Lactulose Is Not My Friend

 

On January 30, 2018 I was officially put on the Liver Transplant List. Even tho I hadn’t quite done all the steps I should have on the 6 minute walk. I got close so they said good enough. 

I was always so cold. I would sit with blankets on and when the sun was coming in the windows I would position myself as close as I could just so I could “feel the heat”. 

They put you on a drug called Lactulose. The cup you see is about the amount you’re supposed to take, in my case, 3 times a day.  It tastes horrible and gives you the worst diarrhea you’ve ever had. They make you take it so you don’t get encephalopathy.  You build up poisons that affect your brain.  ie: declining ability to reason, memory loss and personality changes are a few of the symptoms.  

Journal Entry June 17, 2018

I went to my doctor’s appointment today and he admitted me to the hospital right then and there.  It was because I was suffering from malnutrition and frailty.  I was also put on “status 7 hold” on the transplant list.  This means I’m still on the list but not able to receive a liver until they take me off the hold. 

I so hated the hospital.  I got depressed.  My anxiety got really bad.  I get claustrophobic in closed off spaces. (that’s a whole other story not related to my liver). They even put a sign on my door saying DO NOT CLOSE THE DOOR.  One morning the lab dude closed it when he left.  I laid there and was trying not to go into full panic mode.  About the time I was going to call the nurse, she came in and asked why my door was closed.  I told her and she said I should have called as soon as he did that. I said, “yeah, I can see myself calling and saying ‘they closed my door’.”  They would have got a big kick out of that.  

Right now I’m giving a shoutout to my husband.  I love him so much.  He was there every day. He was there from 8 in the morning till 10 at night.  Three nights he slept there because he was so concerned about me.  He would brush my hair, helped me brush my teeth and helped me get into the restroom before I lost everything.  He also wiped my butt afterwards.  Romantic right?

This includes the night we try to forget.  Sidebar: this is how Lactulose deceived me.  I “got the feeling” that I should get to the restroom.  (Do not ever put that off when on Lactulose).  Hubster and aide helped me off the bed and TRIED to get me to the toilet before I exploded. No such luck. It started streaming out before we got in there but at least we made it to the door. Can’t even tell you in words what me and the floor looked like. The aide put out a “CODE BROWN DRILL”. Three more aides showed up. They got me undressed and into the shower.  I stood there in total embarrassment while they washed me off. Thank goodness they had a hand held showerhead. They used it to get everything down the drain. They tried to make me feel better by telling me about a patient who had a code brown disaster. He was still lying down on the bed and it squirted over the bed and hit the wall. Yikes. CAN YOU SAY WORST NIGHT IN MY LIFE. 

  I think EVERY doctor out there should have to have a ml or two of Lactulose right before they go to the office. You never know when the feeling will hit you. Imagine them in a exam room with a patient, or about to do a procedure. They get that anxious look on their face and try to get out of the room before pooping their pants, or better yet, have it running down their legs, and out of their pants. Oh my gosh, I can’t stop laughing right now. 

Before they would release me to go home I was required to pass the 6 minute walk. Physical therapy would come in and get me ready. The first day, I didn’t pass. I was having a hard time breathing. The next day they put an actual oxygen mask on me. Took hold of the walker and headed out the door. NOOOO. Doctor ‘FATTY’ was standing in the doorway of the room all the transplant doctors and PA’s would work in. He had the worst scowl on his face when he looked at me. He actually asked PT why I had oxygen on.  They said I was a mouth breather and needed it to breathe.  I felt his mind telling me he didn’t want me on the list anyway. Needless to say, I didn’t pass that one either.  

The third day they came in to try it again.  I was so depressed about the day before.  They told me they had faith in me.  Being a visual person, I asked them to show me on the food table how far I had to walk. They showed me that I would have to walk around the whole table and a little bit further.  The hallway in the hospital actually looked just like what I had been shown on the table. I put my big girl panties on and we went out in the hall to do it.  I was bound and determined to pass that sucker.  I called on my guardian angel to help me, they started the timer, and off we went.  I KILLED THE TEST!!! The coolest part was at every nurses station we passed they would cheer me on.  

Needless to say, I was taken off  Status 7 hold and they released me to go home. 

 Once again I slept with my phone by my pillow waiting for “THE CALL”.