my sister....

[JanW]

I would love to hear too. Lila, how is your sister?

[Sangye]

Updates, people, UPDATES!!! :D

[elephant]

Sangye, you crack me up! I can see you waving your hands in the air, with a microphone " Updates people updates!"

[pberggren1]

You crack me up Sangye. That reminds me of a professor I had in Calculus. We would do a probem on the board and he would say, "Confirmation! Confirmation!" And usually I would always confirm the right answer and after awhile he started calling me Dr. Phil. After I found out that Dr. Phil is a quack I didn't like to be called that anymore.

[Lila]

I'm waiting for an update from Onthetreetop! How was everything? Please, please tell us!!
The only thing to say is that JHU cancelled my sister's appointment for Tuesday, never called her back to rescheule. The both of us left messages and Kim never returned the call. Finally, after many attempts, I got thru to her yesterday...and boy, was she RUDE! She tried to schedule the appointment for the end of March! I was very nice to her trying to explain this is an 'urgent' matter, and they were the one's who rescheduled! She told me she could not make the appointment with me, so then I had my sis call, again, the rudeness....makes my sis not want to go there too much now. She acted like we were inconviencing her. I'm a very easy person to get along with. I don't understand what the problem was, but she finally gave in and gave us an appt. in February....still another long wait.

[onatreetop]

I went ,I saw, I met, I spent an hour and a half with Dr. Killmann, Who you have to request if you want him and then he screens your case and decideds if he will see you or pass you throught the fellows and etc!!! he saw me first time in and did the whole eval. himself!!!!!! I was very impressed. He read through all my previous stuties and reports out loud and ask for a week to look at all the CT's And MRI's and Nuc. Studies then will give me his recommendations and or request different testing there. He was very calm and polite.Mom and Ifound an old little German Rest. for dinner right down the street from the hospital. It was good!!!!! So was the Spaten!!! The hospital was right off 95. it was easy. I asked Kim when I saw her about my friend that I thought had an appointment today and she said there was no clinic today. He did ask how I had heard to ask for him ? I told him I looked him up on the internet. And when I looked at the refferal it was From SOLOWAY!!!! Not my prim. I was shocked!!! I thought he said he wouldnt? He asked me so many questions I was really shocked. What a pleasure. He said at the end what I thought he would ......Because there has been no biopsy he would not say that I definatly have WG but wont say either way till he finishes he's review of the scans. i am scheduled for a sinus biopsy in the morning at the ENT that Soloway recommended here. So........................That was the Baltimore trip. HAd the sleep study on Monday that was interesting. I had the techs Laughing all night!!!!! As soon as I got in the door we were laughing. All she asked was How are you feeling tonight so I answered honestly, blooted and a bit gasy! It could be a very intertaining evening for you!!! My husband made cheesesteaks for dinner and well red meat gets me for 24hours after. So that started our evening off well. I fell asleep as soon as I hit the pillow wires and all. It felt like five minute later that they woke me in the morning. I had only spelt two hours the night before so falling asleep was not a prob. So there that too.

[elephant]

Thanks for the update onatreetop. So glad you got to see him. Good luck on your ENT biopsy. You will be fine. Have a good night sleep. :D

[onatreetop]

Thanks I will. have to work after hope I can. I do have a big sence of relief.

[Sangye]

I'm so glad you finally got to JH, Onatreetop. (Unless Solloway had a moment of compassion, he probably figured out that he was heading for possible malpractice if he didn't provide a referral.)

Sounds like everything went well. I felt the same huge relief after my first visit with Dr Seo. He had already reviewed all my records and had them memorized--dates, everything.

[onatreetop]

I wish that Lila had got in to. I cant believe they canceled Her??? Some how they had priortied me? Why I dont know? I havent been hospitalized ?? Maybe the last labs? I got them today and there are more highs and lows than before. I faxed them to Dr. Killmann,and my prim. Soloway ordered them but hasnt called yet. Maybe they will all call??? Soloway was the only one who had them before me.

[elephant]

That is too bad about Lila sister being canceled. Just hold on tight and wait till they call you. I am sure you will get some answers tomorrow.

