PDA

View Full Version : Looking for Recommendation for Hospital/Doctor



debhaz22
08-11-2013, 11:49 PM
I am newly diagnosed with Wegener's and live in South Carolina. I know Mayo in MN, Johns Hopkins and Cleveland Clinic are very good centers for me to go to next, but I'm not sure which one to visit. Can anyone offer their experiences/advice on the above 3 centers please? I appreciate it very much!
Thanks

Dirty Don
08-12-2013, 01:51 AM
Welcome debhaz...nice place to visit here! LOL! But, glad you found us, I'm sure you know there is lots of good info and very nice and caring people on here...use it wisely! I'm a Mayo patient in Phx, so am living with Mayo! But, peeps on here have attended Hopkins and Cleveland Clinic, and I don't believe there's much of a difference in quality of treatment from those centers. Some others will tune in with their experiences at some of those places. Best to you!

debhaz22
08-12-2013, 01:54 AM
Hi Don (?), Thanks! I really appreciate your welcome, I feel so lost! So the Mayo in Phx has a Wegener's Center or Dr's? I didn't know that, only heard about the 1 in MN.

Dirty Don
08-12-2013, 02:02 AM
Hi Deb, nice to meet ya! There is a Mayo in Jacksonville, FL with at least one recommended WG doc there. Someone will let you know soon on here. Mayo here in Phx has a Rheumatology center with a couple of WG experts...well, they are more expert than I! LOL! Mayo tends to be very aggressive with this disease at first, then they are very patient once you are on the right track. I understand your confusion and 'blues' over this...it's scary at first. Well, it's scary for the rest of your life right now. Sooooo, you need to procure the best docs available, and, at the least, get a doc who understands and is willing to consult with specialty docs...there are many who will do this for you. Hang tough...patience, fortitude, and discipline are necessary requisites for getting thru this as best as possible. Keep asking questions Deb!

Pete
08-12-2013, 05:44 AM
Hi Debra,

Several of us in Ohio see Dr Alexandra Villa Forte at Cleveland Clinic. Some others see Dr Carol Langford there. My experience with Dr Villa Forte has been very positive. She spent over 90 minutes with me on my first visit last year. She got me established on the most recent protocol for weggies who have stabilized following disease onset. I now see her 2-3 times a year where we review labs, symptoms (or lack thereof), and future treatment.

They are also pretty aggressive with initial treatment with a stronger immunosuppressant, prednisone, and bactrim. She put me on methotrexate a year ago and guided my taper off prednisone.

I've recommended Dr Villa Forte to others, and they have expressed satisfaction (and good results) with her.

Good luck and better health!

Debbie C
08-12-2013, 11:28 AM
Hi Deb, welcome to the group and sorry you had to join. I ,like Pete, also go to the Cleveland Clinic but I see Dr. Garry Hoffman. He's a good dr. I'm just a bad paient ! I can't seem to tolerate the meds to well so right now I am just on 5mg. pred. What does your dr. have you taking. If he is not to up on wg. you might want to see if he can get a consult with one of the more experienced drs. The is always the Vasculitsis Foundation website that might help you locate a dr in your area. Good luck and keep us posted

debhaz22
08-12-2013, 12:27 PM
Thank you Don, Pete and Debra. I really appreciate how kind and helpful you all are here. The Rheumatologist that I'm seeing here in SC ran some more blood work last week and has me scheduled to see him in 3 months. 3 months! That doesn't seem right does it?? He told me I have Wegener's last week and has me on no meds for it. That's why I think I need to go elsewhere. It looks (just from the limited research I've done in the past few sleepless nights) that Mayo, JohnsHopkins and Cleveland seem to be highly recommended. I'm just trying to sort out what I should do next

Debbie C
08-12-2013, 12:46 PM
Yes 3 months is definetly TOO long to wait. You need to find a dr. that knows what he is dealing with sooner than that. Did your bloodwork numbers come back good ? Where is the wg. involvement at...lungs,sinuses,kidneys ? Did they do any kind of biopsy to confirm or just bloodwork ? Get yourself another dr....soon or see if they can't conference one at one of the clinics

Dirty Don
08-12-2013, 12:48 PM
If you have the resources and time, go to the one most highly recommended by people on here, vasculitis websites, and so on. 3 months is ridiculous...you need to be treated NOW...the most successful recovery efforts are almost always associated with an early dx...it's pretty simple...NO WAITING! Good luck.

debhaz22
08-12-2013, 12:51 PM
That's what I was afraid of. He waited 2 months to tell me he thought I had Wegener's from my blood and urine tests. That's why I need to get in at one of the 3 centers. I'm having another CT scan of lungs on Tuesday because my Pulmonologist pushed for it.

