BEWARE: Organ Transplant Awareness!

Organ Transplant Awareness is obviously a topic of acute interest to me. Don't get me wrong. I am an organ donor. In fact, I am one of organ donation's greatest advocates. However, I DO believe that this country's medical professionals have a less than accurate way of explaining the process to a potential recipient and their family. Call me uneducated; call me jaded... you may be correct in both cases. However, I believe there is MUCH room for improvement in this arena of health care education. As I discuss this topic, I will exclusively refer to liver transplant patients, since this is my only area of familiarity.

When you Google "liver transplant success rate", at first the results are encouraging. I got anywhere between 65-94% success rate. That's ok, right? Because any educated person knows that there are several factors to consider, including age of donor, age of recipient, severity of liver disease, and acceptance/rejection stats. But a closer look at some of these statistics reveals more:

Here's a quote from Reuters in June of 2009: "Ninety-four percent of people aged 50 to 64 live for at least three months." (My mom almost made it into that category. She survived for 78 days post-op.) It goes on to say, "70 percent of liver transplant patients are still alive three years later, according to UNOS."

Wonderful. But what about after those three years? If the percentage dropped from 94% to 70% after the first three years, what happens after that? Obviously, as time goes by, there is less of a chance for rejection. But what about all of the other risks?

The UK Transplant Website says, "After the first year, patients who consistently take their medication and visit their physician should continue to enjoy the benefits of transplant for a long time." But what does a "long time" mean? Where are the statistics there? During the course of the three months that my dad slept in a Pittsburgh hospital waiting room, there were countless families who came through after 5, 7, even 15 years after their loved one received a liver. And now, the liver was being rejected by their own body. So where are the statistics on people like this? You don't hear of these instances, but they are common!

Perhaps, even more than the success rates of liver transplantation, it is the lack of education about post-op quality of life that concerns me the most. If you search for information on post-liver transplant lifestyle, you will find a variety of results. Websites that are made public have almost all positive things to say about the recovery experience. Sites such as eHow.com, wellsphere.com, and instablogs.com boast of nothing but the return to a "normal" life. Read this example: "After a liver transplant, many recipients report a number of positive lifestyle changes. Frequent social drinkers or drug users often stop drinking or using just before the liver transplant, and this change may become a permanent adaptation. In addition, recipients generally maintain a low-salt, healthy diet, get their blood tested on a regular basis, and take greater care to avoid sick or infectious individuals. Overweight individuals often undergo weight loss attempts after liver transplants, and doctors encourage transplant recipients to receive treatment for any potential mental illnesses or behavioral issues. Finally, doctors strongly encourage tobacco users to stop smoking or chewing the product after receiving a liver transplant, and the absence of tobacco can, by itself, create a significantly healthier lifestyle."

However, when I get a result that reads: "expectation of normal lifestyle unmet for most liver transplant survivors", I'm relieved, thinking someone out there is telling the truth. Upon clicking the link, however, I am told I must pay a membership to get access to these medical journals. So... what exactly aren't they telling us? Why are we not allowed access to what is really happening in the medical world?

I understand that transplant units across the country want to protect their patients. They want the best for them, I'm sure. But there HAS to be a level of honesty when it comes to post-op lifestyle! Going into surgery, my mother had no idea of the implications that would have occurred had she survived. Would she have moved forward with the transplant anyway? I believe she would have; it became her last attempt at overcoming her disease. I do not hold grudges against those who cared for my mother, nor do I believe that anything would have changed the outcome of her situation. She wanted to live, but she wasn't scared to die. The day she found out she had a donor, she called me. Through her tears, she said, "Either way it'll be good. I'll get a new liver, or I'll get to be with Jesus." I propose that being with Jesus cannot be improved upon by any kind of living here on earth.

I simply make a small plea. If you, or anyone you know is on the road to a transplant, please ask your medical team if they would educate you as they would a member of their own family. And please, if you are an organ donor... God bless you! We all need to do whatever is in our own power to improve the lives of those around us.

Although I'm done with my rant, I have included two links that report on malpractice suits at UPMC in March of 2008.
Pittsburgh Post-Gazette


Wall Street Journal

Retrospect

It is abundantly important to spend a significant amount of time in retrospect. What has shaped your character? What events and which people? I am certain I have crossed into raw, jaded, tainted adulthood. However, when I will begin to truly feel like an adult is a mystery to me. I still need things. I still need people. And I most certainly still need my God. I suppose I've always known that I would still crave, and lean on, all of those things. But I never imagined that such true hurt could exist in the world, let alone the fact that I could be the source of that hurt for someone else. What a bubble I've lived in! I wonder if I will ever again feel the kind of comfort I once took for granted; the free-flowing emotions I reflect on in so many of my memories. I recall sitting in a classroom in my elementary school, bundled in my sweater, dangling my feet inches above the floor... and gazing out the window, knowing that I would always be taken care of. Not only to experience the absence of troubles, but to actually cherish my every moment. I was fortunate enough to experience that kind of childhood. Now that I realize it, not a day goes by that I'm not expressly grateful for that advantage.

Even as a young child, I feared growing older. I feared the day that I would graduate, the day I would move to college, the day I would begin work in the real world, the day I would lose my first parent. I look back and realize… all these things have come to pass. I did not change the outcome of any of these events by fearing them. As I'm sitting here pondering these facts, Jeremiah 29:11 comes to mind: "'For surely I know the plans I have for you', says the LORD, 'plans for your welfare and not for harm, to give you a future with hope'."

I am finished with worry, anxiety, and fear about the future. I will plan for the future, and look forward to it at times… but may I never be contained to it again. How many moments of joy have I missed out on by being mentally absent from the present? I wish to truly live, enjoy, and savor the time that is here now. Those times will be memories soon enough… and I will always have those to harbor and embrace.

For what it's worth, here's a plea for you to do the same.

Some things you may want to know about...

Labor Day weekend has officially begun! After a very busy week, I welcome it with open arms. I plan on blogging more at some point this weekend. But for now, I just wanted to update you guys on a few things.

First of all, The Acappella Company has launched a brand new online radio station. You can check it out here, at acappella.org!

Also, a friend of mine is going to be featured on the upcoming season of The Biggest Loser! Be sure to watch Sean Algaier and follow his progress. The new season is premiering on NBC on September 15th! Check out a sneak peek here!

And... I have a new website under construction. My hopes are that it will simply be a place to share some of my work. It will also be the new home for my blog, once it's done. It may take awhile, but stay tuned for mandywilsononline.com.

For now, I'm going to go enjoy this beautiful weather! Have a lovely day!
xxx :)