my sister....

[moyan]

Hi Lila, I guess you are as new as I to this site,so your reply came to my address. Hope you get help soon.
Laughter is internal jogging Moyan

[Sangye]

Moyan, the reason Lila's reply came to your email address is that you've left a message on this thread (called "My Sister..."). So anytime someone adds a message on this conversation thread, you'll get an email telling you about it.

You won't get notified about new messages on threads that you haven't participated in, though. You'll only find out about those when you check in on the site.

[Lila]

Thanks Elephant! The reason that I was asking the question of 'how do you knowwhen your in remission?' ...is because when my sis went to the ENT doc last week he is talking about doing surgery on her collapsed nose. He said he needs to do the sx while she still has the trache in. He mentioned nothing about her needeing to be in remission first. So, my other sis who was there questioned him asking" doesn't she need to be in remission first fefore surgery?" The ENT got pissed that my sis even asked that question! Another arrogant doc....
But, from everything Iam reading...YOU DO NEED TO BE IN REMISSION BEFORE SURGERY!!
So, that's why I was asking that question.
Oh..and Sangye..I printed and gave all the emails to my sis yesterday. I know she will be reading them tonight!

[Lila]

Oh...and Sangye..I hope you felling better today. : )

[Lila]

signing off...gotta get ready to my sis to the Rheumy. Everyone have a good day!

[Lila]

Just got home! Long day with my sis at the doc's office. Sangye, her Rheumy DID write a brief note fot JHU. It's only on a script..it reads "ENT evavaluation re: saddle nose deformity, relapsing polychrondritis?, Wegeners? (hx RA) and recent larangeal stenosis. Pt wants to consider nasal reconstruction.

I hope this is sufficent fot JHU...although...I am just realizing he didnt even WRITE JHU on this script. UGH!!!! it was hard enough to get this from him. To ask for something else would be asking too much in his eyes!

[Sangye]

It's not sufficient. They specifically mention needing 1) A Referral Letter from your Physician and 2) A Summary letter from your physician.

I can guarantee you that he knows that-- they're a major institution. Interesting that he only wrote that she's looking for an ENT evaluation and not a rheumy. He knows a rheumy is the one who would oversee her care. This really chaps my hide.

Here's what I recommend. Call his office first thing Monday morning and tell them exactly what JHU needs. Make sure they know you're reading it off the website. http://vasculitis.med.jhu.edu/aboutus/appointments.html

If he won't do it, then call JHU and ask if a letter from her PCP will be okay. Explain to Kim (JH receptionist) that the rheumy is a jerk and won't budge.

I got into Mayo with just a PCP's letter, since I had already fired my rheumy by then. JHU is harder to get into, but as long as they have a good summary of what has been done to date, it might be okay.

[Lila]

Gosh! This is all so freakin exhausting! Her Rheumy is going on vacation. He is off for 1 or 2 weeks. This was the first time I met this guy..he really should be retired. He's at least 75 years old. Believe it or not he actually sounded like he wanted to get 'rid'of her as a patient. The only time he made eye contact was when I mentioned JHU! He didn't realize at first that my sis had the trache in cause she had a scarf over it. He left the room and I heard him ask the receptionist "why did you make this appointment? She should be seeing the docs at Jefferson"....UGH!!! He was hesistant...but finally did give her Methotrexate and Folic acid..and was supposed to give her more Prednisone...but obviously forgot to give her the script!
It's gonna be next to impossible to get him to write something else. I just know it...and frankly my sis is getting annoyed with all the doc appointments.
I will tell her to see her PCP to see if he will write the letter...and if JHU doesn't accept THAT..there's nothing else we can do! I feel like this is becoming a hopeless battle. But, I know her and I need to keep pushing forward.
Thanks again Sangye...!!

[andrew]

It's not hopeless!! It's just frustrating and exhausting. Rest assured the fight is worth it. Once you get to JHU you'll be well looked after.

[Lila]

Yes..your right Andrew..THERE IS HOPE!!! It just seems like when we take one step forward we take 2 steps back with this!