It's only been 3 years, but it feels like forever ago! I have yet to get my annual urine and blood tests done, but I'm sure it's fine.
I don't think about PKD ever. Not that I'm ignoring it, but I've accepted it. It's not the worst thing in the world, and it's not terrible yet. So who cares?
My only complaint is the loneliness. Nobody really knows what this is. No one in my family has it. People who do have it are annoying.
Anyway, it's been a fine year, hardly any symptoms or issues. For awhile we were talking with our doctor about having a baby, and he seemed knowledgeable and excited. We ultimately decided not to have a child anytime soon (mental health reasons), but it's good to have some time to prepare.
Things are good.
Monday, August 8, 2016
Friday, October 23, 2015
Pills
That is what I would dislike the most about PKD. I assume. From what I know. It bothers me well over enough that I have to take 4 pills a day for my mental health (and I'm supposed to be taking 5). And this lady has a makeup bag full of medicine. Not my cup of tea, thanks.
But it does bring up an issue again. Babies! Yay... there is a choice. And I never think of it because we're just nowhere near the point of having them, but should we even? Why? Why not? We should make a list sometime. As far as now goes, my doctor asked us last visit if we had talked about having kids yet. He said "sooner rather than later" and said the absolute cut-off would be 35 years old. So I have 11 years to think about it.
Tuesday, October 20, 2015
2-year Diagnosis Anniversary
It's a bit late! Oops!
But that's how little I think of it now. It's just a thing that pops up every now and then. I follow the PKD Foundation on Facebook and there are some neat posts I share every once in awhile, but I'm not digging for information anymore - I know pretty much all there is to know. I'm not in any support groups (they're a nonsensical, colossal waste of time). Back pain is common, but not debilitating.
In fact, I don't get UTIs nearly as often anymore. It used to be a 3+ times a year thing and now it's like...once a year. Last year there was only one...and it was on my anniversary. Yay.
There is just no point in freaking out. And I think what freaked me out the most is not knowing things. Sure, I mourned the high probability of looking pregnant in the decades to come. I flipped every time I got a headache. But now I've accepted my genes. What good would it do not to? It's unlike a lot of PKD patients. Many of them - at least the ones in support groups - are profoundly uneducated (about their OWN BODIES! I'll never understand). Many of them worry far too much and drastically alter their diets to try to prevent progression, even though most of these changes are proven to be ineffective.
And they're just on the group every day praying it away and wishing others well and hoping their kids don't have it. And they're allergic to being frank about things. Facts. They just cling to "hope" and worry their little minds into psychosis.
Yes, it's a serious disease. Yes, it SUCKS not knowing what PKD deck you've been dealt. I'm sure it's difficult dealing with passing it on to progeny, but you just have to let it happen. You're stuck in that body, and it's gonna do what it's gonna do. Medicine seems to be catching up. There is finally a treatment to slow cyst growth available in a handful of countries (not the USA still...). And, while there are still plenty of us who die of aneurysms, heart disease, and infection, and plenty of us living every day with immense pain, mental anguish, and horrifying bodies, it could be worse.
I, for one, am happy it's not something like cystic fibrosis or Huntington's disease. Our friend's wife has cystic fibrosis. She's always in the hospital and she has a difficult time breathing. Her life will likely be MUCH shorter than mine, and it will have sucked (medically) the whole time. My life may be shortened or not. I get to live a relatively normal life until my 30's. My issues will deal with peeing, not breathing. I can feel horrific, exhausted, and in a world of pain, but she will never know what it's like to feel normal. Kidney transplants often fail, but lung transplants fail 50% of the time.
And Huntington's is also progressive, but much more horrifying than PKD. I just think it's far scarier to lose your cognition and descend into mental illness over time. Not to mention losing control of your body movements. That's just a sad, sad thing.
Anyway, that's a rant. And I realize I have no idea what's ahead of me. Maybe everyone's fear and complaining is warranted. Most people have a family history, after all. And some of the ones I've read of are pretty tragic. Especially brain aneurysms in little kids. Some people say they "wouldn't wish it on [their] worst enemy".
So I don't really know how bad PKD is, but why should I worry?
Cheers to another year of pretty good health!
But that's how little I think of it now. It's just a thing that pops up every now and then. I follow the PKD Foundation on Facebook and there are some neat posts I share every once in awhile, but I'm not digging for information anymore - I know pretty much all there is to know. I'm not in any support groups (they're a nonsensical, colossal waste of time). Back pain is common, but not debilitating.
In fact, I don't get UTIs nearly as often anymore. It used to be a 3+ times a year thing and now it's like...once a year. Last year there was only one...and it was on my anniversary. Yay.
