Info on Johns Hopkins Wegs Specialist

[HopeinTN]

My niece just started a 3 month rotation at Johns Hopkins Hospital for her graduate OT program. Any advice as to how I can get in with Dr. Seo, Dr. Levine or someone at the Vasculitis Center? I feel I have to take advantage of this opportunity while I can.

Thanks in advance!

[drz]

My niece just started a 3 month rotation at Johns Hopkins Hospital for her graduate OT program. Any advice as to how I can get in with Dr. Seo, Dr. Levine or someone at the Vasculitis Center? I feel I have to take advantage of this opportunity while I can.

Thanks in advance!
I would tell her to go to his office and talk to someone about how she could make an appointment to see him. It might be real simple but might take a while before she could get in to see him.

[HopeinTN]

Sorry to confuse. I'm the one that needs the appointment. I now have a free place to stay there. Thought I owed it to myself to make an appointment.

[pberggren1]

Get a referral and make one then.

[HopeinTN]

So I have to get a referral? Who would provide that?

[pberggren1]

Whoever you have for a doc now. At least that is how in works in Canada. Some specialists here don't require a referral though. I saw an ENT out of province many years back and just phoned his office for an appointment.

[HopeinTN]

I'll check with my PCP. Why do they make it so difficult. My rheumy at Vandy (where all my other docs are) won't refer me to a neurologist for my feet/hand nerve issues, she says my PCP needs to do it. My PCP can only refer me to one at his hospital, which I don't care for since they misdiagnosed me. I'm very close to a break down.

[drz]

I would just call direct and ask. They will tell you if you need a referral. Places like Mayo Clinic will let you self refer but may require some complete medical records from any current doctors. Some times referrals are need for various insurance plans but your insurance company can answer that question or John Hopkins insurance department as to whether they can honor your insurance coverage.

[pberggren1]

When I was looking to go to Mayo back in 2010 all I had to do was book an appointment with no referral.

[Debbie C]

That's what I would do also is just call them....I didn't need a referral for Cleveland Clinic

[ArlaMo]

I didn't need a referral for Cleveland Clinic but I did need one to see Dr. Koening at the U of U. I would call and see what their procedure is.

[Sangye]

Dr Seo has been treating me for over 4 years at JHU. Here's a link to their clinic which tells you what you need to make an appt, etc... You do need to be referred by one of your doctors. A PCP is fine.
http://www.hopkinsvasculitis.org/about/appointments/

[Sangye]

Unless you have something urgent, it usually takes about 6 weeks to get in to JHU. Once they receive all your records they take about a week to review them (they do this in great detail). After that, you can make an appt.

The receptionist is named Kim. She's very moody and loses her temper on a regular basis. But I've been patient and kind with her and she treats me well. We sit and talk whenever I'm there. I've taught her a lot about what we Weggies go through. She had no idea at all. There is a caring person in there under all the grumble. LOL And if she tells you she's still waiting on something, etc... it's true. She is good at getting things done but much is out of her control.

[HopeinTN]

Thanks. Yes, I have talked with Kim. I have my records ready to forward to her, but Vandy left out the scans. I need to get my CT'S and send them on. Hopefully I'll get this all taken care of and out the door this week. It's so much work to get it all together. It wears me out.

Happy Monday all!

[KathyB]

The receptionist is named Kim. She's very moody and loses her temper on a regular basis. But I've been patient and kind with her and she treats me well. We sit and talk whenever I'm there.

It's wonderful to experience treating someone with kindness and watching them respond in a like fashion, especially when they are grumpy or negative! It's the power of a positive attitude and respect for others! Great job, Sangye!

KB

[Sangye]

Thanks Kathy. It's a work in progress. LOL

[HopeinTN]

Sangye- I sent my records via fax to Kimberly a week ago and I haven't heard anything nor has she returned my voicemails. Is this typical? I didn't hear back from her but I went ahead and mailed the CD of images.

Take care!

[Sangye]

You won't hear anything back until they receive all your records. After you send everything, give her 1 to 1.5 weeks before you confirm that it all arrived.

[HopeinTN]

Sounds good and thanks for the info.

[Sangye]

You're welcome. It'll be fine, don't worry. Everyone (including me of course) gets panicky about the process at some point. :smile1:

[HopeinTN]

You've got that right. I guess I have to trust that the fax went thru. I have a confirmation on my end. Wish me luck!

[HopeinTN]

I'm so excite! I just got a call and they have accepted em as a patient and want to see me on the 20th! Now, I need to book a flight! I'm so lucky and so happy. I can't thank this site and people on it enough for the direction! Yep, that's you Sangye!

LOL! I feel like I'm accepting an award and giving a speech!

Thanks all and I'll keep you posted!

[Sangye]

YAY!!! I'm so relieved that you're going to be in excellent hands. :hug3:

[HopeinTN]

I will be seeing Dr. Seo.

[Sangye]

That's great. He has a really good sense of humor and is smart as a whip. You'll be happy with his care.

[mishb]

I'm so excite! I just got a call and they have accepted em as a patient and want to see me on the 20th! Now, I need to book a flight! I'm so lucky and so happy. I can't thank this site and people on it enough for the direction! Yep, that's you Sangye!

