Coming Full Circle – A series of 4 Blog Posts describing our experiences visiting the Norman Parathyroid Center. This is the first post of the series….
This past week we experienced the “field trip” of a lifetime … we revisited the Norman Parathyroid Center where we each had our surgeries performed- Barbara in 2011, Joyce in 2013 and Sophie in 2014, but THIS time we were collaborating as advocates to raise awareness of the disease rather than as patients. While physically cured by our surgeries years ago, there was an unexpected emotional healing that occurred being on the “other side” now and coming full circle in our journeys. We are creating four blog posts about our experiences – what we both observed and learned. We hope you enjoy!
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On Day 1, after obtaining our hospital clearances at Tampa General Hospital where all surgeries are performed, we drove approximately 20 miles north to Wesley Chapel where the Norman Parathyroid Clinic is located. While we knew there were behind the scenes staff coordinating patient intake, we couldn’t fully appreciate the magnitude of what is required to facilitate the 12-14 surgeries that are scheduled per day until we saw it first-hand. In fact, the venture has grown so much over the last few years, that their administrative staff has tripled in size and thus have outgrown their original office space and have expanded to a second building.
Jayme (L) Patient Chart Coordinator with Callie (R), NPC’s Office Manager
Approximately 20 staff are employed to carry out the myriad of duties required to register patients. They include Callie, their Office Manager, Kelly, a registered nurse who handles initial intake questions, Jayme who is the lead for five Patient Chart Coordinators assigned to patients alphabetically by last names, and Amy, who oversees Insurance and Financial Management. We also met Emily, a newly appointed Research Assistant, who is currently gathering data of prior lithium use in patients.
The Peeps with Kathy (2nd from left) The Surgery Scheduler!
And then there is Kathy… the person every prospective patient wants to hear from, for she is the (drum roll please) Surgery Scheduler!
We were pleasantly surprised to recognize some names of people we communicated with during our own patient registration process. It was nice to finally put a face to the name. Many of these employees have worked here for years and all are dedicated and passionate about helping patients get the answers they need to move forward towards a surgical cure. We asked what questions patients typically ask and they include…Do I have this disease? What additional tests do I need to confirm a diagnosis? The Calcium Pro App says I likely have this disease, so what do I do next ? Will this be covered by my insurance? Do you have any type of financial assistance available? Depending upon the question, then your call is directed to the correct specialist.
In addition to housing the administrative staff, the clinic also serves local patients who walk-in for consults. While patients travel from around the world to have their parathyroidectomies performed at NPC, there are plenty of local endocrinologists who refer patients to them, so the office also serves as a typical doctor’s office as well. The day we were visiting, Dr. Jose Lopez was the surgeon on duty, meeting with patients face-to-face to discuss their cases.
Callie, Office Manager
Perhaps the biggest surprise was learning that Callie, NPC’s Office Manager, knows a whole lot about primary hyperparathyroid disease and that’s because this disease has hit close to home. There is a history of pHPT in Callie’s family, and genetic conditions (such as MEN-1 or familial hyperparathyroidism) are known rare causes of the disease. On the ride to Wesley Chapel, Callie shared her grandfather and father’s stories and then her own unique story about how she was diagnosed just prior to heading off to college. Callie is grateful that her family, given the obstacles they faced in trying to get their own diagnosis and surgical cures, researched to find the best team of surgeons for her. They sought out the services of NPC so that she could receive the best care possible. As a result, her story has a very different ending than their own. Callie is grateful that these experts were in her “own backyard”. When we heard Callie’s story we felt compelled to invite her to our meet-up the next day so that she could share her story with those in attendance and she graciously accepted. We have an excerpt from her story that we will be including in an upcoming blog about what transpired at our meet-up that was held at the hotel we stayed at.
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If you live in the Tampa area and have visited Wesley Chapel for a consult, perhaps you would like to share your experience in the comments. If you traveled from afar to have surgery, what was it like for you to become a patient from a distance?
Up next…. We meet the surgeons! Link to the second post in our 4 part series.
We know that often the first major obstacle for patients who have primary hyperparathyroid disease face is getting an accurate diagnosis in a timely manner.
This past week on a beautiful, sunny, blue-sky afternoon, with a view of the San Francisco Bay in the background, we held our bi-monthly Para Peeps meet-up at Chevy’s in Emeryville, CA. Our little group has now grown to 15 and we were please to have 8 of these members in attendance this time! At one point we all realized that this was our first time ever being surrounded by so many with “peep” scars. We laughed as we all pointed and showed off ours, noting that they are nearly invisible. For some of us years have passed since we had our surgeries, others months, while one member just got back from traveling across the country for surgery less than a week ago. She was in good spirits and was feeling energetic, happy to be moving forward towards improved health.
I used the 
There are several issues that we would like to shed light on through this social media platform. Below are just a few examples of the issues we would like to raise awareness about by tweeting. We believe that our efforts would be far more effective with your help.
PARAthyroid PEEPS 