Wednesday, March 27, 2013


Playbaby's Mr. March 2013
Stephen Schwartz

Stephen Charles Schwartz
Place of birth: Fairfax, Virginia
Age: 2 years, 2 months
Height: 2'8"
Weight: 30 pounds
Likes: Ice, planes, choo choos, trucks, Elmo, bah bah's, Monkey, playing ball, and chasing Dog Dog
Dislikes: Food, scary movies, and unfriendly people
Favorite TV show: Sesame Street
Favorite book: Goodnight, Goodnight Construction Site
Favorite song: The Wheels on the Bus

*This post is courtesy of Stephen's Mom and Dad 

Friday, March 15, 2013

World Kidney Day on The Hill

Happy (belated) World Kidney everyone!!!  Yesterday was World Kidney Day and I had the awesome opportunity to spend it on Capitol Hill with Dialysis Patient's Citizens, advocating for dialysis and transplant patients.  It was a truly awesome, albeit exhausting day!

I got connected with Dialysis Patient's Citizens (DPC), a nonprofit agency that advocates for and provides educational support to dialysis patients around the country.  Last year after applying to become a Patient Ambassador, I believe I became their first and only voice they've ever had for pediatric dialysis patients and I'm quite proud and excited to be their voice.  I've also been guest blogging/writing for them about what it means to be a pediatric dialysis patient and caregiver. You can read my posts by clicking on The Patient's Voice.

Once a year, DPC does a fly-in to DC, where they bring in Patient Ambassador's from all over the country, from all walks of life, and all ages, as well as other dialysis-industry people, and they all spend the day on Capitol Hill advocating for different issues that affect dialysis patients.  This year the four main issues were:

  1. Providing adequate funding to dialysis patients
  2. Co-sponsoring the Comprehensive Immunosuppressive Drug Bill (extend Medicare coverage of immuno-suppressant drugs for transplant recipients past the 36 month mark) that has been introduced into the Senate (Senate Bill 323)
  3. Asking Congress to join the Congressional Kidney Caucus
  4. Inviting our legislators to come visit a dialysis clinic to better understand the needs of dialysis patients
Throughout the day, myself along with one other Patient Ambassador (a young woman who had received her first kidney transplant at 17, and had just received her second transplant from her husband last year), and four others from DaVita, traveled all over the Hill visiting with legislative aides and correspondents from Senator's Kaine (VA), Warner (VA), Mikulski (MD), and Cardin (MD) offices, as well as Representative's Cantor (VA), Wolfe (VA), and Cummings (MD).  At each stop, myself and the other Patient Ambassador would share our personal stories and relate it to why it was important to co-sponosor the bill. And the folks from DaVita would give the number/statistical side of things.  I think we were a perfect mix together and were really able to engage most of the people we met with.  Two could have cared less, but that's Washington, right?

It was also really educational for me as well to see first-hand how this process works and really how things actually work and get done on Capitol Hill.

But most of all, I got to do what I love to do the most, and that's sharing Stephen's story and the story of all of the other children and their families that I know who struggle through chronic kidney disease.  It's always amazing to hear how the pediatric patients are often times forgotten about because they make up such a little piece of the dialysis puzzle (1% of all dialysis patients) and the Medicare-reimbursement puzzle too. But I love when people's jaws drop open and eyes pop out when I tell them about Stephen and show them pictures of his journey.  My heart just swells when I get to brag about how awesome he is!

Our guide throughout the day yesterday though was a woman who advocates for and who works with the American Association of Pediatric Nephrology.  I'm pretty sure they put her in our group for a reason and I totally appreciated that! I hope that she and I are able to work together in the future on some more patient advocacy issues related to pediatric kidney disease. God knows these little guys and gals need a voice!!!

Group picture in the morning before our crazy day began.

Here is our group, minus one member, after meeting with an aide from Senator Warner's office who was very engaged and knew quite a bit about dialysis.

My "flair" for the day.  I proudly wore my Stephen Charles Schwartz ARPKD awareness pin, the Donate Life pin, and the DPC pin.

Friday, March 8, 2013

This Week in Pictures

Not much new to report on the medical front, so I thought it was high-time I shared some recent pics of Stephen!  Enjoy!!

Stephen and Mabel admiring the snow on Wednesday morning.  The western DC suburbs got snow (we got somewhere around 6"), but Snowquester was a bust inside the beltway.

Stephen went to the dentist for the first time yesterday.  This is his before shot and the next is the after shot.  You can see a remarkable difference!  We thought his teeth were stained so yellow from both the kidney disease and all of the medications.  But it turns out, that it's really because he doesn't eat.  Eating helps to get rid of plaque and "junk" that builds up on our teeth.  It took three people to hold him down for the dentist to "scrape" his teeth, but I think it was definitely worth it!  And Stephen survived despite what the "after" pic shows :)  The tears came from Mommy prying the camera away from someone's little fingers.

Helping Mommy decorate the house for Spring and Easter.

Helping Daddy shovel the driveway

Checking out the cool new library around the corner from our house.

Hangin' at Mimi and Poppy's house in PA for a few days last week.