Thursday, October 05, 2006

Johns Hopkins

Should there be an apostrophe somewhere up there?

Anyway, that's where my PCP wants me to go. Up to Johns Hopkins. He thinks because he doesn't know anything about PKD, and that the cardiologist he sent me to last week to check and make sure I didn't have a heart attack (long story, and I'm fine. Lots of tests and co-pays later it was determined that I, in fact, have a textbook normal heart. Good to know, I guess) didn't have a clue about PKD, that all doctors here don't have a clue about PKD. I tried to tell him that wasn't entirely true, that my nephrologist, who, you know, actually HAD heard of PKD because, you know, it has "kidney" in the title of the disease, and she hangs out with those things a lot, he still wants me at Johns Hopkins. Just because they are the best. Actually, I doubt he actually knows who the best is, but Johns Hopkins is the best at so many things, they are probably the best at PKD, too.

I don't know how I feel about this. After all, does it matter who looks at my kidneys, or who thinks they are uglier, as long as there is no actual treatment available right now? My PCP thinks that often treatments are quickly discovered, or can be administered in the experimental stage, and these things happen at a place, well, like Johns Hopkins, and it could be years before such a thing trickles down to a place like Williamsburg. That may be true, except that we have this crazy thing called the internet, and it is all a buzz all the time about all kinds of voodoo hoodoo and what not about who is doing what to their kidneys. Seriously. It's a jungle out there.

Plus, I feel like the PKD Foundation keeps people pretty well abreast of what is going on, and although the people who show up to the conference may NOT be the experts (something my PCP pointed out--experts don't have time to go to conferences), I still think the info about possible treatments would be passed on to them pretty quickly, and that anybody who is obsessed with finding out information could be fairly satisfied that they would have it. Not that I personally know anybody who is obsessed with information. Or the internet. Or blogging about every flippin' think that comes into her soggy little brain. Hoo boy, no one at all.

He has already set the wheels in motion, so I suppose I am just going to sit back and let the powers that be do their thing. I am happy to go to Johns Hopkins, just because I like shocking people with my enormous kidneys. Maybe I could get a "Wow" out of them, too. I doubt much will come of it, though. Still, free trip to Baltimore, I guess. Maybe I'll pick up a souviner from the Aquarium on my way home.


Jess said...

Hi, Heather! I had my kidney transplant at Hopkins in February, and I was REALLY glad to go back to seeing my usual nephrologist rather than the clinic at Hopkins. (I started seeing him at Hopkins but switched to an office that he has closer to my house.)

They're big, and they know a lot, but you're still kind of hit-or-miss with the doctors there. They're all good doctors--otherwise they wouldn't be there--but they all aren't necessarily good with patients. I didn't especially like the first doctor I had there. I adore my second (current) nephrologist and am glad that I switched.

If you don't want to go, enh, don't go. They're your kidneys. There are big names in PKD docs, but I don't know that any of them are at Hopkins. The page with their nephrology staff is here ( ) but I'm too much of a laze right now to see if any of them focus on PKD.

Heather O. said...

Thanks for the input, Jess. I was thinking that for an eventual transplant, Hopkins would be a good place. I know that there are advancements in kidney transplant surgery, and it would be nice to be at a place with cutting edge technology for something that big. I also know that there have been some shifts in medication (like trying to get away from prednisone) that Hopkins might be more current on.

But I'm wary that they could give me better treatment than my local nephrologist. She answered all my questions, and is doing everything I would expect her to do--checking my levels every 6 months, checking the growth of my kidneys, etc.

Anyway, thanks for the info, and thanks for reading!

Jeanne said...

From my mom's experience, I would say your best bet is a nephrologist who has had as much experience with PKD spcifically as possible. Especially when she started dialysis, my mom discovered all sorts of little side-effects that nobody told her about - in the end the very experienced nurse at the dialysis clinic was her best resource as she had seen it all before. If you're having surgery, head for the nearest teaching hospital - but for long-term care, choose somebody YOU are comfortable with and knows about YOUR disease.