Rule of 4 Over 2: The Best Christmas Ever

Just before they wheeled me back for surgery

I have been living with liver disease for the past 25 years or so. In the beginning it would only rear it's ugly head when I was pregnant. Over the past 3 years, however, it has become much worse and I am now having symptoms that are interfering with my daily life. I had an episode 3 years ago where I became sick enough to spend a week in the hospital. That was crummy because we were on a ski vacation in Utah. Thankfully, we were not overseas and we had plenty of family nearby for support. After that, I was worked up and placed on the transplant list.

I remained on the list but never sick enough to move up near the top and be in the running for a new liver. As I dealt with bloody noses that never stop and an abdomen full of fluid that was larger than even when I was pregnant, Taylor and Tom were evaluated to be living donors. Finally, I was so yellow (jaundiced) that my patients were either afraid of me or asking me when my baby was due and I was so tired that I couldn't walk from one end of the ER to the other without stopping for a rest. I stopped working that Monday and on Thursday 10 Dec 2020 I received a new liver from a brain dead donor. This was the best Christmas present I have ever received.

I don't know much about the donor other than he was brain dead and tested negative for all testable diseases. The liver was at that hospital where I had the surgery so the ischemic time was very small and the liver was the best specimen that can be produced. I am so thankful for a selfless donor family that was willing to see through their own grief to help another person. This new liver literally changed my life.

I was actually called to to the hospital 2 other times for possible livers that didn't work out. I was unaware that this was a possibility and was devastatingly disappointed when I was sent home without surgery. Finally, my liver came and was placed. My surgery was complicated with a run of vtach that shocked my kidneys. They did not start working until 4 days after the surgery. Once they were improving I was able to be discharged. I received 10 units of blood during the surgery and it took about 8 hours. I came home 8 days after the surgery.

In the ICU just after I was extubated. That is a cordis in my right IJ

It has been a roller coaster since that time. I had an episode where one of my wounds opened up and drained what seemed like gallons of fluid. Isaac was the only one home at the time and was able to help me with bandages and the mess. (This isn't something I would wish on any 14 year old but he handled it well) I have been walking and lifting weights to build up my strength and stamina. I am amazed how weak this surgery made me but I have been able to work back up to rock climbing at the gym and I got a Peloton for my birthday that is currently kicking my butt.

The day I came home from the hospital.

A few weeks ago I began to get very itchy again. I was taken back to the endoscopy suite and it was found that my bile duct was stenotic so a stent was placed. This greatly improved the itching. It was also found that my new liver seems to be leaking bile into the liver parenchyma. Per the surgery and GI teams this often happens when there has been an ischemic event. No clot was found on imaging so I guess the ischemic event happened during the surgery. It is too early to know how this is going to work out. It may all go away with the stent in place, or I may end up needing another new liver.

I am very blessed to have a family that is willing to participate in several fasts on my behalf and keep me in their prayers. I also have a work family that has been nothing but supportive throughout this entire ordeal by bringing by food, PBS subscriptions and books for me to read. I miss work A LOT. I am hoping to go back in June. We will see what happens. In the meantime, I will continue strength and endurance training, prayer and hoping.

Hug your family every day, tell them that you love them. You never know what is going to happen.