Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.
Patient Perspectives: Living with Diabetes, Ceasing Treatment, Impatience, and Indigestion Gone Wrong
CFAH Staff | December 3, 2010
Julian Seifter is a Harvard Medical School professor, a doctor specializing in chronic kidney disease, and he has diabetes.' Does his professional background make him a good patient?' "Mixed," he says. "When I was diagnosed 30 years ago my first response was to run away from the illness I pretended to myself and others that I wasn't sick. Over time I've tried for better control of my blood sugar levels, but I've never been perfectly successful."' Julian believes that "Everyone needs the opportunity to forget their disease for a while and think of other things. Otherwise, they can become their disease."
Kelly Young has some "pretty weird reactions to Rheumatoid Arthritis commercials." She has RA and often wonders, "Why are they showing that?" and "Why am I annoyed by it?" "Anyone can put on socks," she says. So why choose that to focus on in an ad?' Check out her 20 RA Facts, gleaned from interacting with many others living with RA. On the top of the list: patients often disagree with rheumatologists about a status of RA remission or 'control. Here is some help for communicating about symptoms with your doctor.
All the treatments, procedures, and medicines weren't improving Jim Stanicki's quality of life. "He's been there and done that surgery, chemo but has decided that he just doesn't want any of that anymore," Trisha Torrey writes . Instead, Jim has ceased the treatments that were "getting in the way" of enjoying the life he had left, and that decision has "freed him in ways he didn't expect." His message is one of empowerment, not giving up. You can read about Jim's experience and perspective on Inspire.com. And for help making decisions about end-of-life care, check out Advance Directives: Caring for You & Your Family. Like Trisha says, "Most patients don't understand that they can make that decision ' but we all can'Sometimes, as in Jim's case, that's the one that will provide the best quality for the life that remains."
Empowerment takes on a different form for Cynthia Lott Vogel. Her history of illness is, in the words of e-Patient Dave, long, deep and often painful. But due to her new-found form of empowerment (i.e. impatience), Cynthia's status is improving. Despite her doctors advice, Cynthia has taken up yoga, vigorous walking, and drinks 64 ounces of water a day. She points out though that, "Medical intervention must come when things have deteriorated to a critical state, and you must deal with the complications and side effects of all those treatments as they arise." Her point is that you, the person, are often the best judge of what your body needs and can tolerate.
When Mike began experiencing chest pain on a Friday night, his wife Susan called 911 and he was taken to the local emergency department in an ambulance. Mike underwent an EKG, chest x-ray, CT scan of his chest, stayed overnight for a chest pain evaluation and a follow-up stress test. Though Mike felt fine and said he tried to protest all the fuss, the resident said, Can't be too careful with chest pain. Mike left the hospital the following Tuesday with a clean bill of health and a diagnosis of gastric reflux, a.k.a indigestion. The bill for his upset stomach came to $11,000. 'We don't have any money, Mike explained. Susan's insurance won't cover it, since we forgot to put me on her policy when I lost my job, he continued. 'We're gonna have to file bankruptcy Doc. I don't know what else we can do.'' Were Mike and his wife overly worried about his chest pain or did the hospital overly treat? Their story is causing quite a stir on The Health Care Blog.
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April 11, 2013 at 12:33 AM
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