There is just no point in freaking out. And I think what freaked me out the most is not knowing things. Sure, I mourned the high probability of looking pregnant in the decades to come. I flipped every time I got a headache. But now I've accepted my genes. What good would it do not to? It's unlike a lot of PKD patients. Many of them - at least the ones in support groups - are profoundly uneducated (about their OWN BODIES! I'll never understand). Many of them worry far too much and drastically alter their diets to try to prevent progression, even though most of these changes are proven to be ineffective.
And they're just on the group every day praying it away and wishing others well and hoping their kids don't have it. And they're allergic to being frank about things. Facts. They just cling to "hope" and worry their little minds into psychosis.
Yes, it's a serious disease. Yes, it SUCKS not knowing what PKD deck you've been dealt. I'm sure it's difficult dealing with passing it on to progeny, but you just have to let it happen. You're stuck in that body, and it's gonna do what it's gonna do. Medicine seems to be catching up. There is finally a treatment to slow cyst growth available in a handful of countries (not the USA still...). And, while there are still plenty of us who die of aneurysms, heart disease, and infection, and plenty of us living every day with immense pain, mental anguish, and horrifying bodies, it could be worse.
I, for one, am happy it's not something like cystic fibrosis or Huntington's disease. Our friend's wife has cystic fibrosis. She's always in the hospital and she has a difficult time breathing. Her life will likely be MUCH shorter than mine, and it will have sucked (medically) the whole time. My life may be shortened or not. I get to live a relatively normal life until my 30's. My issues will deal with peeing, not breathing. I can feel horrific, exhausted, and in a world of pain, but she will never know what it's like to feel normal. Kidney transplants often fail, but lung transplants fail 50% of the time.
And Huntington's is also progressive, but much more horrifying than PKD. I just think it's far scarier to lose your cognition and descend into mental illness over time. Not to mention losing control of your body movements. That's just a sad, sad thing.
Anyway, that's a rant. And I realize I have no idea what's ahead of me. Maybe everyone's fear and complaining is warranted. Most people have a family history, after all. And some of the ones I've read of are pretty tragic. Especially brain aneurysms in little kids. Some people say they "wouldn't wish it on [their] worst enemy".
So I don't really know how bad PKD is, but why should I worry?
Cheers to another year of pretty good health!
Tuesday, August 18, 2015
Record
This is why blogs are bad. People change and their thinking changes. Especially with therapy, I've been thinking less destructively. I hate looking back at my posts and seeing factual errors and bad attitude. But I'm keeping it up because that's the record I kept. When I wrote those things, I wrote them in my mindset at the time. I can't just pretend I was always as chill as I am now! ;)
Anyway, things have been well here. The less I think of it, the better, but even when I do think of it, it's not a big deal. It's not yet, anyway, and that's the part that matters. I've been practicing mindfullness (living in the present rather than the past or future), and it really helps. Anything could happen to any of us, so just live in the now.
Anyway, things have been well here. The less I think of it, the better, but even when I do think of it, it's not a big deal. It's not yet, anyway, and that's the part that matters. I've been practicing mindfullness (living in the present rather than the past or future), and it really helps. Anything could happen to any of us, so just live in the now.
Friday, May 8, 2015
Facing the Future
Today, after getting some teeth extracted, my husband needed to fill a prescription. Because I was due for a refill, I figured we'd both go to Rite Aid. We sent in our requests and waited for them to be filled.
While we were there, a man came and sat right next to me, with only a tiny end table between us. He first asked if we went to UVU or BYU. I told him we both went to UVU and that I was studying criminal justice and Stephen was studying history education. "Oh!" He said, smiling.
There was, of course, an awkward pause because I didn't know what to talk about next. Somehow he did.
"Do you know what this is?" He said, raising his arm from the arm rest. There was a white bandage. I noticed his arm was swollen, but I hand't realized what it was.
"It's for dialysis."
It was like I was an alien and I found another of my kind. I blurted out: "Oh! I have PKD, what do you have?" Uh...smooth.
He looked surprised and replied something along the lines of: "Nephritis." He continued to explain that he'd been on dialysis for 10 years. I asked if he'd gotten on the transplant list yet and how far he was. He explained that he wasn't on the list, that he was stage 3, and that he'd had a pig's valve implanted in his heart to replace a valve. He was "part pig". He'd had high blood pressure and congestive heart failure twice.
I was kind of in a trance state. Finally, I met someone with kidney problems. Not that they're rare, but it was just my first time seeing an older person with actual kidney issues. They were typical kidney issue issues, but I think that was useful. He got up to leave, I told him sincerely that it was nice to meet him, and he said "You too."
Just as he left is when it hit me. That's my future. That's what almost certainly will happen to me. Or at least similar things. Maybe worse things. Maybe not as bad things. But that person did me a service. He showed me what I can maybe expect.
I've heard it all before from the internet, but the "support groups" would always blather on about nothing, not really knowing anything about the disease they HAVE, and to just "keep a positive attitude". That's fine, but I want information. No one I know has had PKD before. I still don't quite know what to expect. And everyone is so different, it's not like hours of research can give much of an idea.
