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Lila
12-15-2009, 01:17 PM
I posted something earlier..not sure where it went...
My sis has just been diagnosed with Wegeners...after over 10 years of suffering. Last week she could not breathe and was rushed to Jefferson (Philadelphia). They did an emergency trache on her and she was home 2 days later....with the trache too. She is STILL having problems breathing. It seems that once she 'coughs' it up...she is much better. This is not easy for her..she has to cough and cough so hard that last night blood was in her trache. However, this morning she said she feels much better since it has 'come up'.
She is scheduled to go back to the doctors on Thursday to have an Endoscopy and possibly remove the trache. I don't see how this is possible since she still has trouble breathing with it in. However, she is so depressed and crys often. Her doc there is an ENT specialist and he will be referring her to a Weg specialist. I hope it's a good one cause' she's been suffering too much.
Why do bad things happen to such good people?

Doug
12-15-2009, 01:52 PM
Good. She should be seeing a WG specialist!

It sounds like the stuff I was coughing up in the early stages of treatment for WG- a congealed, bloody mass that reminded me of a banana slug, the huge slug that occurs in the Pacific Northwest of the US. Size-wise, anyway. Let's hope the WG specialist helps your sister.

When she feels better, you might encourage her to get on this support forum, where several people have experienced the same operation. The depression can be medication-related, too, though ten years of dragging around (and I bet she was!) until someone diagnosed her with WG in itself could cause her to feel a bit negative about her situation. Once again, I recommend this US site for more information on WG and much more. I don't recall giving this to you yet.

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

Read up on WG and help her to understand that once the doctors get it in control- and it's been working on her body, apparently for 10 years on top of everything- that she will experience recovery, slowly perhaps, maybe fast. Little by little most of her old world will come back to her. She needs patience now, and a change of attitude (which may come as she gets past this stage where breathing isn't easy yet). A positive and realistic attitude is her best friend after the doctors set her on the way to remission or whatever the "new normal" will be.

If you found the discussion on remission, you read that it isn't easily described. Even the doctors don't totally agree on a standard definition of it for WG. We on the forum tend to take this approach: "If I feel good, the test numbers mean nothing. They guide the doctors, but are subject to interpretation."

One of my numbers is consistently high, yet I am well, functioning, but use a cane in some circumstances just to feel safer from falls. That's my "new normal", and I can live with it. Your sister, "talking" with others on the forum can learn about their "new normal" after this surgery, and it'll help her get prepared a bit for her "new normal".

It may seem a brutal and unfair fate to come down with this disease, yet it is very encouraging to us on the forum that roughly 90% survive and thrive with treatment, compared with 30-40 years ago before diagnosis was more likely in the early stages and it was more like 90% died within two years of the initial flare!

Lila
12-15-2009, 02:05 PM
Im really having trouble navigating around this web site. :(
The info you gave me is great. However, my sis is very negative about the whole situation. Her nose has also 'collapsed' and that needs to be reconstructed. Her toes and fingers are curled up and cause her terrible pain. She does get Enbrel injections, but due to all of this she hasn't had it in over 3 weeks. Since being released from the hosp. she is only on 10 mg. of Prednisone. She does not like to take meds.
Where do u live? Do u know any Weg specialists at Jefferson? Do u have a trache?
Sorry about all the questions. Im trying to find out whatever I can...
Thanks so much for all your info.
Maybe I should try reading the email you sent me to my sister...

Doug
12-15-2009, 02:23 PM
Unfortunately, we are bad about staying on topic, which further complicates your job. We're trying, though. There are doctors listed in the Vasculitis Foundation site who can guide you to doctors or institutions in your area. Also, there are hospitals that specialize in WG listed. I'm not familiar with your area. Only one person (in the short time I've been on the site- since April) has reported a collapsed nose. Again, I encourage those people with specific experience of knowledge to join us in this discussion so you can get proper and useful information.

Jack
12-15-2009, 07:25 PM
10mg of pred is not sufficient treatment for anyone with Wegener's unless they are already in remission! In the early days it needs heavy doses of imuno-suppressants together with steroids to knock the disease on the head. I started on a thousand mg of pred IV and also a chemotherapy drug called cylophosphamide also IV. Many people on the site started on similar medication, although perhaps not such large doses!
Your sis needs a vasculitis specialist before more damage occurs.

onatreetop
12-15-2009, 11:38 PM
I am waiting to hear from Jon Hopkins Un. in Maryland. That was the closest WG spec. I could find to NJ. Any RA will take you on but and treat you but WG isnt common and most of them hear havent seen any cases. I was lucky, I hope to have found Dr. Soloway in Vineland. He is aggressive and has a big head, you may wait up to 4 hours to see him too. But he found the problem is treating it and is amazing. He has helped me get some of the meds even. He has been one of THE TOP DOCS on the east coast for years. he also has one of the largest infusion labs in the USA. He is a good man. A bit strange but good. JHU wants records then they call you for the appt.
The doseage does sound low even for me an early dx"s case. I recently had a FLARE and was bumbed to 100mg cty. and 60mg pred. It isnt fun but thats what it takes sometimes.
Were are you in NJ? I am near Ocean City. So Vineland is an hour drive. He is worth the trip and or day if you cant get her in to another specialist sooner. He will flat out tell you if he can help you or not the first time you meet. he says he has only seen a few cases 10 or 11. He currently has another besides me. But that's it all the other people are joint pain arth. peoples.

