How old are you? I am 21, and I am already obsessed with the idea of owning land. My colleague says that it’s a good thing that I have started planning for it from
What does liver failure feel like?
NOTE: This post is very long.
It depends on which stage of liver failure. Initially, the first stage has no obvious symptoms or pain. When i was diagnosed with liver failure, i was surprised. I went to the hospital due to minor abdominal pain. I didn’t suspect it was related to my liver. But i was wrong.
The real pain began when i was diagnosed with liver cirrhosis. It was sudden and intense. After 4 straight days of binge drinking and smoking meth, I woke up and immediately noticed my stomach was as swollen as an 8 month pregnant woman. I lifted the bed sheets and saw a mixture of blood and pus running down my legs.
I immediately went to the restroom to clean up the mess. After that, i urinated. The color was rusty looking-a mixture of orange and dark brown. I looked in the mirror and noticed that the whites of my eyes and the color of my skin was yellow. Later, I found out that this condition is known as jaundice.
I panicked. I knew i had a major medical problem.
I immediately rushed to the ER. The nurses performed blood work and shortly after, the technicians performed a couple of tests. I think an MRI and an ultrasound, but not sure. Soon after, the doctor sat beside me and informed me that i had liver cirrhosis. Next, he injected a numbing agent in my stomach, inserted a thin plastic tube and drained about 9 litres of fluid from my abdomen. After the “tap”, he prescribed some meds, then sent me home.
Little did i know the horror i would experience during the next 3 years.
Unless one has experienced it, no medical professional can tell you what it feels like to have liver cirrhosis. It’s a relentless, non-stop, nasty painful disease with no mercy whatsoever! Soon after i arrived home from the ER, i had a very sharp pain running down my lower back and upper thigh, similar to a sciatic nerve, except the pain was more intense.
The decades of alcohol and drug abuse caught up with me. The pain was so severe, i spent the next three years in bed, 22–24 hours a day. I tried walking a few times, but my knees buckled and i fell each time.
As time passed, my condition worsened. For three years straight I suffered the following symptoms and problems: nausea, vomiting, flu-like sickness, anemia, insomnia, swollen feet and ankles, two hernias, gallstones, whole body itching, a metallic taste in my mouth whenever i ate, jaundice, sluggishness, bruises on my arms and legs, craters in my cheek bones (see my pic below), excruciating abdominal pain, severe weight loss, swollen belly, diarrhea, paranoia, hallucinations, memory loss, muscle atrophy, extreme fatigue, sharp “stabbing-like” pains all over my body, and massive confusion. I never imagined the existence of a disease with so many symptoms and so much pain.
Imagine having all these symptoms for three years straight. Imagine having only one of these symptoms, such as the flu for 3 years straight. After a few months, i could no longer stand the pain. I felt like dying. However, there was nothing the doctors nor anyone else could do. If a liver is more than 75% damaged, the damage is irreversible and irreparable. There’s no point of return. A liver transplant is the only option.
In 1989 i was also diagnosed with hepatitis C from sharing needles while slamming speedballs.
After being diagnosed with cirrhosis, I recall that i could never feel warm. I was anemic. Even in summertime i would wear a tee shirt, a long sleeved shirt, 2 sweaters, a jacket and my famous blue blanket. I was just like Linus, I always had it with me. However, no matter how much covering i had, i would still feel frozen. The chill was deep in my bones and wouldn’t go away.
There were many instances when i didn’t know my name, who i was, where i was, what year it was, etc. Every time i blacked out, EMT always asked me what year it was and who is the current president of the US. I usually replied something like “1948. Bill Clinton.”
There was, however, one comedic event while hallucinating. At home, I was in the restroom for a very long time. When i came out, my mother asked me who the heck i was talking to. I paused, then replied “Calvin.” She said “Calvin who?” I replied “Calvin Klein.”
When i was on the toilet, I was staring at my underwear, which were down to my ankles. The name Calvin Klein was embroidered at the top. Apparently, i erroneously thought my underwear was the famous designer in the flesh! Don’t ask me the content of “our” conversation. I have no idea.
During my three year waiting period for a new liver, the doctors refused to give me morphine or a substitute pain reliever for two reasons: one, my liver was so damaged, they were concerned i may die since strong pain meds such as morphine damages the liver. My liver was standing on it’s last leg. Two, i was a drug addict. No need for further explanation. I spent three years with only small doses of tylenol. However, it did nothing to alleviate the pain.