So this man did me a favor. It was a little disheartening, but also enlightening. He seems to be okay other than dialysis which is notorious for severely impacting quality of life. But that guy seemed alright. If he can do it, how could I not? Not that, at this point, I'd ever want to be on dialysis, but that's about the worst of it and people get through it.
I really am glad I met him.
While we were there, a man came and sat right next to me, with only a tiny end table between us. He first asked if we went to UVU or BYU. I told him we both went to UVU and that I was studying criminal justice and Stephen was studying history education. "Oh!" He said, smiling.
There was, of course, an awkward pause because I didn't know what to talk about next. Somehow he did.
"Do you know what this is?" He said, raising his arm from the arm rest. There was a white bandage. I noticed his arm was swollen, but I hand't realized what it was.
"It's for dialysis."
It was like I was an alien and I found another of my kind. I blurted out: "Oh! I have PKD, what do you have?" Uh...smooth.
He looked surprised and replied something along the lines of: "Nephritis." He continued to explain that he'd been on dialysis for 10 years. I asked if he'd gotten on the transplant list yet and how far he was. He explained that he wasn't on the list, that he was stage 3, and that he'd had a pig's valve implanted in his heart to replace a valve. He was "part pig". He'd had high blood pressure and congestive heart failure twice.
I was kind of in a trance state. Finally, I met someone with kidney problems. Not that they're rare, but it was just my first time seeing an older person with actual kidney issues. They were typical kidney issue issues, but I think that was useful. He got up to leave, I told him sincerely that it was nice to meet him, and he said "You too."
Just as he left is when it hit me. That's my future. That's what almost certainly will happen to me. Or at least similar things. Maybe worse things. Maybe not as bad things. But that person did me a service. He showed me what I can maybe expect.
I've heard it all before from the internet, but the "support groups" would always blather on about nothing, not really knowing anything about the disease they HAVE, and to just "keep a positive attitude". That's fine, but I want information. No one I know has had PKD before. I still don't quite know what to expect. And everyone is so different, it's not like hours of research can give much of an idea.
So this man did me a favor. It was a little disheartening, but also enlightening. He seems to be okay other than dialysis which is notorious for severely impacting quality of life. But that guy seemed alright. If he can do it, how could I not? Not that, at this point, I'd ever want to be on dialysis, but that's about the worst of it and people get through it.
I really am glad I met him.
Sunday, January 18, 2015
Aneurysm Testing?
I know I've talked about it a million times but, as you probably know by now, 40% of us have brain aneurysms, which "can rupture, causing intracranial hemmorhage and death in 8-11% of patients".
I'm not sure if that means 8-11% of the 40% or 8-11% of total patients.
Either way, it's enough to bother me. I'm a bit nervous I may be one of the 40%. So, I've been thinking (and I'm really anticipating my next nephrology appointment) of getting that checked out. I'm not sure where to start, but I'm insured now, and I'd love to take advantage of that.
But then I think about the results. What if I am one of those 40%? What would I do? Would I freak out? Could I sleep at night? Or would I be relieved and glad to know it's being monitored? In fact, if it's sizable, they could coil/fix it. That way, there would be no worries at all. But then again, if they're not big enough, they won't do anything but "watch" them. What then?
I usually like knowing what's going on with my body. It makes all the changes less scary and worrisome, and it makes me feel empowered about these things I'm otherwise powerless over. But, with PKD, it had a major downside of knowing there are two nasty things growing in my body. That I am powerless to fix my symptoms, that many of my symptoms were not even related, that this is progressive, that I am alone.
So what could this bring, if aneurysms are discovered? What bad things could come of that? Is it worth the worry it might cause? What about the positives that could come of it? No more unknown. No more senseless concern. My life might even be saved.
I wanna do it.
I'm not sure if that means 8-11% of the 40% or 8-11% of total patients.
Either way, it's enough to bother me. I'm a bit nervous I may be one of the 40%. So, I've been thinking (and I'm really anticipating my next nephrology appointment) of getting that checked out. I'm not sure where to start, but I'm insured now, and I'd love to take advantage of that.
But then I think about the results. What if I am one of those 40%? What would I do? Would I freak out? Could I sleep at night? Or would I be relieved and glad to know it's being monitored? In fact, if it's sizable, they could coil/fix it. That way, there would be no worries at all. But then again, if they're not big enough, they won't do anything but "watch" them. What then?
I usually like knowing what's going on with my body. It makes all the changes less scary and worrisome, and it makes me feel empowered about these things I'm otherwise powerless over. But, with PKD, it had a major downside of knowing there are two nasty things growing in my body. That I am powerless to fix my symptoms, that many of my symptoms were not even related, that this is progressive, that I am alone.
