Tuesday, July 29, 2014
Time crunch.
After the initial overreaction was over, I was able to find out more accurate information. The number of cysts in my kidneys makes an incontrovertible diagnosis of PKD1; the abundantly more common and more severe form of the disease. I learned that cysts grow about 5% (less than 1% more in some cases, and less than 1% less in others) consistently per year, no matter what form you have. To get a diagnosis of PKD at age 15 - 29, you only need two kidney cysts. Period. I've also found out a lot about transplants, dialysis, and pregnancy.
The horror stories of yore are still accurate and just as valid as they were before, but it seemed like a death sentence to be pregnant. Still, I'm not going to try getting pregnant if and when I get high blood pressure, which "develops in most patients by age 20 or 30". I'm surprised I don't have it yet, with my french fry addiction, but that's the point of this post: everything has a time limit now.
Barring the progressiveness and scariness, I'd say it's the second most life-altering thing about this disease. Everything has a timer on it now, and everyone's is different. Some people still manage to work into their 50's. Others retire in their early 30's. Heck, a number of us die in our early 30's. The pain keeps some of us 20-somethings from completing school. Not me, but a girl who had four cysts in each kidney. Just 8 cysts total were causing her enough pain to leave college. Another girl I met in a support group was unemployed, unmarried, and unhappy at my age. My pain is aggravating sometimes, but I can get a few more good years out of it.
Then there's babies. Not gonna happen after I get high blood pressure. It's risk enough with my blood clotting disorder (made even worse by increase blood clotting in PKD). And that's that.
After I turn 30, the clock begins to tick. This is the age many people get diagnosed because all the symptoms appear and slowly worsen. 40 is where all hell breaks loose, and function declines rapidly. You'll die, transplant, or need dialysis in your 50's. Or, if you have PKD2 or are a lucky PKD1er, then you have another 10 years. The 30% of you who manage beyond that, congratulations! You'll probably be fine.
It's just a bit irritating to think: "Hm...I could be dead in 10 years, or I could be dead in 30." You can't make plans with that!!!
Should women with PKD get pregnant?
Most of the women with PKD (80 percent) have successful and uneventful pregnancies. However, some women with PKD have an increased risk for serious complications for themselves and their babies. This includes women with PKD who also have:
- high blood pressure
- decreased kidney function
Women who have PKD with high blood pressure develop pre-eclampsia (or toxemia) in 40 percent of pregnancies. This is a life-threatening disorder for both the mother and baby, and it can develop suddenly and without warning. Therefore, all women with PKD, particularly those who also have high blood pressure, should be followed closely during their pregnancy by their doctor.
Barring the progressiveness and scariness, I'd say it's the second most life-altering thing about this disease. Everything has a timer on it now, and everyone's is different. Some people still manage to work into their 50's. Others retire in their early 30's. Heck, a number of us die in our early 30's. The pain keeps some of us 20-somethings from completing school. Not me, but a girl who had four cysts in each kidney. Just 8 cysts total were causing her enough pain to leave college. Another girl I met in a support group was unemployed, unmarried, and unhappy at my age. My pain is aggravating sometimes, but I can get a few more good years out of it.
Then there's babies. Not gonna happen after I get high blood pressure. It's risk enough with my blood clotting disorder (made even worse by increase blood clotting in PKD). And that's that.
After I turn 30, the clock begins to tick. This is the age many people get diagnosed because all the symptoms appear and slowly worsen. 40 is where all hell breaks loose, and function declines rapidly. You'll die, transplant, or need dialysis in your 50's. Or, if you have PKD2 or are a lucky PKD1er, then you have another 10 years. The 30% of you who manage beyond that, congratulations! You'll probably be fine.
It's just a bit irritating to think: "Hm...I could be dead in 10 years, or I could be dead in 30." You can't make plans with that!!!
Saturday, July 26, 2014
1 Year!
It's been a whole year since my diagnosis. I think I have everything down now. I've learned a whole lot, and not just about my disease, but about genetic diseases in general. I actually haven't gone through all of the stages of grief yet. Denial and bargaining were never in the cards though, that's stupid.
