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Reply
| | From:  joyce5cats (Original Message) | Sent: 11/4/2008 8:40 PM |
My 13 yr. old dtr was just diagnosed w/pkd. We knew it was possible (due to my husb/her father) ... just hoped it wouldn't be this soon. Does anyone on this board know of a good pkd doctor in St. Louis area? I'm not talking about a nephrologist who knows about pkd. I'd like a pkd specialist if there is such a thing in our area. I've been in touch with a wonderful doctor in Denver who is a pkd research specialist but being ~1000 miles away doesn't make for a great fit. |
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Reply
| | | From: barb | Sent: 11/5/2008 12:03 AM |
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Joyce, since we PKDers only compromise about 12% of kidney patients, a
nephrologist would go broke if he/she only had PKD patients. Most nephs are
familiar with PKD. Since your daughter is only 13, you would have her treated by
a pediatric nephrololgist. You are in St Louis so I'd suggest contacting Barnes
Jewish Hospital, where many of the doctors on staff are also associated with
Washington University. Barnes is one of the best hospitals in the country. St.
Louis is also home to St. Louis Children's Hospital.
Barb
In a message dated 11/4/2008 6:01:07 P.M. Eastern Standard Time,
[email protected] writes: -----------------------------------------------------------
New
Message on Polycystic Kidney disease chat &
community
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From:
joyce5cats
Message 1 in Discussion
My 13 yr. old dtr was just
diagnosed w/pkd. We knew it was possible (due to my husb/her father) ... just
hoped it wouldn't be this soon. Does anyone on this board know of a good pkd
doctor in St. Louis area? I'm not talking about a nephrologist who knows about
pkd. I'd like a pkd specialist if there is such a thing in our area. I've been
in touch with a wonderful doctor in Denver who is a pkd research specialist
but being ~1000 miles away doesn't make for a great fit.
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Reply
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Barnes has some excellent nephrologists who are very familiar with the nuances of PKD (not all nephrologists seem to understand that this is more than "just" a kidney disease; they just don't get enough education about PKD throughout the course of their training). That's the hospital in St Louis where a good friend of mine just had a kidney transplant today! I think his doctor is the head of nephrology, but don't quote me on that. You may also want to contact the St Louis PKD chapter or walk coordinator to get some references for a good nephrologist. Go to www.pkdcure.org and click on "connect locally" on the top menu bar. Then just pick Missouri and you should be directed to the appropriate chapter webpage. If there isn't a chapter in St Louis for some reason, call the PKD Foundation at 800-PKD-CURE and ask them for some contacts in St. Louis. While they won't recommend specific doctors, they can put you in touch with active volunteers who may have some local recommendations for you. With your daughter's age, at this point you proabably want a pediatric nephrologist, so another options is to contact the ARPKD chapter (it's a virtual chapter). They have a great network of pediatric nephrologists nationwide. Even though your daughter has the dominant form of the disease, they'll know the good doctors in most all metropolitan regions. To find the ARPKD chapter, follow the instructions for the St. Louis chapter and just click on ARPKD instead. Good luck and I hope your daughter stays wonderfully happy and healthy! Ruth |
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