December 15, 2014

Stage 3 Kidney Disease and Counting...

So I met with two of our doctors today and did labs.  Clayton's creatinine has again risen just slightly.  However, given that it has risen even ever so slightly in a week, the doctors are concerned.  Right now we are buying time.  We are trying to make it through the holiday without a nephrostomy tube.  Though a nephrostomy tube will not be an answer, it will allow us to see what Clayton's kidney is doing without the chaos of the messed up ureter.  This will give us a true reading of his kidney function.  Right now the ureter could be skewing things just slightly due to inadequate drainage; which is a problem we have been trying to work with doctors on.  The doctors did say definitively though that they did not believe the progression in kidney disease we are seeing is due to that.  They believe it is the kidney.  Clayton is also hypertensive. So I have to monitor and record his blood pressure daily and report to doctors and he is now starting medication to address this.  The problem with blood pressure is that it is a byproduct of deteriorating kidney disease and yet it can also cause a kidney to deteriorate more quickly.  Lots of balancing.
Let me think... To much information swirling...we will check in again on Monday with nephrologist and urologist.  They hope nothing will happen before then, but said it is always a possibility and told me just to come right in if I notice any changes before then.  It is 99% certain Clayton will be getting a nephrostomy tube in the next month, it is just a matter of when.  Could be next week or could be after Christmas.
The doctors are trying to work things out with the doctors in Orlando they want to get them prepared for Clayton and I am waiting to hear more on that.  They ruled out the possibility of dialysis for Clayton for multiple reasons.  Which means if Clayton's kidney fails we will be looking to a kidney transplant.  They talked about getting Clayton established with the hospital so that they can get him put on a list for kidney transplant.  They said they can, "get him on a list for transplant consideration", in about a month.  Research shows what they must have meant was a preemptive transplant knowing he would not be a candidate for dialysis once he reaches end stage renal disease. So depending on when he could find a match, he could have a transplant in the next 6 months...or less.  After speaking with the doctors today, I expect we'll be making a trip to Orlando in the next 3 weeks.
It's a lot.  George and I had thought we might have a few more years before any of this.  

So here are the facts:
- He is currently in stage 3 kidney disease and still progressing.  Kidney Failure occurs in stage 5.
- Kidney function can be measured by numbers; normal function would be in the 90s, Kidney Failure is in the 30s and Clayton is at 58 and falling...per our nephrologist.
- He will definitely get a nephrostomy tube in the next month.  Not sure just when.
-  he will soon be going on a list for transplant consideration per the doctors today.

I have to say though, today was a good day with doctors.  I was able to sit with both doctors and pow wow.  The beauty of being such a serious patient is you get their undivided attention.
That's all I have for now.  Tired from thinking about it all.
One request:  please for the love of all things do not be one of those people that hugs me with the expectation we are going to hug it out and cry and such.  Don't get me wrong, I'm good with hugs, but my tears are mine and I have zero desire to share them with my mom or my friends or grandmas or anybody else.  I tend to work things out when I'm by myself and I hope everyone can understand that.  I'm good with hugs, I don't mind casually answering questions about everything now, but no heart to hearts.  I'm a weirdo and that's just how I roll.
Despite my weirdness, please know I don't mind a normal hug, I love hearing everyone's sweet thoughts and prayers and I am constantly touched knowing how many people keep my sweet boy in their hearts.  So don't think I'm brushing folks off...not.at.all.  We want y'all and need y'all around us, I just want to be left alone when I'm having a bad moment or a bad day.  It's me...not you :)

I'll be back when I know more or can better process my thoughts...

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