New for the South

[LilyPony]

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]

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]

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]

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]

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