[pberggren1]

Onatreetop, I'm so glad that your appointment went well with Dr. Killmann. Too bad you have to travel 6 hours each way, but my Rheumy is about 170 miles away too. I usually cannot drive it myself so I get my Dad to drive me. The very odd time I take the bus - what a horrible ride. I used to have 2 Cadillacs - a 1976 Sedan de Ville and a 1979 Fleetwodd Brougham de Elegance - both such smooth cars on the highway and very easy to drive and could lay down and sleep in the back seats.

Lila, I'm sorry to hear about the cancellation of your sister's appointment. That just infuriates me. If I was feeling better and had the money I could come down there personally and tune some people in. It wouldn't be pretty, but sometimes these people in the medical field have to be tuned in. I've done it before, 2 times for myself and 2 times for some friends, and again it wasn't pretty. Please be firm and if you have to lose your temper it is justified in a case like this. Just pretend you are the Great Joe Louis psyching up for a fight, a fight that you have to fight for your sister.

[onatreetop]

Oh, sorry three hours each way. 6 total I didnt mind. I drive a comfy Ford Explorer with all the bells and whistles so it was okay and I was ready for any weather that may happen. I didnt even use the radio. My mother and I talked the whole way and back. We did go through some gas and toll money but it was so worth it!!!!!! It is a little bumpy like a truck but I like being higher up and in a bigger vechile than other people.False sense of security I guess driving a tank.

[pberggren1]

I used to dirive a 3 quarter ton suburban as well. So I know about the truck and tank feeling.

[onatreetop]

There is something comforting about it. I got onewith the bigger engine to tow the pop-up camper with to so it sounds like it is to big for its briches!1 V8 in a wittle explorer. Vroom vroom!!!

[Lila]

I'm glad that you made out well Onatreetop! I can actually 'hear' relief in the words you speak!
Over here...we are just waiting, and a little annoyed at the same time. Pberggren1-I hear ya about being firm...I just didn't want to make her more mad..so I was as nice as possible. I must say she had to be the rudest person I've had to deal with in a long time. She had no compassion whatsoever, even after telling her about the trache in my sis. I sometimes wonder....if this was their family member, how would they what someone to treat them?

[Sangye]

Lila, Kim can be very difficult to deal with. Real moody and truly has no idea what all of us are going through. She's the only one like that in the office. Everyone else is incredibly kind and compassionate. I've found a way to get along with her, but it was pretty tough in the beginning.

As much as I don't want your sister to have to wait longer, hopefully she'll learn not to delay taking action again. Kim isn't the only receptionist who will cause delays in her care. I've experienced it from so many doctors' offices I can't even list them all. (That's why I'm able to deal with Kim-- I practiced a lot before JHU!) Your sister will have to learn how to work with difficult front desk people to get what she wants and needs. If she gives up on JHU because of something like this, it isn't punishing JH. She's the one who will be harmed by receiving inadequate care.

Some things I've learned about dealing with difficult front desk personnel:
1) If they're not compassionate, don't take it personally and don't expect them to become compassionate if they hear your story. You will exhaust yourself and won't change them. They might even view you as whiny and ignore you more.

2) If they're rude, don't take it personally. Don't be rude back, but do be direct.

3) Ignore their ranting and complaints. Clearly state what you need, and recruit their help. Tell them "I really need your help with this." Instead of making a demand, soften it with "How can we make that happen?"

4) Above all, remain calm. Be like a parent who watches a child have a temper tantrum but doesn't join in. When they have a fit over something, let them vent it and then tell them that you understand. It's not a lie-- you do understand frustration, demands, feeling overwhelmed, etc....

Hang in there. When is the Feb appt, anyway?

[Jack]

Some good advice there Sangye!
The doctor's receptionists over here became something of a joke - they were so well known for being rude and trying to make your life as difficult as possible. That all seems to have changed now and they are mostly helpful. I'm not sure what has driven this, but recent governments have introduced a lot of league tables, customer feedback ratings etc. and have given the doctors much more control over how their practices are run.

