Specialist consult with local doctor?

[jenjenn711]

My dad, who was diagnosed with Wegener's in 2004, is now back in the hospital with his third relapse. This time his lungs are terrible and he's been coughing for months. He started Rituximab a week ago and we were so hopeful it would help, but he ended up going to the ER yesterday, and we found out last night he has congestive heart failure and pneumonia. We *finally* talked him into traveling a bit to see a specialist, and he has two appointments scheduled. One is at Emory in February, and the other is at Duke eight days after the Emory one. I just don't know if he can wait that long, and at this point I don't think he could travel further even if he were willing.

Somewhere on here this morning I read a mention of getting a vasculitis specialist to consult with the local rheumy. How does this work? Do you do it through the Vasculitis Foundation? Does it take a long time? I would so appreciate any info you all can give on how to go about this, or any info about specialists in general, especially if you know of a good one not too far from us (we are in upstate SC). Thank you!

[Dirty Don]

Hi jenjenn, sorry about your dad going thru all this. Time is of the essence. Yes, the Vaculitis Foundation does connect your docs with their recommended docs. Don't know how long it takes nor where you'd end up consulting...just get on the phone and call them now. Phil knows a lot about where the best WG docs are, ask him directly. As for the rtx working, it needs a while...maybe 5 weeks to become effective. Hard to be patient when dad is in such shape, but you have to be. As for getting an appt. - keep calling...twice a day if you have to...there will be openings. That's the way I got into Mayo...had a 3 month wait, turned it into 10 days by calling every day for a cancellation...it works. He does need to get the pneumonia under control now as it's part of the WG attack most likely. Oh, you are probably between Johns Hopkins and Mayo in Jax...maybe you can call one of those if you can travel much with your dad. Best to you both, keep asking questions on here!

[pberggren1]

Hi Jen. Sorry to hear your dad is flaring again. Dr. Ronald Falk is at UNC. He is a nephrologist. He is very good. There are some others there that know the Wegs too but he is prob the best. I would ask your local doc for an emergency referral to him or just call his office directly and explain the situation.

[Debbie C]

Batman to the rescue !!!! You are good Phil

Jen , sorry to hear your father is in such a bad way right now but listen to Don and Phil,they know their stuff. Does he have a good cardiologist that is familiar with wg ? Have they put him on any prednisone or any other drugs? I hope you will be able to get in touch with someone tomorrow...I will say a prayer for your dad. Stay strong !
I just thought ..I will send an e-mail to debh..she lives in S.C., I'll see who she goes to.I'll keep you posted.