Is life after liver transplant “normal?” Not exactly.

encephalopathy

“So, ah, are you, um, like, normal now?”

The question came from a friend I hadn’t seen since before my liver transplant. It’s a fair, yet somewhat awkward, question.

Am I normal now that I am approaching the 21st month since my diseased liver was cut out and tossed in the trash so just over half of my son’s healthy liver could be stitched into place?

Normal. My close friends and family will grin a “you were never normal” smile. They’re right. I’ve always been slightly off-center. My friend was more looking for answers about my physical condition and asking, “all set now?”

Am I all set now? In many ways I am. I can pedal a bike 50 miles. I can mingle with people. I can work hard and support my family. I’m no longer “bubble boy” confined to a sterile environment.

But, there are other things that are bothersome:

  • Sometimes I get the same pain I had before transplant. It’s most likely phantom pain because my blood labs are near perfect in every category. Still, it’s pretty unnerving.
  • I live on a 12 hour schedule and respond to an alarm on my smartphone reminding me to take what I call my “keep-me-alive pills.”  I have extra doses stashed in my car, in my office and even on my keychain.
  • I have hand sanitizer everywhere and use it probably 8-10 times a day. I carry a surgical face mask in my pocket just in case I find myself in a small space with someone who is hacking up a lung.
  • Medicine side-effects like headache, hand tremors and tummy aches are part of life now.

But I AM ALIVE! Those things are minor inconveniences. Other than the ever-constant possibility of rejection that lives just below the surface of everything, there is only one lasting effect that really bothers me. It’s a pride issue more than anything and should be minor but it isn’t.

When I was in the throws of End Stage Liver Disease, like so many others, I suffered with Hepatic Encephalopathy. In laymen’s terms, as a result of toxins in my blood that healthy livers filter out, my brain swelled in my skull. The pressure altered my personality, robbed me of reasoning skills, took my short-term memory and made me dim-witted and unable to retain what I read or tried to study. I didn’t know my phone number. I couldn’t add. A mentally-challenged teenager beat me at Scrabble. I said things I didn’t mean and hurt people’sfeelings.

On one occassion Robin came home and found me with the bathroom faucet running and the sink near overflowing. When she asked what I was doing, I angrily snapped at her, “I’m getting a drink!” I thought it was morning even though it was late afternoon. I became combative when she wanted to take me to the emergency room and only gave in when she threatened to call an ambulance to let them deal with me.

In triage I didn’t know my birthdate. I told them Ronald Reagan was president and responded, “January, February, March …” when the doctor asked me to recite the days of the week. It was frightening because I knew I was wrong.

Thankfully, after transplant, the swelling in my brain subsided when my new liver kicked in and started cleaning my blood. My mind quickly regained its ability to process and reason and my sense of humor returned.

But am I normal? I am afraid I, like other transplant survivors I talk with, have some lasting effects of H.E. Most people, especially older people, will say, “that happens to me a lot” but this is new to me and not age-appropriate.

Last night, leading a group study, I looked at the word “analogous” and could not pronounce it no matter how hard I tried. It was in my notes. I put it there and fully understood its meaning but just could not process it in my brain. It was embarassing. As far as I was concerned, I sounded like an idiot.

I have times when I cannot find the simplest of words and will reword my entire sentence to avoid it. I know, I know. It happens to everybody but I really think this is different. Have you ever looked at a stapler and forgotten what it is called? Or, have you held a stapler and asked, “where are the ‘little fastener things'” to refill it?

Here’s where the pride comes in. When it happens to me I am mortified. I feel so embarassed and foolish. Right or wrong, I’ve always thought of myself as a fairly intelligent person. IQ tests have put me at the higher side of the scale and my academic work has shown me to be quite capable. When the phrase or word I need is nowhere to be found, I am afraid of losing my status as someone worth listening to. With some people, I have felt like I immediately fell a few notches in their eyes when they gave me an, “are you kidding me” look.

It’s the only thing the remains from H.E. . I’ve read some accounts that indicate that lasting damage is possible after transplant and others that brush off the short-circuits as normal aging. I doubt the aging arguments though because it happens to me at 50 and I have transplant friends who have similar stories despite being younger.

I know what I should do when it happens. I should just stop trying to hide my weakness and explain it but I am resisting that idea. Why do we all work so hard to hide our weaknesses?

I am interested in hearing your stories if you suffered from H.E. before your transplant. Have you found any lasting effects? How do you deal with them? What are your experiences?

When people ask if I am back to normal now, I want to say yes. We all want to be normal. But the truth is that I will never be “normal” again.

And that really is okay.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Cor. 12:9-11

About Scott Linscott

Living life to the fullest, walking in the dust of my Rabbi, creating art through photography and written word, speaking words of hope and encouragement at conferences, workshops, church and civic gatherings.
This entry was posted in chronic illness, End Stage Liver Disease, handicapped, Liver disease, Organ transplant and tagged , , , , , , , , , , , . Bookmark the permalink.

5 Responses to Is life after liver transplant “normal?” Not exactly.

  1. My liver transplant took place in 28/05/2010. I face no problem now. C virus is now negative. All are OK and I am under supervision. My age is 44 years. My wife age is 35 years. We want a child. Is there any problem for the child?

  2. Believer says:

    Hang in there, I think you are doing a great job.

  3. Anonymous says:

    I took Tamoxifin after having surgery for breast cancer. I felt my mind slipping away. I forgot appointments, felt generally confused. I searched for words etc. I take care of my mother-in-law who has dementia and was pacing her in the “losing” the mind department. I decided quality of life was much better than quantity at that point so stopped taking the dreaded drug. Things have come back but I find when I am tired or stressed words are hard to find -I know what I want to say but just can’t find the vocabulary. I still space on meetings and have to rely on my smart phone a lot. Its unnerving especially if you have been well spoken and half intelligent before.

  4. It is frustrating to say the least… my issues do not come from liver disease but a family history of dementia and Alzheimer’s disease. I feel the panic when a word won’t come to my mind, misplaced my car keys or don’t remember the package that the postman delivered to my door last week. That incident really scared me because I do not remember getting that package with my husbands meds in it. And I was mad when my husband finally located it sitting on top of the box with the new ceiling fan in it. …My doctor tells me that I should not be scared until the time comes when I have my car keys in my hand and don’t remember what they are for. (easy for him to say) My grandmother was “senile” as this insidious disease was called in the way back. She was 94 when she passed and it was considered “normal” for a woman of her age. I watched my dad slide into the terrible abyss over the last 5 years of his life. He was placed into a nursing home, locked unit, for the last 2 and a half years of his life. When I would visit he would think I was a nice lady who came by boat to visit him. He was 84 when he passed. My brother was diagnosed 5 years ago with early onset dementia. He was in his early 50’s when he was diagnosed. He has been on many medical regimens that have, to date, very little effect on retaining what memory he has left. Even though he is challenged every day, he continues to have hope. He cooks a meal once a month for the local Ronald McDonald House in South Carolina, serves on 2 advisory boards at the hospitals where he receives treatment and he attends church where he finds solace and amazing support from his fellow parishioners. So, we soldier on, having faith that we will be fully restored at some point, even if we have to wait to get to heaven for it to happen. In the meantime, I am reassured by the fact that I still know what the car keys are for.

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