UOAA Discussion Board

I had my continent urinary diversion May 2nd and still don't have an ET Nurse. My surgery was done in NYC but I live in CNY. No one will take me on as a patient because my surgery was not done here. So what do I do? My doctor "local urologist" is not helping. I am having to make all of the phone calls. I've checked with all of the ET nurses in my area that I had phone numbers for and stll can't find one. I've had to do every thing on my own and I've never even had a stoma before. They keep telling me to go back to NYC which is 7-8 hours away if I need to see an ET Nurse? IS this normal? I even called the UOAA Syracsue chapter and they could not find anyone? I am so scared, need help with suppies, and learning how to catheterize in 3 weeks.

ALSO DID ANY OF YOU HAVE THE FEELING YOU NEEDED TO PEE (PHAMTOM URGENCY) IF SO HOW LONG DID IT LAST AND WAS THERE ANY TYPE OF MEDICATAON THAT HELPED YOU GET THROUGH IT. I DON'T HAVE A UTI.

Thank You for the help with the ET Nurse and the "phantom urgency" questions..........

Alley![/img]

Try giving your Surgeon in NYC the phone number of one of the E.T.'s and see if he could not give them and order through
their Hospital or Clinic.

Good luck and be well,
Charles in TX

You can locate the nurses who live and/or work in your city or state by clicking on
http://www.wocn.org/secure/Source/cDire ... Search.cfm , entering your city and state -- or just your zip code and a radius parameter -- and clicking 'search' at the bottom. Be careful that as you move down the page, the selection in the state box doesn't change (it used to do that to me pretty often).

You mentioned Syracuse, so I tried that, and found 3 listed. When you see the list of communities, you can click on through to get specific contact information for any of them.

I would call each of the ET nurses in your area and ask them what you need to do become one of their patients. Tell them that you can not travel so far to see the ET in NYC. You may need to get a referral from one of your doctors, but that should be easy enough to get.