In CT

[Sr.Roc]

is there any one on this forum from CT I just found out i have WGS 3 week ago and want to know about
DR's and were they get there tretment.

[elephant]

Welcome Sr.Roc, there are four vasculitis centers, John Hopkins university, Cleveland clinic, Mayo in Rochester Minn....oh prednisone got the best of me. :) ..can't remember. Check out the Vasculitis Foundation they have a list of doctors, and you can also check out the threads on the forum ...start typing in the white box advance search upper right corner.
How are you feeling?

[JanW]

Boston will be closest to you Sr. Roc. Peter Merkel of Boston university is a lead investigator on many studies. Also Paul Monarch who works with him. What are you areas of involvement?

[pberggren1]

Sr. Roc: When you posted CT I was thinking of Computed Tomography not Connecticut.

[Jack]

I had no idea what CT meant.

[Doug]

Hell, Jack, most Americans don't either! [Ha!?]

[pberggren1]

Actually you are right Doug.

[Sr.Roc]

They have me going to UConn med center for treatment my wife is from maryland, so we were thinking about moving there to go to john hopkins.

[elephant]

Good choice, you will get great care ...you need a Wegeners specialist...I think Dr Seo is at John Hopkins University.

[Sangye]

Yup, Dr Seo is my doc at JHU.

[JanW]

He's great. I saw him at the conference. Very funny and a very good speaker. They were all surprising good speakers which is strange considering they aren't picked for that necessarily -- they are basically the only Wegs specialists in this country. Coincidence? Well, if they say all us Weggies are some of the nicest people they've ever met, I think that they are pretty nice too!

[Aunnie]

Hi JanW

How were DRS Merkel And Monach?
They are my docs from Boston.

Thanks

[JanW]

They were great. Merkel was a very good speaker -- clearly the joker and real extrovert among all of the docs. Always quick with a quip. I met several of his patients.

Monach's lecture on the immune system was like med school and I will be the first to admit that I didn't understand it. But he was excellent in later discussions about the dangers of the medication and the randomness of who will relaspe and who will not. The takeaway message is that, no matter what an jndividual patient does or doesn't do, we just don't have enough evidence to know why people relapse or why they don't -- except that we can expect that a majority will relaspe. I thought he said this more clearly and consistently than most of the docs, although my surgeon did say that people will saddle noses can collaspe their repairs if they flare -- really, really bad news for me!

[Aunnie]

Thanks Jan.

They are both very knowledgable.Dr Monach does work more in research,is very good with patients. He also lets me e-mail him if any problems or new symptoms occur.
I do also see Dr Merkel.

Aunnie

[elephant]

JanW it's so cool that you got to meet all these wonderful Specialist! Probably one of the best days of your life besides of course being married ...ect

[JanW]

I just listened to them speak, elephant...I didn't meet them. As you might expect they were swarmed with patients at every turn, and I figured they had problems much more pressing that mine...I'm fortunate enough to have specialists that I see on a regular basis.

[Barbara]

Hi Sr Roc
I'm from Bristol, connecticut, all my doctors are in Yale New Haven i'm very happy with there care and determination to help. I will have names and phone numbers later taday.

please call
work # 860-283-2025
Home # 860-314-1061

barb

[Doug]

I thought he said this more clearly and consistently than most of the docs, although my surgeon did say that people will saddle noses can collaspe their repairs if they flare -- really, really bad news for me!

When I had to have that part of my mandible that died removed (shingles, blood vessels died off, 50% of mandible on right side), the oral surgeons consulted before surgery with the University of Colorado rheumatologist my pulmonologist consults with on my treatment.

Since the surgery was in Denver, the consultation was in my room, where the rheumatologist and a resident who came with him examined me and asked me questions (I had my own...), reviewed the records on my initial treatment in Denver and all notes on my pulmonologist's consultations with the rheumatologist. There were two consultations.

Out of all this examination, blood testing, and consultation came the one thing I didn't want to hear: of three options, building up the jaw with bone taken from my femur was not recommended because I, as a WG patient, had a higher chance the graft would die from lack of adequate blood supply at some point, resulting in yet another surgery to remove it.

I note that I emphasized the fact that I was a weggie to the head oral surgeon, I gave the head oral surgeon my pulmonologist's name and cellphone number (which I asked him for at one point, and he graciously gave me, along with permission to tell other doctors I was seeing to call him on my particulars), that the oral surgeon did call my pulmonologist, and that when I told him my initial treatment was at University of Colorado Hospital and which doctors were involved, he had the doctor (department head) and the resident over to my hospital room the same day.

When we nag about taking an active role in our care, I think this example above is the most dramatic one in my personal experience. I am a quiet, even shy person (yeah, yeah, you are thinking), someone who wouldn't have imagined before I became a weggie of being pushy about getting all the necessary doctors involved in my care together to chat it out.

I mean, they are important, and I'm just a patient, right!? That's how I was before I became a weggie.

[Lightwarrior]

I just listened to them speak, elephant...I didn't meet them. As you might expect they were swarmed with patients at every turn, and I figured they had problems much more pressing that mine...I'm fortunate enough to have specialists that I see on a regular basis.

I guess you've figured out that we (at least me) are hanging on your every word. Thanks for sharing so much with us. Thanks to you I feel like I have a little bit of the benefit of the conference.

[Barbara1966]

Sr.Roc
Doctors at Yale New haven hospital that I see:

Pulmonary
Dr Richard Matthey and Dr Angela Argento 203-785-4198
Rheumatilogy
Dr Liana Fraenkel 203-737-54-30