After reading every post on here, I want to share my story. My name is Laura. I am 29 years old. From the story I was told by my parents, I was a normal 8lb baby born in Illinois. 2 weeks after coming home from the hospital my mother noticed that I was not eating properly, gaining weight and was extremely lethargic. Both my parents took me back to the hospital I was born at Hinsdale Hospital in Hinsdale, Illinois and they could not figure it out. My dad had heard of Children's Memorial Hospital in Chicago, IL and immediately asked if I could be released to them. I was taken by ambulance to Children's Memorial Hospital and within a few days, was diagnosed (thru blood tests, urine tests) of having Failure to Thrive which is associated with Distal Renal Tubular Acidosis. I had a team of doctors at Children's Memorial Hospital in Neuphrology who watched me from that point on till 18 years of age. I credit my parents and that hospital with saving my life. I am forever THANKFUL!! I was put on PolyCitra at a high dosage due to the fact that I was a growing baby and child. My parents were told that if I did not take that medicine, I would have severe problems with my kidneys as well as stunting my growth. I was expected to reach 5'3" and I grew to 5'7". It was extremely important I took that medicine twice a day at the same time. It's the nastiest stuff on earth but who cares!! It worked. At the age of 14 (sometimes children outgrow this DRTA) the doctors tried to ween me off the medication, unfortunately I fell into a Hypokalemic Paralysis and found out that I needed more Potassium as well. My medicine was then switched to Polycitra-K and I had no problems! Around the age of 18, after being dismissed from Children's (they only take patients up to 18).. I was told to find an adult neuphrologist. Thru one of my doctors at Children's.. I was recommended a fantastic doctor who helped me lower my Polycitra-k to an adult dosage. I am now taking 15cc twice a day of Polycitra-k and supplementing with 3 10 MEQ's of Potassium pills twice a day. The mixture works great for me! I am happy, health, full of life, and will turn 30 on October 1st, 2008. I have had 2 kidney stones because I skipped my medicine several times, and that caused me some problems. Also, over the last 5 years, I have noticed that my hearing is going. I have lost 25 percent in both ears. I am told it is a side-effect of my condition.. but am also told I am in very good shape for what I have. If my story has helped ANYONE.. please contact me. We are a rare bunch and I would love to hear from you!!
By the way, I have never been pregnant and am concerned about it. Anyone out there who has this DRTA and has had a child? Any complications or things I should be aware of before becoming pregnant??
Please anyone, contact me at firstname.lastname@example.org
Thank you to all who have helped me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!I am eternally grateful!