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