Checking the Boxes

In my last post I talked about the long process of making it onto a liver transplant waiting list. In order for you all to appreciate how involved the process really is, I though it would be an interesting exercise for me to lay-out what is actually required during the evaluation process at every single center that you would like to be listed at. Remember, Dad went through this twice, because he is especially lucky. Not like getting listed twice made his situation any better...

The pre-transplant evaluation process is a mechanical process that is highly regimented and ignores any patient individuality or humanity. For all of you that feel you don't get enough individual attention when you see a physician, consider what is involved in getting onto a US-based organ transplant list. You are essentially treated like a black box that every analyst involved (mostly highly specialized health care professionals) has to evaluate you as an inanimate object and check the box. Once that box is checked, however, everything has to be analyzed together to consider you for the list. It all comes down to treating a patient that needs an organ for survival like something that needs to be 'managed' and the associated risks to be assessed before proceeding.


http://www.sciencedirect.com/science/article/pii/S0048969708006931


Pre-transplant Evaluation Requirements:

Making the List

I described a little bit about the organ allocation process in this country in a previous post--certainly a frustrating system, especially in our case. What I haven't really described is how fun it is to go through the process of actually getting on a waiting list somewhere. Since Dad was lucky enough to go through this twice, I figured it may be a good idea to share a little bit of what it was like. Honestly, the list itself of everything that has to get done and considered was so long, that I felt it deserved it's own (long) post. This post is to go through the general process of what you need to make it onto a liver transplant list in this country.

First, you need a referral from your local GI. I mentioned this a little bit in the post explaining how Dad eventually wound-up in Indiana. This means that your specialist that has been helping manage your liver disease realizes that there are no other options to help at this point other than receiving a healthy, new liver. (Is it really new and healthy? That's a separate topic...) That's a very positive way to start the process, right?

I remember Dad telling me a few years ago that his colleague, also what we consider to be his local GI at this point, told him that he needs to start considering getting on the liver transplant list. That news was very tough to hear. This is the equivalent of the doctor saying: "Even though you cannot survive without a working liver, your liver is not recoverable anymore."

Welcome to the process of getting on the liver transplant waiting list!

Next, you need to select the center that you would like to be listed at. Most people, like Dad at his first pass, will choose a center near home. Depending on where you live, that could be a single option. In the Los Angeles area, there are a few to choose from, however the local GI felt UCLA was the best option.

Google Scholar

I am currently in Indiana visiting Dad again and am happy to report that he's feeling better. Well, relatively speaking anyway. Dad is still not up for leaving the room due to his many physical symptoms despite my annoying pleadings to get him out for a short bit, but since he's been comfortable enough during this visit to at least sit with me upright in the living room for several hours the last few days, I will take what I can get.

http://www.expedia.com/Indianapolis-Hotels-Candlewood-Suites-Indianapolis-Downtown-Medical-District.h1627340.Hotel-Information

We visited Dad's physician (his GI or gastroenterologist) on Friday practically as soon as I stepped off the plane from New Jersey. His GI was kind enough to make an exception to see us on a Friday: he usually only sees pre-transplant patients on Wednesdays and post-transplant patients on Fridays. Thankfully, there was some flexibility somewhere in this crazy mess (or mishegoss) called waiting for a liver transplant.

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!

Once In A Lifetime

Not only has my yoga instructor played the Talking Heads song Once In A Lifetime recently in his classes and it always gets stuck in my head, but it seems to have such an appropriate line:

"You may ask yourself, well, 'how did I get here?' "

Well, how did we get here?

It starts with a story from 1978 that takes place in Simi Valley, California.