tag:blogger.com,1999:blog-1818870274401603400.comments2018-11-15T02:47:54.986-05:00A Change of HeartLaurahttp://www.blogger.com/profile/12415155948577364954noreply@blogger.comBlogger42125tag:blogger.com,1999:blog-1818870274401603400.post-63011869373661269722016-06-26T20:34:14.300-04:002016-06-26T20:34:14.300-04:00Hi Holly,
I'm still very much alive and kicki...Hi Holly,<br /><br />I'm still very much alive and kicking. :) I spend most of my online time these days on the SCAD Facebook group I started back in 2011, here:<br /><br />https://www.facebook.com/groups/SCADsupport/<br /><br />If you haven't joined it yet, you're more than welcome; we have over 1200 survivors and more showing up every day.Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-6580575932135812792016-06-22T23:40:51.299-04:002016-06-22T23:40:51.299-04:00I just became a SCADster last Fri...3 stents in m...I just became a SCADster last Fri...3 stents in my RCA. Im wondering if you are still alive...since no more posts in a few years?? Gosh! I sure hope so!<br />Hollyhkj*324https://www.blogger.com/profile/02998733907721065158noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-81744628645625606822012-02-29T21:01:06.033-05:002012-02-29T21:01:06.033-05:00Congratulations Laura! I LOVE this speech - beaut...Congratulations Laura! I LOVE this speech - beautifully structured and a very powerful message. Thanks so much for letting us read the whole text here.<br />hugs<br />CCarohttp://www.myheartsisters.orgnoreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-12804383792946659002012-02-29T20:48:55.869-05:002012-02-29T20:48:55.869-05:00Hi again, Laura -
Your post is up today at '...Hi again, Laura - <br /><br />Your post is up today at 'Heart Sisters' at: http://myheartsisters.org/2012/02/29/a-zebra-among-horses/<br /><br />Happy "Rare Disease Awareness Day"!<br />hugs<br />C.Carolyn Thomashttp://myheartsisters.org/2012/02/29/a-zebra-among-horses/noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-32204032234100250372012-01-30T10:40:27.116-05:002012-01-30T10:40:27.116-05:00Thanks, Katherine. :)
Indeed, we're a herd of...Thanks, Katherine. :)<br /><br />Indeed, we're a herd of lucky, multi-colored zebras...<br /><br />And yes, absolutely--these studies are going to be huge. You should be proud!Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-76869460067391354762012-01-30T10:24:54.465-05:002012-01-30T10:24:54.465-05:00Awesome post, Laura. I love the jacket sleeve anal...Awesome post, Laura. I love the jacket sleeve analogy too, and agree with how fortunate we are that our "rare" is not chronic and debilitating. We are the lucky zebras.<br /><br />Speaking of, remember the moment we realized online that you were a "purple" zebra (idiopathic) and I was "lavender" (postpartum)? Shades of rare. Thank heavens for Global Genes Project and Mayo Clinic's SCAD studies. <br />KKatherine Leonnoreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-10205817531499657292012-01-29T18:20:26.132-05:002012-01-29T18:20:26.132-05:00Thanks, as always, Carolyn!
