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.

[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!

[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.

[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.

[Sangye]

Onatreetop, I'm with Elephant (and Jack). My alarm bells are going off big time. I'm CERTAIN that if you read your post in the future, it will be evident to you how wrong he is. I'm going to try and contain myself enough to write this reply, but know that my blood is just boiling on this.

First of all, your job is NOT to please your doctors and make THEM feel better. Your job is NOT to spend your limited time and energy dancing around explanations about why you want to see an expert for a life-threatening disease. (BTW-- I would bet he charged you more for that longer visit, too. So you/your insurance is going to pay for his ego trip) Your job as a patient is to be cared for by someone who places YOUR needs over their own.

When I read your post, I was horrified that he made you keep answering why. The one and ONLY answer is "Because I want to." Nothing more is needed. In fact, Wegs or not, any doctor worth his/her salt has no problem with a patient getting another opinion and would never even ask why. (Myself included)

Once Dr Seo at JHU asked me how one of his recommendations was going. It hadn't worked out, but I didn't want to hurt his feelings by telling him. I hemmed and hawed. He's a sharp guy and caught on immediately. He said, "Patients always want to please their doctors. If it didn't work, it didn't work. And if was horrible, then let's call it that. I won't be offended."

Your doc knows JHU's reputation in the world--not just for Wegs, but for everything. He also knows they have a Vasculitis Center that sees patients from all over the world and do enormous amounts of the research on Wegs and vasculitides. If he thinks his puny little experience even comes close to what they have to offer, then he is actually very dangerous to see.

At my first appt with Dr Seo, I was so impressed with his knowledge of Wegs and his understanding of my situation, that I asked him how many Wegs patients they see there (I knew it was a lot). It was only 11:00 am, and I was already his 6th Weggie that day. In addition to treating Weggies day in and day out, he also is one of the VF consultant docs, so he spends many hours a week advising doctors all over the world about their individual patients. Gives lectures on Wegs, does Wegs research, spends his days with other Wegs specialists. There are a very small handful of Wegs specialists in the US, and your doc ain't one of them. He knows that.

Even my lousiest, most arrogant docs all thought it was great for me to go to Mayo when I lived in AZ. And the Mayo docs were thrilled that I could go to JHU when I was moving out here.

You can be certain that you won't deal with this kind of arrogance at JHU. The docs there are the best and they have nothing to prove. All of mine (numerous departments) are quite humble, actually. (I had a brief consultation with a regular rheumy while I was hospitalized last summer. He was quite arrogant. Totally stood out in that crowd. I can't imagine how the others tolerate him or why he's there)

IMO, I would recommend finding another local rheumy (if you need one). This guy will NEVER work with the JH docs on your behalf. He will fight them and get into a pissing contest. I think you live close enough to JH that you don't need a local rheumy, but you can talk to Dr Hellmann about that.

[Jack]

I'm glad you are on here to say what I really think Sangye. I tend to pussy foot around and pull my punches because I'm never confident that I have the facts straight. The internet is a great place for misunderstandings.