Just diagnosed

[Beth Ann]

Hi,

My name is Brittany and my mother was diagnosed yesterday. I made this account for her so when she begins treatment and starts feeling better she can connect with all of you wonderful people and share her story. However, right now my entire family and I are in a state of confusion and feeling helpless. It started off with a sinus infection that wouldn't go away and it seems to be attacking her kidneys most. She has been in the hospital for 2 going on 3 weeks and they still haven't done anything with her. We live in Pennsylvania and are interested in finding a specialist but I don't even know the first place to start and I can't seem to find much on the internet. If any of you can help we would greatly appreciate it. We're all very scared!

Thanks in advance for your comments and help!
Brittany

[renidrag]

Brittany:
Sorry you had to find us but your Mother is lucky to have you as an advocate for her. Fear is the first thing that sets in after a diagnosis like WG. Most important is who is treating your Mum and where in PA you live. Others will be along shortly to ask all kinds of questions but if you are in Eastern Pa the Johns Hopkins is probably close to you. I think if you go to www.vasculitis-foundation.org you can get more information. There are a lot of wonderful people on here that will help and listen. My best to you and your Mother. Is she on any meds now?
Dale

[renidrag]

Brittany:
Sorry, drop the dash in the website. Been a while since I was there. I should not do anything by memory anymore.

[Beth Ann]

Thank you for your reply and the well wishes We are in Northeastern Pennsylvania. She was just diagnosed yesterday and is being seen by a renal team but they haven't put her on anything yet and it almost seems life they're in as much shock as my family.

[renidrag]

Brittany:
Go to the website and they have a list of Vasculitis Centers and try to find one close by. Is she on dialysis? As you will be told Mum needs a WG specialist and they are listed on the web site. I am going to check right now.

[Jack]

Welcome to the Forum.
This thread is a good one to start out with - What the Newly-Diagnosed Need to Know

[Beth Ann]

Yeah I looked and Baltimore is probably the closest for us. They haven't done anything with her yet. We're lucky enough that she is feeling well and is up and moving around however her kidneys are failing and pretty quickly. I don't know why they haven't started dialysis but they're causing more damage. We just want to start treatment and get moving but they keep delaying.

[renidrag]

It looks like JHU in Maryland is closest, Sangye goes there and swears by it. I am sure she and others will be along soon. They must have slept in this morning.
Dale

[Daggar]

Hi Brittany,

Sorry to hear about your mother. If it is WG that they have diagnosed I'm not sure why they haven't started the immune suppressant/steroid treatments? Our daughter Holly was treated very aggressively and quickly once they diagnosed her with WG and kidney involvement. The doctors were adamant that we start the treatment asap. DRZ, who is a member of this site, would be one of the folks to talk to regarding kidney involvement as well. I'm not sure why they're delaying the treatments -- are there any other underlying health issues that would cause them to delay? Keep asking them questions until you get the answers you need.... if they can't provide them find someone who can.

[Sangye]

Hi Brittany, (I've been up a couple hours, thank you very much! LOL) welcome to the group. I go to JHU and yes, that is where your mom should go. I can't believe her docs have diagnosed Wegs with kidney involvement but aren't treating yet. Holy smokes, that's bad. Isn't she on prednisone at least?

Here's my suggestion:
1) Tell (don't ask) your mom's docs to consult with a Wegs specialist at JHU today. It can't wait. It's free. This will at least get her started on treatment. Note: The JHU doc won't be her treating physician until she goes to JHU in person. That's step 2.

2) Start the process for getting her established as a new patient at JHU. You'll need to collect all of her records from the hospital-- doctor notes, diagnostic tests (eg CT scans, x-rays) and their reports, etc... Their website instructions: http://www.hopkinsvasculitis.org/about/appointments/

3) While you're waiting for the appt, if you have any questions or things don't seem right, tell your docs to consult the JHU doc again. You have to hit the ground running with Wegs, especially with kidney involvement. Please feel free to post any questions here and someone will likely be able to help.