Yes, by all means, pl...Thanks, as always, Carolyn!<br /><br />Yes, by all means, please repost on Feb. 29th for Rare Disease Awareness Day. The more awareness, the better.<br /><br />I wish my SCAD were my family's first brush with rare diseases, but one of my beloved uncles passed away in 2007 from amyloidosis:<br /><a href="http://www.mayoclinic.com/health/amyloidosis/DS00431" rel="nofollow">http://www.mayoclinic.com/health/amyloidosis/DS00431</a><br /><br />He was finally diagnosed by an ER physician in 2006, and that was my first encounter with the phrase, "When doctors hear hoofbeats, they think of horses, not zebras."Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-5832896124536744012012-01-29T17:45:15.705-05:002012-01-29T17:45:15.705-05:00Hi Laura
Love your torn coat lining analogy - a b...Hi Laura<br />Love your torn coat lining analogy - a brilliant way to help visualize what happens with a SCAD tear. And thanks for letting us know about Rare Disease Awareness Day - with your permission, I'd love to repost your "zebra" article on Feb 29th at 'Heart Sisters' to help spread the word.<br /><br />Bet you never thought you'd ever be remotely interested in promoting rare diseases, ay?<br /><br />BTW, your cardiac rehab nurse is an idiot. That's my unprofessional non-medical diagnosis. . . <br /><br />Cheers,<br />C.Carolyn Thomashttp://www.myheartsisters.orgnoreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-72978209450007825422011-12-28T10:10:10.240-05:002011-12-28T10:10:10.240-05:00Thank YOU for doing this study! I'm happy to h...Thank YOU for doing this study! I'm happy to help spread the word about it.Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-27967119799658242912011-12-28T09:39:33.440-05:002011-12-28T09:39:33.440-05:00Thank you for supporting the Yale Heart Study, Lau...Thank you for supporting the Yale Heart Study, Laura! For those who are interested in participating, we are recruiting survey takers until April 2012. Wishing you all health and happiness in the coming New Year. If you have any question, feel free to contact us at heart.study@yale.edu. Please help us, help others. Survey data will be used to ensure future heart attack victims receive the care they need. Much Thanks!Yale Heart Studyhttps://heartstudy.yale.edu/hacs/noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-83950289063607122352011-12-27T11:30:43.263-05:002011-12-27T11:30:43.263-05:00Hi Carolyn,
Always happy to send people to Heart ...Hi Carolyn,<br /><br />Always happy to send people to Heart Sisters; I learn something whenever I read your blog.<br /><br />Yes, it's a very short version of my story -- they had a tiny word count limit, so it's very compressed. :)Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-83639227515886595732011-12-16T21:48:59.674-05:002011-12-16T21:48:59.674-05:00Hello Laura and thanks for such a nice plug for my...Hello Laura and thanks for such a nice plug for my blog, Heart Sisters! And congrats on getting your story picked up on the Bayer site (is it the world's shortest version of your story, or is it continued on the page somewhere I couldn't follow it? I was just getting to the good part when it seemed to abruptly end. I wanted MORE, MORE, MORE!)<br />Thanks again<br />cheers,<br />C.Carolyn Thomashttp://www.myheartsisters.orgnoreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-23496527302572055622011-11-21T08:42:59.810-05:002011-11-21T08:42:59.810-05:00Good morning, Laura - just a heads up that this wo...Good morning, Laura - just a heads up that this wonderful essay has been reposted at Heart Sisters today: http://myheartsisters.org/2011/11/21/but-what-about-the-men/ <br /><br />Thanks for this!<br /><br />XOXOXO<br /><br />C.Carolyn Thomashttp://www.myheartsisters.orgnoreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-53624122684146332702011-11-14T21:59:01.333-05:002011-11-14T21:59:01.333-05:00Ah yes, that would be the IT'S JUST MY PERIOD ...Ah yes, that would be the <a href="http://a-changeofheart.blogspot.com/2009/08/its-just-my-period-its-just-my-period.html" rel="nofollow">IT'S JUST MY PERIOD</a> post. :)<br /><br />I'll point out that the cardiac rehab folks who didn't listen to me were not directly connected to my cardiologist, who does...Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-7699211855014197052011-11-14T19:39:13.385-05:002011-11-14T19:39:13.385-05:00yes, but I remember your story about not being lis...yes, but I remember your story about not being listened to in cardiac rehab when your weight fluctuated one week due to hormones tooAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-43958006732339107832011-11-14T16:26:57.658-05:002011-11-14T16:26:57.658-05:00Let me just add one other thing I'm thankful f...Let me just add one other thing I'm thankful for: I do have a wonderful cardiologist who listens to me and talks with me, not at me.Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-36597603513698334992011-11-07T07:14:37.979-05:002011-11-07T07:14:37.979-05:00How funny! I am with you all the way. Just love wh...How funny! I am with you all the way. Just love when I get that treatment from on high...whether from a jerky MD or a relative who thinks he knows everything a split second or more before the rest of the world! Yet, that same person will turn around and whine like a baby the minute they get sick!! Vent away!!Rachel Willen@FoodFixhttps://www.blogger.com/profile/09470775672340475926noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-7340543623104956682011-11-04T10:50:19.412-04:002011-11-04T10:50:19.412-04:00Dear Cranky Pants,
