Winning the Lottery

I realize this is cliche, but I spend a lot of time thinking about what I would do if I won the lottery. As the Mega Millions is over $500 million this week, there is a lot to dream about. Completely unrealistic, but kind of fun. I try to buy $5 every time the pot grows past $100 million--something I learned from watching Dad do that when I was growing-up--and consider it money that will promptly be wasted. However, you can't win if you don't play, right? Strange, too--I don't gamble at all in other ways, but I feel compelled to play the lottery and continue to have big, unrealistic lottery-winning fantasies.

In past years when the lottery peaked above $100 million, I would think about having prettier household items, traveling to more amazing parts of the world, and a private helicopter to get me around so I never have to sit in traffic on the Pulaski Skyway again. I really don't think I'm too different than many people when I daydream about these things. This week has been giving me a lot to think about what I would do if I won the lottery. It has not been particularly easy week for me:

Topic of the Week: Public Commentary Continued

I have come across a few articles that are interesting and timely that I thought I would share. Either I am more aware or there is an influx of stories about organ donation this week. I suppose it could be a combination of both. I can really only process so much information these days, but I am also a bit compulsive, so I read both articles and figured it would make sense to share them here.

A close family member happened to listen to part of an NPR segment that interviewed the author of the controversial WSJ editorial that I began to discuss in my last post. Here is that NPR article and audiocast: this is the audio link and this is the transcript link. I happened to listen to this while at the gym yesterday and was pleased to hear that Dr. Richard M. Freeman made some very convincing, strong arguments to refute what Dick Teresi was claiming in his new book and the WSJ editorial I discussed. At one point, Dr. Freeman even claims that Teresi is "flat-out wrong."

http://dms.dartmouth.edu/news/2009/10/28_freeman.shtml

Public Commentary

My goal is not to preach to anyone or tell my family's stories to the general public. Yes, I have a blog. Yes, I often share my opinions--and strongly voice them. However, I am mainly doing this blog as an outlet for myself but also to keep some closer friends and family updated. I try to avoid broadcasting this information and also try to keep this somewhat anonymous. This is an extremely personal topic for my family, however there are many aspects of this situation that are impacted by public policies and opinions. Some I have already described, such as the national transplant system method of allocating organs--specifically livers using the MELD system. Others I have not brought-up yet, including the baffling low number of organ donors in this country.

I tend to get very frustrated with most media outlets easily about a range of topics: how the pharmaceutical industry is portrayed and how politics are covered as two examples. I actually get frustrated enough that I often avoid the news. However, in order to keep up with whats going on in my industry and the rest of the world, I try to listen to NPR and review articles in specialized forums, including the Wall Street Journal (WSJ) Health section. I came across one article the other day in the WSJ that I felt I had to bring-up in this forum since it was another case of a public opinion that the media is only exacerbating an ongoing problem in this country. In this case, this public opinion impacts Dad's situation.

The WSJ published an opinion by Dick Teresi titled What You Lose When You Sign That Donor Card. In case you don't have time or interest (or have access) to the article, the author talks about all of the rights that

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.

A Hell of a Diet

"I highly recommend this diet!"

This is probably the second most common sarcastic phrase to come out of my father's mouth. For those wondering, "my mazel" is probably #3 and I'll keep you in suspense for now what #1 is.

I am an eater. Always have been and still am. Ask any family member, friend, or colleague that sits within earshot of me and they'll tell you that I can put away a serious amount of food. Since I was 7. I'm still very proud that I could amaze entire restaurants full of people with how much the "small blonde girl" ate.  I am not alone--this runs in the family. For those keeping count, my family eats and kvetches a lot. Dad falls in the 'family member that can eat' category. Well, he was an eater until his liver disease progressed.

Another terrible side effect that doesn't get discussed enough is how advanced cirrhosis is certainly effective at unintentional weight loss and malnutrition. In fairness, there are so many significant side effects of this disease that it's really hard to keep the 'top 5' list of worst symptoms straight. End stage liver disease (ESLD) causes lack of appetite, difficulty digesting properly, increased risk of infection, and all sorts of other issues relative to metabolism and absorption.


http://www.cghjournal.org/article/S1542-3565(11)01169-4/journalimage?src=fig&loc=gr1&ishighres=true&allhighres=true&free=yes

 As a lot of people, right around Thanksgiving and the end of the year I noticed that I was eating too much and I already had added extra [8+!!] pounds since coming back from my Honeymoon in August.