Some background

Let me introduce myself, I work full time out of the house, I'm a full time mom of two GREAT kids, and as of December 2011 I became a full time caregiver to someone living with PKD.  That last bit is slightly deceptive.  My husband who has this disease is still working and able to care for himself, but we went from talking about the fact that "someday" he would be on dialysis and need a transplant to that dreaded day being here.  What is PKD you may ask? Polycystic Kidney Disease or PKD is a life long genetic disease that attacks your kidney.  It eventually leads to kidney failure and if not treated death.  By "treated" I mean dialysis and transplant, there is no true treatment or cure for it. 1 in 500 people have this gene and there is a 50% chance of passing it to children.  Out of the 1 in 500 that have it 50% will develop kidney failure before they are 50, and that is where we stand.

So tonight as I write this, I have my 3 year old cuddled in my lap while dad is at dialysis, and I have finally started the journey that has only been in my head since December when our first "someday" moment hit.  When you live with a chronic degenerative disease you either live in fear everyday of your life, or you wait for the someday, milestone, moments and live your life.  Rob (the hubby) has known since he was 17 that he had this disease.  When he and I first started dating, he didn't hide the fact of this from me.  The only concern he raised was the possibility of passing this on to any children we may have.  I'll admit I didn't think about it much, except for his mood swings that seemed to be connected to cyst bursts, it never really affected our lives, till now.  While I will be focusing on PKD, much of what I will be writing about is true of any caregiver.  There will be rants, tears, frustrations, joy, triumphs and hopefully some insight to what we are going though.  I know I'm not the only one who is facing trials, and I have had many people help me so far along this path, and hopefully I can pass some of that knowledge, as well as what we are learning on the fly.  So welcome to the journey!


NEXT TIME:  Our first someday moment.