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?
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