Yeah, call me when they line u...Dear Cranky Pants,<br /><br />Yeah, call me when they line up a real live physician diagnosed with SCAD . . .<br /><br />I'm just writing an article about a similar phenomenon, which is that of Big Pharma paying celebrities to help shill their drugs: e.g. Barry Manilow talking about his atrial fibrillation, courtesy of Sanofi, the drug company that makes the widely discredited MULTAQ, or Allergan-funded Brooke Shields flogging LATISSE, the prescription eyelash thickening agent. (Yes, there is such a thing, and this marketing campaign actually made it to the top of Forbes' "Top 10 Most Misleading Drug Ads" list last year!) <br /><br />The reason drug companies spend from $20,000 to $2 million on these celebrity "endorsements" is that their respective target markets DO pay attention. Consumers actually BELIEVE that Brooke really knows about drugs that claim to thicken our eyelashes, despite the fact that she leaves out the nasty bits about serious side effects (like unwanted hair growth on other body parts . . . )<br /><br />The reason Dr.Mukewar wants real live MDs to talk openly about their own rare disease diagnoses is likely based on the theory that consumers will BELIEVE a doctor more than a lowly run-of-the-mill little patient.<br /><br />Sadly, he may be right. Let's face it, there is so much unadulterated crap out there in the land of YouTube, Twitter, Facebook, patient forums, and Blog Land that many patients have no clue where to start, who to trust, or what to believe.<br /><br />THAT is why having your Mayo Clinic 'credentials' is SO important in getting both docs and patients to actually pay attention to your important message. <br /><br />Since graduating from the WomenHeart Symposium in 2008, I have been invited to speak to several groups of health care professionals (including staff in mental health, cardiology, E.R.) I know for a fact that these doors would have been firmly closed to me if I were merely just another (female) heart attack survivor.<br /> <br />But that Mayo Clinic training lends instant street cred: not only are we real live survivors (like that fictional physician that Dr. Mukewar wants to serve as poster child for future rare disease awareness campaigns) but we also have trustworthy information to share that, in too many cases, is far more current than the knowledge of some physicians. <br /><br />But, also sadly, doctors prefer to listen to other doctors. When my blog post "When Doctors Become Patients" was picked up by the mega-site KevinMD.com, it was slotted into the PATIENT subject category. <br /><br />http://www.kevinmd.com/blog/2011/08/patient-unforgettable-form-medical-education.html <br /><br />But a few weeks later, when a similar article on the same topic but written by a real live DOCTOR was picked up, this one ended up in the far-more-widely-read PHYSICIAN category. http://www.kevinmd.com/blog/2011/08/doctor-learned-patient.html <br /><br />Go figure. . . <br /><br /><br />XOXOXO<br /><br />Carolyn<br /><br /><br /><br /><br /><br /><br /><br /><br />http://www.kevinmd.com/blog/2011/08/patient-unforgettable-form-medical-education.htmlAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-42737241754273949462011-11-03T20:56:04.738-04:002011-11-03T20:56:04.738-04:00Thank you David, it was great to meet you, too!
A...Thank you David, it was great to meet you, too!<br /><br />And thank you so much for the clear explanation of HIPAA (dangit, just typed it as HIPPA again, now you know why I put an image of hippos in the post).<br /><br />I spent some time wandering through the HIPAA FAQs but couldn't find what I was looking for, so I appreciate you breaking it down for me. And thank you for doing it without making me feel stupid. No, really -- explaining stuff like this without coming across as condescending is a talent, one that not a lot of people have.<br /><br />So, yes. Very much appreciated. I hope our paths cross again IRL sometime; otherwise, I'll see you on Twitter, etc. :)Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-66145084566042453532011-11-03T16:25:09.992-04:002011-11-03T16:25:09.992-04:00Laura --
Nice to meet you IRL @ Mayo.
