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onatreetop
01-12-2010, 01:38 AM
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
01-12-2010, 01:51 AM
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
01-12-2010, 10:45 PM
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
01-12-2010, 10:54 PM
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
01-12-2010, 10:58 PM
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
01-12-2010, 10:59 PM
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
01-12-2010, 11:07 PM
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
01-12-2010, 11:50 PM
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
01-13-2010, 02:30 AM
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
01-13-2010, 02:49 AM
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. ;)

Sangye
01-13-2010, 03:01 AM
Thanks, Jack. I'm outraged as a patient and as a doctor. If one of my patients ever says "I want a second opinion." I say "Absolutely. I don't need to know who or why unless you want me to. It might help them to see your records from me. Would you like me to send them your records and a summary, or would you like me to give you the copies?" If I send them, they'd have to reveal the name of the other doc, which might make them uncomfortable. That's why I offer to give them copies. I don't care who helps my patients best, I just want them to be well and feel comfortable.

Besides, they are people first and "my" patients second.

Jack
01-13-2010, 03:35 AM
The only time I have ever asked for a 2nd opinion was from my pulmonary consultant who did not seem to be doing much for me and did not want to get involved in any discussion. He was fine about it and asked no questions, but referred me to a different doctor at a different hospital. Unfortunately, the new one could not do much for me either.

onatreetop
01-13-2010, 11:54 PM
I cant wait to go to JHU either. i did have three of six test done yesturday . catscans, Sinus and lungs and than the angiogram.Next is the ENt and the neor. for the emgs of feet and hands. Ihope to have all the results before I go to JHU next week. The sleep study wasnt changed it is still mon the 18th.These were all ordered by Soloway. That and extra blood work to check thyroid and some other things? why I drug my prim doc into it when I couldnt get bonehead last week. He has little understanding of most of this but does listen and can tell after our years together that I am truelly upset and scared. So I am keeping my head at the moment . Finaly bought a good size daytimer to keep everything orginized and together with phone numbers etc. appt times note and list .You have the picture. So now I walk in with my book and cringe!!! Thats what I have to do to keep it all straight. I am ok today slept more the last two nights and what a difference. My friend is coming to do my cut my hair tonight I cant wait. My moms too. I dicide to make turkey tonight I must be feeling good. So today will be a good one. I clean a new house today too. So more income is good too.

moyan
01-14-2010, 12:34 AM
Hi, maybe you should cancel with the doc until you have talked with the ones at JH. They might have the latest finds on tests like MRI.
Luck to you and try to find something to smile at!

elephant
01-14-2010, 12:53 AM
Onatreetop how long does it take for you to clean a house? Do you feel tired after that? I can't even clean my house in one day. Need to break it up. I'm impressed!

onatreetop
01-14-2010, 12:55 AM
I had 3 scans done yest. and have to see the ENt for the biopsy and a new neorlgist for the EMGS. I am headed in a forwrd motion with My wonderful RAs request but cant wait to get to JHU next week. Hopefully there will be news today. How are you making out?

onatreetop
01-14-2010, 01:06 AM
It depends on the house. First it is easier for me to clean any house except mine. To many other things that distract me or laundry, etc. When I go into a home I usually start in the kitchen which takes an hour or two each. Then will dust and vaccum the other rooms the last thing I do is the bathrooms because they can take twenty minutes to an hour and a half or more. I am at a house at least four hours and no later than 7- 8. 7-8 are like 3 or 4 full bathes with jacuzzis shower rooms etc. just like the pictures in magazines. It also depends on how many different kind of surfaces there are to clean , hardwood, tile, carpet, marble, limestone, etc. They all have to be cleaned differently. Most of them swept than scrubed and dried. So..................Yes I feel tired somedays more than others but I noticed if I dont do it I feel worse and ache more.
It would take me a couple days to do my own because of the stuff that needs to be put away or pickup and the laundry that never ends I think you know what I mean. i consintrate on the main rooms like kitchen, downstairs bath , living room and dining room. The rest is trashed most of the time. The areas we are in all the time and also are the same ones that other people might see if they came over are the ones that I worry about.

elephant
01-14-2010, 05:13 AM
Wow, good for you. You can make good money doing that, to me it's a hard job. Have a great day.