In late 2013, my kidneys started to fail. For about 21 months, I couldn’t urinate. My kidneys failed to extract urine from my body. All the fluids i drank remained in my abdomen. This condition is known as ascites. It felt so weird to stop doing something that felt so natural for such an extensive period.
Just like clockwork, every 5–6 days my stomach would start to balloon. As a result, my abdominal organs would feel suffocated from the weight of the fluid. I suffered a constant shortness of breath. I would keep my mouth wide open, gasping for air until my jaws ached. I felt like a fish out of water. Worse, i would experience massive abdominal pain. It felt like someone was twisting my organs and intestines tightly and wouldn’t let go. It felt gut-wrenching. I would sometimes scream in pain.
Also, there was a constant pain from the imaginary “needles.” Every time my abdomen would swell, it felt like a thousand needles penetrated across my chest, just below my breast area. I could feel them going in and out, in and out. This pain was a side effect from built-up fluid lingering in my abdomen. Every 7–9 days i would have to go to the hospital and get my belly drained to alleviate the pain and reduce the chance of infection.
Once, i was stuck in my bed for six days. At the time, i was living in the Philippines when i was diagnosed with cirrhosis. I lived alone in an apartment. There were no nearby neighbors. I was so weak that i couldn’t get out of bed. I kept screaming, but nobody could hear me.
After six days, the landlord forced his way in. He saw me and immediately called an ambulance. I was dehydrated and stayed in the hospital 4 days and given fluids.
My most painful experience was after my liver and kidney transplant. The nurses had to remove blood clots from my penis. Since my surgery took about 17 hours, i ended up with blood clots settling at the tip of my penis. Every 2 hours around the clock, for the next 14 days, the nurses used a machine with a plastic tube the diameter of a drinking straw and shoved it inside my penis and sucked out the blood clots. The pain was excruciating.
I had no idea how sensitive the inside of a penis is. Extracting the blood clots felt like ripping off a finger nail and stabbing the top of the skin with a sharp object repeatedly. Prior to the procedure, I stuck a washcloth in my mouth and bit down on the cloth so hard, I punctured holes in the towels with my teeth.
The scariest events were the hallucinations. These were worse than nightmares. Unlike a nightmare, you are awake during a hallucination. In your mind, it is real, it doesn’t just feel real.
Once when i was in the hospital, i thought all the walls were infested with snakes. I could hear the constant hissing sound. I knew I had to get rid of them. I didn’t want them to swarm me. So, I grabbed my walker, and strolled down to the cafeteria. Next, i went to the kitchen, grabbed a butcher knife and began cutting out the walls. Pieces of drywall were everywhere. People were staring at me as though i had lost my mind! Security rushed me, tackled me and i ended up in restraints- one of 57 times during a three year period.
Another time, i believed my sitting nurse was an alien and he was trying to kidnap me and take me to another planet. This guy was intimidating. He was about 6′3′’, 270 lbs. I saw a syringe filled with what i believed to be poison in his left hand. I could actually hear the drops of liquid splattering on the tile floor.
My “captive” had an identical twin brother standing about 5 feet to his left. His twin was also holding a poison-filled syringe. They somehow managed to communicate to each other not through words, but via thoughts! It was horrifying. They both had a stern look on their face. They constantly glanced at each other, then glared back at me. I could sense they were discussing which one was going to put me under so they could kidnap me. It was so bizarre.
I screamed and kicked so violently, security and staff had to restrain me… for the umteenth time. Without fail, the next day i awoke, strapped down with a rubber ball in my mouth, not knowing what the heck happened.
Another time, i believed one of my male nurses was posing as a DEA agent. He was trying to arrest me. The DEA blamed me for assisting the Columbians with developing strategic drug smuggling routes to the US. He wouldn’t stop staring at me. So, i waited until he wasn’t looking and snuck up behind him. I stripped off my hospital gown, wrapped it around his neck and proceeded to choke him. Someone called security. When they arrived, I threatened them that i would choke the “agent” to death if they approached me.
I felt like an absolute madman. I recall that my eyes widened and I looked very evil. I remember possessing this enormous amount of strength. I had no idea where it came from. I threw the nurse to the floor like a ragdoll. For some odd reason i remember being extremely angry and paranoid. My toxin levels were through the roof.