So what could this bring, if aneurysms are discovered? What bad things could come of that? Is it worth the worry it might cause? What about the positives that could come of it? No more unknown. No more senseless concern. My life might even be saved.
I wanna do it.
Wednesday, January 14, 2015
My Indoor Bike
As you may or may not know, my sweet husband bought me an exercise bike for our 2 year anniversary. No, it wasn't because he thinks I'm fat. No, it wasn't because I think I'm fat (I am overweight, but I'm too lazy to care). I realize I haven't really told anyone why I wanted it in the first place. I love telling everyone how strong I've gotten - I really have, I gain muscle like a champ! - but not why. So I worry everyone thinks I'm hiding some kind of emotionally abusive relationship.
It's not that at all. In fact, it's much more embarrassing and painful.
I wanted it because I want my body to look it's best while it can. You know, before PKD belly sets in.
PKD belly is not a gross thing. On most people, you hardly notice it and, if you're a female, most people just assume you're pregnant and all is well. But I am happy with the proportion of my waistline to my hips. My waistline makes my hips. My breast size is nothing to write home about, my tummy is loved by some and hated by me, and everything from the neck up is...just okay most of the time.
My waist-to-hip ratio is all I have, and PKD belly would destroy that. I just don't think I could feel pretty or attractive if that was taken away. I'm terrified, really, but what can you do? Nothing. Except "have a good attitude" about it and let it happen.
So I am, but I want to really enjoy my body first.
And I guess I am liking it more. I do thoroughly enjoy being strong. Feeling strong. Having more stamina. It's nice to fast-walk between classes without getting winded. I'm not losing any weight, but I'm pretty satisfied with the results. And I guess that's what this is all about. Getting stronger. Furnace of affliction and all.
Cheers, especially to any PKD readers out there.
It's not that at all. In fact, it's much more embarrassing and painful.
I wanted it because I want my body to look it's best while it can. You know, before PKD belly sets in.
PKD belly is not a gross thing. On most people, you hardly notice it and, if you're a female, most people just assume you're pregnant and all is well. But I am happy with the proportion of my waistline to my hips. My waistline makes my hips. My breast size is nothing to write home about, my tummy is loved by some and hated by me, and everything from the neck up is...just okay most of the time.
My waist-to-hip ratio is all I have, and PKD belly would destroy that. I just don't think I could feel pretty or attractive if that was taken away. I'm terrified, really, but what can you do? Nothing. Except "have a good attitude" about it and let it happen.
So I am, but I want to really enjoy my body first.
And I guess I am liking it more. I do thoroughly enjoy being strong. Feeling strong. Having more stamina. It's nice to fast-walk between classes without getting winded. I'm not losing any weight, but I'm pretty satisfied with the results. And I guess that's what this is all about. Getting stronger. Furnace of affliction and all.
Cheers, especially to any PKD readers out there.
Tuesday, September 2, 2014
Change.
A surprising amount of things change after you find out you've got a serious illness. Things you wouldn't even expect. I know I touched on this in my "1 Year!" post, but it's been bothering me. I wasn't sure I wanted to do this, but I feel like it's relevant to PKD.
The things I'm talking about are purely psychological. Firstly, the headache fear. They've actually studied this. 10% - 40% of us have intracranial aneurysms so, when we get headaches, there is a sense of fear that we're having a bleed. I've learned to get over this fear as I've learned that the bleeding causes an unprecedented type of headache usually accompanied by nausea, vomiting, or unconsciousness. But still, headaches just aren't the same anymore.
That's the most frivolous change. Mostly my personality has been affected, and I hate it. I think it might be because I'm less anxious (believe it), but I say what I think more. Sometimes this is a good thing, but most of the time, it's not. Some of the irrational things my brain comes up with just aren't acceptable, so I've been able to monitor what comes out of my mouth. Not that I wasn't honest before, I just wasn't mean before. I've gotten way more mean, bitter, angry, impatient, self-absorbed, and depressed. So my irrational thoughts beforehand are even more cynical, pessimistic, and crazy than before. And the gates are open!
It's frustrating. I hate meeting new people because it's not the real me. I hate that some people I really care about only knew me for a year before my diagnosis and that maybe they think this is who I am. I can't control my new feelings. My special parchment states that I have a pure heart, but it doesn't feel like it anymore. Like I'm half of what I should be.
On top of that, it just feels like no one cares. People, family even, forget that I have this. They forget the name of it. One family member compared it to PCOS, and thinks a transplant is a cure-all. It's clear she has no idea what PKD is. It seems like none of them do sometimes. Which is another thing. Why has no one been tested yet? Why has no one so much as Google'd this? It's selfish, but I feel like it's not being taken seriously. So it's like I'm rotting away (personality-wise, mentally, and physically) and no one even notices. Or maybe they just want me to get over it. I do too. I really do.