[Lila]

Yes, she was extremely RUDE!. I talked to Crystal a couple of weeks ago and she seemed pretty nice. The thing is THEY cancelled the appointment and said they would give my sis the first available. When my sis got a hold of her she gave her the end of March! I called back and finally got February 9th. I think 9 or 9:30. I suggested we should drive down there the night before, and stay at a hotel or something. But, it's up to my other sis since she will be the one driving.
Thanks for the advice on how to handle front desk people! Before I worked at the hospital I worked at many doctors' offices at the front desk. That kind of attidude would not be tolerated! When you are dealing with sick people you just can't be like that! It's just wrong! Of course, I bit my tounge while I was on the phone with her..but it was not easy!
How are you feeling Sangye?

[pberggren1]

I'm sorry if I came across a little gruff guys but I kinda lost it there for a moment.

Of course Sangye is right about remaining calm. You don't get anywhere by being rude back.

[elephant]

The one thing you could do Lila is write a letter to the administration ( JHU). Even better write one to the president of the JHU. Hospitals are being rated by their customer service and are rated by their press ganey score. JHU was rated the best hosptial in the Country! So this needs to be addressed especially in your letter.
That was great advice Sangye, so true.

[Sangye]

LOL-- Phil, I used to take on all of them. Now I rarely morph into Joe Louis....

Weggies really have to learn how to deal with front desk staff because we need so many things-- appts, records, questions answered, etc.... But the fact that we don't look sick also makes it tough. They are even less likely to take us seriously!

When a struggle breaks out over getting an earlier appt (for example), instead of telling them how desperately I need one, I say "I'm sure we can work together and figure this out." Then they don't feel like you're blaming them.

I also always make it a point to ask how I can contact them in the least intrusive way. That's how I got Kim's email. I apologized one day for leaving multiple voicemails. She offered me her email and said it was much easier for her than answering phone calls. I get answers immediately that way. I can ask Dr Seo a question or describe symptoms, and she zips me his written answer right away.

[elephant]

This is great advice again Sangye. Hope this will work out for you Lila. It's sad that some of us don't look sick. Sometimes I think should I wear pretend nasal cannula and a fake oxygen tank, and draw fake huge rashes all over my face....and have a rolling walker.....There are WG patients out there who are on oxygen and need a rolling walker to get around and have a nose that is practically falling off. Yes they look sicker but sometimes they too still get ignored. I have friends who said I look great even when I was on a billions pills and at my worst....

[JanW]

Lila -- I don't know if you are in north or south Jersey -- I myself am in Hudson County -- but when I called Dr. Robert Lebovics office (you can read about him on the vasculitis foundation's website -- he did work for the NIH researching WG) at St. Luke's Roosevelt Hospital (west side of Manhattan, 10 minutes from Lincoln Tunnel) at about noon on a Thursday I had an appointment for Friday MORNING. Literally, I saw him before I had a definite diagnosis, and my rheumy had not called ahead (just got dx this past Wednesday and they have already talked about the surgery I will need for my subglottic stenosis and saddle nose). I was treated with compassion and care and he spent almost 2 hours with my husband and I and apologized for taking OUR time. This might be an option that you want to explore for your sister -- I think the website says he has done more than 200 saddle nose reconstructions, and he specializes in dealing with the windpipe in WG patients as well. He allows the local support group to meet in his offices' conference room and is there for questions and consultations. He's a great guy - very down to eath and explains everything very well. The office staff was perfectly fine, and it was clear that WG patients move to the top of the appointment list. I'm seeing him again February 5 and anticipate having surgery soon after that. His number is 212.262.4444.

[Lila]

Thanks everyone for your advice! : )
I think we are moving in the right direction by going to JHU. It's just that she has left other offices because of the office staff. I can deal with them much better than her but until I'm on the HIPPA form JHU is being difficult and won't discuss her appointment's with me. It wasn't a problem until Kim was in an irritated mood on Wednesday! I think you guys are right. The problem should be addressed.
JanW- Thanks for the info on Dr. Lebovic! Is he in New York? I remember hearing that name...prob from all my research! Do you also have saddle nose? My sister does...she has had it for over 10 years, but, with no diagosis. Years ago she had bone, maybe cartlidge taken from her head to repair the saddle nose. But, it did not work.
I just can't wait for this appointment. And....if they cancel again, I'm going to SCREAM!!!! We're starting to get impatient here. She is due to go back to work in a few weeks. She is panicking about losing her health coverage. : (
Thanks again everyone for all the advice and information! I love this site!

