Specialist in or near KY

Where is the closest clinic/specialist to Kentucky. I am just beginning this journey and want to be sure to get experienced/knowledgeable care. Thank you

You can check the Vasculitis Foundation’s website. You’re probably going to find s good specialist at Cleveland Clinic (I see Dr Alexandra Villa Forte there) or Nashville.

Happy hunting!!

Thank you Pete. I have looked on the foundation site. Nashville is closer for me But I had not been able to find many post on it. So I felt like Cleveland would probably be best- worth the extra drive. I see a pulmonologist on Thursday and wanted to be prepared with who to request a referral too. Thank you again.

If Cleveland is an option it would be a great choice. Once you have everything figured out (relatively) and are stable you can always look for someone closer to home for more regular care. Then, your close to home person has a big wig at Cleveland who they can always go to for advice if they need to.

I'm in Kentucky. I also see Dr Villa Forte at Cleveland Clinic. Also seeing a pulmonologist there who has been great! Dr. Thomas Gildea. It's about a 4.5 hour trip for us with stops. What part of Kentucky are you? I'm also recently diagnosed.

I am in the Lexington area. My ENT said today that he would begin a referral to CC and Dr Villa Forte for me. Our drive will probably be much longer but that's OK.

Yes, you would be a bit farther. I'm in NE Ky-Ashland. I definitely think it's worth the trip, but you might have more options in Lexington than I do here. We stay at the Tru by Hilton Cleveland Midtown. It's usually pretty cheap and it's a very easy drive to the Clinic.

I have not been able to find anyone in Lexington or Louisville. So I felt better asking for a referral to Cleveland after reading here that so many of you recommend it. I want to see someone with knowledge and experience with Wegeners. Hubby and I are both retired so we do not have to miss work to travel. Thank you for the recommendation of somewhere to stay. I am waiting to hear back about the referral. Does it usually take a long time to get an appointment?

It didn't for me in the fall. They actually offered me an appointment within a week, if I'm not mistaken. My drs office messed up the referral, so I ended up getting online and chatting with a representative and scheduled my own appointment. She was very thorough. I spent about an hour and half with her that first visit.

I spoke with CC on Friday They do have my referral from the ENT but I have not heard back on schedulng appointment. Things ae moving in the right direction though

I would expect that you'll be going to Cleveland before April 1. (No foolin')

That would be great. I also requested the doctor recommended

Well Pete I didnt make it by April 1st. But I do have an appointment for May 22. Hopefully it will be safe by then to travel. Doing pretty well right now. I am having extremely dry mouth/thirst Is that a symptom or something else?

@annmarie6

Well, I didn’t expect Ohio to pretty much shut down when I last posted on this thread. I’m glad you’re getting in. Hope the delay doesn’t cause much grief. OSU canceled/postponed some of my appointments.

As for the dry mouth/thirst, a quick phone call to your PCP is in order.

Thanks Pete. I know we werent expecting this were we? I am just glad I do have an appt. Also I was able to in with Dr. Villa Forte. Thanks for the rec. Hope everyone is doing well through all of this

My pcp doctor and dentist have both told me that my WG meds contribute to a dry mouth. This causes more dental decay, for one thing. Pcp says drinking lots of water helps, and I admit I drink more tea and coffee than plain water. I need to do better. I take methotrexate and prednisone, but everyone is different so Pete is right, a talk with your pcp is a good idea.

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