The short ...Laura --<br /><br />Nice to meet you IRL @ Mayo.<br /><br />The short answer is that the actions you described do not violate HIPAA. You are not covered by HIPAA in this circumstance.<br /><br />A lot of folks don't understand HIPAA, and it's cited as the basis for a lot of stuff ... it's often a convenient excuse for not doing stuff people don't want to do.<br /><br />A good resource on HIPAA may be found on the website of the US Dept of Health and Human Services, Office of Civil Rights, which enforces these regs. I recommend starting here: For Consumers – http://bit.ly/twBmAu<br /><br />OK, here's the longer answer:<br /><br />HIPAA requires that "covered entities" (CEs)- i.e., providers, payors, or health care [claims adjudication and payment] clearinghouses - not release "protected health information" (PHI) of individual patients to anyone, unless it's to other CEs for "treatment, payment or operations" (TPO) or to CEs' "business associates" (BAs) for TPO - and BAs don't get the PHI unless they've signed a "business associate agreement" (BAA) which imposes all the same obligations that are imposed on CEs by the regs directly. (BAs need to enter into BAAs with their subcontractors, too.) Every CE needs to give a notice of privacy practices (NPP) to patients up front, detailing how they use and share PHI in accordance with the regs.<br /><br />At #mayoragan, one situation that was discussed was the case of a nurse posting on Facebook "please pray for Timmy" or something like that, where Timmy is the newborn son of a co-worker who is a patient in her employer hospital's NICU. If she posts on her own Facebook, and her profile identifies her as an employee of the hospital, that's a potential problem for the hospital (her actions as an employee could be imputed to the hospital) and it's a potential problem for her as a licensed health care professional (she just posted PHI about a patient; further potential point of distinction: is she a nurse on the NICU? Is Timmy her patient?). If her personal Facebook does not in any way identify here as a hospital employee, then it's just a question of whether she has her friend's consent to share this information -- same as if she were sharing that information by telephone or in person with a friend, same as if she were not a nurse in the hospital or in the NICU. Now, if she posts on the hospital's Facebook page, this becomes a potential liability for the hospital, too. That's why hospitals should moderate, or scrub daily, their social media properties in accordance with posted policies and procedures/terms of use.<br /><br />Hope that's not too much information (or TMI, to finish up the alphabet soup of acronyms here), but since this seems to be a consistently recurring sort of question, I thought it would be worth addressing here.<br /><br />Bottom line, as peer-to-peer health advocates, you are not governed by HIPAA. If you step into another role, or inhabit more than one role simultaneously, and are a CE or have a closer connection to a CE (e.g. a peer health advocate network operating under the aegis of a health care provider network), then the answer may change.<br /><br />Keep on keepin' on.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-18306789559373540232011-11-03T14:28:48.658-04:002011-11-03T14:28:48.658-04:00That's what I thought, too, until several side...That's what I thought, too, until several side-conversations at Mayo the other week along the lines of, "Oh I busted my knee the other week--see, that's disclosing your own information. Versus, Frank broke his arm last night--that's disclosing someone else's confidential health information." <br /><br />And as peer-to-peer patient advocates, what, exactly, are we? Are we just friends, talking in an electronic living room? Are we some form of health education providers?Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-84215020602076385992011-11-03T13:15:05.489-04:002011-11-03T13:15:05.489-04:00I've always thought it applied to health care ...I've always thought it applied to health care professionals.Glennishttps://www.blogger.com/profile/07157321723496562484noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-42208619902474697322011-11-03T08:18:36.134-04:002011-11-03T08:18:36.134-04:00Thanks! As I'm sure you know, those of us with...Thanks! As I'm sure you know, those of us with rare conditions really have to be our own experts; we end up knowing more about our conditions than most medical people we see, a lot of whom have never heard of our whatever-it-is and have no idea, therefore, what the best (or any) treatment options may be.<br /><br />Most non-medical people haven't heard of whatever-it-is, either, and doctors shouldn't be ashamed that they can't know everything--no one can. <br /><br />What they can do, though, is be honest about how much they don't know and be willing and able to open up and let patients lead the way when we say, "We'd like this disease or treatment researched and if successful, implemented."Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-22899649730121615152011-11-03T03:12:44.952-04:002011-11-03T03:12:44.952-04:00WOW this is a GREAT patient action empowerment sto...WOW this is a GREAT patient action empowerment story. I have had all the same emotional experiences online and in real life in my meningioma community. I want to do something similar to push for a new standard drug therapy for low grade brain tumor survivors.<br />visit my blog at http://gbyay.blogspot.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1818870274401603400.post-32432418019138633162011-10-26T14:53:21.072-04:002011-10-26T14:53:21.072-04:00Thanks, Carolyn! Likewise, I can't wait to hea...Thanks, Carolyn! Likewise, I can't wait to hear all about your time at the Canadian Cardiovascular Congress.Laurahttps://www.blogger.com/profile/12415155948577364954noreply@blogger.com