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Mitch
03-26-2011, 05:29 PM
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
03-27-2011, 12:19 PM
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
03-27-2011, 12:37 PM
Thanks for the info! It's nice to know about resources in the south.

Mitch
03-27-2011, 01:00 PM
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
03-28-2011, 01:39 AM
Danell, that is great to hear! I'm so relieved Mitch can get proper care now. :thumbsup:

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
03-28-2011, 02:38 AM
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
04-15-2011, 10:44 AM
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
04-15-2011, 11:36 AM
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
04-15-2011, 12:21 PM
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
04-15-2011, 01:14 PM
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

LilyPony
04-15-2011, 09:02 PM
Thanks so much - I'll give them a call and see what they say. I"m ANCA negative and some confusion of whether it's even wegs or some other vasculitis (by inexperienced docs though). Not that I want to be sick or sicker but really wish that ANCA would just be positive for once so I could be taken seriously.

10 years ago the rheum dept had some research going on so I think I was in a good palce at that time, but now, not so good!

LilyPony
04-16-2011, 01:15 AM
Danell you're my hero!

I called this morning and explained my situation of having no known kidney involvement and ANCA-negative. I started with an admin asst, who put me through to the kidney clinic secretary, who said "let me put you through to his office". I thought I'd get his secretary, but then heard a casual "hello?" and it was Dr. Nachman himself. It takes a miracle to get a doctor to return a call when you're a current patient, and here I am talking to him right away. He's got the Vasculitis Symposium next month and said he's got no clinic time in May between that and something else he'd got coming up. I said that it was fine, that I understand, am basically okay and have no problem waiting for an appointment as long as I know it's on the horizon. I was told to call the appointment line a bit later after he had a chance to speak with them. Just got off the phone and he made room for me on 4/29.

I know I won't get into JHU before then because they were scheduling new patients in late May when I checked in last week. So I can keep that in process, see how it goes with Dr. Nachman, and then maybe he can work with them or maybe he's perfect on his own, I don't know. Just excited to have an appointment with someone involved with current research.

Mitch
04-16-2011, 08:51 AM
I am soooo freakin' happy for you!!!! Dr. Nachman is such a kind and caring person. If you go to the NC Memorial Hosp. and check him out, you will see that vasculitis, whether it be ANCA related or not, you will see his publications have been in vasculitis in general. I don't think you need to go any further with JH. I think the man knows his smoke!!! Good luck. Glad I could help you with finding him.

Stephanie78
06-21-2011, 01:51 AM
Ok, so we have also been visiting Chapel Hill Hospital. When we first started the journey we thought for sure that we would have to go to John Hopkins for futher for care. The only reason we dealt with UNC is because my husbands ENT sent him there when he got worse and the other places couldn't get us in for a couple of months. I had no clue that they were specialist in WG and that they discovered the ANCA.
We dealt with Dr. Michael Smith of the rheumy group there and Dr. Faulk for the Neuphology group. They are A.M.A.Z.I.N.G. They are able to work with our drs in Wilmington and we will travel to UNC for the CTX (Chemo) Treatments once a month.
Not only did they offer incredible care for my husband (On both visits which last a week each time) They were incredible to me ! They allowed me to stay with him overnight (We live 3 hours away) And made sure we had private rooms with a pull out bed and that I always had enough blankets, pillows and etc. They have room service (A menu that the patient orders from) And they informed me that I should order too, this way it would keep our expenses down. They informed me that I could shower in his bathroom and were always coming in just to chat or keep me company if he was sleeping. We developed such a bond with the drs and nurses. We had one night where a nurse stood in Johns room and cried with us (The first visit) and this past visit when my husband broke down the dr took his hand to reassure him while crying herself.
My husband was rolled in a Kansas State Wildcat fan...He WALKED out a Carolina Tar Heel Fan!

Mitch
06-21-2011, 07:42 AM
That is SO wonderful to hear! We are also happy with our experiences there! Dr. Nachman in the nephology dept. is our doctor and he has added Mitch to two trial studies currently taking place there. He has personally called our home on a couple of occasions...highly unusual. I feel like a tremendous load has been lifted, knowing that we are in very capable hands. Sounds like John is in the state Mitch was last fall with the chemo and all; we were associated with a different hosp at the time; they followed the textbook treatment for the disease, but finally sent him to Chapel Hill when they felt he needed a doctor with more experience. This was a few months ago.
If John is on Prednisone, which I would think he is, it really affects emotions. Mick stayed on the verge of tears for soooo many months. As of last week, he is off for the first time. He is really doing well, with the exception of perhaps permanent neuropathy in his feet and hands.
I love your last comment!!! Mick is a Wake Forest grad, and inspite of the fact that his sister and our daughter graduated from UNC, he has never been able to pull for this rival; he even wore his WF pajamas and hat to his last overnight visit to UNC. I think he has a new found respect!!!
Good luck to both of you. John will be better, for sure. It will just take time.
Thanks for your contact!!! Stay in touch.
Danell