jola57
01-14-2010, 12:28 PM
First, good for you onatreetop. Go and see any and every specialist you can find, that is your right. I totally follow Sangye, my rheumy may not be the greatest, but I feel comfortable with him and know that if I wanted or needed a consult he would be all for it. Actually I already consulted "above" his head with a neurologist friend about having a sural nerve biopsy. My friend said no, so I said no to my rheumy and we did muscle biopsy. This was inconclusive and had to have the nerve biopsy anyway. The moral is, never did he ask why, he accepted my judgement and that is why I am grateful to him and still with him. I also like when he is so happy when my test come back good. It lights up his face. As I said he may not be the best, may not be available on email or phone calls but I know that if I realy needed him he would be there for me.
Definitely change docs if you can. You don't need a negative influence right now.

onatreetop
01-15-2010, 12:23 AM
Thank you and yes I totally agree. I use to listen more and speakless. But now i am the one doing most of the talking and question asking! Theres a male nurse at the RAs office and he sees me come in the door out of 30 people and spots me right a way and says here comes trouble!! Well now I beat him to it and call him trouble ! It is all in jest but helps the waiting time pass. He is so funny!!! it's good to laugh at the docs office. Not with the doc if he smiles I feel good and he does. He cant believe how much knowledge I have gained and can talk to me in his lingo and I back. He said he was glad to see that I am learning and taking all of this seriously. Because he knows and I how serious this is. I am his healthist WG to date that he has seen and says he wants to keep it that way.

The work is good. The people very wonderful and happy with my work. It has always been a therapy of sorts for me. I have gotten to grow with tthem and there families. There isnt anything they could ask me to do that I wont for them and they for me. The pay is a great and I decide who , when and for how long. Cant bet that. I dont like to leave a house unfinished but sometimes I just have too go thats the only thing I feel bad about when it happens.They all know that my kids come first and if I need to go they are all understanding. My oldest house is 12 years that I have been coming. i took a brake after the kids were born 6 weeks and i was ready to get back to it. And boy where all those people glad to see me. They reallyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy missed me. i kind of have a cleaning OCD at work. Not home gave up on my house years ago to out numbered but there is nothing like a beautiful house that shines when I am done. And yes most are upper class homes and gorgous!

moyan
01-15-2010, 12:35 AM
Hi. I think your last post came to wrong address, but cats are sitting here wondering why my smile is from ear to ear. What a wonderfully encouraging scriptum! :)

Doug
01-15-2010, 01:23 AM
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
01-16-2010, 12:22 AM
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.

Doug
01-16-2010, 02:08 AM
Good for you! Before long, you will join us naggers as a full-fledged know-it-all, too~! Ha! Seriously, I hope all goes well with you appointment and you start to get control over this dang disease. You doctor will be very pleased to have a patient with her homework done, and you will leave the doctor's with a greater sense that you got the answers you need. I repeat: Good for you, onatreetop!

elephant
01-16-2010, 04:28 AM
I second that! I know I know you will do great talking with those docs and asking them the right questions! You go girl...go ...girl ....goooo!

onatreetop
01-19-2010, 10:32 AM
Thanks so much! I can't wait! I feel like a fighter syking up for the big fight dancing in the corner getting all jumpy!!!! Not a pretty picture am afraid!!

Sangye
01-19-2010, 02:07 PM
LOL-- it's the pred. Best of luck to you, Onatreetop. You'll be fine.

onatreetop
01-22-2010, 11:45 AM
I replied at " My sister thread" sorry. I went and was very impressed the dr. did the whole eval. himself no fellows or anyone. 1 and 1/2 hours with him . So worth the 3 hours to get there and another 3 back. Almost 400 miles for me. He read everything out loud asked so many questions and asked for a week to look at all the scans and test films and will give me his recommedations and or request more testing there. it went very well and he was very calm and polite and a pleasure really. Kim was stressed and told me when I met her that she was training someone to take her place and seemed very upset. Did I mention that he , The DR. gave me his cell phone number too in case of an emergancy like the ER visit again. I found a keeper!!!! He also asked me to email him with any questions or more info.. WOW!!!!!!!! Three states later!!!!! A really good Man!!!

elephant
01-22-2010, 11:51 AM
Again, so happy for you! Feel that you are in great hands! Yahoo!

onatreetop
01-22-2010, 11:56 AM
Thanks I do too. Got a copy of my last labs and am not sure how I should be feeling about them. So I faxed them to Dr. Killmann and my Primary Doc. They were ordered by Soloway but He hasnt called me back with the results yet. So I guess I get to wait and see who calls first???? Maybe they all will???

