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

Comments

  1. Amazing story. My husband (53 years old) was just told today that he should start preparing for dialysis. We have choosen to do peritoneal dialysis and while it seems frightening, this just proves anyone can do it. I pray for you and your little boy.
    Karen Svoboda

    • Yes, Karen….you and your husband can do it!!! It’s really easy once you get the hang of it and will allow you the flexibility to do pretty much anything you want and go anywhere you want!

  2. Thank for sharing this. It’s inspirational to me and my readers at DevonTexas.WordPress.com. I will post a link to your blogspot on my blog.

  3. Just desire to say your article is as astonishing. The clarity in your post is simply cool and i can assume you’re an expert on this subject. Well with your permission let me to grab your feed to keep updated with forthcoming post. Thanks a million and please keep up the gratifying work.

  4. Maureen DeArmitt says:

    Hi Lindesy, This is Maureen DeArmitt. I work with your husband and your father-in-law at Wells Fargo. I met you when you brought your precious son into the office a few months ago. I’m the one who brought my husband (Jake) up to the lobby to meet Stephen. Of course, we fell in love with him immediately. Who wouldn’t?

    Bill was sharing with me about Stephen’s journey and I just wanted to let you know that we are praying for you and we would gladly donate a kidney if we were a match. Unfortunately, we are both Rh-, but I was wondering if I could post this on Facebook to my friends to see if we could find a match?

    I also wanted to share with you that my nephew was also born with Polycystic Kidney Disease and he also had to have one kidney removed shortly after birth. I am happy to say that (even though he was never supposed to play contact sports), Spencer is a heathy 21 year old, who loves to ride skateboards, play football, the violin, as well as many other activities. He enjoys a very full life and he is very loving, smart and athletic. I would love to “friend” you on Facebook and introduce you to my nephew, Spencer Christian Ray.

    In the meantime, Jake and I, as well as the rest of our family will be keeping you, Bill, Steven and the rest of your family in our thouhgts and prayers. We hope and pray that it is just a matter of time before Steven gets his new kidneys and resumes his wonderful life! God bless you Lindsey, Bill and Steven and thank you for sharing your journey with us.

    • Facebook has become a great place to look for a kidney. If there is anything I can do to help you, just ask. I will be glad to post your need on my page and on my NONO SLEEVE page, which is a sleeve that protects fistulas from medical mistakes, like BP cuffs, IV’s being applied to your lifeline arm and damaging the fistula and even preventing death if a rupture is caused by these things.

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