Preparing for a Roller Coaster

I have loved roller coasters since I was born. Literally. There are stories of me crying from my stroller when I couldn't go on the bigger rides at various theme parks when I was barely old enough to talk. The day that I was tall enough to go on Space Mountain for the first time was one of the highlights of my life. And now I am on the ultimate emotional roller coaster: Dad waiting on the liver transplant list.

I have to say, like any other stressful situation, you can never truly be prepared. I have been through some tough times with my parents, yet the past month has been something I have never experienced before. Some days I'm feeling hopeful (even excited!), other days completely terrified, and others completely exhausted. I explained in my last post a little about how the national transplant list works, but this process is painful. Period.

The past week has been about as extreme of a roller coaster I have ever been on.

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.

Medical Education: Variceal Bleeding

I have done some intense Google searching over the past several years about liver disease, and yet I still am frequently learning something new. Usually, I learn something whenever Dad has a new or more severe side effect from his cirrhosis. Of course, that means more Googling. I can certainly just ask Dad about most of these questions that I have, but it's so much more satisfying to see the pictures and read the various definitions and statistics for yourself when you are not a doctor and of my generation, right?

In January of 2010, Dad was hospitalized. Again. This was not the second time he was hospitalized in his life, only the second time mentioned in this blog. It was the second or third time he was hospitalized for variceal bleeding and when I really started to learn more about the topic.


Note: This picture is not entirely accurate in Dad's case as he has no spleen.


For the record, I am losing count of specific hospital stays for two reasons:
1. Both of my parents have been hospitalized about two dozen times in my lifetime for a barrage of reasons, so without a forum like this it really is hard to keep track. I am currently wondering why I didn't start something like this much earlier.
2. As mentioned in a previous post, Dad checks himself out of the hospital right away-- regardless of how sick he is--so the details of each hospital visit becomes blurred.

Let's get back back on topic.

Life's Not Fair

I suppose this blog is meant to talk about Dad's current situation, therefore it would seem that his liver condition defines him. Like so many other people with life-threatening conditions, that is far from the truth. In fact, it's hard to reconcile that someone that I have always looked-up to is in this terrible position through no fault of his own with so much out of his (and my) control. [Yes, friends, I am a control freak. I know.]

It's not fair!


OK, I got that out of my system. For now.



http://iamlegendcrossfit.blogspot.com/2011/02/when-lifes-not-fair-get-over-it.html

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.

Welcome to Kvetching

Let the kvetching begin!

Welcome to my blog that will serve as an opportunity for me to inform my family and friends while venting about life. First-time blogger with over 30 years experience in kvetching, I am planning to talk about stories of past and present, especially related to my father.

What makes my father so special? That will be obvious if I dedicate enough posts to him, but he is an amazing person. Unfortunately, he also has--as he has dubbed it many, many times--"my mazel": an appropriately sarcastic Yiddish phrase he has used describing his own poor luck.

On New Year's Day, Dad made the big move to Indianapolis to officially begin waiting for his liver transplant there. Why Indianapolis? Why a liver transplant? There are plenty of topics to be covered in later posts. I'm assuming this will be a relatively serious blog, because topics such as organ transplants tend to be heavy. Also, with my Dad's mazel, a lot of stories in the past have been...well...fercockt. However, with a lot of positive thoughts, I am hoping that the future brings much better mazel to Dad, giving new meaning to "my mazel".

With that, I am officially beginning the public venting sessions....