New for the South

[Mitch]

A pulmonogist sent us to NC Memorial in Chapel Hill, NC. I had looked this up under the rheumatogy area and had found no significant info there. As it turns out, all of the research regarding Wegeners has been done in the kidney area of the hospital. What a joy it was for us to find this wonderful doctor who has done multiple studies in this area. There's a lot going on there for you folks in the South. Mick is a part of studies and it only took 5 days to get an appt. Also, we will be going back in 2 days for a different chemo. They work very quickly. GOOOOOOOD!
So, for all of you southern Wegs, this is the place to go
. Dr. Patrick Nachman...he is the bomb!

[elephant]

I go to Cleveland clinic once a year, I may not go this year. I like my local Rhuemy and it has worked well for me so far.

[Kathie28]

Thanks for the info! It's nice to know about resources in the south.

[Mitch]

As long as you have a situation that you're happy with, I say stick with it. You sound like you're in a good place concerning docs. We were fluttering around with no one in charge...and basically desperate to have a doctor with knowledge in this vasculitis area.

[Sangye]

Danell, that is great to hear! I'm so relieved Mitch can get proper care now.

Do you know about the mini-VF Symposium in Chapel Hill on May 14? Check out the VF website. Dr Nachman is one of the speakers.

[Mitch]

Thank you, Sangye! Yes, I do have the literature on the VF Symposium; however, I haven't read it thoroughly so I was unaware that Dr. Nachman is one of the speakers. Pretty impressive!! I hope we'll be able to attend.
Take care of yourself!

[Stephanie78]

My husband was just diagnosed and we are in Wilmington NC just a couple of hours from Chapel Hill. Do you know if Dr Nachman requires a referral from the ENT or can you just make an appointment? My husband has been referred to a Lung Specialist by his ENT but we have been told that we need to go to a Wegs specialist

[Mitch]

Stephanie, so glad you wrote. I would imagine your husband would need a referral; however, I don't know this for a fact. Why don't you have your ENT or whomever made the diagnosis make the call? I think you would get in faster that way. Dr. Nachman's office # is 919 966 2561. Also, a doctor's call would bare more importance since the diagnosis would be a sure thing and would come directly from the doctor. Good luck!

[LilyPony]

Do you know if they're treating just patients with kidney involvement there? I've had bad luck with UNC rheumatology and still waiting for my JHU appointments but really struggling with symptoms getting worse the last few days and am in a lot of pain. I've only got eye/sinus/upper respiratory involvement though, no known kidney problems. I saw this when you first posted it but since I didn't have kidney issues didn't think they'd help me. I'm getting a little desperate now.

[Mitch]

Like you, I first checked in the rheumatology dept. at UNC and saw nothing there...no one who specialized in any type of vasculitis, so I dismissed that hospital. Our pulmonologist made the the contact with the kidney section. That's where all of the ANCA vasculitis research is going on in this area!!!! Such a surprise for me. YES!!!!! Have your doctor, whomever he or she may be, contact the kidney center at UNC. BTW, our lung doctor didn't make the contact because of kidney problems, but because of Wegs. We are now working with a Wegs specialist, Dr. Patrick Nachman - ph. # 919 966 2561. Good luck to you. I KNOW you'll find help there. Danell