Tuesday, October 2, 2012

Back in Business

I got news at the end of last week (while Stephen and I spent a few days in York), that Stephen's second culture for c-diff came back negative!  That means, as of last Friday, September 28th, we were able to start accepting kidneys again!  Holla!!!  So now I'm back to jumping up every time my cell phone rings.

I'm still not 100% convinced Stephen ever had c-diff because he never really exhibited any of the symptoms, but now I just have to keep hoping and praying that the next culture remains negative.  They have to have two negative cultures to start accepting kidneys, but the real test will be to see what happens once he's off the antibiotics for a week.  He's still taking antibiotics to make sure they good and kill any bugs remaining in his tummy.

And we go to CHOP tomorrow (Wednesday) for the combined kidney/liver clinic so if somethings changed between last week and this week, at least we'll know.

Also, I wanted to share a guest blog post I wrote for the Dialysis Patient Citizens; a non-profit organization that advocates for dialysis patients and educates the public on dialysis and other kidney-related issues.  I am a Patient Ambassador, on behalf of Stephen, and they've asked me to guest blog on The Patients Voice once a month about what it's like to be a parent of a child on dialysis.  Yesterday was my first post, so it was an introductory post about Stephen, but each month I'll talk about a different topic such as learning peritoneal dialysis and how we cope with having a child a child on PD.  I'm pretty excited about it and hope that there's someone out there that finds it helpful and/or informative.

Below is a copy of the post, but you can also check it out here: 


Stephen’s Journey – October

By Lindsey S. Guest Blogger

Hi there – my name is Lindsey Schwartz and I’d like to share with you my family’s unique perspective on dialysis and kidney disease. Each month I will share another piece of our journey so please look for my articles under the Guest Blogger category. It’s a journey I never imagined we’d find ourselves on, but so proud that we’ve made it this far. My perspective on dialysis is not through my own or my husband’s battle, but through my 21-month old son’s battle with end stage renal disease and peritoneal dialysis. My hope is that by sharing Stephen’s story with the world, we can help other’s understand the wide-reaching affects that kidney disease has on the world, and what dialysis looks like to a family with a young child on peritoneal dialysis.

Our journey began in October 2010, when I was 27 weeks pregnant with Stephen. During a routine ultrasound at my obstetrician’s office, it was discovered that I had no amniotic fluid because Stephen’s kidneys has stopped functioning. After further ultrasounds and testing, Stephen was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARPKD); a very rare and most of the time, deadly form of PKD (this diagnosis would later be confirmed through genetic testing). We were given the very devastating news that because Stephen would be without amniotic fluid for close to half of my pregnancy, he would not survive. Amniotic fluid is vital for lung and organ development and without it; Stephen would not be able to breathe once born. 

We saw specialist after specialist throughout the Northeastern U.S. and were given the same grim prognosis everywhere we went. But, we had received some hopeful news from the nephrologists that kept us fighting for our little boy. As long as Stephen had enough lung function to get him past the few days after birth, the surgeons would remove both of his kidneys; place a peritoneal dialysis catheter in his little belly, and a feeding tube in his stomach. And then we would begin the very long and very bumpy journey of getting Stephen healthy and big enough for a kidney transplant.

To most people, I’m sure this would sound devastating; having your newborn baby’s kidneys taken out and doing dialysis. And then having to do dialysis every single night of his life for 12 hours! But for my husband and I, this was the best news we could have heard: that there was a solution to this horrible problem. So we began hoping and praying for a miracle that our little boy would be able to breathe and be strong enough to endure the surgery. It was a very long two and half months until Stephen was born, but on January 4, 2011, we received our precious miracle. And then six days later, Stephen had a double nephrectomy to remove the large and cystic kidneys to make room for his lungs to grow. One day later, he started peritoneal dialysis and so our journey with dialysis began.

Our lives, just like the lives of any newborn baby’s parent’s, have changed forever with the birth of our son. But our perspective on life is different than most. My hope is that over the coming months, I can share with you how we’ve weathered the ups and downs of dialysis; learning peritoneal dialysis, the infections, the late night-ER visits and calls to 911, the eating challenges, the insurance woes, and ultimately our road to Stephen’s transplant. Through Stephen’s story, we hope to help others who find themselves challenged by the thought of beginning dialysis or who just might need a little pick-me-up! And ultimately spread the word of the importance of organ donation.

If you’d like to read more about ARPKD, peritoneal dialysis, or just check-in to see how Stephen is today, please check out our blog at: http://www.stephens-journey.blogspot.com

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