December Doctor Visit

So I didn't actually do that. I forgot about it completely.

But I did get tested for liver problems at the Dr's request and I asked for parathyroid and celiac disease testing. I'm almost sure it's not the latter, but why not check anyway? I'm desperate.

I have no idea when the test results are due, but I will update when they come back unless they're unremarkable.

Scared.

I know I've said this before, but I get scared.

I saw the nephrologist. He said a lot of things I already knew. I didn't really get any answers from the visit, unfortunately, but it isn't his fault. Everyone is different. He wants me to come back next year. Why? He can't help me with the frequent urination. He can't fix the pain. He can't stop potential UTIs. He can't stop the progression. He can't do anything.

I try not to think about it at all anymore, but when I do, I get hopeless and I get frightened. If it's this bad right now and I'm only in stage 1, I can't imagine how it will be years from now. I hear the pain is like passing kidney stones or like you've been in a car accident. I don't want to live in pain.

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. 

Personal Post: My Concerns

There are a lot of things that I have considered so far. Firstly is how much people really care about me. My entire family has been very, very concerned and loving about this. I think they're more scared than I am! I really appreciate their efforts (taking my husband and I's names to the temple, praying and fasting for us, researching the disease, and sending me informational links.

Second, I considered what effect this would have on my ability to get pregnant. It's weird how you don't really care about that until there is a possibility you won't have it anymore. Turns out, it is generally okay unless you develop high blood pressure (which happens). It's considered a high-risk pregnancy and they recommend genetic counselling to prevent passing it on to your kids.

Third, I considered my mortality. Depending on the site you look at (oh internet...), I have a significant or 40% chance of developing brain and/or heart aneurysms. Those seem really scary. I guess if I die right away though, it wouldn't hurt! Some people don't have the luxury of a painless death.

Fourth, I've already been told to start going to church in order to be healed. I believe that faith-healing can work and there is no harm whatsoever in asking for help, strength, or healing from God. However, I'm quite sure this is not some form of punishment for not going to church. I think people who don't go to church can be healed and helped just as much as those who do. Anyway, I'm just concerned that this will be exploited to help whatever agendas - be it science or religion. It's simply health, and it's simply a genetic mutation. These things happen. If I pray really hard and die, it's not God's fault. If I don't pray and get healed, it could very well have been achieved with the help of my family's prayers and fasts.

Fifth, and least concerning is health insurance and paying for this thing.

Anyway, I just want to thank you all very much for your help and love! I appreciate it!

Update: July 30th 2013

So, I went to the doctor for my first follow up!

Here is what I learned:
1: My kidneys are disgusting.
When you Google this sort of thing and look at the pictures, you see some really disgusting stuff. Most of what I saw were some black cyst-covered kidneys. They looked wrecked! Well, I found out today that mine look just like those (on a smaller scale).

I'd post one to save you time, but you may be eating. Here's a puppy instead!

Seriously! The largest one is on my right kidney. It's 3cm. My kidney is 12cm. That's right. 1/4 of my kidney is a cyst. The left kidney has one about the same size, but that kidney has enlarged to 14cm. The findings say: there are too numerous to count varying size cysts scattered throughout the renal cortex bilaterally. The largest cyst on the right is in the 3cm size range. The largest cyst on the left measures approximately the same. Several of the lesions are complex with septations. There is no hydronephrosis. The right kidney measures approximately 12 cm and the left kidney 14cm. 

Septations meaning walls within the cyst - that usually indicates a higher chance of them being cancerous.

Hydronephrosis meaning water in the kidney. 

I saw the scan myself (with the doctor). There were cysts everywhere. It was seriously gross. 

There is no cure. There is no way to slow the growth and progression of the cysts. One day, they will replace my kidney tissue and I will need new ones or dialysis. 

That's all for this update! Thanks for reading! I will do my best to keep you all posted. 

Hello!

Hello there! I made this blog so I could more easily communicate what's going on with my newly discovered PKD!

It all started last April, when I began getting weird bowel problems. The problems persisted and more symptoms appeared and progressively got worse. After a colonoscopy and many, many doctor visits, one decided to actually look into my problem instead of dismissing it as "not enough fiber" and period pains.

Thus, my PKD was discovered on July 26th 2013.

As you could imagine, it was very left-field and unexpected. It is apparently genetic and, if it is traditional, my siblings each have a 50% chance of also having it. There is a 10% chance that I am the first mutation and none of my family has it.

So anyway, here it is! Welcome and enjoy...I guess :)