We got Luke's biopsy results today and they were what we were expecting and hoping for. Luke's kidneys showed Minimal Change. There is no scarring or damage to the kidneys. So on to plan B. Luke will now begin to take Prograf. Prograf, also known as Tacrolimus, is a transplant drug. It is given to patients who have received a kidney transplant to reduce rejection of the graft. In other words this drug attempts to stop the body from attacking the new organ. It works by suppressing one aspect of the immune system. Why this works for some Nephrotic Syndrome patients is not known for sure, but it does work for some, and puts them in remission.
Luke will need to get a blood test every two weeks. His levels have to be within a very narrow margin for the medication to be safe. In other words there is not much difference between the blood level at which it is safe and the level at which it is not. The side effects are not too scary if we are on top of things. If the medication is given every 12 hours and Luke gets his blood tests at the same time every two weeks, and his levels are safe, then the worst we need to watch for are swelling, vomiting, headaches, high blood pressure, and risk of infection, because of the weakened immune system. Sounds bad, but for Luke this is cake! Long term use of this medication gives higher risk of cancer later in life and could worsen kidney function.
Luke will begin this medication on Wednesday because we needed to go to a specialty pharmacy and they cannot produce until then. Luke will also be taking a baby aspirin every other day to reduce the chance of a blood clot. And of course that lovely Prednisone is still on a taper, and will be until the end of march when he will remain on a very low "maintenance" dose for some time.
Luke has been in great spirits as of late, and the Prednisone is at a low enough level that we are starting to see his little face showing through. He has not been too bloated and all in all feelin' fine.
Please pray for Luke to be strong and continue to breeze through whatever may come next.
I hate to repeat a quote, but this is a very fitting one, and Lexi is screaming, and Luke REALLY needs to go to bed!
"Life is all about how you handle plan B."
-Anonymous