Security kept their distance. I recall the presence of doctors, nurses and hospital staff in the background. The doctors were calm but the nurses were hysterical. Security was ranting on their walkie talkies. About 5–8 minutes later, a handful of cops surrounded me with their weapons pointed at me.
I kept hearing a doctor telling the police not to shoot-that i was hallucinating. A few minutes later, a nurse that took care of me and whom i was closest to started talking to me in a very calm manner. She kept telling me to relax, that everything was going to be ok. She kept telling me that i was under an enormous amount of stress and that i’m just having a bad day.
She kept asking me to slowly loosen my grip and relax. She then told me that my doctors will take care of me-that everything will be ok. At first, i thought she was part of the conspiracy. However, i kept recalling how she always cared for me. I remember many times when she went beyond her duties as a nurse and never refused any of my requests. She felt like a second mother.
About 20 minutes later i started to drift from hallucinating to reality. Since I trusted my nurse, I loosened my grip on the nurse. Next, the cops told him to slowly stand and walk away. After that, the police started barking instructions at me. They told me to drop to my knees with my back facing them. Next, they told me to keep my arms raised high in the air. I complied. After that, they slowly approached me and told me to put my hands behind my back. Then, they proceeded to handcuff me.
A nurse arrived with a gurney. A couple of nurses lifted me on the gurney. The police immediately handcuffed both my wrists to the side bars. They wheeled me to the ER. A while later a nurse injected me with a sedative. It made me feel very relaxed and drowsy. Once again, I woke up the next day strapped to my bed wondering what happened.
I suffered what is known as hepatic encephalopathy. This condition occurs when the liver loses its capacity to eliminate toxins (ammonia) from the bloodstream. As a result, massive amounts of toxins flow through the brain. This causes the patient to hallucinate.
The feeling is very similar to a bad PCP trip. Unfortunately, I know the feeling from personal experience. Every time my toxin level would skyrocket, I had a horrendous bad trip. One older ER doctor told my mother he never seen a patient with such high levels of ammonia. He said that normal ammonia levels are 40–60. The day he examined me, my level was 503.
As my liver continued to fail, so did my kidneys. They were trying to assist my liver eliminate the toxins. But it was an overload. Kidneys are not large organs. They can only help so much. I spent about 13 months getting dialysis treatment in order to clean my blood. The reason that i had such severe hallucinations is because both my liver and my kidneys were failing. After all, both organs are responsible for eliminating toxins.
My ammonia levels were so high that i fell into a coma three times. The longest period was 23 days. During that time, my doctors advised my parents to “get things in order.” They didn’t think i would make it. They feared my toxin levels were so high that if i came out of the coma, i would be a vegetable. The hospital called hospice and they spoke with my parents about my living arrangements for my final days.
My mother was furious. She would have none of that. My mother is ruthless and very intelligent. She’s not someone you want to mess with. I remember several of the ER nurses were afraid of her. Before they would perform a procedure they would come to my bedside and say “are you sure your mother will be o.k with this method?” I couldn’t help but laugh.
My mother told the doctors that no matter what, she was not giving up. She was adamant about that. A while back, i told my mother if i was ever in a situation where i couldn’t make a life or death decision on my own, I didn’t want the doctors to pull the plug-no matter how much pain i was in. I’m a firm believer that God gives life, and God shall be the only one to take life.
When i awoke from my coma, i had no idea where i was. It felt as though i was a million miles from earth and suddenly dumped on a hospital bed. I asked my sitting nurse where i was. He informed me i was in the hospital. What’s a hospital?
After i awoke, I was immediately bumped up the transplant list from #247 to #2. My failed kidneys were actually a blessing in disguise. Since both organs were failing, I had a much higher chance of dying. That’s the main reason why i moved up the list so fast.
The hospital staff informed me that any day i should be expecting new organs. I asked the nurse how the organs are delivered. She told me via helicopter. She said there’s a landing pad on the top of the hospital. Cool. I recall i would get excited every time i heard a loud noise outside. Many times i hallucinated and thought the organs were delivered.
About 10 days later, my nurse came to my room and informed me that she thinks the organs are on their way. She told me the doctor will call me in about ten minutes do discuss the situation with me.
