What's the score? The Road to Indianapolis

Yeah--this post title sounds like the 2011-2012 season of the NY Giants. It is sooooooo not about the NY Giants. Actually, since they made the Superbowl they made my life a total nightmare potentially. For now, let me get back to the real topic I intended to kvetch about now: our country's liver transplant allocation process.

I'm sure folks are perplexed about why this story is taking place in Indianapolis. Why doesn't Dad just get a liver transplant in Southern California where he lives? How does the liver transplant process work, anyway?

About three years ago Dad was told that his liver was deteriorating and he needed to start thinking about getting on a liver transplant list. How tough can that be, especially since your doctors are telling you that you need a liver transplant? He has good insurance, there is a medical need, and Dad has no other major health conditions or any unhealthy habits (smoking, drinking, drugs, etc). The process is easy, right?  Like so many things in this family, it is far from easy, except in this case Dad is in the same boat as about 16,000 other people. 


http://optn.transplant.hrsa.gov/

In order for someone in the US to be considered for an organ transplant, first they have to have their physician refer them to a transplant center. Three years ago, Dad was referred to UCLA liver transplant center by the local GI in town. If you look on the UCLA liver transplant website (click here for link), it seems like the ideal opportunity for Dad: they have the most active program in the world and handle the more complicated cases. Dad went through the [ridiculously complicated and long] process of getting on the transplant list and was officially listed in the Summer of 2009 at UCLA. Hooray!

Social Experiments

Between the complications from advanced liver disease, side effects from the long list of drugs, and the bleakness that comes with being extremely sick in a strange and cold place while waiting for a liver transplant, Dad has not been up for leaving the hotel room. During my 3 day visit with him last weekend, we spent a good chunk of time tracking medication dosing and trying to control the symptoms that are relentless. We didn't get out much, but when we did, I had a very interesting [interesting not in a good way] experience that I'm still trying to understand. More on that later.

One positive social aspect of the weekend was taking advantage of our cell phones to talk to concerned family members and using FaceTime. Technology is amazing. 10 years ago I began using a Motorola clunker of a cell phone sparingly and today I don't have a home phone line and we can FaceTime! Dad and I FaceTime-d with my husband a few times throughout the weekend to check on his progress of cleaning our house while I was away (joking! well, sort of...). My husband is always good for helping lighten the mood and injecting a few jokes into the conversation. Also, early on Saturday morning we 'met' my friend's 8-month old daughter for the first time from Florida. Aside from the fact that it adds 10 pounds to your face and it is generally not flattering, FaceTime is awesome!


This is at the airport, but a typical scene throughout Indianapolis right now

We dared to venture out of the hotel on Monday. After waiting out another bought of nausea, we took advantage of my rental car and drove around Indianapolis in the afternoon. We drove all around downtown Indianapolis and could not escape the preparations for the Superbowl. The football stadium is in the heart of the city (which is really only a few square blocks in total), so there's a very compact area buzzing with construction vehicles, Superbowl banners, and in-progress tents.