pkd in the family

Update

2008-02-09T17:19:00.000-08:00

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.

CT What?

2008-01-24T13:14:00.000-08:00

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.

It Hurts

2007-12-24T05:43:00.000-08:00

My brother was tested Thursday for PKD. He wanted to donate to my dad and had to be tested to go forward. My mom, grandma and me went with him, even though he wouldn't know right away we wanted to be there for support. I would want people with me. I was nervous while driving to the hospital. I was nervous for him. I was nervous for our family. I was nervous for what would happen if he did or didn't have PKD. If my brother didn't have PKD he could donate! It would mean a kidney for my dad! It would mean my big brother would have surgery to give my dad a kidney. That's HUGE. If my brother had PKD he couldn't donate to my dad...and he would be diagnosed with PKD, like my grandfather, like my dad and uncle. A five minute sonogram would determine alot.

We found out Saturday that my brother has PKD.

I am so pissed my brother has this. He is so optimistic and was so ready to doante. He said "when we find out and I'm clear let's get the hacksaw out and do the transplant now." And here is how it happened. The nephrologist called my dad! They didn't even tell my brother. They told my dad. My dad had to call my brother and tell him!

Donor backout

2007-12-03T13:19:00.000-08:00

I have some bad news, our donor backed out. I think it's for the best. The donor for my dad was an ex-boyfriend of mine. Yeah, you can imagine the situation..
We have been broken up for five years. He kept intouch with my mom more so than with me. We knew he was a blood and antigen match and he only had to go thru a few more tests. I hope it wasn't my fault he backed out. He said it was because his family wasn't giving him the proper support (maybe because we used to date and his family didn't like the idea) and he hadn't accrued enough vacation days at work. Besides, I wouldn't want someone donating, who's family didn't support him. I understand. It's for the better. Some people thought my ex-boyfriend was doing it for the wrong reasons, maybe he was. I'll never know, but it doesn't matter now. Our family has to focus on finding the right donor.
My dad's has someone who is willing to look into paired donation.

Puppies and Kitties!

2007-11-15T05:17:00.001-08:00

I decided to volunteer at the local animal shelter. Recently my boyfriend and I recued a baby kitty stuck in a metal joist. I wanted to keep baby kitty so badly but I already have two cats in our household and my boyfriend can't keep animals in his apartment. I think he liked baby kitty too. We had to take baby kitty to the league for animal welfare. They post pictures of which animals are for adoption so I can see him whenever I want and now that I volunteer I can visit him as well (I think it's a him.)

Do I have it?

2007-11-05T13:06:00.000-08:00

Sometimes I wonder if I have inherited PKD. There is a 50% chance that I have it. I also have a brother, there is a 50% chance he has it. We haven't been tested yet. We are both in our twenties. We both did volunteer to donate to our dad but they decided to go forward with a third donor, because of our family history of the disease. We show no symptoms now. I guess for insurance purposes you don't want to know if you have it or not until you are settled in a stable job and have life/health insurances. Or maybe they charge more? I don't know. Sometimes if I have a weird pain in my back, I think it could be a cyst growing. Then I think I am obsessing. I try to eat healty and drink lots of water. I already ready watch my sodium and protein intake, just in case. I also read about any pkd material I can get my hands on.

First Blog

2007-11-02T04:44:00.000-07:00

This blog is about my family's experience with PKD. My grandpa had PKD. My dad and uncle have inherited it. PKD is Polycystic kidney disease. Which means many cysts on your kidneys, it causes the kidneys to slowly decrease their filtering function and eventually they fail. A person with PKD would then start dialysis or get a kidney transplant.