I kind of understand though. Having this makes it hard to get life insurance. It's a bit scary. And, as is apparent, it's life-altering at the least. Maybe they don't want to turn into neurotic, mean people. Anyway, I just wish I could tell everyone that this isn't me, like wearing a sign or something, but then it's an excuse. I truly hope I'll get over this sometime but that, in the meantime, people will forgive me.
The things I'm talking about are purely psychological. Firstly, the headache fear. They've actually studied this. 10% - 40% of us have intracranial aneurysms so, when we get headaches, there is a sense of fear that we're having a bleed. I've learned to get over this fear as I've learned that the bleeding causes an unprecedented type of headache usually accompanied by nausea, vomiting, or unconsciousness. But still, headaches just aren't the same anymore.
That's the most frivolous change. Mostly my personality has been affected, and I hate it. I think it might be because I'm less anxious (believe it), but I say what I think more. Sometimes this is a good thing, but most of the time, it's not. Some of the irrational things my brain comes up with just aren't acceptable, so I've been able to monitor what comes out of my mouth. Not that I wasn't honest before, I just wasn't mean before. I've gotten way more mean, bitter, angry, impatient, self-absorbed, and depressed. So my irrational thoughts beforehand are even more cynical, pessimistic, and crazy than before. And the gates are open!
It's frustrating. I hate meeting new people because it's not the real me. I hate that some people I really care about only knew me for a year before my diagnosis and that maybe they think this is who I am. I can't control my new feelings. My special parchment states that I have a pure heart, but it doesn't feel like it anymore. Like I'm half of what I should be.
On top of that, it just feels like no one cares. People, family even, forget that I have this. They forget the name of it. One family member compared it to PCOS, and thinks a transplant is a cure-all. It's clear she has no idea what PKD is. It seems like none of them do sometimes. Which is another thing. Why has no one been tested yet? Why has no one so much as Google'd this? It's selfish, but I feel like it's not being taken seriously. So it's like I'm rotting away (personality-wise, mentally, and physically) and no one even notices. Or maybe they just want me to get over it. I do too. I really do.
I kind of understand though. Having this makes it hard to get life insurance. It's a bit scary. And, as is apparent, it's life-altering at the least. Maybe they don't want to turn into neurotic, mean people. Anyway, I just wish I could tell everyone that this isn't me, like wearing a sign or something, but then it's an excuse. I truly hope I'll get over this sometime but that, in the meantime, people will forgive me.
Saturday, August 23, 2014
Pain
By far, the biggest complaint (and there are a few) in the PKD world is pain. It's weird, because there are some doctors out there who believe it wouldn't cause any pain to have cyst-infested footballs in your stomach - squishing up all your organs causing GERD, IBS, and what the medical community calls "mechanical problems". Basically, you can't tie your own shoelaces. And, for the 85% of us who'll win the prize of developing polycystic liver disease, it's markedly worse as far as pain goes, and there's much less room in your abdominal cavity.
Clearly those doctors don't know anything about PKD, another common problem in our world. But pain management is necessary. There are a few things that could cause your pain and, judging by what is ailing you, they have different methods of addressing it. If your pain is caused by kidney tissue being pulled apart by the growth of your yellow friends, they prescribe pain medication ranging anywhere from Acetaminophen to morphine. If your yellow friends are too big, they'll de-roof or aspirate them. It's just a fancy way to say "pop and drain". They can even take a kidney out if it's getting too big for the rib cage to hold.
There are different thresholds for pain. When described in medical text the pain can be chronic or spontaneous, mild, or severe. I guess it really depends on where the cysts are. As I've mentioned before, there was a girl about my age in the support groups who couldn't even go to school with her 8 cysts. I have "too numerous to count" decently sized cysts and, luckily, it hasn't been that bad.
It hurts almost all the time. It especially hurts when I bend or twist at the waist or if I'm sitting without my back supported. Two years ago, the pain was mostly in my stomach but, as time goes on, it's all in my back and it's getting worse pretty quickly. When I worked at Maverik is when it started getting really bad. I figured my back was just sore from standing 8 hours a day, 6 days a week. That made sense and, when I stopped working, it got better. Now though, it doesn't go away. I only work 15 hours a week on busy weeks, and I don't do much heavy lifting, if any.
Here is my point: I really worry I won't be able to work. The jobs I've always wanted require moving things. Moving bodies probably wouldn't be a good idea - it's one of the reasons I stopped trying for mortuary school. But even moving equipment, running, and standing are becoming chores as it is, and it's only going to get worse.
There's also the fact that I really don't want to ask for help. I like sucking it up and pretending to be tough. Fake it 'til you make it, right? But I complain about my back more than I'd like. I say: "My back hurts." And then I stop saying it and get some pills. The pills aren't working anymore. I read a study that Acetaminophen actually does nothing for back pain. I believe it, but I don't know what to do now.
