Tuesday, December 7, 2021

Changing the Odds

Drug addiction has taken a heavy toll on America.  When I see the obituaries of young lives snuffed out it breaks my heart.  I don't believe there can be any benefit in a young life needlessly lost, but there have been changes in the organ donation scenario because of it.  True, many addicts have Hepatitis C, which used to preclude them from donating organs.  That is no longer true.

When my liver function began to stabilize at around 32 MELD and my pulmonary pressure receded, the doctors approached me about accepting a liver with Hepatitis C.  During my initial approval, I had been given the choice.  At that time, I felt that if I were going to go through a liver transplant, I wanted a healthy liver.  But now, I just wanted to increase my chances of living.  The doctors explained that someone more likely to survive would get the available healthy livers instead of me, but if I would accept a Hepatitis C liver, I could double my odds.  I would be treated afterwards, and in 3 months I would be Hepatitis free.  I accepted.  

The negative of accepting an organ with Hepatitis C is the obvious:  you always carry the DNA for Hepatitis C.  Even though it's dormant after treatment, there is the possibility of reoccurrence.  The positive is that you increase your odds of getting an organ.  It's a personal choice each individual has to make for themselves.  

Once I agreed to the Hep C liver option, it was time to go back to the regular floor and focus on building my strength for the upcoming transplant.  They wanted me out of bed and walking as much as possible.  I hadn't walked in nearly a month.  I was so shocked at how difficult it was to walk.  My feet burned.  I needed assistance for a few days and used a walker, but I fought hard.

One day I was walking down the hall and asked the physical therapist if my glasses were dirty.  I could hardly see.  She looked puzzled and said they were not.  Later that day, things began to look stranger:  the ceiling tiles were straight on one end of the room and at a 45-degree angle on the other side, and people started having one set of eyes, but two mouths.  I didn't realize I was having another bout of hepatic encephalopathy.  

During that time, I posted false information on my Facebook page, and made videos that didn't make sense (we laugh at them now). Eventually I got too confused to answer my phone.  My family couldn't visit and now they couldn't talk to me.  Of course, they were concerned!  My mother moved heaven and earth and alerted the liver team that something was wrong and demanded an answer.  There's no advocate like a worried mother!

Eventually, the encephalopathy improved.  I was as stable as I would be, whether in the hospital or at home.  My hematologist visited me one morning and said that I had been the alternate to a transplant the night before (if something had not worked out for that person, it would have come to me).  He said he believed that within 7 days I would have a liver.  Could I keep fighting for 7 days longer?

A memory that makes me cry every time...

The nurse got me settled into my parents' car.  Dad started the car, paused, looked back at me and said, "I haven't felt like this since the day I brought you home from the hospital for the first time.  I'm so afraid something will go wrong while you're in my care."

When you're extremely ill, it's easy to forget that what you're going through affects everyone around you.  


August 2, 2021
Waiting


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