Here’s my second post reflecting on the transplant and recovery process:
I like to think I’m independent and can manage problems on my own. The experience so far has shown me that not everything can be done alone. While I was waiting for the second transplant, I was very distraught and had arguments with the doctors about food intake. I could not eat, I felt like crap, and was losing weight. I thought the doctors didn’t understand the situation and from their perspective, I might have seemed like a complainer. But when you feel awful, it’s really hard to eat 2000 calories of anything a day. The doctors and I had our disagreements, and it finally resulted in the placement of feeding tube #1. I was not happy. I still thought I could muster enough calories a day to get nutrition. Looking back, I had eaten a total of two peanut butter crackers and a glass of water in one day; that’s not something a human can survive on, and I was nowhere close to feeling like I could eat more calories.
The feeding tube was very humbling and admittance of defeat – I made an agreement with myself that while the doctors were finding a new liver, my sole job was to stay healthy. With the feeding tube, I felt I was not contributing on my end of the agreement. About 7 days after the feeding tube, the doctors asked me whether I felt I could get enough calories without a feeding tube. I had to be honest and tell them that no, I was still not going to be able to eat my necessary daily caloric intake. It’s difficult to be forced to admit defeat, and even harder to tell someone that you’re again not meeting your end of the bargain. But, the doctors were in agreement and very supportive of my decision. It was probably one of the best decisions at the time – I did not have to worry on an hourly basis whether I was snarfing down food, drinking protein shakes, and counting calories. I could be more focused on pain management and mental well-being while trying to supplement the necessary calories with oral intake. The doctors and I agreed that the feeding tubes were one of the keys to keeping me relatively healthy up to the point of the third surgery.
I had to be humble throughout the transplant process – I knew nothing about transplant surgery and recovery. It does no good to be a hero, either during surgery or recovery. And part of being humble is being willing to admit your faults and limitations. Many times during recovery I reached my limits; whether it be caloric intake, pain tolerance, taking medications, or not sleeping. The problems became easier and manageable when I admitted there was an issue, and worked with the doctors to resolve it. It wasn’t easy, but it was necessary.
The Derek Janiak Hepatobiliary Forum 
you’re a wise man, Derek. Especially because you didn’t try my “White Castle Theory” of calorie intake.
It was the onions that kept me away from your great suggestion. I always liked BK better than McDs because they didn’t put the stupid onions on the burger.
True. They always insisted on onions that were a little smarter.
Without having experienced failure, success wouldn’t feel nearly as good!
In my eyes, your end of the bargain is to stay alive and integrate this new liver, and you’re crushing it in that department. Accepting an alternate route to calorie input is a small victory on your path to the big-picture goal. Good job! Jazz hands!
As I was reading, I was thinking the same as Nik. As we were watching you take on this battle, we never saw defeat. You know and understand your body more than anyone I know. I only saw shear tenacity and will to live. I understand what you mean, but it was definitely more humility than failure.
Power to Onions!