We will be traveling back to Lucile Packard Childrens Hospital at Stanford in Palo Alto, CA on January 7-8. I had my first evaluation there in August of 2007 and they are GREAT. I still don't know all of the tests that they will be performing during this visit, but I should receive my itinerary soon. Stanford has one of the top kidney transplant programs in the world. People travel internationally for their superior steroid-free protocol transplant program. I really like my dialysis nurses at Childrens Hospital in Aurora, CO (Ok, most of them, anyway), but I hope to one day, before I turn 18 (hopefully), get my kidney transplant at Lucile Packard Childrens Hospital at Stanford. I have visited several other hospitals and Stanford is my favorite.  This is very fortunate, because although I have good medical insurance and Childrens Hospital in Aurora, CO is the only Childrens Hospital in an 8 state region that performs dialysis and kidney transplants for those of us under 18, my dialysis is covered by the insurance company, but my kidney transplant would not be covered at Childrens Hospital. My mom says that I am a million $ kid, but she can't afford $500,000 for a kidney transplant that wouldn't be covered by insurance. This is one of the reasons we checked out various out of state hospitals.  I will update you with more information as it becomes available.

I beeped a lot today in dialysis, which is a bad thing.  They closed my lines with more heparin so hopefully I will run more smoothly on Monday.  Have a great weekend and thank you for visiting my website.

-Jaclyn

Truly a heartwarming story.  I love these docs that are so passionate about their profession, going way beyond the call of duty. Great Job!

http://news.bbc.co.uk/2/hi/health/7542404.stm

Today was a tough day for Jaclyn.  Her dialysis lines clogged and after several tests, no one could determine why they clogged.  Hopefully, she will run  smoothly on Wednesday. She has clogged before and the tubes just about burst and she unvoluntarily donated more than a quart of blood. Please pray that things are back to normal on Wednesday. Cathedars are meant for short term dialysis and none of us thought Jaclyn would be on dialysis this long. She is approaching her 1 year anniversary Jan 2nd.

The good news of the day is that Jaclyn has grown considerably in the past month. She is currently 4'11"!!!! 400 shots of growth hormone and 4" in 14 months!  I have been stretching her all month! Its working!!

dialysis

HI! Here I am.....on dialysis again. I thought that I would post a photo of me on the wonderful machine that keeps me alive (for now)! However, I am not feeling well today...so I will blog on Friday and try to explain how this big machine does the job my kidneys were supposed to do, those slackers. Thanks for your prayers, support and for visiting my web site.   

Sigma Alpha Epsilon 2008 Duck Dash for Jaclyn!!!!

What a great bunch of guys at Sigma Alpha Epsilon, CU - Boulder, Colorado and the girls that organized the Duck Dash of 2008, Holly, Kaylee and Erin, truly three amazing angels! The Duck Dash was held at SAE Fraternity in Boulder on Wednesday, October 15th 2008. Between 600-700 people attended the Duck Dash in order to help raise funds for Jaclyn!  What a great event! So many of the merchants in Boulder donated food and prizes. For those of you who have never been to a Duck Dash, let me explain. The rubber ducks are sold at the entrance for $5 and each duck has a number on the bottom. The Ducks waddle into the moat/little river that runs along the fraternity, and they float,swim,ducky paddle to the finish line. About 30 ducks race each time and great prizes were won by many.

Hi, my name is Jaclyn. Thank you for visiting my website. My mom and I will try to keep you updated on my journey to get a new kidney. My journey started when I was born, but nobody knew it. It wasn't until I was about 8 years old that I started feeling dizzy a lot, but my symptoms confused all of the doctors. My mom took me to see Nephrologists, Hemotologists, Endocrynologists and Cardiologists at several different hospitals and nobody could diagnose me. It was very frustrating. In Feb 2007, I was feeling very sick again and had some swollen glands on my neck. My mom took me to my PCP and they ran some blood tests. That is when they determined my kidneys were failing. Dr. Cadnepaphornchi (Dr. C, a super smart Nephrologist at Childrens Hospital in Colorado) sent some of my blood work to Dr. Hildrebrandt, Professor of Pediatrics and Human Genetics at the University of Michigan, where he diagnosed me with NPHP type 1 (juvenile nephronophthisis), which causes kidney failure between the ages of 13 and 19.

On Jan 2nd of this year (2008), I started hemodialysis to clean the toxins out of my blood three times a week at Childrens Hospital in Colorado. It takes about 1/2 hour to get hooked up to the dialysis machine, 3 hours to drain and clean my blood and another 1/2 hour to unhook from the machine. I feel very weak and have awful headaches during and after dialysis. I hope to get a new kidney soon so that I can enjoy a wonderful, healthy life!!

Thank you from the bottom of my heart for all of your prayers and support.....and for visiting my new website!