Call me on the phone? even in my confused state of mind i couldn’t ever recall a doctor calling a patient on the phone while in the hospital. It felt strange. And to be honest, i’m not 100% sure that he called me. I may have been tripping out again. My mother insists that i was hallucinating. However, i vividly remember the conversation. It felt so real.
Anyways, about 15 minutes later the doctor called. He told me that he was calling from blah blah prison. He said a 41 year old male just committed suicide by hanging himself in his cell. He said that the prisoner was an organ donor. The doctor told me that he and a couple of other physicians visually inspected the organs, and they appeared to be fine. He asked me if i wanted them. Since I wasn’t very clear minded at the moment, I replied “what would you do if you were in my shoes?” He paused and said “I would take them.” So i did.
Till this day, for two reasons, i feel very guilty about receiving the organs. First, I don’t believe i deserve them. I am, and always will be a drug addict. I can never change this fact. There is a drastic shortage of livers. Each year, there are about 16,500 people on the waiting list. However, there are only about 2,300 liver transplants performed each year. There are many patients on the waiting list that never used drugs or alcohol, and will die waiting.
Second, the patient in the next room was also considered a recipient for the liver, but was denied. Two days later he died. I feel extremely guilty and very saddened about that.
When i was in the hospital (prior to my transplant), my father collapsed right in front of the nursing station from a heart attack. I think it was from all the stress.
I felt so hopeless. My mother is old and there are just the three of us. Shortly after i was diagnosed with cirrhosis, my father quit his job and didn’t work for three years just so he could help my mother take care of me. I was a handful. It took around the clock supervision to take care of me. I would constantly scream in the middle of the night from either pain or hallucinations. Since my mother is old, my father didn’t want her to be my sole caretaker.
The doctors told me they had a difficult time deciding whom shall receive the organs. It was between the patient next door and me. They informed me they select the beneficiary according to the patient that has the highest probability of surviving the operation. My doctor told me i had about a 50% chance of surviving the surgery. That was higher than the other patient. He said the other patient was weaker than me, hence the reason they chose me as the recipient.
I often wonder how i lived. How did i get so lucky? Was God looking over me all this time? Was it His plan? What did i ever do for Him to deserve this? For some strange reason, I feel that i am destined to live. Maybe He’s telling me that it’s just not my time to go. I don’t know. Even 3 years later, tears stream down my face for no apparent reason. Like now. I’m not quite sure if they are tears of happiness, sadness or the trauma i experienced. Perhaps a mixture of all three.
On August 5, 2015, at 11:00 am, i had a liver and kidney transplant. I have to admit, it was the scariest thing i ever had to endure. I didn’t forget what i was up against: heads i survive, tails i die. When it comes to death, even 1% chance is too high. But 50%… whoa.
My destiny was completely out of my hands. At this point, there was nothing my family, the priest that i requested prior to the operation, or the doctors could say or do to guarantee me that i would survive.
I remember as a young boy, my mother was my rock. I had no doubt whatsoever that she would and could take care of all my problems. But at this moment, I felt completely helpless. I thought about the great sorrow my mother would feel if i passed. To pass of natural causes is one thing, To die from a preventable disease is another,
However, I remembered that i must remain positive.
When i was diagnosed with liver cirrhosis, i read a book about liver transplants. The author was a well-known transplant surgeon. He constantly emphasized the importance of remaining positive prior to surgery. He said that the success ratio is much higher by doing so. I heeded his advice and did the best i could.
So, i was facing two options. If i refused the operation, the doctors told me within 3 weeks i would die. If i allowed the anesthesiologist to put me under, i may not survive the operation. I would simply fade to black.
When i awoke from surgery, I was in a serious mood. I should have been stoked that i survived! However, I was feeling the side effects from the anesthesia. My mom kept gleaming and telling me how great it is that the operation was a success. I was grumpy and just wanted to be left alone. All my doctors kept calling me “The Miracle Man.”
It took me a few years to recover, but now i’m much better. The average recovery time for a liver transplant is about 6 months. However, since i had both a liver and kidney transplant, my hepatologist informed me this is the reason why the recovery period took so long.
I’ve completely changed my lifestyle. I’m back to work, exercising regularly, eating a healthy diet, and I’m pain-free 🙂 For the first time in my life, I am experiencing what it feels like to be “normal.” From ages 13–47, drugs and alcohol were the only thing i ever knew.
