The Hepatic Encephalopathy (H.E) Support Group

The Hepatic Encephalopathy (H.E) Support Group 

The Hepatic Encephalopathy (H.E) Support Group is a Facebook page moderated by my friend Bill Pinson. This group is filled with good people who lift each other up with kind comments and feedback. That is not easy to do because most of us with H.E. are not able to see out of the fog some days. Bill is on the other side of it now after a liver transplant. He reaches his hand out through cyber space to unite us in our battle against the effects of liver disease. It is a safe place and you can bet your bottom dollar that you will not be made to feel like you’ve gone crazy if you post anything wacky. I can say that because it’s where I go to post when I’m brain foggy.

Bill recently posted this story even though he felt a little uncomfortable about it. I cried all the way through it. It’s our story. I have been in an HE stupor and not remembered events. I have fallen down or just sat down in public and tried to be invisible. I’ve lost hours of not remembering where I was or what happened.

It’s not easy exposing our weaknesses when we have H.E., but we have to break down the barriers and have a safe place to tell our story. He shared an experience and also the frame of mind he was in when he decided to start the group. Thanks Bill. xo

Bill’s story: Before my liver transplant I was undiagnosed and misdiagnosed for quite some time. I was much heavier than I am now due to extreme swelling in my ankles, feet, legs, groin area and stomach. It was edema, and unlike many people facing Liver Disease that have issues with ascites and have to be tapped, the fluid I was retaining stayed in the tissues and would cause bad swelling. During the last 6 months to a year it actually started seeping through my skin on my legs, abdomen and groin area and even my arms at the end. If you have ever had an extreme sunburn and had the blisters on your skin that fill with fluid and then leak, you have an idea what I experienced.

I picked up a lot of weight, probably 175 pounds or more in a period of 4 to 5 years and much of it was fluid. To put things in perspective I now wear a size 9 1/2 D in men’s shoe, which is the same size I wore before Liver Disease, but after the fluid retention started I was in a shoe size 14 6E. During the last 3 to 6 months before transplant they did not really fit. My feet and ankles and legs were almost black in color.

I developed swelling in my groin that honestly got to about the size of a basketball at one point and I was in so much pain that I hurt nonstop. I was referred to Physical Therapy and a Lymphedema Clinic that used compression bandages and compression hose to push the fluid up. I went there 3 to 5 days a week and got to know the staff pretty well.

After my Transplant, I had a torn rotator cuff and bicep that needed repaired and I had to go to Physical Therapy for a few weeks and I went back to see the same people. They were very shocked for a few reasons. They were amazed that I was still alive because they knew I had been turned down 3 times for Transplant. Knowing how sick I was, they were surprised to see me.

One of the ladies asked if she could talk to me. She gently asked if I remembered having a talk with her about things during my previous visits to the clinic. I had to tell her that I had no memory of it. She proceeded to tell me things that shocked, hurt and embarrassed me. It was painful to hear because I was overcome with many emotions.

She asked if I remembered talking to her about taking my own life. I was floored. This was something I would never think about doing. She told me that I was in so much pain. I was also confused and I had fallen several times and had been hurt. I remembered falling a couple of times at home and also in the driveway. By Christmas season in 2010 I had reached the end of my rope, but it got worse from there.

One day I had gone to the mall to buy a Christmas Gift for my wife. In my weak and confused state, I fell down. As I lay there, some teenage kids came by and began teasing me and made fun of me. They kicked me and took pictures so they could laugh about it later. Finally, 2 older men stopped and helped me get up. That was my lowest point.

The Physical Therapist asked if I was mad that she had called my wife when I told her I was tired of living. I told her I did not remember any of this. I talked to my wife when I got home that day, and she confirmed everything. She told me that from that point on I had to be watched. It was getting to my son to the point that he couldn’t take care of me any longer. He was losing his father.

My wife was working so hard to try to do everything. We had no help. People who agreed to come sit with me or help me would not show up. That’s when I would try to get up, only to fall and get hurt. My lovely wife was also at the end of her rope but she never said anything. Her actions were always loving.

I never really wanted to talk about any of this. I am a little embarrassed. I have always tried to pride myself on being a fighter and Not Giving Up. The cold hard truth was that Hepatic Encephalopathy robbed me of my will and I do not even remember being at this place in my life. 

Bils FB Page https://www.facebook.com/Hepatic-encephalopathy-support-group-250946501599149/

This disease nearly made me do something I am totally against because I was hurting emotionally. I was in so much physical pain and I kept hearing that nobody wanted to help us. I had no chance at a Transplant and I was at a place physically where I was not enjoying life at all and apparently I was going to do things on my own terms.

What a mistake that would have been because just a few months later I received a Transplant.  I was finally accepted and The Miracle that I had been praying for did happen.

Please caregivers, think about what you say to your Loved One. Words do hurt, they can sting.  Think about the “venting” you do and how that could affect someone who is locked in battle Physically, Mentally, and Spiritually. This Monster known as HE has their teeth and claws in deep. The dagger that the Monster uses is something that was never meant to cause harm in the first place – it was just words that someone really did not mean.

I am a Transplant Recipient after 3 times being turned down and referred to Hospice 2 times. I refused to let go.  After making the list, I got the lifesaving call in just 4 days.
Today I am busy being a husband, father, and grandfather. I am feeling better than I have felt in 15 years. I am working for IBM and if I had not told you I was a Transplant Survivor, you would not know. I have scars from this disease. You can see them on my abdomen. You can see the scars from my falls on my arms and legs. But the scars you cannot see are the mental scars that will never fully go away because a part of me died with Liver Disease. Hepatic Encephalopathy was the one who killed that part of me, but the rest of my life is a gift and I want to help others as I learn to understand my own struggle with HE. I have created this support group to help raise awareness about the Condition known as Hepatic Encephalopathy also known as HE.

For more about Hepatic Encephalopathy click here 

Nancy is also a transplant survivor and group moderator!

You can go to Bill’s support group: The Hepatic Encephalopathy (H.E) Support Group on Facebook and look me up at Ihelpckaren or type in the title of this blog. If you get lost trying to find it, give me a shout. Sherry Thompson is one of the moderators and is also a caregiver to her husband Rocky who is waiting for a transplant.  You can just read the posts if you don’t want to share. It’s a safe place. Thanks again Bill.