Can you believe that? But it's the conclusion I've drawn from my interaction with all the new people I've met with PKD. They all worry (too much) about protein, salt, water, and caffeine intake. There is a thread where they're talking about making funeral arrangements and writing wills. I tried to start a thread asking about anyone who has PKD and thrombophilia and they just turned it into "Doctors don't know anything about this disease!"
And they don't. They really don't.
My GP had to look it up and he's been in the business for a long time. I mean...this is the most common life-threatening genetic disease, right? Even a lot of nephrologists seem clueless. Everyone is just freaking out and worrying about death when they can get transplants and do dialysis (if they don't have a cardiovascular or cerebral event first).
And that's another thing. I am not planning on getting a transplant because of all the nonsense involved and the terrible pills you have to take. But I learned just how bad thrombophilia is for transplants today. 78% of thrombophilic patient transplants are acute failures within 3 months. That's just 3 months.
But still, I'm not phased. Maybe because I never gave myself hope in the first place, but now I know I have no options. I wonder if it's just my depression. Maybe I want to die? That's not quite true. I want to live a full life, but it doesn't have to be long. And there are so many people living with worse things out there...why should I feel bad?
Wednesday, April 16, 2014
Sunday, April 13, 2014
My husband sent me this on FB today. For no reason.
I love you
I just wanted to say that.
Because I really do
I know things are tough right now, but we are a strong couple and we love each other so much
I know that we will get through this and be stronger as a result
You have inspired me to grow into the man I never thought I would have the strength to become.
You are my guardian angel and I couldn't thank you enough for everything you've done for me. I only hope I can spend the rest of eternity returning the favor.
I just wanted to say that.
Because I really do
I know things are tough right now, but we are a strong couple and we love each other so much
I know that we will get through this and be stronger as a result
You have inspired me to grow into the man I never thought I would have the strength to become.
You are my guardian angel and I couldn't thank you enough for everything you've done for me. I only hope I can spend the rest of eternity returning the favor.
Sunday Happenings
So today has been pretty awesome. I think I'm making some friends in the ward. I had lunch/dinner with Steve and one of our mutual best friends. It was beautiful outside.
I almost got pregnant! Almost kinda. I don't know...we took all the steps necessary and then we decided we're probably not ready and we got Plan B (an emergency contraceptive). We're definitely not ready, but it's kinda fun to think about sometimes.
So yeah! Almost pregnant. And today was awesome!
I almost got pregnant! Almost kinda. I don't know...we took all the steps necessary and then we decided we're probably not ready and we got Plan B (an emergency contraceptive). We're definitely not ready, but it's kinda fun to think about sometimes.
So yeah! Almost pregnant. And today was awesome!
Monday, April 7, 2014
People
I'm one of those people who says "I hate people" all the time. They make me angry. They do stupid things. They do thoughtless things. They're careless and prideful.
And many of us are those things at least sometimes, but you want to know how I really feel?
I love them.
I love people. That's why it hurts so much when we do horrible things to each other. I'm much more hurt and sad than I am angry. Every time. I am so grateful that we're all different and that we think differently, but sometimes we're just plain wrong. I don't believe in "everyone is entitled to his or her opinion." No, we're wrong sometimes and we need to take responsibility for that before those wrong thoughts lead to dangerous actions.
Unfortunately (or fortunately?), I also don't believe in karma. I don't think we'll get punished for what we do wrong all the time and especially not always to the same degree. We will get away with doing horrific things to others. That's why it's even more important that we right our own wrongs.
But, while we do the wrong things sometimes, we are so wonderful. There are people who do such amazing, kind, thoughtful things every day. They live to serve others. And sometimes it's pushing someone out of the way of a car only to get hit yourself, other times it is simply asking someone how they're feeling and looking after their emotional well-being.
We do awesome things. We do awful things. The point is to try our very best to do the right thing every day. To do a good thing. To do a nice thing. It's all about our fruits, ladies and gentleman. Let's try to make them all good, ripe, and tasty.
And many of us are those things at least sometimes, but you want to know how I really feel?
I love them.
I love people. That's why it hurts so much when we do horrible things to each other. I'm much more hurt and sad than I am angry. Every time. I am so grateful that we're all different and that we think differently, but sometimes we're just plain wrong. I don't believe in "everyone is entitled to his or her opinion." No, we're wrong sometimes and we need to take responsibility for that before those wrong thoughts lead to dangerous actions.
Unfortunately (or fortunately?), I also don't believe in karma. I don't think we'll get punished for what we do wrong all the time and especially not always to the same degree. We will get away with doing horrific things to others. That's why it's even more important that we right our own wrongs.
