Saturday, February 9, 2008

Update

I have learned that the CT angiogram revealed no cysts on my kidneys at this time, good news....but,(I feel like there are always buts in this process) it has revealed that I have one kidney bigger than the other (somewhat normal) and caliestasis..I think that's how you spell it. It's a blockage of some sort in your calxy...I don't really know what happens or how it's fixed or anything and I can't find much info online about it, but it's what I have. I didn't expect this. It's weird, the stuff you find out about yourself when going through health screenings to be a kidney donor. My next step is to see a nephrologist and I still have to do genetic testing. Genetic testing costs a lot and they have to test like five other family members. So it can take some time. Then after that before I could donate I have to address this caliestasis issue...hmm. I don't know if my parents want me to go forward.

I don't think I am a typical potential kidney donor, if there is such a person. I feel so far through all this I have been taking things one step at a time and have been going with the flow. I haven't been the donation crusader telling everyone I know about this...except whoever reads this, it's a way to think aloud for me. I haven't cried about it or actually said "if we are a match the kidney is yours." I feel like each step is another experience for me to have that is supplemental in me making my decision. I have also read a ton of people's experiences on line. Those are very powerful. I feel like one day all the testing will be done and the doctors will say "ok when can we schedule the surgery?" and it will hit me.

One thing that does bring a tear to my eye is thinking about my parents and them growing old together. I want that for them. I don't want my dad on dialysis. I want to be able to grow old with whoever I marry and it's something I want for them. I want them to be grandparents that spoil their grandchildren. I know they will spoil.

In the mean time if anyone knows what calistasis in please feel free to comment. I am seeing a nephrologist next week.

Thursday, January 24, 2008

CT What?

A few developments since I last wrote...My brother was ready to go forward to see if he could donate and they started him with a sonogram of his kidneys. The Saturday before Christmas we found out that he has PKD too. He took the news well. He said before the sonogram that if he found out he has it, he's had it all his life and nothing will change. He is making some modifications to his diet...lower protein, watching the sodium etc. He also exercises regularly, which is more that I can say for myself.
After that it took me a while to decide what I should do. My brother said he felt better knowing and he wants to get involved in one of the studies. He is truly an inspiration for having a good attitude. Part of me wanted to leave it all in the back of my head, but that wasn't happening. I kept thinking about it and it was hard not to, considering my dad needs a donor and my brother has it. After New Years I initially told the transplant team I didn't want to be in the running any more. The whole being considered high risk pregnancy if you donate a kidney scared me, I want to have kids. Then I thought.... even if I don't donate a kidney but I have PKD I would also be considered high risk. I decided to call the transplant team and go to the next step.
I had a sonogram of my kidneys and the docotors didn't see anything. Which is good news, but to make sure they wanted me to have the CT Angiogram. I just got back from that. I really tend to frak about things, but it wasn't as bad as I anticipated. When the dye goes in it feels like a really hot hot flash and it also felt like I peed my pants. But the nurses warn you of that so you know you didn't actually pee. Then my boyfriend took me to lunch, it was nice to just chill out after all the anticipation before going back to work.
Next we have to do genetic tested for the last step in determining nothing shows up in my kidneys in five years. They still think I could be to young and that it just hasn't shown up yet.