my sister....

[Sangye]

Oh man... Well, like you say this may be the thing she needs to take it seriously.

Let me save you some digging : Johns Hopkins Vasculitis Center 410-550-6825.

They'll need all your sister's records-- clinic notes, CT scans, etc... Once they get all the records they take a week to review them before they'll set up an appt. Make sure they get the ER records showing trach, etc... You have to specifically request ER records-- many hospitals don't include them automatically.

Good luck.

[Lila]

Thanks Sangye, Im still at work..I'll get back on later..my sis is now home

[Lila]

Ok...so now my sis is home. Coughing like crazy...trache is in (thank God). The weird thing she just told me is that she said they were checking her blood suger in the hosp last night. They say it shoulod be no higher than 140 and her's was 154. They injected her with insulin. Is this normal? BTW-the docs are talking about taking the trache out AGAIN next week...I have told her it would be a huge mistake. I think she starting to think a lil now...

[Lila]

No Onatreetop, I am sooooo not ready for this snow storm. You know they always try to scare us like that! We never get a big storm down here! I did stop and get the essential bread,eggs and milk. However, I have not got ONE Christmas gift yet. I had planned on doing that tomorrow....but, if it snows that bad(which I doubt), that will have to be put off too! But, it's ok...as long as I have my computer and my kitties to snuggle with I'll be just fine!!! : )

[Sangye]

Lila, those docs are the dumbest I've heard of so far. Seriously. If they knew only the basics about Wegs they'd know better than to be putting in a trach and taking it right back out. ANY doc would know that.

Blood sugar will go high on higher doses of pred. When I was first on 1,000 mg IV solumedrol (equivalent to 1,250 mg pred) my blood sugar went to 350 the first night! Normal for me is 80. I had to have insulin in the hospital. When I got out, they gave me a home meter and I was okay.

I sure hope this gets through to her. She's playing with fire.

[Lila]

Yes, I know she playin with fire. She needs to be more serious about this. She is more concerned with getting the trache out and having surgery to fix her saddle-nose. I really did have a talk with her. I printed most of these messages and also all the info for JHU. I will give them to her when I see her. My mom called JHU today and(as u said!) they need all the records before making the appointment. Unfortunatly, Jefferson Univ. has a 15 day waiting period for the records. She said her doc told her he will give her the name of a specialist at Jefferson, when she comes to his office next week. However, Im almost positive she said the specialist is a Rheumatologist. THATS NOT SUFFUCIENT!!! The weirdest thing of all this is my oldest brother (I think he's 54) has been having symptoms og Weg's too. But, his is more directed with the kidney problems and RA. Sorry if Im rambling...it's 12:13 here and im literally falling asleep on the keyboard!! We are in for a big storm in Jersey, they are predicting 18-24 inches now. We will see! Have a good night..Thanks Sangye for everything. Your wonderful advise is what's keeping me going, and keep pressing her to 'do the right thing'! You are GREAT!

[onatreetop]

They sorry about your sister bouncing around but like you said it is not time for playing games right now.Did they raise the pred yet? Did they give her more in the hospital? God I hope so. The snow is what it is and no weather forcaster can forcast in this state for some strange reason. We will all find out soon enough. Just watched the rader and it says it is snowing hear but it isnt yet?? The kids are mad like I have the weather remote or superpowers! I wonder if there is a way to get the doctor that is treatingyour sister to call JHU for you? Sometimes they can get quicker results. My RA has a patient cordinator that makes all my other appts and schedules all the testing too. I have to say it is a nice extra. But I decided to call myself but I am not anywhere near the condition your sister is in either.

[Lila]

Yea..I was thinking even if she did go back to Soloway...he's an arrogant jerk, but at least she would be on meds. Right now she is home and is on NOTHING...but Nexium and Hydrocodone. She wont even take the pain meds anyway. I thought she would stay on the Prednisone but apparently the ENT wants her off of it. I dont even know what else to say or do. She's the one who needs to make the next move. She told me that when she goes for her follow up next week she will not let them take the trache out. We will see....

[onatreetop]

I am not even sure that he is in the office next week? i saw him wednesday and he was going to take a week off with family. But the nurse prac is there and the office is open while he is away.Even if it is to get on the meds? She could if she wants too. You can only do what she wants to do or is ready for but no pain meds either? Holy poop and ouch!!!I wish you all the support you need to deal with all of this. you must be a saint! i still have shopping to do too. Oh well maybe on the way home from the airport?

[elephant]

Lila, sorry you guys have to wait to see a rheumatologist. If she gets worse she will have to go to the emergency room, least she will be treated. Maybe by a miracle their might be a doctor there familiar with Wegeners Disease. I know of one person who has wegeners disease who was diagnosed 30 years ago and by chance the ER doctor figured it out. She came in with a nose bleed that would not stop, plus other symptoms. Anyways, I am so thankful we have these wonderful people on this site who are able to help. I love the fact the Sangye had the medical knowledge to explain this stuff. take care