These days, I feel like a wrongfully convicted prisoner that got freed after 35 years in prison. It will take time for me to adjust being sober. But i’ll be fine. I’m a fighter and i never give up.
On July 18, 2018, i accomplished something i never ever imagined- i celebrated five years of sobriety from drugs and alcohol. It’s been an incredibly difficult journey. Making the decision to stop using was the easy part. Staying off drugs is much more difficult.
Without fail, every Friday afternoon the cravings for alcohol come on very strong. I feel like i’m in solitary confinement for life. My anxiety levels skyrocket. I start pacing the room like a nervous father whose child is in ICU, dying. It’s a horrible feeling.
So, i drop to my knees and pray. Next, i force myself to flashback to the days of my liver cirrhosis. I force myself to relive the living hell. I imagine my future had i not stopped using. I force myself to witness my mother’s tears stream down her face during the viewing at my wake. I force myself to look into her eyes and see the deathly look in her eyes. I know this sounds like great extremes to stay off drugs, but it’s the only strategy i find effective.
I know temptation is the devils work. I know he’s trying to sucker me into drinking again. I know he’s a master manipulator. He constantly plants temptations in my head. He tempts me to rationalize “if you only drink this once, you cannot possibly destroy your liver!” or, “ remember how relaxed and happy alcohol makes you feel?” “remember how your emotional pain goes away after one drink?”
But i have a plan and i always execute it. I keep my distance from my druggie friends; I refuse to go anywhere where alcohol will be served; I pray when temptation arises.
The old Joe always succumbed to temptation. But i’m not the same person I was prior to liver cirrhosis. I’ll be damned if i’ll go through the nightmare of the past again. Besides, if i develop liver problems again and need another transplant, i will be denied (the only exception is if the damage isn’t caused by drugs or alcohol). All my pain, struggles and tribulations would be in vain.
It took me a while to post my story because i suffered a very traumatic experience. For the past three years the memories were too raw. So i swept my problems under the rug and tried to forget them. Now, i confront my problems head on. I cringe just thinking about the massive pain that i had to endure. I wouldn’t wish this disease on my worst enemy.
However, posting my experience feels very therapeutic. It’s time to focus on the future.
Today, i have a very different outlook and approach to life. I know this sounds cliche, but i do take pleasure in small things. I no longer take life for granted. Every day is a gift. I somehow cheated death and lived to tell about it.
Today, sometimes i walk the streets and feel as though i’m someone else- a reincarnation of someone i’m learning to know. The old Joe is dead, he’s no longer with us.
I spent the majority of 2013–2015 in hospitals. During that time, something profound happened. I continuously found myself negotiating with God. I begged Him that if he let me live, I would share my experience with other addicts. I asked Him to allow me to be His voice in assisting other struggling addicts.
I also promised Him I would attend AA and NA meetings. Soon after my covenant, I began to get flooded with images of me speaking with addicts. These thoughts occured hundreds of times in a six month period. It was as though they were a constant reminder from God for me to execute my promises.
I do realize that i am very fortunate to be alive. I am also eternally grateful. Now that I’m off disability and my back pain nearly gone, I feel it’s time to repay my debt to both God and society. I have received so so much, it’s only fair that i give back.
May my story inspire others to release themselves from the strangulation of addiction. May God utilize me as His tool and give me the strength and courage needed to effectively carry out His plan.
I want to give a special thanks to Keck Hospital of USC. They did an amazing job of treating me. They are extremely professional. All the surgeons, doctors, nurses and staff are incredibly competent and caring. They played a huge role in my recovery.
If any of you are suffering from drug or alcohol addiction, please trust that there is help. If i can return from the depth of hell, so can you. You are much stronger than you think. God bless.
This is my first selfie ever. I took this pic during the early stage of liver cirrhosis, sometime in late 2013. This was one of my better days. I was offered a role in the horror film, Night of the Living Dead 2, however, i declined (just kidding).
Spring of 2014. Feeling like a zombie. I went from 212 lbs. to 116 lbs. in eleven months after my diagnosis with liver cirrhosis. I was nothing but skin and bones.
This is me, back to work in 2017 as a real estate broker & wholesaler. Still a little weak, but feeling a whole lot better and a whole lot happier 🙂