All for naught. I will move ahead with the blog of course. But instead of a newspaper article or a film documentary, I will be my own editor, photographer and writer. (Did you notice I put photographer first...LOL)
Send this blog link to everyone you know. Hopefully the word will get out that organ donation is a national concern.
Back story: (for those that don't want to read the full archives).
I am undergoing tests Nov 15, 16 and 17 of this year (2006) to see if I am a capable live liver donor to a person that will remain unnamed for the time being. This "recipient" is currently on the waiting list with a MELD score of 8. While that is not a score of 40, it is still a score.
Because my mind works in mysterious ways (I wonder if it works at all sometimes) I wanted to offer a photographer and journalist full access to all of my appointments while I undergo this "journey". The spark for this story was from the 2006 Pulitzer winner for feature writing and photography as well as the 2005 Pulitzer winner for feature photography.
While I didn't get those professionals to do my story. I would have died if they did and that would result in full organ donation. Different story then. I was hoping for a story in one of our local (LARGE circulation) newspapers, the Pittsburgh Post Gazette. I even spoke to the photo editor and was assigned a photographer. Then I contacted the Starzl Clinic with my intent.....they weren't so enthusiastic about it. I was referred to the media Relations department where they said "no", citing HIPAA and privacey issues.
Well, I am the patient and I am giving full consent and I believe HIPAA actually covers information released by the clinic/hospital, I didn't see any problem. Then....they said it is an "administrative policy" thus media access would be denied. Well I citied a few documentary and news articles with access to surgical rooms, procedures etc. I even called on the photo editor for help. That was nearly two weeks ago. I have heard NOTHING from the hospital or the photo editor. I have reached out to others for help, like a contact in Washington DC and an editor in my hometown newspaper as well as a news anchor I graduated with. Still, nothing. I have however heard from another live liver donor and from a photographer and a writer with experience in sensitive situations. The info I recived didn't directly help my cause....it did allow me some insight that was valuable.
Now let's jump to the here and now. I will be blogging as live as possible for the next three days. Friday is the liver biopsy. That's the big one. Assuming I pass all the other tests. I want everyone to know what it's like to go through the process of determining if I will be a capable live liver donor. I am not a writer by trade and you will see that in my posts. I will however try to evoke a sense of being there. Bear with me if I miss the mark.
I have 300 visits as of late this afternoon. Let's see how many visits I get by Saturday where I will be recuperating.
Here are the numbers so far:
|Waiting list candidates as of today 2:59pm|
|All candidates will be less than the sum due to candidates waiting for multiple organs|
|Transplants performed January - August 2006|
|Based on OPTN data as of 11/03/2006|
|Donors recovered January - August 2006|
data provided by http://www.optn.org/data/