to be in the best health I could be to give him a good kidney.  I needed to lose weight. I joined the YMCA where I swam laps.   I actually got up to 1 mile a day 6 days a week.  I ate healthy meals I joined a weekly Zumba class.  I was making good progress and feeling good.  Just 7 months later, December 2013 I had lost 96 pounds and I could see my goal in sight.  

It was 2 days before Christmas, I woke up with the flu.  Paul had dialysis that day and wanted to stay home to take care of me.  I talked him into going to dialysis that day and promised I would take care of myself.  

I stayed in bed all day just feeling lousy.  Right before Paul came home to check on me I took a shower trying to feel better.  About 5 minutes after he came home I got nauseous and reached for a styrofoam cup, a large 32oz cup   I threw up blood. Enough blood to fill that cup just about to the brim.  I was in shock and so was Paul.  Poor Paul ended up taking me to the ER that night.  That's the night I was told I couldn't be a kidney donor for my brother because I had end stage liver disease and I needed a liver transplant.  I couldn't believe it, I wasn't a drinker or smoker or did any drugs or anything that I knew of that would give me liver disease.  I found out later it was my weight that damaged my liver.  

I eventually was put on the waiting list for a liver transplant in March 2015, and I was blessed enough to receive my second chance February 11th, 2016.  

A generous person in Texas gave me the chance to live.  I thank her and her family for today and everyday


Damon Tipton as told by his wife Christy

Damon and I met in 1989 and fell in love instantly. We were both young teenagers so we went our separate ways but got together, exclusively in 1996. He was my soulmate. We did everything together. We had two kids together. He was diagnosed with end stage liver disease in 2015. When he was first diagnosed, I spent countless hours researching everything that I could find out that would help me take care of him better. I found some wonderful liver disease support groups during this time that would turn out to be so very beneficial.

The cause of Damon’s liver disease was alcoholic cirrhosis. Damon had quit drinking about a week before his diagnosis. He had tried to quit in the months prior to by going to different inpatient rehab facilities but none of them were the right fit for him. He finally found one that worked and after he completed a 40 day inpatient program, he came home. He was excited about slowing the progression of the disease by continuing to remain sober.

He saw his first gastroenterologist about his liver disease in October 2015. This doctor told him that since he had stopped drinking then the liver would most likely repair itself. I inquired about the ultrasound done in August and the fact that it showed scarring of the liver. The doctor assured me that the liver is the only organ in the body that has the unique ability to repair itself and can still function when the majority of it is damaged. He made a six month follow up appointment. When Damon went back to see him, he had started to develop ascites and cellulitis. At this time, his current gastroenterologist told Damon that his liver disease was in the end stage, which is what I questioned during our first office visit, but that there was nothing else that this doctor could do for him. He told him to go immediately to our state’s only transplant hospital and go to the ER and request to see the transplant doctor. We did this and they admitted Damon for ascites and cellulitis and said they would set him up to be evaluated for transplant in the months to come.

He spent the next phase, going through all the testing. He passed all the tests, had all the doctors sign off, lost weight, and even had teeth extracted. However, he could not physically handle going to three AA meetings a week. He went to one a week. He was physically deteriorating and had frequent bouts with hepatic encephalopathy. At this stage in his disease, he was unable to get the doctor to prescribe him medication for adequate pain relief and his insurance wouldn’t cover the prescription for Xifaxan. I begged the social worker on the transplant team to please work with him, on more than one occasion. His last drink was August 3rd, 2015 and he started the pre-transplant evaluation process in September of 2016. I asked the social worker on the transplant team, if the hospital would do blood or urine tests but she wouldn’t budge. So, after all that time, money, and energy had been placed into getting Damon evaluated for the list, he received a letter in the mail stating that he was no longer being considered to be placed on the transplant list at their hospital but was free to try another transplant hospital. He was upset but just saw it as another setback.

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Terri Monclova Milton

terri-milton.jpg

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?



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