Debbie C
08-12-2013, 01:12 PM
If your pulmy thinks its wg ,he should be able to get you on some meds or recommend another dr.

debhaz22
08-13-2013, 12:18 AM
I'm going to try to get an appointment at either Mayo or Johns Hopkins (just easiest for me to get to). Do I just take any Dr. who specializes in WG who can see me soonest? Or do I request a specific Dr.?

drz
08-13-2013, 02:12 AM
I'm going to try to get an appointment at either Mayo or Johns Hopkins (just easiest for me to get to). Do I just take any Dr. who specializes in WG who can see me soonest? Or do I request a specific Dr.?

Check the list of experts on vasculitis foundation and call for info and appointment. John Hopkins apparently dropped out of the longitudinal study on GPA but don't know if that has any bearing on who is available there to treat it. I live in Minnesota so of course I go to Mayo in Rochester and see the department chair who has done a lot of research on GPA. There are probably more experts listed for Rochester and Cleveland than the other locations which might increase your chances of an early appointment.

VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

Start here and call the closest one to you and work out from there till you find one that has a good match for you in available time slot and ease of getting of there. If you have kidney issues or concerns Falk in NC is considered very top notch.

annekat
08-13-2013, 04:18 AM
Welcome to the forum, Deb. The more time you spend on here, the less lost you will feel. The forum has been indispensable for me. And I'm grateful for the existence of the internet, so that this is even possible.

Your rheumatologist is the type none of us wants. I don't understand where he is coming from. My WG treating doc is a pulmonologist and not a WG specialist at all, but when he found out I had Wegs, he IMMEDIATELY prescribed me the correct drugs for my situation. Any doc can find out what these are. That should have been done in your case, followed by your looking into the WG specialty centers you are referring to. True, most people are treated by rheumatologists as their main WG doc, but there are apparently many rheumies with little or no Wegs experience or knowledge. Unfortunately there are none of those recognized specialty centers anywhere near me, so you are lucky to have the opportunity to go to them, even if it requires a bit of travel. In spite of this drawback, I am doing quite well, but it is always good to get the best you can get.

pberggren1
08-13-2013, 04:29 AM
There is also UNC.

annekat
08-13-2013, 05:27 AM
I might add, Deb, that you really need treatment right away, as others have said. So try to find a doc in your community, maybe your primary care provider, to prescribe you an immunosuppressant such as cyclophosphamide (CTX, Cytoxan) or methotrexate (MTX), and there are others, depending on your level of WG involvement. This could be done in advance of getting with a specialty center, although if you can get in there very soon, that would be even better... Your local doc could consult with a center on the VF site about meds and dosages if necessary. I know that for me, if I had had to wait for treatment for any length of time after dx, I would have been in really bad shape and don't know if I would even be here today. Everyone is different, though; your case could be lighter than mine was at that time, but mine is lighter than many, and things can always get worse, especially without treatment.

Just read about your pulmy being involved in the testing. Debra is right; if HE thinks it's WG, he can prescribe the meds. Then you can still get with a real specialist.

debhaz22
08-13-2013, 05:37 AM
It seems as though I need to get the ball rolling on my own is what I'm taking away from the posts. After talking to some family, Cleveland Clinic may be my best choice for me right now. Thank you all for your help, I really appreciate it.

pberggren1
08-13-2013, 09:38 AM
Ron Falk at UNC would be much closer for you and they are great. I have known others from this Forum that have seen him personally and just love him.

debhaz22
08-13-2013, 09:44 AM
Thanks Phil, I'll look into both and see who I can get in with sooner, price of airline tix...

pberggren1
08-13-2013, 10:39 AM
What symptoms do you have though?

Tri-state
02-10-2014, 05:24 PM
Hey deb, I have been seeing dr Stuart Levine at johns Hopkins for the past several years. On my first visit he checked me out and talked with me for over an hour. Also before I left he called the ENT and ophthalmology dept and had me checked out that day. After several failed attempts with other local drs. I finally found someone who was taking this serious.

As a patient I am required to send him monthly labs. And if there's any problems he will send me an email and set up an appointment. Also the drs work very close together and keep each other updated.

Im sure most of the good hospitals work like this. Mayo,Cleveland clinic etc. and you probably can't go wrong with any you chose.

I live in east tn and it takes me about 9 hours to drive to Baltimore but its well worth it.
Goodluck in choice