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 :)
