Update: August 20th, 2013

Good news! I'm proud of my kidneys.Why?
Though they're infested with cysts and a little enlarged, I have an absolutely normal GFR.

GFR of 120 = normally functioning kidneys/Stage 1 kidney disease. :)

Self-pity

Sometimes I really can't help but feel upset with my circumstances. PKD is "the most common life-threatening disease", affecting 12.5 million people, but I feel like I'm alone. Extremely supported, but alone. I don't have anyone to ask about it. I don't have someone who's lived with it. I can only get my answers from others on the internet who I have no idea if theirs is worse than mine or better, what their history is or if it's a new mutation, or what their progression rate is...there are just so many variables. For me, it's not imminent, since I'm only 21, but I know that it will get worse. I don't know how quickly it will come or how bad it will get, but I know it's coming and that is scary.

As it is now, I can immediately remind myself how hard I hoped for a diagnosis. How happy I was that they could put a name to what was bothering me (at least some of what was bothering me). It's not treatable like I hoped, but it's something and I'm glad they could find it so I could even make choices regarding my next steps in life (and death). A lot of people don't get that.

Not what I thought

I hadn't realized how big of a deal this disease was until today.

It's not normal to take the cystic kidneys out anymore, they just put the new one in your groin. So, the pain, infections, aneurysm risk, and heart problems will still be there, you'll just have a functioning kidney. Though, on top of that, the medications you take after the transplant significantly raise your risk of many cancers. So, are you really winning here?

I've read about pregnancies and some scary things that happen during and after them. The risks are really scary. I saw one woman who was told she'd need a transplant in 20 years, and after she had her kid, it was cut way down to needing one within the next year. Some women had to deliver early, some had vastly enlarged kidneys or livers...

I read about women who had family histories. The men in these families die of PKD-related heart attacks and renal failure below or near their 40's! That means you spent more than 1/3 of your life in school, about 1/3 enjoying it, and 1/3 of it dying and trying to pay bills for it. Women have many forums just discussing why they should or should not have kids. It boils down to: "I want to have kids because I don't want this to define my life." or "I don't want kids because I can't pass this on and watch them suffer."

The worst part, for me, is making the decisions. Should I just refuse "treatment" and live until I die? Should I or should I not hope/try for kids? How and when should I do these things? How will I pay for any of it? Who is going to insure me?

A good thing that has come from this is my outlook on life. I figure I'll be dead faster than I thought I would, so why not get on with life and get a career? Why worry so much about global warming? Why sweat the small things? Why not get out and see the world? Why not eat fast food all the time? Why not start volunteering and making something of myself? Why not get a puppy for Christmas (hint hint)?

Some Pictures

Here are some pictures!

My awareness pins!

My left arm (it was stabbed 3 times before they got blood).

My right arm is still bruised from last time.

This is my urine (from the 24 hour collection) in the fridge. Be jealous.

So that's it for now. I did the second series of tests and am awaiting the results and a call from the nephrologist. Hopefully he is satisfied this time because I'm developing a fear of needles.

Personal Post: Babies

Okay, so I'm not baby-hungry or anything of the sort, but Stephen and I, whenever we've talked about kids, have this wonderful idea of a lovely little boy we'd name Asher. Asher Gabriel Stannard.

I know it's not healthy to have expectations of your kids - especially before they're even conceived, but he is this curly top, Stephen-esque, awkward, sunny little boy. I don't care if he is smart, athletic, attractive, or anything else.

Anyway, I've been doing a bit of research into the matter lately. Originally, I wrote it all off as: it will be fine, just need to have some invitro so I don't pass PKD on. They said it was no problem (no problem meaning high-risk pregnancy, but usually successful) because the worst symptoms of PKD (high blood pressure and acute renal failure) don't happen until "the third or fourth decade of life" and since most women have had their kids by then, it has not been a big deal. However, I watched this video of a PKD doctor saying that it affects fertility. He didn't say how, but he said it! *see EDIT below*

We only want 2. 3 at most, but we want more than 1.. I want to finish school first and have a steady income so we can afford the invitro first, so that will probably take until age...well, I could do it at age 24 at the earliest. I don't want to work while I'm pumping out babies, so we'll most likely have to wait until Steve has a steady income which would be 24 for him, and 25 for me.

EDIT: August 19th, 2013
So, I looked into some support group forums (I didn't join haha) to find out what can actually go wrong. Apparently, pregnancy can raise your blood pressure, and that can cause kidney damage and worsen any aneurysms. Your kidneys and/or liver can enlarge after the pregnancies, progressing the disease! Wha? I'm sure I mentioned this before, but it can also increase your risk of losing the baby or dying.

I'm considering maybe not having a child anymore. We don't need one and we could always adopt fur babies. Maybe adopt actual babies if I felt the need. But perhaps I could be more useful as a foster mom or legal guardian of sorts. I don't know!  For the group page and more info, follow the link below.
http://www.dailystrength.org/c/Polycystic_Kidney_Disease_PKD/forum/4663931-pkd-and-pregnancy/page-2

Update: August 13th 2013

Hello!

So, I got a call from the nephrologist's office and apparently they did the wrong blood and urine tests? I'm not sure. From what the nurse said, they checked creatnine levels, urea and protein levels, what else do they need? I don't know.

Anyway, I have to get some more blood and urine taken for yet more tests. After that, I can see the nephrologist. Joy?

Update: August 12th 2013

So, my blood and urine results came back as normal (and a few things just above normal). As you can imagine, this was a complete surprise to me! From what I've read, things start getting really bad when the cysts reach 4cm. My biggest ones are 3cm, so I figured there would be at least a little extra protein or urea in my blood.

This is good news! They still want me to see the nephrologist. I called them to get the progress on setting my appointment. Turns out, they were waiting for the test results that came in today. So, I should be getting a call soon!

Anyway, I have some pictures on the camera, but I can't find the cord, so we'll have to wait on those. I'm also hoping to get a photocopy of the results so I can post those.

Thanks!

So this is cute...

I think I want to start wearing a teal ribbon pin. I know that's on the boarder of milking it, but why not? It raises awareness (which happens to be a huge barrier in getting donations to research cures), it's an opportunity to wear teal, and people can know they aren't alone - which they should know, since it is so common. 

Anyway, PKD also has it's own awareness week! Did you know that? It's in June though, so we'll have to raise awareness next year.