Calcitonin Drug Study at Yale

1 Jun

Some of you folks with XLH may know about the study that is currently underway at Yale University. Here’s the information on the drug study: https://clinicaltrials.gov/ct2/show/NCT01652573 Last month, I volunteered to participate in the study, because my endocrinologist recommended it, and flew to Yale in New Haven, Connecticut. There’s not a whole lot to tell, except that they collected a lot of urine from me, and did several blood draws. For those of you who hate being stuck by a needle, they actually put in an IV with stop cocks, rather than stick you 7 times. Just one stick, about 8:00 in the morning (what a way to start the day!) and the IV was left in until about 10 AM the following morning. Here’s my selfie of it:

IV with stop cocks

And because I have a friend who is a research scientist, I HIGHLY edited my photo to make it as creepy as possible, and sent this one to him:

IV photo edited

Professorgrrl went with me to Yale, which requires an overnight hospital stay for the study. She knows how flying negatively affects me. Plus, this would be the first time in my life (except for when I was born) that I had ever spent the night in a hospital, which is pretty rare for any middle-aged woman. I was not worried about the hospital stay. In fact, the thing that worried me the most about the trip was that I might throw up on the plane. So, Professorgrrl found a two-hour direct flight, drove me to the airport, and steered me to my seat, while I enjoyed the benefits of Dramamine. My first nurse at Yale said that Professorgrrl was my “Sherpa.” That’s about the truth of it. There are times I definitely need one!

Landing in Connecticut

Landing in Connecticut. I am happy to report that I did not throw up, thanks to Dramamine.

So, how does one blog about a drug study for a rare disease? There’s not a whole lot I want to say, except the nurses, the research assistant, and the doctor (whom I referred to as a “rock star in the XLH world”) were all so incredibly nice and wonderful and knowledgeable. And compassionate. And I’m sure I could think of several other glowing adjectives for them. I felt very cared-for and listened-to and understood. Many people, not just folks with XLH, don’t always get that from their medical caregivers, but I sure did.

I have been taking the calcitonin nasal spray (or placebo) since then, and will continue to take it for the three-month study and then return in August to Yale. There are two local lab visits in the middle of the study (blood and urine) and my first one will be next week.

So, that’s it. Pretty cut and dried, nothing exciting. And when that happens in my blog, well, I post photos.

New Haven is a beautiful city, with lots of very interesting architecture. We were able to do some walking on and near the campus, eat at a good restaurant (did you know New Haven is known for its good pizza???) and go to the Yale University Art Museum. Enjoy the photos!

Yale University tower from the Art Museum window

Yale University tower from the art museum window.

Yale Art Museum window

Yale University art museum window and steps. Those of you who have followed my blog know that I have a “thing” for climbing the steps of lighthouses. I don’t have a thing for climbing steps in a museum, however. I used the elevator.

Yale University building

A building on the campus. They don’t build buildings like this anymore!

The tower at Yale

The tower on the Yale campus is ornate and beautiful!

Come Unto Me

Engraved above the window of this church is a paraphrase of Matthew 11:28. “Come unto me all ye that travail and are heavy laden and I will refresh you.”

Sunset at Yale Hospital

View of the sunset in New Haven from my hospital room. In the distance, you can see the mountain, Sleeping Giant.

Sun sets on the Yale University tower

View of the tower at sunset from my hospital room.

Looking out the Yale University Hospital window

Sunrise view out the window of my hospital room.

Copyright 2014, S.G. Hunter and Banjogrrldiaries

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2 Responses to “Calcitonin Drug Study at Yale”

  1. mudtherapist June 2, 2014 at 10:49 am #

    Glad all went well! Lovely photos, and great job on the creepy one!! 🙂

    • banjogrrldiaries June 2, 2014 at 11:39 am #

      Thanks! It’s nice to be able to edit photos from a hospital bed!

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