Three weeks ago you met mother and daughter Diane and Hilary Engelman, and learned of their odyssey through the land of smoke and mirrors as Diane fought to get Hilary the correct surgery. Hilary had been told to hurry up and have babies early because she supposedly needed a mitral valve replacement, vs the much less troublesome (but more difficult) repair.
The health plan’s surgeons don’t have much experience or success with the repairs, so doing the right thing would require costly – but necessary – out-of-network surgery. The family fought for years, researching and documenting, and won.
Yesterday Diane sent this update:
Great news about Hilary’s heart! She had an echocardiogram and follow-up cardiology appointment a couple of weeks ago – a year and three-quarters post cardiac surgery. Her cardiologist said that Hilary’s heart valve and the heart itself are both now “normal” and that she can expect the repair to last a very long time.
It may, indeed, last until she’s a little old lady. At that point, she may then have a bit of leakage such as other little old ladies her age might experience.
No guarantees, of course, in any of this, but we both felt enormous relief to hear that she’s likely looking at a very normal life and life span.
Congratulations to both of you!
Trisha Torrey wrote about the Engelmans yesterday on the About.com Empowered Patient blog, proposing that the difficulties the Engelmans faced constitute a new kind of “medical error,” and ought to be classified as such. I can’t disagree: in most of my speeches I say it’s a fundamental human right to know what your options are and pursue them.