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March 23rd, 2016

Health Care Superheroes Can Stop Patients From Peeing Blue

By Ronald Petrovich

“I am the fastest man alive … An accident made me the impossible,” says Barry Allen in the opening of The CW’s TV series, “The Flash.” Superhero Jessica Jones, now a Netflix sensation, gained flight and unearthly strength after an accident with chemicals. My mishap with synthetic substances was not as dramatic as The Flash or Jessica Jones; however, a superpower was unleashed in me more than 20 years ago.

Ron Picture FullSizeRenderI didn’t fight crime but our preschool daughters marveled after I magically converted our toilet water into their favorite color. My gift was peeing blue. This ability was short-lived. Now, I can help others advocate for themselves by using social media to ask their doctors more questions.

In the early 1990s, when we lived in Michigan, I was diagnosed with a highly treatable form of testicular cancer (Stage 1 seminoma). Upon diagnosis, my wife and I devoured information about the disease. Our best source back then, the American Cancer Society, was responsive and informative, and mailed us tons of literature.  My cancerous testicle was removed, and I underwent numerous CT scans, X-rays, tumor marker tests as well as radiation therapy, for a few months. I have been cancer-free ever since.

The medical teams were caring and had the best of intentions; however, I feel that some of the workups were just too much. I joke that I glow in the dark because of what I now consider to be excessive exams such as the lymphangiogram.

During a lymphangiogram procedure, a dye, which made me pee blue, was injected into the top of my feet and the webbing between my toes to probe if my lymph nodes were compromised. I assumed this was standard protocol and should have questioned the physician and contacted the American Cancer Society. I didn’t, because in those days, the culture was more accepting of medical recommendations and there was no instant access to information and patient groups on social media.

Back then, answers didn’t come fast enough, and we didn’t think we had the time to wait for phone calls to be returned or more literature because we were trying to aggressively beat cancer. Years later, after researching my type of cancer and speaking with fellow patients, I have not found anyone who had the same test. My feet still ache when it’s damp, and I’m always reminded of peeing blue.

Today, at minimum we can ask better questions and hopefully reduce the chances of over treatment with four steps:

  1. Seek reputable medical care.
  2. Investigate credible online information as well as print materials and journals.
  3. Connect with patients who want to share on social media.
  4. Ask questions, and then ask more questions.

I followed those steps over the past year when I experienced the power of health care in social media after being diagnosed with a genetic heart condition, hypertrophic cardiomyopathy (HCM). This created an enlarged heart muscle that blocked blood flow, resulting in fatigue and shortness of breath. My symptoms persisted under medication for several months and, then, with full confidence, I opted for open-heart surgery, a septal myectomy, to remove the obstruction.

My care at Mayo Clinic was beyond amazing. I located reliable information on the Web and accessed fellow patients in real time on social media. Talking with these people and listening to their words of wisdom shaped my questions and benefitted me emotionally. The best part was that, unlike my cancer experience, I could do this in real time or at my convenience.

I relied heavily on three groups that approach hypertrophic cardiomyopathy from a patient perspective. The first, Mayo Clinic HCM Patients, is run by dynamo Cynthia Waldman, a septal myectomy patient at Mayo several years ago. Picture of Cover of Mayo Clinic HCM patients Facebook page In her Facebook group, I learned about this disease and its inconsistent symptoms on a personal level. Many members conveyed what to expect (the good and the bad) if I decided to have surgery.

Because of my experience in Michigan, I needed to prove to myself that this procedure was not an over treatment and that it was worth the risk to improve my quality of life. Seeing so many people share their stories of positive outcomes, I became convinced that surgery was right for me. It’s been three months since my operation, and I haven’t felt this good in several decades.

In just a few examples of these Facebook discussions, one community member facilitated a conversation about changes in HCM symptoms based on diet. Another person received support after posting about presurgery jitters, while others weighed in about family testing with this genetic condition.

Another Facebook advocacy group, HCM, run by Lisa Salberg, creator of the HCM Association, connects HCM patients from everywhere. Participating in this community gave me the peace of mind that these patients were having the same experiences as the Mayo Facebook patients group.

TPicture of front page of Mayo Clinic Connect site for patients he third site that expanded my knowledge is Mayo Clinic Connect, led by a tenacious connector of patients, Colleen Young. In addition to bringing patients and families together, Colleen leads conversations in this site that offers webinars and the latest information about hundreds of health topics.

I learned about HCM through the Heart & Blood Health group in Mayo Clinic Connect and was also able to give a little bit back. Colleen has contacted other members and me on behalf of other patients inquiring about things to do here in Rochester, Minnesota. She also has asked me to share my surgical experience. This is the least I can do, because these groups gave me a deep perspective about my disease and allowed me to make informed decisions calmly and confidently.

The three women who manage these communities are not the fastest runners alive, can’t fly and weren’t victims of chemical reactions. Nevertheless, they possess freakish healing power, because they dedicate themselves to patient advocacy through social media. This makes them Health Care Social Media (#HCSM) superheroes. As a member of these groups, I will do my best to share insights when patients have questions related to my experiences, and I also promise to use my non-superpowers to prevent any more patients from peeing blue.

Editor's Note: Ron Petrovich is the Communications Director for News and News Delivery at Mayo Clinic.

Tags: Colleen Young, Cynthia Waldman, HCM, HCM Association, hypertrophic cardiomyopathy, Lisa Salberg, Mayo Clinic, Patient Involvement, Ron Petrovich, Social Media, testicular cancer

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Comment

Posted by @colleenyoung, Mar 23, 2016

Great post @ronaldpetrovich. Thank you for the lovely mention. Active and supportive patient communities have done everything from provide comfort to saving lives. I like how you underlined the connectivity between the groups that have helped you and the pay it forward motivation communities often inspire. I see this demonstrated on Mayo Clinic Connect everyday. A very rewarding part of being the community director.


Deanna Constans
@deannaconstans

Posts: 8
Joined: Feb 10, 2011
Posted by @deannaconstans, Mar 24, 2016

Great post. I’m so glad we live in a world more accepting of patient-centered care, rather than paternalistic care, i.e. “do as I say, I’m the doctor.”

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