I guess I'm just embarrassed that I need it. Or maybe I'm just scared to "be on medication". It's like the first step on the road to a battle I'm not ready to fight.
Clearly those doctors don't know anything about PKD, another common problem in our world. But pain management is necessary. There are a few things that could cause your pain and, judging by what is ailing you, they have different methods of addressing it. If your pain is caused by kidney tissue being pulled apart by the growth of your yellow friends, they prescribe pain medication ranging anywhere from Acetaminophen to morphine. If your yellow friends are too big, they'll de-roof or aspirate them. It's just a fancy way to say "pop and drain". They can even take a kidney out if it's getting too big for the rib cage to hold.
There are different thresholds for pain. When described in medical text the pain can be chronic or spontaneous, mild, or severe. I guess it really depends on where the cysts are. As I've mentioned before, there was a girl about my age in the support groups who couldn't even go to school with her 8 cysts. I have "too numerous to count" decently sized cysts and, luckily, it hasn't been that bad.
It hurts almost all the time. It especially hurts when I bend or twist at the waist or if I'm sitting without my back supported. Two years ago, the pain was mostly in my stomach but, as time goes on, it's all in my back and it's getting worse pretty quickly. When I worked at Maverik is when it started getting really bad. I figured my back was just sore from standing 8 hours a day, 6 days a week. That made sense and, when I stopped working, it got better. Now though, it doesn't go away. I only work 15 hours a week on busy weeks, and I don't do much heavy lifting, if any.
Here is my point: I really worry I won't be able to work. The jobs I've always wanted require moving things. Moving bodies probably wouldn't be a good idea - it's one of the reasons I stopped trying for mortuary school. But even moving equipment, running, and standing are becoming chores as it is, and it's only going to get worse.
There's also the fact that I really don't want to ask for help. I like sucking it up and pretending to be tough. Fake it 'til you make it, right? But I complain about my back more than I'd like. I say: "My back hurts." And then I stop saying it and get some pills. The pills aren't working anymore. I read a study that Acetaminophen actually does nothing for back pain. I believe it, but I don't know what to do now.
I guess I'm just embarrassed that I need it. Or maybe I'm just scared to "be on medication". It's like the first step on the road to a battle I'm not ready to fight.
Thursday, August 21, 2014
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
Friday, June 6, 2014
New Club
I was driving home from dropping Stephen off at school. I was thinking of everything I have to do and when (as usual), when I looked down at my arms. And I wasn't actually looking at my arms, but more at the tiny veins inside.
They've been such a bother whenever I get blood drawn or I.Vs. The stick sites get sore and bruise up. And I say siteS because there is always more than one. They never get it the first time, even when I say to use butterfly needles.
Anyway, I was looking at these annoying things when I realized how nice it would be if I could donate plasma. Certainly it wouldn't absolve my financial worries, but it would certainly help. And then it happened.
I cried.
Everything just flooded my mind. How unhealthy I am and how it will just get worse and there's nothing I can do about it. How my outlook is being forced into these odd directions. I just don't care much about my body anymore one minute, and the next, I'm trying to prevent unnecessary symptoms. I'd have a tattoo right now if I didn't care what Stephen thought. I wouldn't mind getting plastic surgery a few places, if it would make me feel better. Yet, at the same time, I have to live in the moment or I know I'll regret it. I have to take advantage of how healthy I am now. This makes me vain. This makes me judgmental of those smokers on TV who die in their 50's. I get mad at them for doing this to themselves. I eat as many fries and drink as much caffeine as I want!
But there I was. Realizing how weird of a club I've joined. Thinking your whole life that you're relatively healthy (the blood clotting disorder never crossed my mind), and then you find out that you're not only unhealthy, but that you're just going to slowly waste away. It's unnerving. And I really wish I could donate plasma.
They've been such a bother whenever I get blood drawn or I.Vs. The stick sites get sore and bruise up. And I say siteS because there is always more than one. They never get it the first time, even when I say to use butterfly needles.
Anyway, I was looking at these annoying things when I realized how nice it would be if I could donate plasma. Certainly it wouldn't absolve my financial worries, but it would certainly help. And then it happened.
I cried.
Everything just flooded my mind. How unhealthy I am and how it will just get worse and there's nothing I can do about it. How my outlook is being forced into these odd directions. I just don't care much about my body anymore one minute, and the next, I'm trying to prevent unnecessary symptoms. I'd have a tattoo right now if I didn't care what Stephen thought. I wouldn't mind getting plastic surgery a few places, if it would make me feel better. Yet, at the same time, I have to live in the moment or I know I'll regret it. I have to take advantage of how healthy I am now. This makes me vain. This makes me judgmental of those smokers on TV who die in their 50's. I get mad at them for doing this to themselves. I eat as many fries and drink as much caffeine as I want!
