Introductions all around

My name is Julie.  I'm 46 years old and I have Polycystic Kidney Disease.

I was officially diagnosed with PKD in April of 1994 when I was hospitalized for complications with my pregnancy.

I don't know very much about my Family History, most of my blood relations are either dead or people that I haven't spoken to since the early to mid 80's.

Here's what I do know about PKD in my genes:

My Father was the baby of 10 children.  Aside from himself, only two of his sisters lived past the age of 40 or so.  Of the three of them that lived past 40, Dad and Ethel had active PKD.  Nora, to my knowledge, did not have the cysts.

Nora also had no children.

Dad and Mom had 3 of us.  My brother Mike who is 20 years older than me and my brother Allan who is 14 years older than me.  Ethel had 2 Children, Jane and Judy.

I have one child, Carolynn, who is 17.  Mike has 2 children, Michelle and Mike Jr who are 31 and 28 respectively.  Allan has one child, Allison who is in her late 20's.  Jane has 2 children, Jackie and David who are... I have no clue how old.  Judy had no children.

Mike and I both have active PKD.  Allan never formed the cysts and his daughter Allison is also apparently cyst-free.  Both of Mike's children have active cysts and, last week, we learned that Carolynn already has cysts showing on her kidneys as well.

I've been told that Jane has active PKD and that her son David also has it.  To my knowledge, Judy does not have it nor does Jane's daughter Jackie.

My brother Mike is on his second kidney and doing very well considering he is 66 years old.  To my knowledge, aside from myself, Mike is the only other person to take an active role in battling his PKD.

PKD supposedly has a 50% chance of being passed from parent to child.  Again, since I can't go back and look at all 10 of the births in my Father's Family, I have no idea what the percentage really was.  All I can do is look at those of us that I know about, and it sure seems like 50% is a bit false.  Three kids in my family, 2 of us have it.  Of our kids, 3 out of the 4 have it.  Carolynn, at age 17, has already said that she doesn't think she ever wants to have any natural children.  She is already starting to think in terms of being a Foster Parent and adopting a child of her own rather than continuing to pass on this damn faulty gene.  I'm fine with that idea.  I know what I'm going through and now I know what it means to be a Parent and be told that your Child was 'lucky' enough to develop the damn disease as well.

This is enough for now.  I had my first go with dialysis today and I'm still trying to sort through my feelings and thoughts about all of this.

My goal for this blog is to collect my own thoughts, experiences and shared advice with others who find themselves on this same journey.

I will post again soon.