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The Culpepper Magic
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The Culpepper Magic

Why I Walk

I did not myself experience renal failure, but I endured the journey alongside my husband, Sean, who has dealt with Alport's Syndrome his entire life.  This disease affects his hearing, vision, and kidney function.  His mother and his grandmother also experienced kidney disease (unrelated to Alport's Syndrome) and went through kidney transplants. 
When my husband was 15 years old, he had his first transplant.  He was blessed with a kidney at that time from his father who was a match.  That kidney went on to function well for 19 years before it finally started to decline in function in 2018.  During that time, we had become engaged to be married, and the wedding was set for May 9, 2019.  Several medical and insurance factors delayed the process of Sean getting the attention he needed and to get on the list for a donor. He eventually got scheduled for peritoneal dialysis. 
He had the surgery to implant the catheter in his abdomen in March 2019, but by this time he was very sick. The clinic started testing the catheter a week after surgery to get him started as soon as possible (normally they need to wait at least 2 weeks for full healing).  Unfortunately, there were complications during testing, and it was not functioning properly.  He had to be rushed to emergency surgery so he could have a catheter placed in his jugular vein, so he could get started with hemodialysis right away. 
After this surgery, the insertion site where the tube went into his neck and the area where the exit tube came out of his chest were slowly and uncontrollably bleeding for the next 48 hours as his blood was not clotting properly.  They still proceeded to do the hemodialysis treatment anyway.  The doctors were finally able to get the bleeding to stop, and then performed another surgery to fix the peritoneal catheter in his abdomen.
Once he was out of the hospital, I would drive him 3 times a week to a hemodialysis clinic and he would sit in a chair for 4 hours straight while his blood was cleaned in a large machine.  This went on for weeks while the other catheter healed.  I wondered if we should postpone the wedding, but my husband told me not to because he still planned to get married on May 9th  
Finally, we were able to get him in for training on the peritoneal dialysis machine a few weeks before our wedding.  This time it worked!  For months my husband would sleep while hooked up to a Baxter machine as the machine would clean his body from toxins like the kidney would normally do. I would keep inventory of the dialysis bags of solution and schedule the deliveries each month.
Shortly after our wedding, a relative from my husband's side of the family, Lily, decided she would get tested to see if she could possibly donate one of her kidney's to my husband.  She was not blood related but she ended up being a good enough match for them to proceed with further testing. 
By November 19, 2019, my husband and Lily were in surgery at UCLA, and it was a miraculous success!  The doctors told us that it was "weird", because they weren't even done hooking up her kidney in his body yet, but it started working immediately!  Sean and his donor healed quick and were out of the hospital in just a couple of days.  The catheters were all removed from Sean's body!
God performed a miracle that day and we have been so excited and blessed to share this testimony with so many people!  It has been 3 years since the 2nd transplant and his kidney is so strong!  He is a new man and it just brings me so much joy to have my husband functioning at 100%, and to see him be a father to my stepdaughter, Lilliana, each day is a miracle!  
This is why I walk.  I walk to support my husband in the journey that he conquered by the grace of God, I walk to support my mother-in-law, Kismet, I walk in loving memory of my husband's grandmother, Naomi, who I didn't have the privilege of knowing while she was alive, and I walk for all of the loved ones in your life that have experienced the difficult road of kidney disease and the challenges that come with it. 

Are you with me?

Please consider supporting my efforts with a generous donation. 
OCT
7

From dialysis complications to kidney transplant success and the journey in between!

Peritoneal Dialysis training with Daddy and his little helper :)

Transplant Day 2019!

Post transplant surgery December 2019!

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