But there I was. Realizing how weird of a club I've joined. Thinking your whole life that you're relatively healthy (the blood clotting disorder never crossed my mind), and then you find out that you're not only unhealthy, but that you're just going to slowly waste away. It's unnerving. And I really wish I could donate plasma.
Sunday, May 18, 2014
Support groups/Rant
I guess support groups just aren't for me. I don't like 'em. Always people sharing how awful their day is and how angry/sad they are, yet they comment on everyone else's story like: "Stay positive! Hope you feel better! God bless!"
A: It's a genetic disease. Your body doesn't do something right. No matter how much you want it to, positive thinking won't fix it. Sorry. Bummer, I know.
B: "Hope" you feel better? You don't actually care. You're just here because you don't want to feel alone and you want someone who knows what you're going through. "Hope" is a stupid, meaningless word.
C: God bless. Yes he is, and instead of trying to get him to take it away from you, maybe he gave it to you so you could actually learn from it. You see all those healthy people running around? He picked you for a reason, pal.
Ugh. Anyway, support groups are nonsense. No one is really there for you, it's just more people with the same illness bringing you down every single day. Worse yet, they just spread whatever nonsense they think is fact, rather than actual facts. It's horrendous! And they always complain how no doctors actually know what's going on with them. They don't even know what's going on with them! I had to tell them about PKD1 and PKD2 mutations! It was NEWS to them!
Anyway...I can understand why they'd want a group. Kinda. Most of them at least have family members with the disease that they can talk to. That's usually how it works, but I don't have anyone. And I think everyone I know is tired of hearing about it. Or whenever I bring it up, I just get told that I'm dealing with it wrong or being negative.
I beg your pardon? I'm a realist/idealist, not a pessimist. (Not) Sorry if I speak plainly of things. It hardly indicates pessimism that I'm not going around ignoring my CHRONIC, GENETIC, SYSTEMIC, PROGRESSIVE, LIFE-THREATENING ILLNESS and saying stupid nonsense like: I have hope for a cure! God bless! Think positive!
What actually helps me is being informed. Sorry. Being informed of all the options, outcomes, and possibilities. And I can't bring it up anymore any way because everyone thinks I'm being stupid for not trying this herb or that product or praying it away.
For the last time: it's genetic. It ain't going anywhere, and that's not negative thinking. But yeah, I'm tired of being told how I should be. When was the last time you were diagnosed with a (see previous list) illness? Never? Funny, then who are you to tell me how to feel?
If you want to know how I really feel, I'm relieved on most accounts. That will probably change the sicker I get (oh yeah, should I be excited about gradually wasting into nothing?), but as of now, I'm still happy they actually found something. I'm not crazy. Then, I'm happy I have at least an inkling of how I could die. That's nice. I'm also happy for all the new insight I've gained. It's weird the things you think about when this sort of thing happens. Finally, I'm glad it's not worse. Have you heard of Cystic Fibrosis? We have a friend who's wife has that and I am ecstatic to have PKD rather than that. Ecstatic.
You know? I mean, HELL no I'm not excited to get big giant kidneys squishing up all my organs making it hard to breathe, eat, and poop. HELL no I'm not excited to look pregnant all the time, sleep all the time, pee all the time, and feel nauseated all the time. HELL no I'm not excited about the possibility of dying from a ruptured aneurysm, congestive heart failure, or aortic dissection. HELL no I'm not excited to get osteoporosis, hyperparathyroidism, increased risk of blood clots, edema, an incredibly restricted diet, and all the other BS that comes with kidney failure! BUT it could be WAY worse. I just wish I had someone to talk to. I wish I wasn't so alone. I wish this new part of me could be shared without fear of judgment, bullying, or pushiness. I want to feel acceptance again.
A: It's a genetic disease. Your body doesn't do something right. No matter how much you want it to, positive thinking won't fix it. Sorry. Bummer, I know.
B: "Hope" you feel better? You don't actually care. You're just here because you don't want to feel alone and you want someone who knows what you're going through. "Hope" is a stupid, meaningless word.
C: God bless. Yes he is, and instead of trying to get him to take it away from you, maybe he gave it to you so you could actually learn from it. You see all those healthy people running around? He picked you for a reason, pal.
Ugh. Anyway, support groups are nonsense. No one is really there for you, it's just more people with the same illness bringing you down every single day. Worse yet, they just spread whatever nonsense they think is fact, rather than actual facts. It's horrendous! And they always complain how no doctors actually know what's going on with them. They don't even know what's going on with them! I had to tell them about PKD1 and PKD2 mutations! It was NEWS to them!
Anyway...I can understand why they'd want a group. Kinda. Most of them at least have family members with the disease that they can talk to. That's usually how it works, but I don't have anyone. And I think everyone I know is tired of hearing about it. Or whenever I bring it up, I just get told that I'm dealing with it wrong or being negative.
