In May of 2009, I ended up with some weird pain, paralyzing stuff going on ( ended up paralyzed from the thigh down on my right side), so instead of starting with an RE, I ended up at a Neurosurgeon's and a Neurologist, being told I needed spinal surgery, a disc in my back had ruptured and was pressing on my spinal cord & I needed surgery ASAP, that happened in July 2009, they removed the disc, fused the 2 vertebrae, put in 2 steel rods and 4 metal screws. We were told to wait 6 months before TTCing, and that was fine.
In Jan of 2010 we were finally able to see the RE ! We though great, shouldn't take much, i was charting, and other than ovulating around CD18-19 I though , OK, this shouldn't take much.. However, the RE saw me & thought I might have a genetic issue, so she wanted to investigate that first, she did a U/S, which looked OK, and then pulled the usual B/W, and that's where things went down hill...
She noticed that my Creatine levels were reallllly off which suggested a Kidney issue, she then refereed me out to one of the larger Genetic clinics in Toronto.
From there, she pretty much told me unless I got the all clear from the geneticist, she would not work with me.
I then met with my wonderful Geneticist & her wonderful staff, they started off by sending me for an abdominal U/S, which showed issues, and they pulled lots of different B/W for different genetic testing. She then refereed my to my Nephrologist who in Dec 2010 diagnosed me with ending of stage 2 beginning of stage 3 Kidney disease, and at that point he told me that I should not get Pg, as everything was very unstable.
Working with him & my family Dr, we got my Blood Pressure under control, which helped stabilize my Kidneys, which actually improved their function back up to stage 2, which just requires monitoring , Blood pressure control, and a lower sodium diet (which is reallllly hard for me because I LOVE Salt)
My actual condition is 3 fold, my kidneys are a lot smaller than normal, they are filled with scar tissue, and the Tubules are blocked (they are the little tubes in your kidneys that help filter).
So in Sept of this year when I saw him, he deemed everything stable, and gave his blessing to TTC, with the caveat, of NO fertility drugs,or treatment etc. as he believes that they will affect my kidney levels & make them unstable, and he does not want to risk that, along with the additional issues being Pg will cause.
And as for the Geneticist.. She is still playing with my blood !! She believes that she has found something that would put a name to all the issues that both me & my sister have (that's a whole another book) it is called Alagille Syndrome, which is not really a concern, but they will do genetic testing if I ever get Pg, if I want.
And that is it..
Anything else, just ask !
