In January, my liver failure rapidly accelerated along with its side effects – ascites and a horrifying new shade of yellow. One fateful Sunday (1/21/18), after a jaunt to a Maternity shop to buy pants that fit, I hit the wall. That evening, right after church, I asked my husband to drive me to the Emergency Room.
Turns out, I was dangerously anemic and had gained 18.5 pounds of water over a 2 month period. The lower lobe of one of my lungs had collapsed due to the fluid in my abdomen pressing against my diaphragm. My MELD (which had been a 24 courtesy of a few exception points) had risen to 28. I was now in the Transplant Zone!
The decision was made to admit me; however, there were no rooms open on the transplant floor, so I spent the night in the ER in the only room they had (used for psychiatric hold/evaluation). How fun. The door to the room was solid wood with a tiny rectangular window with shades inside the window pane. The bedside remote only called the nurses station, no other buttons worked. The TV was mounted close to the ceiling and had to be turned on manually – my husband stood on a chair to reach it. The TV and medical equipment sat in a recessed area with a metal door that could be rolled down to close off the room if needed. The bright light directly above me couldn’t be dimmed or turned off, but I was assured the close circuit cameras were not recording.
I was given diuretics to begin the process of wicking fluid off my body. Naturally the bathroom IMMEDIATELY to the right of my room was out of order, so I had to trot halfway across the ER to another one conveniently hidden behind a wall. This went on all night until a room opened up in the hospital.
Once on the transplant floor, I lost 18 lbs. in 3 days and received two transfusions. The first two in my life! I had to sign an elaborate consent form to receive blood products and the process itself was interesting. It took two people to cross check and record the serial numbers of the blood that is now forever linked with my medical information. I was impressed by the controls the hospital and blood bank have in place to trace blood products through the entire life cycle.
Once the cross-check was done, the nurse attached the tubing from the transfusion unit to my existing IV line. When she did, some of the blood flowed on to my gown and the back of my hand. I had this “Oh $#!@%” moment where I panicked because I had someone else’s blood on my hand. I was about to jump up, scrub my hand with bleach and run to the HIV testing station when it occurred to me that the blood was already flowing in my veins. Did I mention that the nurse stood by my bed for 10-15 minutes to ensure I didn’t have a severe allergic reaction? But here’s the amazing thing – within 10 minutes I started to feel better and became warmer. By the second IV, my cheeks turned pink again.
Unfortunately, due to the excellent medical care I received, my MELD went back down to 21, but I was allowed to retain my 3 exception points. I left the hospital 3 days later and felt so dejected that my time hadn’t come. I sat in tears at the exit door (with two new mothers clutching their babies), both looking at me with wary eyes. The mother sitting closest to me actually pulled her baby closer to her chest and covered his head with a blanket when she saw how yellow I was. It felt like a slap to my face – I wanted to tell her she couldn’t catch what I have, but it wouldn’t have done any good. And I’ve got to say, if the tables were turned, I would have done the same thing with a newborn.
Fortunately, the story doesn’t end here. Please read my next blog post titled “The Call”
As always, thanks for walking this journey with me!
All Hail the Queen