I beg your pardon? I'm a realist/idealist, not a pessimist. (Not) Sorry if I speak plainly of things. It hardly indicates pessimism that I'm not going around ignoring my CHRONIC, GENETIC, SYSTEMIC, PROGRESSIVE, LIFE-THREATENING ILLNESS and saying stupid nonsense like: I have hope for a cure! God bless! Think positive!
What actually helps me is being informed. Sorry. Being informed of all the options, outcomes, and possibilities. And I can't bring it up anymore any way because everyone thinks I'm being stupid for not trying this herb or that product or praying it away.
For the last time: it's genetic. It ain't going anywhere, and that's not negative thinking. But yeah, I'm tired of being told how I should be. When was the last time you were diagnosed with a (see previous list) illness? Never? Funny, then who are you to tell me how to feel?
If you want to know how I really feel, I'm relieved on most accounts. That will probably change the sicker I get (oh yeah, should I be excited about gradually wasting into nothing?), but as of now, I'm still happy they actually found something. I'm not crazy. Then, I'm happy I have at least an inkling of how I could die. That's nice. I'm also happy for all the new insight I've gained. It's weird the things you think about when this sort of thing happens. Finally, I'm glad it's not worse. Have you heard of Cystic Fibrosis? We have a friend who's wife has that and I am ecstatic to have PKD rather than that. Ecstatic.
You know? I mean, HELL no I'm not excited to get big giant kidneys squishing up all my organs making it hard to breathe, eat, and poop. HELL no I'm not excited to look pregnant all the time, sleep all the time, pee all the time, and feel nauseated all the time. HELL no I'm not excited about the possibility of dying from a ruptured aneurysm, congestive heart failure, or aortic dissection. HELL no I'm not excited to get osteoporosis, hyperparathyroidism, increased risk of blood clots, edema, an incredibly restricted diet, and all the other BS that comes with kidney failure! BUT it could be WAY worse. I just wish I had someone to talk to. I wish I wasn't so alone. I wish this new part of me could be shared without fear of judgment, bullying, or pushiness. I want to feel acceptance again.
Thursday, March 13, 2014
Not getting "treatment"
It's been awhile, hasn't it? I don't think anything became of that Dr's visit except a prescription for Amitiza at the highest dose possible. It actually worked! I was happy, but I no longer have insurance, so I have been taking some probiotics and those have helped tremendously.
I don't have celiac disease and I don't have hyperparathyroidism. I didn't think so, but a majority of patients eventually develop that, so I figured I'd check into it anyway. So...I guess all's well that ends well.
Interesting things have been going on. A couple of close relatives of mine forgot completely that I have PKD. And I'm actually not too upset about that. What can they do anyway? Not much. But it did remind me how alone I am. I have felt so alone lately. It's PKD awareness month (my first one!) and it's been somewhat depressing rubbing this in my own face everyday. Maybe it's helping.
Anyway, it's been making me feel alone. As common as this is, I can't seem to find anyone else around here who's even heard of it. And everyone online is always chirping about "Have a good attitude!" "Don't read things on the internet - it's scary!" "Just eat healthy so you can prolong your kidney life!"
Yeah...you know what doesn't really make a difference? All those things. They only have a good attitude because it hasn't really affected them yet. They're all in their 30's, just finding out about it for the first time. Where are all the ones who are 40? 50? 60? Possibly dead. Possibly unable to leave the bed from pain.
Another thing these people have in common? They're all planning on a transplant being the silver bullet. They're all so sure it will fix everything. They're all deluding themselves.
Well, I found someone today. Someone who actually wants the truth - and will tell the truth. He's in his 50's. Tough guy, pretty miserable, but he hides it. You know what else? He's not getting "treatment". Why? Because he is aware. Because he knows.
When I declined to try multilevel-peddled pills, I was giving up. So I haven't told my family I'm not getting a transplant. I know what they'll say: That I'm giving up. But I wish I could explain that "treatment" just isn't for everyone. Transplantation is pricey, they don't last long - if they even take, I have a blood clotting disorder that makes it so most hospitals won't even try, and you have to wait 5 years to get on the transplant list (and there is no way in a cold Hell that I'm taking dialysis while waiting on that). Up to 25% of transplants fail in the first year. 4/10 fail in 5 years. Is it all that worth it? When it's in, you have to take 30+ pills a day, a few of which raise your risk significantly for multiple types of cancers. You can't do anything because you'll risk getting sick and losing the transplant. I've heard of a lady who's failed 4! What's wrong with you?!
No, a good attitude is not what I need. I need information. I need to know about what we actually experience. I need others to be informed. We need people to demand actual solutions.
Sunday, December 15, 2013
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.
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.
Sunday, October 20, 2013
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.
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.
Tuesday, August 20, 2013
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. :)
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.
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.
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