In my family runs a disease called Polycystic Kidney Disease (or PKD), obviously a disease that effects the kidneys, eventually putting the effected into renal failure if they do not go on dialysis or get a kidney transplant.
My Grandfather had it, one of my uncle’s, my aunt, my mother, my brother, and a handful of cousins.
It has been something that has been on my mind pretty much my entire life. I watched my mother suffer through years of pain and torture, and eventually pass away due to the disease and complications that came with a botched transplant. I’ve watched family members get very sick, and lose a lot of freedom in their lives.
I have never been tested. I refuse.
It may seem irresponsible, but think of it this way: there is NOTHING anyone can do for you until you exhibit symptoms of PKD. You’re shit out of luck unless you’re in pain. Why would I want to know that my life was going to go downhill, and I could possibly die.. but there was nothing I could do to stop it or make it better? Who would want to go through living that? My brother knows he has it, has no symptoms, but I know he thinks about it every day. I don’t want that added stress.
I want to live my life to the fullest. Take care of myself. Not have the stress of looming doom in my future. You may not make the same decision if in my position, but it’s my life.
My OBGYNs don’t really see it that way. And I understand, to an extent. There is also something called Infantile PKD, where your child can develop PKD in the womb (instead of in their 30’s or later), and have a rough life, and possible birth defects. I always thought it was so rare, there was no chance. I’ve always kept my head up and believed that I don’t have PKD, so my children can’t either (you can’t be a carrier for PKD, it has to be passed directly).
I got scanned twice during my pregnancy with Holden for Infantile PKD, both times the scan was clean.. which I expected.
My first scan for the new baby is tomorrow morning. I honestly had ZERO worries about the whole thing, and just thought of it as another chance to see my bean wiggling around.. until I talked to my brother today.
My cousin had Infantile PKD. It’s why he was only born with 4 fingers on one of his hands. I knew he had PKD (he passed when he was 19 or 20 from other things), I just never knew it was at birth. It’s not as rare as I thought. And now i’m incredibly worried. Worried about the baby, back to worrying about whether I have it or not, whether I could pass it down.
A huge part of me is almost certain that this baby will not have it, just as Holden didn’t. The rest of me is freaked out that my genetics is going to ruin my life, and my family’s. I don’t want to get sick and have my teenaged children have to look after me like I did with my mom. I don’t want to pass away without them ever getting to ask me what they were like as children, or knowing who I REALLY am. I still have so many questions I can never ask my mom.
I want my family, and myself, to be free and clear of this horrible disease- but getting myself tested is something I just can’t do. I can test the babies, it’s important to know because Infantile PKD is nothing to mess around with.. but I can not handle getting tested and possibly having it. I need to stay positive for my children. And I know that i’m going to go in there, and they’re going to try and convince me.. and I hate when people try and convince me because it’s my body and my life and my decision.
What’s very important is that my children are healthy. So now i’m just going to hope for that.
Hard pass from me pic.twitter.com/VayvW1eopK
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