Coming Full Circle- Parathyroid Peeps Meet-ups Expand!

Coming Full Circle – A series of 4 Blog Posts describing our experiences visiting the Norman Parathyroid Center as patient advocates.

Blog Post #1 – Coming Full Circle – A Visit To NPC’s Clinic at Wesley Chapel

Blog Post #2 – Coming Full Circle – Dinner with the Surgeons

This is our third post of the series…

Parathyroid Peeps regularly hold bi-monthly meet-ups in the San Francisco Bay Area to educate others about the disease as well as connect with those who are interested in raising awareness, those who are just beginning their parathyroid journey and others who simply want to become educated.

During our advocacy trip to Tampa, Florida, we held our first Parathyroid Peeps meet-up at the Marriot Courtyard Tampa Downtown where we were staying. When checking in with Alison, the Director of Sales, regarding the final details of our meet-up, we once again experience a serendipitous moment…. we learn that one of their own employees also suffered from parathyroid disease and was surgically cured. The front desk receptionist summons the employee so that we can meet her. When she appears from the back office, we can’t help but joke, “Did you catch it from all the people you’ve greeted who stay here?” She laughs, as the irony of it all isn’t lost on her either!

The Courtyard by Marriott Tampa Downtown Hotel is one of the hotels recommended by NPC and has had many out of town patients stay there over the years. For several years she’s been checking in guests at the hotel who were having their surgeries at NPC. Little did she know that eventually her blood work would also reveal high calcium and she would end up at Tampa General getting her own surgery from NPC surgeons! We asked if she reveals to patients checking in that she too has had parathyroid disease and understands their angst. “If someone is really anxious, my co-workers know they can call me up front to speak to the guest to help alleviate their concerns”, she confides.

The front desk is so used to checking in patients that upon arrival you are reminded to not eat or drink after midnight. They are also great at anticipating patients’ needs following surgery. In-room carafes that can be filled with ionized water on tap and ice packs are kept in freezers on each floor. Fruit smoothies are available for purchase at the Bistro to soothe sore throats following surgery as well. There’s also a little sundry store next to the front desk that stocks cold drinks and ice cream. The Bistro also serves light meals for breakfast, lunch and dinner, in case a patient doesn’t feel up to going to a restaurant after surgery. A small full-service bar is available in the lobby for those who are feeling up to a celebratory drink and we met a few over the course of our four night stay who were feeling well enough to do so.

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Our Über rides arrived quickly and were very inexpensive!

A complimentary shuttle service operates daily from 7am-11pm and travels within a two mile radius of the hotel, including Tampa General Hospital.  We found Uber to be a very convenient and cost effective way to get to and from the hospital prior to 7:00 am., as well as to and from the Tampa airport,  which is outside the shuttle’s radius.

 

 

We were quite surprised by the number of people who were able to attend our meet-up. There were 14 of us in attendance, some coming from as far away as the Orlando area. While several had been cured already, others were getting ready to schedule their surgeries. A few were there to become educated about the disease. One man, originally from Florida, had just returned to Tampa after years of living in the Washington DC area. His wife turned out to be one of our FB followers, and as she was unable to attend our meet-up, she instead sent her husband to ask us questions on her behalf as she suspects she has the disease. She texted him her questions during our gathering and he would in turn, text her our answers! We were happy to provide her real-time answers via her husband.

Perhaps one of the most compelling stories was from a woman who had been cured at NPC. She suspected that her sister also may be affected by the disease, so they started to investigate the possibility. Even though her blood work clearly indicates she has the disease and she has the symptoms, the sister shared that she cannot get her local endocrinologist to refer her for surgery, as the doctor does not believe she has pHPT. She is still in the process of working with her insurance to be allowed to self refer to NPC. We hope she is able to fight this battle and get her cure soon. These two sisters also brought their mother who lives in Colorado and was out visiting. They both suspect that their mom suffers from this disease. She still needs to get her blood work checked, but it does appear that she has many of the symptoms of parathyroid disease. When the two sisters inquire about whether the disease is genetic, the mother laughs as she exclaims, “they always try and blame me for everything! ”

An impromptu guest was Callie, the NPC Office Manager, and former patient from the Norman Parathyroid Center. As we mentioned in our first post, we were surprised to learn on our first day visiting their clinic located in Wesley Chapel that as a teen, Callie was diagnosed with pHPT. Both her grandfather, father and sister had also suffered from the disease.

Here is a short video taken as she shares her story. We hope that Callie will soon share her full story in a podcast that we will host on our website.

Other attendees who had been cured were eager to share their stories with the entire group. Sharing stories is a great way for us to learn from one another and also serves the purposes of helping us make sense of our journeys. While each story is unique, there are indeed common threads – everyone seems to have been ignored by their GP and it takes far too many years for patients to get diagnosed, even when they present with several classic symptoms and high calcium.

Some former patients at the meet-up brought friends along. We are so thankful we get the opportunity to educate these friends as well. We have come to learn that this disease affects many people.  If we each educate our friends, these friends will in turn tell their friends and so on. Together we can create a ripple effect which we hope will result in change…Screen Shot 2016-08-03 at 6.35.59 PM

We will not accept that we are being labeled asymptomatic!

We will not accept that healthy parathyroid glands are being removed in error by inexperienced surgeons far too often!

We will not accept that reported lab values do not necessarily take into consideration a patient’s age and therefore we go undiagnosed for years while our health declines!

We will not accept that endocrinologists tell us we have a mild case and should “wait and see”!

We will not accept mediocrity when there are advanced methods of surgical treatment available.

BECOME INFORMED! 

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