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.