I've changed quite a bit, and I'd like to say it's for the good, but it isn't. I'm even less patient now and somewhat more aggressive. I have less compassion for people who smoke. Every time I get a headache (and I read an actually study about this, it's not just me!), I worry I'm having an aneurysm rupture/stroke. I also value the human body less and my back and stomach hurt more now. I'm not sure if it's the disease progression or because I know what's happening. Maybe both. My kidneys are set to grow .7cm a year. I try not to think about my future as much because I don't think I'll be too fond of it.
But there are some good things, too. I'm way more patient with myself. I feel vindicated and relieved after so many doctors blew me off. Like...after every UTI, a nurse would tell me: "You know you need to wipe front to back." Duh, but I'm coming in with UTIs all the time, so what is she supposed to think? And doctors thought I didn't take my medication properly, because I'd sometimes get them consecutively. I occasionally imagine going back to all the Instacare clinics and saying: "You're all stupid!" But honestly, how would they have known?
I don't put nearly as much pressure on myself to be like everyone else or to please anyone. If I don't want babies, I have an even better excuse than I've ever had before. No one can judge you for that (well, some people still can) if you've got a genetic illness. I don't care about finishing a bachelors degree. I don't care about pensions or anything old-people related. I don't have to worry about getting old anymore! I have an instant connection with 1 in 500 - 1 in 1,000 other people, and I can somewhat relate to other people with other genetic illnesses. I have compassion for them, especially if theirs is worse than mine.
I don't care about stupid things anymore. Not that there were many, but now if someone judges me for sleeping as much as I do, I can just roll my eyes and move on. I only really care about spending as much time as I can with my husband. I want to just be happy and enjoy and value my body before it destroys itself. I just want to start living and doing the things I've always wanted to do. And I think that's the most important thing of all.
I doubt I've learned everything I'm supposed to yet, but hopefully it's been worthwhile for me to share what I do know. Cheers to another year of learning and a lifetime of adventure!
- Vanessa
I've changed quite a bit, and I'd like to say it's for the good, but it isn't. I'm even less patient now and somewhat more aggressive. I have less compassion for people who smoke. Every time I get a headache (and I read an actually study about this, it's not just me!), I worry I'm having an aneurysm rupture/stroke. I also value the human body less and my back and stomach hurt more now. I'm not sure if it's the disease progression or because I know what's happening. Maybe both. My kidneys are set to grow .7cm a year. I try not to think about my future as much because I don't think I'll be too fond of it.
But there are some good things, too. I'm way more patient with myself. I feel vindicated and relieved after so many doctors blew me off. Like...after every UTI, a nurse would tell me: "You know you need to wipe front to back." Duh, but I'm coming in with UTIs all the time, so what is she supposed to think? And doctors thought I didn't take my medication properly, because I'd sometimes get them consecutively. I occasionally imagine going back to all the Instacare clinics and saying: "You're all stupid!" But honestly, how would they have known?
I don't put nearly as much pressure on myself to be like everyone else or to please anyone. If I don't want babies, I have an even better excuse than I've ever had before. No one can judge you for that (well, some people still can) if you've got a genetic illness. I don't care about finishing a bachelors degree. I don't care about pensions or anything old-people related. I don't have to worry about getting old anymore! I have an instant connection with 1 in 500 - 1 in 1,000 other people, and I can somewhat relate to other people with other genetic illnesses. I have compassion for them, especially if theirs is worse than mine.
I don't care about stupid things anymore. Not that there were many, but now if someone judges me for sleeping as much as I do, I can just roll my eyes and move on. I only really care about spending as much time as I can with my husband. I want to just be happy and enjoy and value my body before it destroys itself. I just want to start living and doing the things I've always wanted to do. And I think that's the most important thing of all.
I doubt I've learned everything I'm supposed to yet, but hopefully it's been worthwhile for me to share what I do know. Cheers to another year of learning and a lifetime of adventure!
- Vanessa
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