LOL! I feel like I'm accepting an award and giving a speech!

Thanks all and I'll keep you posted!

Wow, that's the best news I have heard so far today and I don't think much else will top it :thumbsup:

I am so glad you are seeing Dr. Seo because he sounds amazing.
Wish we had a Dr. Seo over here in Australia

We look forward to an excellent report, after the 20th

[HopeinTN]

My appointment with Dr. Seo went well. Sangye, you were right about Kimberly, man she’s hard to warm up to. He agreed that I need to stop the CTX immediately. He wants my Vandy doc to call him as soon as possible to discuss a plan. My concern is that he says there are no signs of active disease even though it feels like very small men boxing in my lungs. Keep in mind, and I think he/they forget, but I never had Weg’s symptoms aside from the pain in my lungs due to the location of the granulomas. I’ve always said that I feel very lucky that my symptoms were just the lung pain and not all the other stuff that my fellow Weggies had to endure.

He did agree that my situation was rather odd, but we had enough to go on. I think since my ANCA test results were abnormal but the lung biopsy was the positive factor. I hope they can get together and go over the next steps real soon as I’m getting ancy.

He wouldn’t call my Vandy doc, but wanted her to call him. Then my Vandy doc called me and said she couldn’t call him until I called and got the notes and labs form my appointment and sent to her. This is all so exhausting.

Thanks all for the well wishes!

[annekat]

I'm glad you got to see Dr. Seo. I, too, would be very excited to be seeing the same doc that Sangye sees! Good to know he wants you to stop with the CTX. It does sound like a lot of bureaucracy between the two doc's offices, but I'll bet it will be worth it in the long run! Here's wishing you the best possible outcome!

[Debbie C]

That is GREAT news,I'm so happy for you. Especially finally getting off the ctx and it sounds like he said you were in remission since there were no signs of active disease.:biggrin1: Can you have that Kimberly lady fax over everything your doc wants to make things go faster ( you would think yr Vandy dr. could get that stuff sounds like you may have pissed her-him?? off by going to another dr.) OH WELL!! It turned out good for you. Are you supposed to go back to see Dr. Seo or is he just gonna work with yr doc ?

[Sangye]

I'm so glad you got in. And yay for finally stopping the ctx. (Btw, did you know that ctx can cause lung problems of all things? I developed a cough while taking it that stopped as soon as I went off it)

I'm sure he'll come up with a good plan that keeps you safe. It'll take them about 1 to 1.5 weeks to get the lab results and notes written. Debra's idea of having Kim fax the info to Vandy is great. Much faster than you requesting them from Medical Records

[HopeinTN]

I emailed Kim about it and she replied within minutes. I must have made a good impression. She said that the labs have been sent to my doc and the notes will be sent as soon as Dr. Seo has signed it. Sounds like we are making progress.　I keep hearing that I have no current signs of active disease, but I can’t help but to thank that the pain I’m having in both lungs (that seem to be getting worse), are just that. I never had any other symptoms other than the pain that started in my right lung that sent me to the ER May 2011. I’ve had symptoms since treatment but all can be chalked up to the treatment itself rather than the disease. My only symptom was the lung pain and it’s now worse than in the past. I feel a pain in the right lung that I most certainly associate with the surgery as it feels like a Charlie horse. However, the other pain I’ve been feeling in both lungs is exactly the pain I felt in the beginning and before surgery. At times it takes my breath away. I can’t help but relate this to the disease since it’s the one symptom I had from the start.
I know they’ll get me straightened out eventually and the biggest part…GETTING OFF CYTOXAN.

[Sangye]

Kim really likes to communicate via email best. She's very speedy about getting back to you. She cannot stand the phone. LOL If you have questions for Dr Seo you can just email her and ask her to pass them on. He's fast about answering most of the time but a couple times he's kept me waiting quite awhile. (Which earned him quite the scolding from me-- heh)

What did Dr Seo say about the lung pain?

[HopeinTN]

LOL. He wasn't sure what was causing the pain. I'm pretty sure I know. It's in the same area as the granulomas. And none of them have gotten smaller.

[Sangye]

Did he say it wasn't active Wegs or that it wasn't highly active Wegs?

[HopeinTN]

I'm pretty sure he said it wasn't active wegs.

[Sangye]

I wonder if it's smoldering Wegs. That's how he described mine awhile back. Signs and symptoms don't worsen but they don't improve, either.

[HopeinTN]

Now that sounds more like what it is. It so hard to judge since I have no other symptoms. Not complaining about that, but it makes it hard to understand.

[Sangye]

Dr Seo is very conservative with the drugs so he might want to use the milder drugs to see how you respond, or even just wait and watch. I'm sure he'll hatch up a good treatment plan for you. Don't worry. :wink1:

[HopeinTN]

I like "conservative with drugs". Yes, he mentioned that we may stop the Cytoxan and see how I do with no other drugs. While it makes me leary since I'm still have what I relate to "active wegs pain", who am I to question him. I'm perfectly fine with no drugs.

Thanks again Sangye for the info and all my Weg buddies for the support.