But, while we do the wrong things sometimes, we are so wonderful. There are people who do such amazing, kind, thoughtful things every day. They live to serve others. And sometimes it's pushing someone out of the way of a car only to get hit yourself, other times it is simply asking someone how they're feeling and looking after their emotional well-being.
We do awesome things. We do awful things. The point is to try our very best to do the right thing every day. To do a good thing. To do a nice thing. It's all about our fruits, ladies and gentleman. Let's try to make them all good, ripe, and tasty.
Tuesday, April 1, 2014
Planning to Die
It's oddly exciting and very weird. The questions that come to mind...are not things I would have asked myself before. I try to read as many peoples' experiences as possible. I try to figure out what it has been like for others so I can better make decisions for me.
But it never helps. I've made a controversial decision to not do dialysis or transplant. For now, anyway. I just can't see myself doing dialysis for longer than a month or so. It would only be done in the case that I need more time to say goodbye and all that. It would be hard for me to get a transplant with my blood and veins anyway, and then just all the side-effects, the pills you have to take, the complications, the likelihood that the transplant will fail, a transplant's short life-span...it just doesn't seem worth it to me.
Given that, I could die from kidney failure in my 40's. If aortic or brain aneurysms or heart disease don't kill me first. That could possibly happen 10 years from now.
So...if I don't "fight" as so many people put it, am I committing a sin? Am I being a coward? Not that I think suicide is a sin or an act of cowardice, but is this suicide? Is it the same thing? Sometimes when I am feeling extremely depressed I think of taking aspirin - which causes irreparable kidney damage for PKD kidneys. I only know this because I was looking into alternatives to taking self-administered shots to avoid throwing a clot and dying or losing a baby. If I did take aspirin, would that be like suicide?
I don't want to and I don't know if I even could give myself shots every day. My veins are tiny, they need butterfly needles to draw blood. How can I give myself shots? I hate needles! Should I even have kids? My genes are crap. They sterilize cats that have PKD. Should I just ignorantly produce more defective people? Will the world become a place where there could be discrimination against them someday because of their illness? What about their health insurance? I could do invitro and pgd, to make sure I don't pass on my defective genes, but I consider that procedure abortion. And that is just not an option.
Some women say, had they known they had PKD, they wouldn't have had kids. Some women say otherwise, but still. I can't help but wonder. And then, to bring it full-circle, if I don't get a transplant, I may only live to see them reach 20 or so. I won't be there for them. How could I do that to them? I think it worse to give them hope with some stupid transplant or dialysis, but would they then resent me for not "fighting"? Would they think it was their fault? Should I "fight" and suffer the consequences for them?
I don't know. I will pray as I go, but in the end, my life is already planned out for me. I just have to ask for guidance to make the right decisions when the time comes for them.
But it never helps. I've made a controversial decision to not do dialysis or transplant. For now, anyway. I just can't see myself doing dialysis for longer than a month or so. It would only be done in the case that I need more time to say goodbye and all that. It would be hard for me to get a transplant with my blood and veins anyway, and then just all the side-effects, the pills you have to take, the complications, the likelihood that the transplant will fail, a transplant's short life-span...it just doesn't seem worth it to me.
Given that, I could die from kidney failure in my 40's. If aortic or brain aneurysms or heart disease don't kill me first. That could possibly happen 10 years from now.
So...if I don't "fight" as so many people put it, am I committing a sin? Am I being a coward? Not that I think suicide is a sin or an act of cowardice, but is this suicide? Is it the same thing? Sometimes when I am feeling extremely depressed I think of taking aspirin - which causes irreparable kidney damage for PKD kidneys. I only know this because I was looking into alternatives to taking self-administered shots to avoid throwing a clot and dying or losing a baby. If I did take aspirin, would that be like suicide?
I don't want to and I don't know if I even could give myself shots every day. My veins are tiny, they need butterfly needles to draw blood. How can I give myself shots? I hate needles! Should I even have kids? My genes are crap. They sterilize cats that have PKD. Should I just ignorantly produce more defective people? Will the world become a place where there could be discrimination against them someday because of their illness? What about their health insurance? I could do invitro and pgd, to make sure I don't pass on my defective genes, but I consider that procedure abortion. And that is just not an option.
Some women say, had they known they had PKD, they wouldn't have had kids. Some women say otherwise, but still. I can't help but wonder. And then, to bring it full-circle, if I don't get a transplant, I may only live to see them reach 20 or so. I won't be there for them. How could I do that to them? I think it worse to give them hope with some stupid transplant or dialysis, but would they then resent me for not "fighting"? Would they think it was their fault? Should I "fight" and suffer the consequences for them?
I don't know. I will pray as I go, but in the end, my life is already planned out for me. I just have to ask for guidance to make the right decisions when the time comes for them.
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