Kidney Tests are back...here is the result

I got a phone call today from Dr. K of genetics to let me know what my kidney tests came back. She said, "Your tests came back and you have...the autosmal dominate type." My heart sank because this is what this news means-

*note: I found out that both my kidney's had cysts on them within hours of the decision to take TanaLee from my womb.*

Common Questions about Poly cystic Kidney Disease (PKD) and how it will effect my health:

1. What is PKD?

It is Poly Cystic Kidney disease. It effects an estimated 1 out of 500 people, including babies, children and adults, regardless of sex, age, race or ethnic origin. It comes in two forms:

1-Autosomal Dominate (ADPKD) Is one of the most common life threating genetic diseases. ADPKD effects 1 in 500 people. It does not skip a generation. There is usually a family history of ADPKD. Parents with ADPKD have a 50-50% chance of passing the disease to each of their children.

2-Autosomal Recessive (ARPKD) It is a relatively rare genetic disorder occurring in approx. 1 in 20,000 individuals. It effects boys and girls equally and often causes significant mortality in the first month of life.

A normal kidney is the size of a human fist and weighs about a third of a pound. However with the presence of PKD, cysts develop in both kidneys. When many cysts develop, the kidneys can increase in both size and weight, sometimes weighing many pounds each. There may be just a few cysts or many, and the cysts may range in size of a pinhead to the size of a grapefruit.

(*This was info was taken from, http://www.pkdcure.org all credit goes to them.*)

I just want to cry! Seriously, why do I get pinned with this disease and end up having a preemie that later dies due to issues related to prematurity. All of this going back to the fact that I came down with Pre-eclampsia because of this Kidney disease!!! While all these irresponsible people on drugs and alcohol have normal full term babies. (This excludes the fact that these babies are born addicted to the substance.)

Here I am a person who doesn't smoke or drink or do drugs, never have! I just want to share a living baby with my husband, is that too much to ask??! I think I have had enough junk happen to me, and now this!!

I am still in the process of learning more about this disease. I have to admit that not all hope has been taken from me but it sure does shrink the hope I do have. I am frustrated about the fact that I have wanted to be a mom for so long and to have it snatched out of my grip when TanaLee died. The very thought of this disease effecting any future pregnancies, (at least having the potential) boils my blood. I just want to be a mother to a living child on earth...right now. I want to nurture and love and kiss a child that is my own. I want to experience pregnancy for what it is supposed to be....9 months with a glowing belly, the classic mommy and daddy photo with baby right after it is born. Not taken from me to some unknown room to be intubated. Not being able to see that precious life for 5 hours until meds wear off some.

How I just want to bring a baby home...this disease threatens that....all of it! I am pre-disposed to getting Pre-eclampsia already just for having in my first pregnancy with TanaLee. But now just add this renal disease to the mix, yeah that's just dandy!

Okay......breathe.....I should hear back from Dr. K on wednesday for a follow-up appointment to talk more in depth about PKD and what this will mean for me. Then we will meet with every kinda High risk Dr you can think of in the book that handles my kinda case. They will inform me of what my chances are of having a A) healthy 37 week old baby, and B) How they can or will intervene to try and ward off Pre-eclampsia in my future pregnancies.

As some of us know, nothing is certain....even with interventions. I just pray for better news because I need better news! What is your advice? Have you personally or someone you know met with high risk doctors? If so what was the outcome? Do you know of someone with a good outcome that faced bad odds to start with? The picture at the top sums up my mood- sad and without much hope for happily ever-after. *sigh*

(*If you don't want to share info like this on my comments page, email @ pinkpokadotz90@yahoo.com*)