my sister....

[elephant]

The one thing you could do Lila is write a letter to the administration ( JHU). Even better write one to the president of the JHU. Hospitals are being rated by their customer service and are rated by their press ganey score. JHU was rated the best hosptial in the Country! So this needs to be addressed especially in your letter.
That was great advice Sangye, so true.

[Sangye]

LOL-- Phil, I used to take on all of them. Now I rarely morph into Joe Louis....

Weggies really have to learn how to deal with front desk staff because we need so many things-- appts, records, questions answered, etc.... But the fact that we don't look sick also makes it tough. They are even less likely to take us seriously!

When a struggle breaks out over getting an earlier appt (for example), instead of telling them how desperately I need one, I say "I'm sure we can work together and figure this out." Then they don't feel like you're blaming them.

I also always make it a point to ask how I can contact them in the least intrusive way. That's how I got Kim's email. I apologized one day for leaving multiple voicemails. She offered me her email and said it was much easier for her than answering phone calls. I get answers immediately that way. I can ask Dr Seo a question or describe symptoms, and she zips me his written answer right away.

[elephant]

This is great advice again Sangye. Hope this will work out for you Lila. It's sad that some of us don't look sick. Sometimes I think should I wear pretend nasal cannula and a fake oxygen tank, and draw fake huge rashes all over my face....and have a rolling walker.....There are WG patients out there who are on oxygen and need a rolling walker to get around and have a nose that is practically falling off. Yes they look sicker but sometimes they too still get ignored. I have friends who said I look great even when I was on a billions pills and at my worst....

[JanW]

Lila -- I don't know if you are in north or south Jersey -- I myself am in Hudson County -- but when I called Dr. Robert Lebovics office (you can read about him on the vasculitis foundation's website -- he did work for the NIH researching WG) at St. Luke's Roosevelt Hospital (west side of Manhattan, 10 minutes from Lincoln Tunnel) at about noon on a Thursday I had an appointment for Friday MORNING. Literally, I saw him before I had a definite diagnosis, and my rheumy had not called ahead (just got dx this past Wednesday and they have already talked about the surgery I will need for my subglottic stenosis and saddle nose). I was treated with compassion and care and he spent almost 2 hours with my husband and I and apologized for taking OUR time. This might be an option that you want to explore for your sister -- I think the website says he has done more than 200 saddle nose reconstructions, and he specializes in dealing with the windpipe in WG patients as well. He allows the local support group to meet in his offices' conference room and is there for questions and consultations. He's a great guy - very down to eath and explains everything very well. The office staff was perfectly fine, and it was clear that WG patients move to the top of the appointment list. I'm seeing him again February 5 and anticipate having surgery soon after that. His number is 212.262.4444.

[Lila]

Thanks everyone for your advice! : )
I think we are moving in the right direction by going to JHU. It's just that she has left other offices because of the office staff. I can deal with them much better than her but until I'm on the HIPPA form JHU is being difficult and won't discuss her appointment's with me. It wasn't a problem until Kim was in an irritated mood on Wednesday! I think you guys are right. The problem should be addressed.
JanW- Thanks for the info on Dr. Lebovic! Is he in New York? I remember hearing that name...prob from all my research! Do you also have saddle nose? My sister does...she has had it for over 10 years, but, with no diagosis. Years ago she had bone, maybe cartlidge taken from her head to repair the saddle nose. But, it did not work.
I just can't wait for this appointment. And....if they cancel again, I'm going to SCREAM!!!! We're starting to get impatient here. She is due to go back to work in a few weeks. She is panicking about losing her health coverage. : (
Thanks again everyone for all the advice and information! I love this site!

[jola57]

Again, I am envious of all of you that can contact their doc and actually get an answer and a proper wegs doc to boot.
I'm green with envy.

[JanW]

Lila: Yes he is in NYC. At St. Luke's Roosevelt which is about 10 minutes from the Lincoln Tunnel, so no more than a 20 minute commute from Jersey for me. I got in with him within 24 hours with a suspected dx of wegeners (the first question the receptionist asks if why you are asking to see this particular doc -- it's a large group), so I have no doubt that they would get someone with a trach in quickly. Of course he cannot dx wegeners but he works with all of the top rheumos here in NYC.

[Lila]

Thanks Jan!
I'm not sure if JHU does surgeries for saddle nose. But, if not, NYC is prob closer than Maryland.
So, you had your surgery already? How did it go?

[JanW]

No. My first surgery will be for my stenosis, and that will probably happen within the next six weeks or so. My nose is more of an optional thing because it is fully functional and Lebovics said it's not likely to get any worse, and that if it doesn't bother me, I don't need to have it fixed. As he said, "I've seen much worse." No one who knew me before (except me and my husband) even really picked up on it -- the kids have never mentioned it for instance, and it saddled a few months ago. Lebovics said that he would take rib cartilage to do the correction, and has had good success with this. He has done over 200 of these surgeries. He also said he hasn't had to do a trach on a WG in more than 10 years as a result of complications from the stenosis surgery, so that if definitely reassuring to me! He did caution that weggies with this kind of problem often need more than one surgery, but both he and the rheumo agree that I don't need to hold off (for remission or whatever) in order to get this done.

[Lila]

Well, if the nose is unnoticable, and doesn't bother you then the heck with it! Why put youself through that?
My sis's nose is very saddled. It bother's her alot. I don't think it looks bad, but she is very self concious of it. Her ENT said that if they did surgery on her nose they would have to keep her trache in while performing the surgery. But, that guy is a whacko, so, I dunno.
What kind of surgery do they do for the stenosis?
What part of Jersey do you live in?