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You know what they say about silence? It's true

I understand that Jesica Santillan's mother is in shock from what must have been the worst few weeks of her life. Really, truly, I do understand that. I have seen the effect of my transplant experience on my own mother. But Mama Santillan to get up in front of the press, live on CNN, without a professional interpreter and accuse the transplant team at Duke University Hospital of taking medications away from "her baby" so she wouldn't live is crazy. I am very sad that I have lost all respect for the family now, despite my sympathy for them.

If you are going to make accusations like that, you want to make sure everybody understands them, so having your cousin who speaks decent English describe what you're saying is probably not the best idea. You would be better off having a spokesperson who is a little more polished with the media, rather than a femily friend who will give his own opinion to whoever has a camera and a microphone.

I know first hand that you have to work to understand your condition and treatment. You have to ask a lot of questions and retain an unbelievable amount of information, but if you can-- and not everybody can, apparently--you will come out ahead, and eventually you will come to know when your doctors aren't being straight with you because what they're saying doesn't make sense.

That's one thing about MDs that I've found to be universally true: they like to explain things. (OK, maybe it's not universally true. Specialists like to talk about their specialties. GPs and internists don't because they're the catch-all docs in a lot of cases.)

As a transplant recipient, I have a definite bias. Transplant surgeons are some of the finest people I know. The nurses, techs and physician's assistants that work with them, again, some of the finest people I know. All these folks are extremely dedicated to their patients. In a transplant team, there is somebody on call at all times, and unlike some other specialties, the team members often have to drag themselves out of bed in the middle of the night, on weekends and holidays. I met the surgeon who did my first transplant, the one where I lost the kidney, at about 2:00 in the morning. There's no reason to think that is unusual.

What I do know as fact is that the team at Inova Fairfax Hospital saved my life a number of times. I imagine that that is true of every transplant team in the world. I don't necessarily believe everything a physician tells me, but I have learned enough to ask the right questions, and I know that information is available in Spanish as well as English.

I'm angry about this case because I fear that it will scare people away from getting transplants. I know that when I was on hemodialysis, most of the other patients at the center were not on the UNOS list because they were afraid of the surgery. I ran into the same problem when I was looking for a donor for my second kidney, a couple of people who might have donated backed out of the testing process because they feared the surgery. I know that fear, but I got over it because the alternative of staying on insulin and dialysis and dying after a few years didn't seem that good to me. By the time I had my first transplant I was OK with surgery, but the first time I had to have a catheter implanted I was petrified. Go figure.

People, transplantation is life-saving surgery and fear is a killer. I know that Jesica's family must be in shock, and that they must be very angry, but spreading fear is wrong in any language, and I wish they had advisors who would tell them to shut the hell up.

02.22.2003, 12;01 a.m. comments (0)

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