Kidneys affected by nephrotic syndrome have small pores in the podocytes, large enough to permit proteinuria (and subsequently hypoalbuminemia, because some of the protein albumin has gone from the blood to the urine) but not large enough to allow cells through (hence no hetmaturia).
This horrible definition is what my baby boy deals with everyday. He was diagnosed on September 9, 2006 at the age of 8. He had been retaining fluid but we had no idea what was causing it. After seeing that it had gotten to a point that seemed dangerous I called the on call nurse at the doctors office. She told me the most frightening thing a mother could hear, "Mam, either the valves to your sons heart have shut down or his kidneys have shut down. I suggest you get to the hospital right away and I wouldn't just go to any hospital, you need to go to Texas Children's." And, we were off. I was scared out of my mind. By the time we got to the hospital my son's privates were so full of fluid that they were transparent. We were put in a room right away and immediately they started running test. Within a hour they came in and said, "Mam, your son has Nephrotic Syndrome. I am so sorry, we are admitting him and you will learn more within the next few days." The only thing I could think of saying is, "Can you fix it?" "No, we can treat it but there is no cure." I had no emotion at that time. I didn't want Tyler to see my fear. The next few days, weeks, months were a whirlwind full of educating, doctors visits, hospital stays and trial and error with medications.
Tyler is now stable. We know what we can and can not do. It is a part of our everyday life. Tyler stays on a 2g of sodium a day diet, 1L of fluids and lots of medication. Tyler is what they call steriod dependent. He is on a medication called cyclosporine which is supposed to be his daily maintainer medication. He is also on predinisone. He is supposed to only be on prednisone during a relapse and then tapper off of it as he goes into remission. The problem is....his body relapses everytime we get on a low dose of predinisone. So, everytime we think we are coming off this devil drug; we don't. Prednisone causes puffy cheeks, weight gain, mood swings, and is just a horrible medicine for anyone to have to be on. Tyler gets excited when we get to a lose dose of the prednisone because he starts to lose his cheeks, lose weight and feel more like himself again. As you can imagine being in jr. high the kids are pretty critical of him changing. It hurts my feelings because when he is low on prednisone and his weight is low, the girls flock over him and then he goes back up and he gains more weight and then all the girls just want to be "best friends". Not to say that I want him to have girlfriends but you know as a mother it is heartbreaking. Well, last week we were down to 20mg every other day, his puffy cheeks are gone, his weight is under control and we had been in remission for about six months. As of last Monday morning he has relapsed AGAIN. Doctor originally started him back to just 20mg everyday and now we are back to 40mg everyday and I am sure soon we will be back up to 60mg. This gets so frustrating. I hate this for him! But, such is life. The more relapses he has the more damage that is done to the kidney and the closer we would be to a kidney transplant.
Please join me in prayer that he goes back into remission soon and before we have to go back up anymore on the prednisone. Kidney diesease is something that a lot of people do not acknowledge and most people do not realize how it effects people's everyday life. Please become a supporter in the National Kidney Foundation and make kidney disease more visiable to people. Help donate to find a cure!
Go to http://www.kidneywalk.org/ and follow the prompts to Houston Kidney Walk and to Team Tyler and sign up to walk with us today. If you are not able to walk with us a simple donation would be wonderful!
BEATING NEPHROTIC SYNDROME ONE DAY AT A TIME!
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