I am a candidate for a liver transplant. Being an Ohio resident, the regulations for a liver transplant are covered by and subject to Ohio law.
When I was diagnosed with cirrhosis of the liver, I was shocked and became very scared, and I had no idea of how to interpret all the information I was about to receive, or what it meant.
I am writing this blog to personally help others avoid the confusion, and sometimes frustration, of trying to figure out what is going on during this new process, for which I had absolutely no meaningful information that would help me to figure out logically on what was going on. I even found out that a liver transplant candidate is not officially on the transplant request list until all requirements have been fulfilled. And this process is painstakingly long and complicated.
So I began to think that the key to overcoming the unknown is knowledge. It did not take me long to figure out that getting the specific information that I needed is not necessarily through the attending physician(s), the diagnostic people, or the people working in the hospital or clinic. Everyone is afraid of the HIPPA laws, and therefore tight-lipped on just about everything. That is not to say that the personnel, including the doctors are not helpful and caring, as they are. But the information that I received was pretty general, and a lot of it came back to me in “medical ease,” which is sometimes, at best, reasonably understandable.
So what did I do to increase my comfort level of understanding?
1. By obtaining specific information through the net by searching for key words that I need, and then gleaning as much relevant information that I could use, each time I searched. I have found better results using Google. I also found that Web MD is many times a little hard to understand.
2. By being patient and waiting for the knowledge opportunities to show up, which appear once to many times during this process. These knowledge opportunities show up mostly because of many hours of thought and asking people with similar circumstances. The AA meetings and group therapy meetings were very helpful. Follow up doctor visits proved to be a very useful knowledge source, especially since I could finally think of what questions that I needed answered, instead of helter-skelter questions, I sometimes asked. And internet search using Google was invaluable. There are many internet information sources about cirrhosis and other information targets that might be needed.
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