Story #1

 The End

I was lying on a gurney waiting in the hallway just outside the OR, second floor, Cleveland Clinic Hospital. My very good friend, Adrienne, was still with me having just played a fight song for the elevator trip from the 10th floor down to OR and continuing with a playlist she made just for this occasion.

Here comes this tall young guy with black hair, on the skinny side, and he leans over me, but with his head sideways like mine, and introduces himself.

“Hi, I’m Dr. Hashimoto. Do you think I look old enough to be your transplant surgeon?”

“No. Sixteen isn’t old enough.”

He answered, “Well, I’m 17.”

“Then you’re in.” We both laughed and he rushed off somewhere.

That’s how I met one of the rock stars of liver transplant surgery just before we were going to spend double-digit hours together with about 14 other medical professionals while they performed magic:  They would remove my tired, very sick liver and replace it with the left lobe of a liver from an organ donor who had died many hours before. There were four surgeons, two to three anesthesiologists, scrub nurses and assistants and one perfusionist (who checked my vitals the whole time). Date:  Sunday, May 22, 2016, starting at around 10 a.m., ending 11:30 p.m.

 

The Beginning

This is the first in a series of articles about my 11-year journey through a liver disease all the way to transplant. There may be around 10 articles, maybe more, or fewer. Eventually, a book.

So far I haven’t found anyone else on Medium writing on the topic of organ transplant, so I thought I’d dive in. Telling the story is semi-to-lots of scary. But honestly, it doesn’t compare to facing death on a regular basis. Once I worked that out, starting this series seemed easy.

Writing this is also an attempt to reach out to others on transplant waitlists, or waiting to get on one, along with their caregivers. There are around 119,000 people in the U.S. who are waiting for a new organ to take the place of their failing one. Along with them are family members and friends – all people caught up in the anxiety, hope, hopelessness, being able to help, feeling helpless at the same time, and wondering what is happening. These stories are reaching out to all of you; my journey is your journey, too. The highest number of those waitlisted are waiting for a new kidney. You can go to UNOS.org and get more information about how they regulate everything related to transplant in this country. It’s an amazing organization, and fascinating how it coordinates all it does.

 

Here’s an outline to help you move through the story:

#1 – My Life Just Prior to Getting Sick

#2 – The Night I Got Big Pain

#3 – A Discovery During Gallbladder Surgery

#4 – Diagnosis: What is This Liver Disease?

#5 – The Whole Being Sick Part – many sections in #5 (the exciting parts)

Some reading tips: 

I got a brand-new life and was actually healthier post-transplant than before I got sick; a very happy ending. So you might want to think about reading this like it’s a romance novel – you know, you get a few key characters, lots of conflict and tension, and especially drama, lots of drama, very sweet parts where the characters metaphorically (in this story) kiss and make up, and then the Happily Ever After (HEA) ending. But without the sex part (you can make that up yourself). But HEA is guaranteed.

 

My Life Just Prior to Getting Sick

I was at a point in my life where I was high-functioning, highly motivated and inspired about every aspect of my life. I was 58 years old and had finally landed on a career goal. Yes, late bloomer, and making the most of it. Career goal: To teach writing and English literature to college students. I’d already started doing the teaching and tutoring, and totally loved it. And now I was busy earning a Master’s of Humanities so I’d be eligible for a full-time job as a professor at a community college anywhere in the country – or world. I took two graduate classes each semester, of course with a goal to make all As. Then I spent many hours teaching and prep for that along with hours in the writing center tutoring students face-to-face and online. I was focused and excelling in everything I was engaged in.

I lived in a condo (with a real-live mortgage) in one of the most desirable neighborhoods in Denver – Washington Park. I walked around its nearly three-mile circumference (and beautiful gardens, lakes, trees) every single day. I would get to the campus I worked and attended classes via Denver Light Rail, and walked most days to that station a mile away. The Auraria Campus in downtown Denver is large, containing three separate schools (Community College of Denver, Metropolitan State College and University of Colorado at Denver). During the day I walked another three miles at Auraria. I had three part-time jobs to support me and my cat:  Teaching two classes per semester, tutoring in the Writing Center, and contract editing for a large corporation where I had been an employee.

For fun and more exercise, I was taking African dance classes every Saturday, and went to tango classes and attended milongas late Friday nights when I could. I was a milonguera (tango dancer), and proud of it! This was my life and I loved all of it.

I had a lot of good friends and nice acquaintances that came from school and the Writing Center where I tutored writing, from African dance class and a handful from tango (though I liked the dancing much better in Buenos Aires).

I cooked most of my meals, but also ate a lot of takeout Chinese, pizza in the neighborhood and sometimes cooked for friends. I journaled every single morning, without fail, and started that in January 1992. I dreamed of being a writer but was too scared to take the full-on dive. But I had chosen my graduate degree because it allowed a Creative Project in place of a thesis, and mine was going to be my memoir. That’s where I was headed:  Teaching, tutoring and writing. With some trips to Argentina sandwiched in there.

 

The Night I Got Big Pain

Symptoms began one night during the last week of the second semester of grad school. I was busy preparing my final papers for two classes I was taking, and grading my students’ papers in two classes I was teaching. Then one night I had Big Pain all night long. All night pacing back and forth in my apartment, in the most pain I’d ever experienced. Did I call a friend or an ambulance? Oh no, in denial. And beyond that, I really didn’t know what to do. I couldn’t bend over to look in my files to look up my insurance rules, so I just recalled my card saying University of Colorado and decided that hospital would be good to go to.

By 6 a.m. I called a neighbor who worked at the same hospital I was planning to go to, asked her to drop me off at the ER. She did – literally drop me off. I walked in alone. It was slow there, I told the triage nurse when she asked that my pain level was 10, and she took me right to a cubicle. And the most uncomfortable bed in the world. I got checked over by doctors, residents (teaching hospital), cared for by nurses.

But everyone who checked me over forgot I came in with level 10 pain. I reminded a nurse and got my very first ever shot of morphine. I’d like to say it knocked me right out, but honestly it barely touched the pain.

The pain? It was in the right side of my upper abdomen, where the liver and gallbladder sit. They poked and prodded, sent me to ultrasound (where the doctor was finally called in and pronounced the liver was enlarged).

This is a side story but interesting and eerie. The ultrasound room was in the creepy basement of the old hospital. It was like sliding down into a horror movie. There were closed doors on either side of a long, long, dirty, once white, falling apart hallway. One door was marked “Liver Transplant Research.” I read that and clearly thought this: “I hope I don’t have to have a liver transplant.” Where did that come from? Well, scared already and doped out on morphine? But it rang a little bit true for me.

I was finally admitted after two full days (not the nights, though) in the ER, when I finally spiked a high fever. I stayed in the hospital four nights in the same pain I came in with. Lots of testing but no diagnosis, just questions. I was referred to a surgeon to possibly remove my gallbladder.

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