Sunday, October 08, 2006

Scary story

I guess it is a good time of year for scary stories, but I only like it when I am pretend scared.

Here is an absolutely horrifying story from today's Kansas City Star about the Kansas City Blood and Marrow Transplant Program. Supposedly everything is fine now, but in 1998 and 1999, an abnormally high number of patients were dying after their stem cell transplants. It was discovered that the stem cells were frozen improperly, sometimes left to sit at room temperature, and patients were receiving transplants of dead cells. Yeah, nice.

The story claims the doctors realized the mortality rate was unusually high, yet they continued to admit new patients to the program and failed to tell them about all of the deaths. It all came out in the open when a lab tech finally blew the whistle. Now a bunch of patients' families are suing, including the family of a woman who had myeloma and died from her transplant. Not only did she get a faulty transplant, the woman's daughter says that doctors at the transplant program told her the transplant could cure the myeloma. Um. No. There is no cure for myeloma.

Anyway, when I first saw the article, I nearly had a heart attack. I was a patient at this transplant program in November and December last year. A doctor there is the one who initially diagnosed me; then in early December he said he wanted to start me on thalidomide in preparation for a transplant. That's when I hightailed it to Mayo. Again, the article says everything is OK now -- there are new doctors, new procedures, fewer deaths -- but you just never know.

Scary, scary, scary.


amanda said...

That is scary. The really scary thing is that it went for almost 10 years before the mistake was found. There needs to be more accountability and options for blood cancer patients.


This frustrates me so much, I could write a book on it.

Beth said...

You know what else is scary? That people who have a life threatening disease don't seek out the most qualified doctors and best treatment facilities. I don't think of myself as being extraordinary. I have myeloma, and have been far & wide to find the best treatment. I live in NC, and have been to every major hospital here, have been to Dana-Farber in Boston and have consulted with one of the world's most famous MM docs.

We all need to be extremely involved in our health care. I would never have a transplant somwhere unless I know what their stats are.