Part 2

So after hearing the news about my kidneys it was pretty much a game on mind set for me. I have never been the type to dwell in my diagnosis' Not that I don't care per se - it's just - what's done is done. I have always dealt with things as it is what it is. My dad has RP. He's legally (and now pretty much totally) blind. He's always been the same day. You pick yourself up and you move forward. I got my strength from him.

First step were a bunch more tests, ultrasounds and biopsies (they need to be able to see what damage is occurring and why) I was stage 4... Following stage is End stage. dialysis. Transplant. Lupus had waged a full out war and was attacking my kidneys. Too help "slow down" and get my lupus under control we opted for cyclophosphamide. Basically it's a chemotherapy. Unlike in a cancer patient that would go every week or two weeks I went once a month. The side effects for me were the absolute worst - I felt as though the life was sucked right out of me and barely could make it crawling to the bathroom to throw up. It was the worst. Before starting I was well aware a side effect of the drug was damage to ovaries and eggs. At the time that was my best option and to this day I have no regrets. Sadly the cyclophosphamide didn't really do as well as we hoped. My Lupus continued to rage, my kidneys continued to get worse.  I remember seeing my first nephrologist and asked if he ever thought I would need dialysis (for Lupus patients it's the minority that end up on dialysis/transplant) He felt in my case I had 5-10 years. He was close. 4 years later, just months before my wedding down to 13% kidney function there I was - staring dialysis in the face. My doctors were amazing and we actually were able to hold off until a few weeks after my wedding. 

Peritoneal Dialysis started (I did it at home myself - after a month of training) and I can't begin to explain how much better I felt (at the beginning) and how much it changes everything. So many things are taken away.  Going away for a night was a production dragging suitcases full of dialysis stuff. Ugh. Lucky enough I had awesome parents who refused to listen to me and went thru testing to be a donor. My mom went first and was ruled out. She was devastated - I was elated! I did not want my parents having surgery. Not for my benefit anyway. My dad passed all his tests and January 31, 2012 I was wheeled into an OR to receive my dads kidney.  

After almost a year of constant med adjusting and blood work, recovery was well under way. We were finally able to start talking about maybe planning a family. I knew in my heart it would probably be a no go. That didn't stop me from imaging how I would tell my parents, or how cute my belly would look. How amazing a father my husband would be, how much fun my Neices would have playing with my child. I guess I got swept away with a dream. One that will never happen. I'll get into that in my next post as making posts on a phone hurts my wrist :)