[jola57]

Again, I am envious of all of you that can contact their doc and actually get an answer and a proper wegs doc to boot.
I'm green with envy.

[JanW]

Lila: Yes he is in NYC. At St. Luke's Roosevelt which is about 10 minutes from the Lincoln Tunnel, so no more than a 20 minute commute from Jersey for me. I got in with him within 24 hours with a suspected dx of wegeners (the first question the receptionist asks if why you are asking to see this particular doc -- it's a large group), so I have no doubt that they would get someone with a trach in quickly. Of course he cannot dx wegeners but he works with all of the top rheumos here in NYC.

[Lila]

Thanks Jan!
I'm not sure if JHU does surgeries for saddle nose. But, if not, NYC is prob closer than Maryland.
So, you had your surgery already? How did it go?

[JanW]

No. My first surgery will be for my stenosis, and that will probably happen within the next six weeks or so. My nose is more of an optional thing because it is fully functional and Lebovics said it's not likely to get any worse, and that if it doesn't bother me, I don't need to have it fixed. As he said, "I've seen much worse." No one who knew me before (except me and my husband) even really picked up on it -- the kids have never mentioned it for instance, and it saddled a few months ago. Lebovics said that he would take rib cartilage to do the correction, and has had good success with this. He has done over 200 of these surgeries. He also said he hasn't had to do a trach on a WG in more than 10 years as a result of complications from the stenosis surgery, so that if definitely reassuring to me! He did caution that weggies with this kind of problem often need more than one surgery, but both he and the rheumo agree that I don't need to hold off (for remission or whatever) in order to get this done.

[Lila]

Well, if the nose is unnoticable, and doesn't bother you then the heck with it! Why put youself through that?
My sis's nose is very saddled. It bother's her alot. I don't think it looks bad, but she is very self concious of it. Her ENT said that if they did surgery on her nose they would have to keep her trache in while performing the surgery. But, that guy is a whacko, so, I dunno.
What kind of surgery do they do for the stenosis?
What part of Jersey do you live in?

[Sangye]

Elephant-- I was on oxygen for 19 months, weak as could be, and STILL no one took me seriously. I should have had a walker up until recently but didn't want the hassle. For about 4 months last fall I used a cane most days. Still no one took me seriously. I've given up on trying to make everyone else get it (okay, MOSTLY given up). It only matters if I get it.

Jolanta-- I understand your envy. On the other hand, I'm totally envious of Weggies who have gotten back to work, can exercise and do some normal things. My leg swelling issue even keeps me from using my computer as much as I want. No tv, no computer, living in a basement, no energy to get out as much as I want--even to go sit somewhere else. My frustration level is at a peak. I have the best Wegs docs but they can't change the fact that I'm still unable to function for the most part, 4.5 yrs after the first major symptoms. I told my therapist yesterday I feel like I'm trapped under earthquake rubble by Wegs. It feels hopeless.

[Jack]

Hang in there Sangye!
The only comfort I can offer is that many of us have at some idea of what you are going through and can at least sympathise.
Hopefully tomorrow will take you a step forward, but I'm aware of how long anything like remission is taking for you and my heart goes out.

[Sangye]

Thanks, Jack. I know you really understand!

[JanW]

I am in Hoboken, so right across the river from NYC. Your sister needs to stop concentrating on her nose and start concentrating on dealing with her disease. I know this sounds very harsh but honestly, she's got a trache in right now and she is not being actively treated for WG...and that needs to happen sooner rather than later. I was reading through your old posts and her situation sounds awful.

[Sangye]

Glad you're joining in, Jan! Lila's sister is definitely worried about all the wrong things. If she'd get to a Wegs doc, they'd set her straight about it. Lila is suffering terribly, because she does understand the dangers. She's a great sister.

[Lila]

Ok Jan, you are pretty close to NYC. My sis also has subglottic stenosis and I would imagine that she would have to have surgery on that also. I think she worries about everything, which adds to her irritabilities. I know I shouldn't tell you guys this but she has been cutting her Pred in half. She says she cannot deal with her own mood swings anymore! She has been a little better.

