my sister....

[onatreetop]

Thanks and yes I am openminded about all of it. I can only work with what I have available to me in the area. Until JHU calls anyway. But driving 4 hours one way to see the doc once a week ...............................I am ok with after I pick up more work to pay for gas and tolls. Dont get me wrong he is a piece of work but is also very generous. That is the only reason my mom has put up with his poop too. She is very easily offened and cant stand rude people but I warned her in advance and told her he will look at the whole picture and he has for her. She says everyother visit is good the others she cant stand him but,,,,,,,,,,,,,,,,,,,,she is able to get around in very little pain now because of his treatments in the infusion lab. He has directed her to some good specialist that she actually likes too. And believe me that is hard to find for her. She hates all any doctors.

[Sangye]

I know what you mean. I was stuck with my original rheumy in northern AZ for almost a year before I was strong enough to get to Mayo in Phoenix. He was the only rheumatologist in northern Arizona! But just awful. Arrogant and incompetent. They usually go hand in hand.

Don't worry about having to drive to JH once a week. You won't need to. You might need a bunch of tests initially, some of which can be done locally. If you need to see other specialists there you can bunch your appointments and go less frequently.

Give JH a call and see where they're at with your intake. They usually send you an appointment letter about a week after receiving all your records. They take a week to review the records.

[elephant]

Onatreetop, You need the best medical care! That's why I drive 10 hours to see Dr Langford at the Cleveland Clinic. She even called me to tell me my CT results of my orbits ( eyes). I was impressed because this shows how caring she is with her patients.
Onatreetop, I too get along with almost everybody. I personally could not tolerate that behavior. I don't know how you do it especially when your on high doses of prednisone. That's when I really open my mouth and say what's on my mind and sometimes I don't mean it. Just so you know we care about you.

[Doug]

I'd find another doctor myself. There needs to be mutual respect between doctor and patient. The patient needs to feel he or she can discuss his or her medical needs with the doctor and get facts, not attitude. I changed ENTs because of a friendly but narrow-mindedness one showed me. I just didn't feel comfortable with his care or the depth understanding he had about my specific medical state at the point I saw him. He basically ignored the judgement of the one doctor most knowledgeable about my whole WG experience!

[Lila]

To everyone that has emailed me: (because I haven't figure out how to send private messages!)

Thanks everyone for all of your information. However, I have tried to read the emails (especially Sangye's) to my sis and she does not want to hear them. I don't understand...if I had this disease I would want to obtain as much info as I could. Unfortuatly, she is keeping her appointment tomorrow with Jefferson Univ. She anticipates having this trache removed. I did however read the emails to my mom and we both have agreed that we cannot make my sis's decisions. She flips out everytime I try to suggest something. I almost feel like all this research (and, I have done ALOT) was useless. She will not take my advise about going to JHU. It makes me so sad. The help is out there for her and she will not use it. She needs to know the truth, and she NEEDS the right doctors.
I work in a hospital and today I questioned one of the top docs (hospitalist) there about Wegener's. I'm not sure if he even knew what he was talkin about because he said she should be seeing a Pulmonologist, and that was basically it. These docs don't care. I'm sorry, but I think this ENT she is seeing just wants to keep doing procedure after precedure on her for the money.

[Lila]

Onatreetop-I just posted something..I haven't figured out how to send you a private message. Sorry!
Yes, my sis had the same experience with Dr. Soloway. She stopped going there. I THINK he has another office in Hammonton, wouldn't that be closer for you?
My sis is going in tomorrow..to have her trache removed. I know it's not the best thing for her right now but she's oh so stubborn. She won't take my advise on ANYTHING : (.
I wish you the best of luck. I know you don't like this doc but at least you are bing treated.

[Sangye]

You're a great sister to be so persistent. I don't think there's anything you can do until/ unless she's willing to listen.

Most docs have heard of Wegs but have no clue other than that. She probably does need a pulmy consult to assess her lungs, but her main doc should be a rheumy. The ENT is probably just lost. Many docs think they can handle Wegs because they've read about it, know the basic pathology involved, etc.... Nothing could be further from the truth. A good doc will say "I'm in over my head" and refer you to the Wegs specialists.

It doesn't bode well for her if she continues on such a path-- denial, unwilling to learn about her disease (including drugs, procedures, options and risks), avoidance of Wegs experts, and insistence that they do what she wants (eg remove the trach). Unfortunately she may wind up learning the hard way.

Please don't think your research has been in vain, and please keep us posted on her progress. At some point, she may be ready to hear.

[Lila]

Yes Sangye, but my persistance is not paying off! I'm treating this very serious (casue it is!). I just got off the phone with my other sis who is an RN..again, I read her your email. (I hope that's okay) She was at my sis's last doc appointment. I tried to tell her too that the trache should not be removed yet. She said that when they went down there with the scope last week the 'crustation' that was on her voicebox was gone. I tried to tell her that the scarring from the subglottic stenosis will get worse..and if another trache is needed it will make it EVEN worse. She is not aggreing with me. I know YOU are right Sangye. I don't know if you are religious, but I am. And, I know that all I/we can do for her is pray.

[Sangye]

Will your other sister read some of the posts on here? It will help her to understand the nature of Wegs better. Active Wegs takes time to control. Many of the symptoms are erratic, and come and go. That may be what's happening with the crusting. It makes it harder for non-Wegs docs to figure out when things keep changing.

And yeah, I'm a little religious....

[Lila]

I will print these posts and give them to my sis to read...when she feels 'up to it'. That's all I can do right now. My mind is tired. I will be back tomorrow night to let you know what happens. Have a good night!