moyan
01-22-2010, 01:05 PM
Great, tree! We have all been waiting for just this kind of news! Now relax and smile :)

onatreetop
01-22-2010, 01:10 PM
Thanks! It will be a long week to wait for Dr. Killmann but not so long I hope for labs.

onatreetop
01-29-2010, 01:22 PM
Heard from the man this morning! He sounded very sure about his findings and then I asked him which scan he was reffering too? Now he has to check that the catscan was the oldest one with the noddles in the lung not the new that is clear. He 's said he needs to make sure than he will call back. He said was going to tell me to stop the cytoxin and start lowering the pred. and my mouth dropped. But then Dr. Hellmann said to wait until he calls me back. He believes that I might not have WG. After all this??? Noddles and ancr positive earlier. There was no biopsy then so he says might not be WG.

elephant
01-29-2010, 10:38 PM
Wow, if it's not WG what would it be? I know there are some other autoimmune diseases that mimick WG?

JanW
01-30-2010, 12:56 AM
Yes, depending on symptoms, sarc and relasping polychronditis (sp?) immediately come to mind. Those were the ones that matched me (saddle nose, SS, lung nodule) precisely.

Sangye
01-30-2010, 01:15 AM
Onatreetop, I'm so glad you're at JHU. I wouldn't trust a regular rheumy's diagnosis. It'd be great if it's not Wegs. I don't know that much about sarc other than what I can research online. I do know RP pretty well and sure hope it isn't that. (It's even more rare than Wegs and has a very poor prognosis.) It's hard to know which to root for.... I just hope they diagnose you quickly and get you on the best meds. Please don't change any of your meds until you hear from Dr Hellmann, though.

JanW
01-30-2010, 01:22 AM
Even my rheumy with his expertise was very quick to show me my lab results and very clearly lay out why he thought that a biopsy wasn't necessary in this case, even though it is considered the "gold standard." Since I have to have surgery anyway, they will examine the scar tissue from my SS to know for certain, but that didn't prevent him from starting me on meds. On the other hand, I do have the "classic triad" he says -- nose, throat and lung involvement.

onatreetop
01-30-2010, 09:36 AM
He said something about Rhom . Arth. begining possible or the begining of WG. all I can do is wait for the call. I did schedule the local ENT biopsy and bone spur for my nose to be taken care of on the 9th of Feb. He isnt with JHU but it needs to be done. The spur explains the nose bleed on one side and bloody mucas while he is there he mite as well do the biopsy. Then we may REALLY know!!!! I dont have the nose yet but have been watching it change slowlywith weight and swelling. Oh the pain is not fun either.

JanW
01-31-2010, 12:44 AM
How did you get a bone spur in your nose?

Sangye
01-31-2010, 01:37 AM
I'm wondering that, too. They can occur after fractures of the nose or stress to the nose.

onatreetop
01-31-2010, 05:20 AM
when I was fifteen I talked my aunt into getting me a nose job from the plastic surg. she worked for. She is a nurse. The cartlage has broken so many times I cant even begin to guess. It is farther in the nose than you think. Had to use the scope to see it.

onatreetop
02-04-2010, 02:04 PM
Dr. Hellmann said in so many words he doesnt think I have it but said I could also have it. Without the the almight biopsy he wouldnt say because my other symtoms arent so severe. My RA on the other hand is saying that because I have responded to the treatment and because of the symtoms even not severe I diffefinatly have it and need to be monitored and countinue. Oh Hellmann didnt say stop the treatment either. I am now one of five WG's in Soloways office. Hellmann refered to a couple hundred when he spoke numbers of patience that where all in very bad shape not like me? So ...........early discovery is unheard of???????????? Or what I have heard to be limited WG???? My kidneys are holding the only involvment I have had is lungs, mod. joint pain, and the hand art blockage. Which is gone now too. Sinus pain but no cause visable. no infection no masses noda!! So that is were I am at now. And sporting an air boot cast now that the foot has been torn again. Now at the end of the day my bad foot is good and small and the good foot is swollen and larger!! I have two pair of inserts in my other shoe so that my hips and back are even again.

Sangye
02-04-2010, 02:42 PM
Onatreetop, I suggest you ignore anything Solloway tells you about whether you do or don't have Wegs. :)

Early diagnosis is not unheard of with Wegs. Just hang in there until you get the biopsy and hope that it yields some results.