Sangye- I really feel for you. But, I'm glad that you know when to seek help for yourself. I hope you have better days coming. : (
Yea, I can't wait for the Weg's docs to set her straight. I hope they tell her like it is. Sorry to sound so blunt, but she needs to hear it. And, thanks for saying I'm a great sis! It's been so hard though....

[Lila]

Sangye-
I have a stupid question! Why does JHU call it a 'clinic' on Tuesdays?

[Sangye]

She's cutting her pred in half?? (That big banging sound you just heard was the sound of Sangye's jaw dropping.) Not only is that an EXCELLENT way for her to guarantee she'll have to go on higher doses of pred (and for longer), but it's also a good way to kill herself. Either via Wegs or via Acute Adrenal Crisis.

[Lila]

She's saying that a while ago she was only on 5mg

[Sangye]

The docs at JHU do research, consult with other specialists on long-distance patients, do hospital rounds (some of them) and see patients. Seeing patients is called being "in clinic" because the rest of the time the docs are somewhere else (ie, unable to see patients)

[Lila]

She said about a year ago the Rheumy had her on 5mg....

[Jack]

What dose of pred is she supposed to be taking?

[moyan]

Sangye-
I have a stupid question! Why does JHU call it a 'clinic' on Tuesdays?

There is only one stupid question and that is the one not asked when you want to know :)

[Lila]

Oh, Ok.....thanks for clarifying!

[Lila]

Thanks Moyan!

[Lila]

The Rhuemy told her to take 10mg! She is saying that he called her last week with her blood results and told her it was ok to go down to 5mg based on the results. He's another whacko though.

[Sangye]

A year ago is totally irrelevant. A year ago she didn't have a trach (twice). 5 mg is a maintenance dose for well-controlled Wegs.

If the pred is causing such significant emotional changes, she needs to see a psychiatrist and start on appropriate meds. It's not uncommon and nothing to be ashamed about. I seriously doubt a Wegs doc is going to keep her on 10mg pred. She needs to have an antidepressant or mood stabilizer already in place for when they increase her pred.

[Lila]

She does have Xanax, but wont take them cause they just put her to sleep! It's a non-stop battle with her Sangye, you know that!

[Jack]

You can't go from 10 to 5 in one jump without consequences. I can't even get from 10 to 9!
Prednisolone is not a drug you can mess with unless you are very familiar with it, but unfortunately it is an essential part of Wegener's treatment. The answer as Sangye has said is to seek help to manage the side effects rather than not taking the required amount. A person could end up with long term damage that way.

[Lila]

You can't go from 10 to 5 in one jump without consequences. I can't even get from 10 to 9!
Prednisolone is not a drug you can mess with unless you are very familiar with it, but unfortunately it is an essential part of Wegener's treatment. The answer as Sangye has said is to seek help to manage the side effects rather than not taking the required amount. A person could end up with long term damage that way.

I just told her that Jack! Of course, she cut me off and said she had to go get in the shower! All I can do is say the truth, she needs to decide what to DO with it.

[Sangye]

Lila, I really think the only thing you can do is to step back and let her deal with the consequences of her actions. She won't take the pred, she won't take the xanax, she won't do what's necessary to get to a specialist, she won't talk to other Weggies.... She's having a temper tantrum!

If she's not participating in her care, no amount of your love will keep her from harming herself. As long as you're carrying the load, she knows she doesn't have to and she's free to act like a child. This is a co-dependent pattern. If she knows it's up to her, she'll suddenly take it seriously and find all kinds of strength to do it. She isn't as helpless as she'd like you to think!

[Lila]

Well said Sangye!
The thing is...she doesn't WANT me to make phone calls, and do things for her. She wants to do everything herself. But, by leaving it up to her, it doesn't get done right, or maybe NOT AT ALL! That's why she is in the shape she is. Never wants to 'bother' the docs, doesn't take the meds properly. I just tried to tell her if she goes back on the 10mg Pred and takes the Xanax it will even itself out. She says she will wait to see what JHU says. I don't let her bother me as much as she used to.....I hope you don't think she's a bully or acts like she wants attention. It's just the opposite. She wants no one to pity her and she has been 'listening' to what I say lately, she just doesn't take action. I told her she's not supposed to lift heavy things cause' of the Trache. I wanted to go to the store with her so that I could lift the case of water, but no! She did it herself! It's those things that really urk me too!

