Dialysis Complications

Evan has endured 17 surgeries. Most attributed to complications of dialysis, a necessary treatment to sustain Evan’s life until he’s ready for a kidney transplant.

There are two types of dialysis:

1) Peritoneal Dialysis (PD) - basically places a sugar water solution into the cavity that houses your organs. The solution attracts fluid from the body and the lining of the cavity acts as a natural filter. It's a super gentle method where you put the solution in via a catheter, allow it to sit for a while, drain it out and repeat. You continue to do this for however long is needed; usually anywhere from 8-14 hours. It's done everyday and can be done at home. The downside is that body cavity has no antibodies, so you can't get dust, dirt or anything in there or you'll get violently ill. It's a clean technique, as close to sterile as possible.

2) Homodialysis (HD) - this is done at a center, for the most part. For babies it's rare to find, but certain hospitals will do it. There are two in the LA area that provide outpatient HD. HD takes the blood out of your body, runs it through a machine to clean it and returns it back to you. A treatment runs usually from 3-4 hours. People are usually dialysed 3 times a week. This treatment is exhausting, harsh on your body and drastic changes can happen. One can experience cramping, the feeling of falling, and their blood pressure could drop so low they go comatose.

Our first choice for Evan is PD. Unfortunately, Evan’s body attacks peritoneal dialysis catheters; he’s had 4 fail, endured multiple revision surgeries and numerous complications. PD just doesn't work for Evan; fortunately HD, does.

Evan received his first HD catheter on January 21st, 2010. The next day he was transferred to the PICU of another hospital, the “Best in the West” for Pediatric Nephrology. He participates in 3 hour treatments 4x a week. Babies are fragile, especially when it comes to HD. I've seen him cramp, shake and scream in pain. I've watched him go limp when is blood pressure's bottomed out. He's lost his internal right jugular vein due to scar tissue from two HD catheters and is on his 3rd catheter, threaded through the left internal jugular.

His care is complicated and he is fragile, but he’s continued to thrive. In spite of everything, his life is full of love and positivity. He doesn't understand that what he goes through is any different than what we endure. His trips to dialysis for all he knows are equivalent to going to Grandma's. The staff treats us like family and really makes the best of his situation. He's their baby. We're truly blessed to have the resources and team that we've been given.

And the end is in sight. Evan has reached the weight necessary for transplant. He's been placed on the transplant list and undergoing his work-up.