Early last year my daughter Taylor, who is now twelve, went for a normal annual physical and her blood testing came back with higher than normal levels of Creatinine. This was not too much of a worry to our family doctor as she was just slightly out of range but he still sent my wife and daughter to a pediatrician and some more testing. While time went by and we waited for the appointment a few weeks later I did a little Googling around and found that this could be a sign of some kind of kidney issue but it was really vague to us at the time.
My wife and daughter went to the pediatrician a couple of times and then got sent to a specialist and then finally to our children’s hospital for more testing and everyone was very indecisive about what was happening.
Finally at one meeting last November that just Taylor and my wife Michelle went and had more testing and the doctor let them know that Taylor has Nephronophthisis and would have her kidneys fail and need to have a kidney transplant. Not good news and I still feel bad that I was not at the doctors appointment.
Nephronophthisis is a genetic condition so Michelle and I are both carriers of a bad gene and because of this there was a 1 in 4 chance that either of our kids would inherit the two bad gene halves. Taylor did, we think Jaiden or son did not. This form of kidney disease affects kids between the ages of 8 and 14 and the odds are really low, about 2 kids out of 100,000 would get this, and of course you don’t catch it, you are born with it and it just shows as you get older.
So since last November we have been learning a lot and had a lot of hard times with Taylor’s kidney disease. Taylor is a bit scared of course like any 12 year old should be. My wife Michelle is always looking far ahead and nervous about what the future holds, and I am day to day. Every day that Taylor feels well I am happy and every day that she is feeling unwell I feel terrible for her.
So far since the Nephronophthisis diagnosis Taylor’s kidney function has dropped from about 45% to 28.6% and as we watch the kidney function drop we get more and more nervous but the doctors stay level headed and are keeping us informed on the next steps for us and Taylor and meeting with us on a monthly basis. Here in Calgary Alberta we have a Nepherology clinic at the Alberta Children’s Hospital and so each monthly meeting there we meet with a psychologist, a dietician, a pharmacist, and the kidney doctor. They are fantastic and I feel like we are in great hands.
So far we have not had to change Taylor’s diet at all (no sodium restriction), and she has to take a few vitamins and on Sunday nights she get the good fortune of having me give her an Eprex shot. Also Taylor has to drink a ton of water as her kidneys do not keep her water level where it needs to be and she dehydrates easily, so easily in fact that we have had to take her to hospital three times in the last few months for dehydration.
So now we are getting close to our next step. Taylor will need a new kidney sooner rather than later. As the kidney function drops Taylor’s kidneys will not clean blood, regulate vitamin D or calcium very well until finally none of this would happen and she would need to go on dialysis. So the first step was for my wife and I to get ready tested as transplant donors. We went for blood testing and the living donor clinic (independent or our doctor or us) have decided to start testing me to donate a kidney. I have a 24 hour heart rate monitor on right now as I type and then there will be a full day of testing in a few weeks to test me and see if I am a good match.
As for kidney transplant itself, a transplanted kidney will last for 10 to 15 years and then Taylor will be shopping for another one. The surgery seems to be common and the doctor that we spoke to earlier this week say that they do about 50 kidney transplants every year with only about 5 being done for kids. If all goes according to plan I will donate the kidney, Taylor will get the kidney put into her body and hooked up, and we will be out of the hospital within a few days. People live completely normal lives with just one kidney and the only suggestion that our transplant doctor gave me was to not eat protein powder because of the pressure it puts on the kidney. Diet and exercise should be the same.
So as you can imagine this as been a really trying time for our whole family. We are worried for Taylor and hoping that everything is done before she would have to go on dialysis but for now we are day to day with this thing struggling, praying, hoping, and just living through it.
I know that I may have missed a lot in this post, in fact I expect to write a few posts on the subject as we are becoming pretty well versed in kidney issues and health of kidneys. Fire away any questions that you want and Michelle and I will answer them for you.
GD Star RatingMy Daughters Kidney Disease, 5.0 out of 5 based on 3 ratings