[Jack]

When it comes down to it, no matter how much you care, you can't live her life for her. I think you have done pretty much all that could be expected of you and a lot more beside! It's probably time now to take a step back and give yourself a break. No one would expect any more from you.

[pberggren1]

Jolanta - I wish you had a Wegs specialist too. It's not fair. One would think with such a large urban area of Vancouver that a Wegs specialist would be there.

Sangye - We need you! Don't give up! And yes it does matter if other people don't get it! My parents and docs get it and a couple of friends but that is it. I do find most people are fairly compassionate though.

Lila - It must be horribly frustrating dealing with your sister. I kinda know what it is like - I have a brother that is addicted to drugs and alcohol.

[JanW]

I agree with all of the others, Lila -- you are already doing so much for her, being here and doing all of the research. Maybe the way that she is acting is her way of being in denial (although I can't really understand being in denial with a trache and with her fingers and toes curling as you said in an earlier post). Every day that she looks in the mirror should take her out of her denial. Maybe she doesn't really want to name her disease, or she doesn't even think she really has it. And stepping down your own steroids is just wrong, I've been on doses similar to what your sister has for my supposed asthma and even then knew that it was important to take according to directions. For what it's worth, it is apparently possible to start medication and do surgery for subglottic stenosis concurrently -- at least that is what will be happening in my case. However, I haven't reviewed the blood work and won't know what meds I will be started on until I meet with the rheumy on Wednesday.

And the idea that a ENT should be dx Wegeners and or in fact be treating in medically is nuts! My rheumy and my ENT stressed that several times. In fact, my ENT, a WG specialist, stressed that he didn't want us leaving the office saying that he said that I had WG. He said that was the rheumy's call.

[elephant]

Sangye- Funny thing is I envy the healthy people around me ( my friends and family) except a couple of sisters. I will never be 100%. I have so many meds just to keep me going. I am hoping you will get there soon. You will in time. You have been a great, helping everyone out and being there for people. You will go back to work some day.
Lila- You need to take care of yourself. You can make yourself sick too, by stressing yourself out. You are a great sister.
Jolanta- I think will all envy someone...I have another envy, that I have to drive 10 hours to get to a WG specialist!

[jola57]

OK. elephant I don't envy your 10 hour drive.

[Sangye]

Jan--my Wegs ENT at JHU has said the same thing. He always emphasizes that he can't make the call about meds or how we proceed in general. He says "I just do what Dr Seo (Wegs rheumy) tells me to do." All my Wegs docs are like that-- no egos, just concede that the rheumy is the only one skilled to make the decisions.

Elephant-- I TOTALLY envy healthy people around me! I work on it, as it's counter to the vows I've taken. But it's a reality that must be dealt with. No use repressing or denying it.

[pberggren1]

My ENT is the same way. He always asks me what to do or what I think should be done - I know he values my opinion being I've had WG for about 7 years and he knows that I am on this site talking to you guys. He then asks if I have been in contact with the Rheumy and what she had to say.

[onatreetop]

Wow drop off the face of the earth a few days and I miss all this>>>>>>>>>>>>>>>... OKay in Kim's defense sort of, she is abrubt and short and even rude but also seemed almost like she was truely in pain. You know the look we have all seen it in the mirror. She was wearing it. This other person she is training I am guessing isnt working out so well and said she maybe contacking me in the future or maybe not.......................... Hum........ She was also really pissed that I made my appointment through JHUs service??? They had me as a paying person but I have insurance and the referal and copay and everything. She was like dont use them anymore they always mess things up. So I am still waiting to hear but saw the local ENT friday and he said the sinus look good but I ahave a large spur that touches the other side that needs to go and will improve my breathing. He is going to do the biopsy of the tubes? He said that WG shows there first then sinus. So I let him schedule that for the 9th of Feb until I hear from Dr. at JHU with his recommendations.
LILA, you can email kim instead of calling. That way your not calling either!!!!

[Sangye]

Just emailed Kim. She's not training a replacement, just someone to work with another doctor. I don't think she has any physical ailments, but lots of emotional agitation. I've come to know her quite well.