On Thursday we received the results of the biopsy. As I posted previously the reasons for the biopsy were to see if Prograff (the medication Luke has been taking for 3 years) is hurting him, and to see if we are still dealing with same diagnosis. The surgeon called me on Thursday and said that half of the Glomerular filtering units (small holes) on Luke's kidneys are terribly scarred. The doctors are assuming that the Prograf did this to him because 3 years ago when he had a biopsy there was no scarring at all. Of course, they cannot be 100% sure if the Prograf is to blame, but we are taking him off Prograf anyway. The only other explanation is that the disease was progressing these last three years and caused the scarring. I find it hard to believe that it was just the disease progressing because Luke has been so healthy and happy. No swelling, and up till 6 months ago he was, for the most part, in remission for 2 1/2 years.
His diagnosis is still Nephrotic Syndrome, and they are still calling it Minimal Change (no change to the kidney) despite the scarring. When I asked how we could still call it Minimal Change the doctor said because half the kidneys are still untouched and he has so few symptoms. In other words they don't know what to call it. When inquiring further about the scarring the doctor told me that it is permanent damage and we must stop the scarring because now he's only working with 50%.
Once again Luke is an enigma. The doctors are baffled to say the least and it is extremely frustrating to have most of my questions answered with, "I don't know, we have never seen this before," "we aren't sure, Luke is a rare case," and my personal favorite, " well... that's just not typical..."
The doctors are amazed at how healthy Luke seems to be. He is never tired, eats like a horse, is active, and has grown 3 inches in the last month and a half!!! And here's the real kicker... He has 100% kidney function!!! The kidneys are filtering incorrectly and are "scarred beyond belief" but are functioning 100%! Thank God! The doctors also have never seen Prograf do this to someone's kidneys, especially when his levels were never toxic. He was given regular blood tests to test the levels in his blood and it was never toxic. And then there is the antibiotics. Every time Luke is given an antibiotic, whether it be for an ear infection, or most recently, strep throat, he goes into remission. When I point this out to the doctors, which I have done on several occasions, they say they have never seen it before, and that they don't give antibiotics to induce remission. So, I understand that this is not "typical" but it is a fact! It happens!! I'm not trying to get the doctors to write Luke a lifetime supply of Amoxicillin, I just want them to think about it and consider what this might mean. Is there an infection somewhere that he is constantly fighting?? It must mean something!
On Friday, May 18th there is going to be a conference to discuss Luke's biopsy. Until then he is starting a new medication called Mycophenolate, or Cell Cept. This is another transplant drug and is also used for Crohne's Disease. Just like Prograf it will turn off the aspect of Luke's immune system that is attacking his kidneys. Transplant patients use this drug to stop the immune system from attacking the new organ. The problem here is really with Luke's immune system. The immune system is working too hard and needs to back off of the kidneys. Our pediatric nephrologist also wants to put Luke on an ace inhibitor. While this is usually used for high blood pressure, it is also used in kidney disease patients to stop the progression of the disease. Like I said before, the scarring cannot continue, and while we are hoping that stopping the prograf will halt the scarring, we cannot be sure. We are starting the Mycophenolate today, and the ace inhibitor will be discussed at the conference on Friday and if there is a consensus among the team of specialists then we will start an ace inhibitor at that time.
LUKE IS HAPPY AND FEELS GOOD!!! I will post again after Friday's conference and give an update on Luke's remission, or lack there of.
