Dr Hellmann at JHU

[onatreetop]

he is the excutive director, vice dean and chairman of the dept. of medi. thats who I get this time to see. Got a big wig it sounds like. Hope he is good with people? Will find out next week. Thanks for all the elbows. It would have taken me a lot longer to try and make the time or wait for it to get there.

[Sangye]

Oh, Dr Hellman! I couldn't figure out who Dr Killman was! Dr Hellmann, Dr Seo and Dr Levine all run the Vasculitis Center. All 3 are great docs, very kind. I know Weggies who see each of them, and each one thinks his/her doc is awesome.

The Vasculitis Center is actually quite small, reflecting how few people have a vasculitide. When I first went there, I was surprised. The rest of JH Bayview (eg, where the other specialists are) is much larger. And if you ever wind up at the main (downtown) JHU campus, holy smokes. It's like a city--goes on for blocks! I've never seen any place like it.

I'm glad we all elbowed you, too. I always think I'd rather have someone mad at me, but still alive.

[onatreetop]

I am excited. Saw my Ra yesturday and of coarse he asked me why I felt I needed a second oppinoin. I was draeding that . But he wasnt angry or very defense. I told him that I was his patient and wouldnt be there still if I didnt trust him. He asked me why again. I told that in the begining he had said to me that he hadnt treated many WG S so I thought it to be a good thing once or twice a year to have a specialist see me. He said he is a specialist and has been more WGS in his private prac. Then some hospitals have ever seen. Then explained that because it is sooooooooooooooooooo rare the only other that will or has ever seen more would be a clinic or school type hospital and then went on about how they teat or process people, bla, bla, bla. Then he asked me again why, I told him that I am worried about being on the cytoxin so long. He told me that I really havent been on it that long and that because of the lower than normal dose I will be ok. i ask about other drugs to treat with he he said no not now. You arent stable enough yet.
Then I went down my list of events for the week ER, sweeling, Pains, fall, Toenail fell off, numbness increase in feet and hands, bloody mucas and a few nose bleeds. He said he was planning on lowering the pred. but until I have a biopsy of my nose and a few more catscans he has left me at 30mgs and 100mgs. Then said if we need to increase after results it will be the cytoxin that goes up. I dont go back to him till this is done. I have the scans today. The ecgs? nad angyogram? have to be scheduled still. The sleep study is still next monday . I had him in there for almost an hour. But handle him well and we both left smiling.

[pberggren1]

I am a little worried Onatreetop. How long have you been on the cytoxan now - I forget when you were diagnosed? When I think of New Jersey I think of Princeton and Dr. House on T.V. Your sinuses must be pretty bad if he wants a biopsy done now!!! A few more catscans worries me too. These are fairly high radiation compared to x-rays or MRIs, but of course it is a different kind of radiation, but radiation non the less. Please keep us posted.

[Jack]

I hate to sound negative when you are so up, but this does not fill me with confidence. If he does not consider your condition to be stable (and I must say that it sounds like it is anything but stable), then this "low dose" of cyclophosphamide you have been taking for so long obviously is not working. I really think you should be seeing someone who specialises in vasculitis.

[onatreetop]

I go to John Hopkins next Wednesday in Baltimore. The Ra said after the testing he will change the meds, He knows I am worried about having taken them this long but also knows I have to and so do I. If the symtoms would stay the same or improve and stay that way then yes I would be stable. i ahd a good 3 monthes before the first flare know I am trying to get back to that but the body is fighting me. The lung nodules are gone and the blood in the yurn so something is working.

[elephant]

Was your doctor sleeping? So glad your going to the Weg Specialist! My alarm bells are going off!!! A good doctor would understand that you want a second opinion and not question you over and over. Stay well!

[Doug]

Was your doctor sleeping? So glad your going to the Weg Specialist! My alarm bells are going off!!! A good doctor would understand that you want a second opinion and not question you over and over. Stay well!

Exactly. One time I questioned one of my doctors, and, without drama or any indication it would offend him, he said, "Would you like a second opinion?" As it turned out, his opinion was based of sound reasoning and consultation with the very doctors I might have had the second opinion from anyway. You can see any doctor you feel can help you, and most doctors will even suggest possibilities for a second opinion, with you making the final choice. Onatreetop, you did the right thing at the right time. I also wonder about the additional catscans for the same concern Phil brings up. I hope you search for a second, informed opinion provides you and your doctor access to that greater knowledge and understanding of how to treat WG, specifically your case. The Cytoxan dosage in particular should come up with the specialist yoiu arte to see, though, by now, I think enough of us have expressed concern that you will bring it up!

[onatreetop]

I am going with lists and reports and all my ammo. I am going to talk to them about everything .The appointment slot is an 1 1/2 hours and I will be the One talking most of the time I am sure. waiting for the last test results from this week still.

[pberggren1]

Have you been on the cytoxan since you were dx in June of 2009? If so I would be persistant in getting off. My Rheumy always uses Cytoxan as a last resort and never keeps me on it longer than 6 months. Why does your Rheumy want a biopsy of your sinuses now - they must be pretty bad? And what about having a few more catscans? My docs don't like to do these unless absolutely neccessary - they give off high radiation. I am worried for you - please keep us posted.