My Aunt Betty just got THE CALL!

My Aunt Betty just got the call! She’s heading to Lahey for her liver transplant! Pray!

I’m so excited for her. Remember when I was at the stage when I couldn’t stay out of the hospital for more than 10 days? That’s where that Aunt Betty has been these last few months.

Today, because of an organ donor, she gets a second chance at life. Can you even wrap your head around that? I still can’t!

I mean it happened to me and I still can’t figure out why I received such a gift. I spent about three months basically getting ready to die. My family told me I wouldn’t die, my blog readers told me I wouldn’t die, and my sister Gail refused to let me even speak of dying. But the reality is when you’re dying with liver disease, you know you’re dying.

My aunt Betty is a tiny, little woman with a smile that stretches from ear to ear. She has a contagious laugh that lights up a room. She hugs tight and welcomes everyone.

But over the past six months, especially the last three months, I watched her decline rapidly. Her hands shook like-mine did. Her belly too swelled up with fluid that needed to be drained. Her mind dulled with encephalopathy. Near constant pain shortened the length of her smile and put a dullness in her ever sparkling eyes.

It has been strange for me to be on this side and now watch someone go through the very things I went through. I now understand the uncomfortable smiles and attempts at assurance that visiting friends would offer me.

I remember the story at least of my first bout with encephalopathy. Robin came home from work in the late afternoon to discover me in the upstairs bathroom with the sink near running over. I was hunched over with my face near the water. When she asked what I was doing, evidently I snapped at her and said, “I’m trying to get a drink!” Apparently I asked her what she was doing home so early in the morning when it was late afternoon.

She tells me I walked past her and went back to bed, pulled the covers over my head and writhed in pain. I grew very combatant when she told me we needed to go to the hospital. The only way she finally got me to go was when she threatened to call an ambulance and I did not want the expense of an ambulance call.

When we got to the hospital triage room they asked me a series of questions that should be very simple to answer. I failed the quiz with flying colors. I told them my birthday was three, that Ronald Reagan was president and when they asked me to say the days of the week I said, “January, February, March, April…”

I told no jokes and was generally unpleasant and that’s when Robin knew something was very wrong. They quickly assured her that I wasn’t having a stroke. We learned then of yet another challenge that liver disease families face called “encephalopathy.”

To explain in basic terms, encephalopathy is caused by toxins in the blood that the liver does not filter out which cause the brain to swell. As the brain swells it becomes tighter and tighter in the cavity of the skull and begins to malfunction. Rational thought goes out the window and common questions have no answers while irritability rears a very ugly head.

Aunt Betty has had several of those episodes lately. It is so hard for families to see a fun-loving person who normally is the first one to crack jokes and wear a smile, transform into a grumpy rattlesnake striking at everyone and everything.

The hardest part of encephalopathy for me was that I knew something was wrong. I couldn’t remember my phone number, I couldn’t do simple math, and my reasoning skills were badly impaired. I couldn’t even win a single game of Words with Friends. (I’m usually an above average player.) I felt like I was losing my mind and getting stupid. I dropped out of my Phd. Program. I couldn’t remember a paragraph right after I had read it and yet people kept bringing books and recommending that I read this or read that. I wanted to scream at them and tell them that I didn’t want to read anything and to just leave me alone. I knew they were just trying to help but I didn’t want to admit how bad things were with my memory.

One thing that you might think odd but I call “Grace,” is that all the Bible verses that I committed to memory over my life remained crisp and instantly accessible. They played over and over again in my mind and were totally comforting. I know that sounds weird to people who don’t understand or find any room for all this God stuff that I hold so dear. All I can tell you is I couldn’t remember my birthday but I could recite Psalm 139 almost in its entirety. My birthday wasn’t all that important but Psalm 139 has always been sweet.

My aunt Betty is a weirdo like me. Yes, she’s a Jesus freak. Her faith is strong and ever present. As I write this she’s probably halfway to Lahey clinic nervous and a little scared but also excited. I don’t know all that she’s feeling but I’m sure I can imagine. One thing I do know for sure, she’s trusting in her Jesus and knows that he’s holding her no matter what. She’s most likely feeling like I did and feeling some relief to know that this, one way or the other, will all be over soon. The apostle Paul wrote in one of his letters, “to live is Christ, to die is gain.” I understood exactly what he meant when they wheeled me out of the preparation room, down the hall toward the operating room for my own transplant. My aunt Betty knows the same.

I pray that this is not a “dry run” which is when preparations are all made and then something is discovered with the donor liver that rules it out at the last minute. It’s part of the reality that liver patients and their families face.

I pray that the liver is a perfect match for her and that the surgery goes well. I pray for Dr. Pomposelli, my surgeon, as he does the surgery, that he would be clear minded and perform with precision. I pray for the whole team.

And lastly, I pray for the donor family. Tonight they’re going through tremendous pain and life changing tragedy losing their loved one. I do not know them but I can tell you this, they are unselfish, loving, generous, incredible people. What love, in the hour of their greatest pain, to consider the pain and suffering of others who are dying waiting for life-saving organs. While they mourn tonight and say goodbye, other families are excitedly looking forward to life made possible through their gift.

Betty won’t remember tomorrow. Saturday she’ll wake up with a new liver. Her color will return quickly. And she’ll suddenly feel different. I remember I still had pain but it was a different type of pain. It’s difficult to explain. I remember it as a pain like I had just had major surgery but the pain that said “you’re dying” was not there anymore.

I know firsthand that recovery will not be easy. But I also know that in the word “recovery” lives hope.

What a year it has been for the Linscott clan! Two liver transplants? Amazing! Lord, may Aunt Betty come through surgery with remarkable success. May her new liver be warmly welcomed by her body. And may you grant peace to the donor family as they mourn.

What do you put your hope in? Your job? Your family? Politics? Friends? My hope is built in nothing less than Jesus’ blood and righteousness.

I recommend you try it. 🙂


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 wherever and whenever the opportunity arises.
This entry was posted in chronic illness, Fatty Liver Disease, Jesus, Lahey Clinic, Liver disease, NASH, organ donation, Organ transplant, transplant and tagged , , . Bookmark the permalink.

5 Responses to My Aunt Betty just got THE CALL!

  1. Anonymous says:

    Offering up prayers for your Aunt Betty.

  2. Michelle says:

    Praying!! How exciting!!! She’ll be in my thoughts throughout the day. Love you guys! – Midge

  3. clarelh73 says:

    Prayers with Betty today! Also for you too Scott.

  4. Dave Whitten says:

    Praying as I head to bed. Oh , and I’ll send my update on Bob from last night. It was great. You’ll be there soon too. Hang in there bro, we’re praying for you too. Dave W.

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