Today was my appointment for what I thought would be a meeting with the geneticist, and then a scan of the new baby’s kidneys for Infantile/Neonatal PKD. That’s what we did with Holden, so why would anything be different? I actually thought it would be an easier appointment since they already have all of my family history on file, and it isn’t like PKD would just drop out of my family history.. so it should have been just confirming and then the scan.
It was a total waste of time and a complete ripoff.
Our insurance has a $30 copay for specialist appointments, so I pay the $30 bucks and go back into the office with the genetic counselor and we start ONCE AGAIN going over all of the info she already has down on the paper in front of her from my last pregnancy. Nothing has changed.
So that’s about 5 minutes of pointless jabber from her and me telling her over and over again “no, nothing has changed”.. and then she says “Ok, well we’ll do your scan at 18-19 weeks with the gender determination ultrasound and then at 32 weeks”
You’re SUPPOSED to do the kidney scan in the first fucking trimester. If this kid has neonatal PKD, it will either be stillborn or die within the first 2 years of life, don’t I have a right to know that, now?
Instead you’re going to lump something serious like that in with my gender determination ultrasound, a day that’s supposed to be a HAPPY day??
So I paid $30 for you do to NOTHING but re-confirm my information, something you could have done OVER THE PHONE?!
I don’t fucking think so. I’m livid. My OBGYN is going to get a nasty earful tomorrow.
Not only that, but this idiot tried to tell me that even if I don’t have PKD, my children have a one in 4 chance of getting it.
I have never, in my life, heard that- and 65% of my damn family has it. I know more about PKD than most people, so when she said that I was totally confused- ESPECIALLY since it is NOT what she told me when I was pregnant with Holden.
So, naturally, I did research on it to make sure I was right, and guess what? I am.
Your children CAN NOT GET PKD unless YOU have it. And even then it’s only 50/50. You CAN NOT be a carrier for PKD. There’s just no such thing. It doesn’t skip generations unless you have a VERY rare mutation of the disease where you AND your significant other have to be carriers.. and then your kids have a 1/4 chance. My family does not have recessive PKD. They have dominant PKD.
How did this lady get this job if she doesn’t even have the correct information? How can they get away with charging me 30 dollars for ME to do paperwork. I could MAYBE understand if I hadn’t seen her before, if she didn’t have my ENTIRE family’s and Thomas’ family’s medical history, but she had all of it written down already..
I feel like punching someone. Especially since she’s basically making it seem like not only do I have cysts on my kidneys (you don’t get those WITHOUT GETTING PKD LADY, and I have a 50/50 chance of NOT HAVING IT. If you don’t have it, guess what? You don’t get cysts!), but that my kids are gonna be fucked even if I don’t (which she was making seem impossible.. which I know to be untrue since plenty of my family is free and clear even though their parents have it).
I’d like to go to her office and dropkick her in the face. And then dropkick her professors and Indiana University for letting her graduate.
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