Sangye
12-16-2009, 02:34 AM
Lila, I would urge you to call Johns Hopkins today. I think they'd get your sister in much faster since she had an emergency trach and is DEFINITELY not on proper meds. Like Jack said, a pred dose of 10 mg is completely inadequate.

I would also suggest that she not let anyone remove that trach until she's seen a rheumatologist who specializes in Wegs AND an ENT who does also. It typically takes months of treatment before they can safely remove it.

Her depression is normal. Can she join us on here? We've all been through it and can probably help.

Lila
12-16-2009, 12:39 PM
I hope I'm sedin this to you correctly. Im really having trouble finding out where to find new messages and write new messages. I live in Galloway but my sis lives in Hammonton. She has seen Dr. Soloway in the past but did not care for him. Did you say that you DO have Wegeners? Wow, you are like right next store to me!

Lila
12-16-2009, 12:46 PM
My sis does not have internet access. Im on the phone with her reading these messages. I hear what you are saying...about not removing the trache yet....however, you do not understand my sis's stubborness! If I try to suggest too many things to her she gets upset with me and ends the conversation. I told her that somehow, someway someone will get her to the Cleveland Clinc but her respose is "let me first just see what my doc at Jefferson says." I'm also afraid that if I suggest too much of something and she gives in to what Im saying...and it was a bad choice..I will never forgive myself. She wants to make her own decisions and I have to learn to back off. She is my older sis but Im very protective of her and her health.

Lila
12-16-2009, 12:51 PM
I did post a respose...not sure if it goes to you...or for everyone..!

Sangye
12-16-2009, 01:17 PM
Lila, when you click "Quick" to reply on a post, it doesn't matter which person's post you click on, your replies will go at the end of the last post. That probably doesn't make sense! I'm really tired. Someone else can explain it much better. There's also a way to use Quote so you can directly answer someone's question... Again, someone else can explain it. So far you're doing just fine--don't worry.

Since you're reading the posts to your sister, how about if each of us writes a note to her and you can read it. She's more likely to take it seriously since it isn't coming from you, and we DO have tons of experience living with Wegs. I'll put my note to her in the post after this...

Lila
12-16-2009, 01:26 PM
Thanks Sangye,

I'll get the hang of this soon enough! I got your reply in my AOL but I don't see it on here! I was thinking about getting my sis internet access for Christmas...she does have a computer. I think this site would be great for her. Everyone is so nice!

Lila
12-16-2009, 01:27 PM
Okay...now I see your post! So sorry...Thanks

Sangye
12-16-2009, 01:44 PM
Hi Lila's Sister,
My name is Sangye. I was diagnosed with Wegener's in June, 2006 after a year of excruciating joint pain. My lungs became involved a few months before I was diagnosed--slowly began hemorrhaging. I was in total denial that something serious was going on, even though I was completely crippled with pain, could only walk 5 ft due to pain and gasping for breath, and was white as a sheet because I had lost so much blood.

I was treated by a local rheumatologist who had only treated 12 people with Wegs before me (over a 6 yr period). I thought that was sufficient, because it's a rare disease. But he almost killed me. He didn't have the skills and knowledge a doctor needs to treat this disease. Wegs can do silent damage. You can be in deep trouble before it becomes obvious. I had tons of complications and he was in over his head. Even though I got better doctors after 1.5 yrs, they still weren't Wegs specialists. I moved to Maryland a year ago and started going to Johns Hopkins. They specialize in Wegs-- one of the few Vasculitis centers in the world. It's a completely different scene.

It's vital to have a Wegs specialist. I was in JHU hospital this summer and my lungs were bleeding again. The other rheumatologists (non-Wegs) were TOTALLY confused about if it was a Wegs flare or not. All in disagreement. They sent me home without treatment. My Wegs doc found out that I had been discharged and hit the roof. They were excellent doctors-- much better than my Arizona docs-- but because they aren't Wegs specialists, they couldn't sort it out. WEGS IS SNEAKY.

The treatments can be tough, but you can't go without treatment or undertreat it. Either one will do permanent damage and eventually kill you. Many of the non-Wegs docs wanted me to go back on extremely high doses of prednisone and cytoxan this summer. My Wegs doc found a different way-- not as toxic and just as effective.

I strongly recommend that you don't let anyone remove that trach other than a Wegs specialist. Usually it needs to stay in for several months while the drugs get the Wegs under control. If you remove it with active Wegs, you can die. If you remove it and have to have another put in, you've created scar tissue that can cause problems.

I know you're probably depressed about all this. I understand. I've pretty much lost everything since being diagnosed and have had non-stop complications for 3.5 yrs. I think we're just now getting control of it. I understand feeling lost, depressed, overwhelmed, alone and wanting to run away and pretend it isn't happening. I don't know if you're feeling that way, but most newly diagnosed people go through similar things.

I'm sorry for my rambling. If I could wish one thing for you, it would be that you would call Johns Hopkins as soon as you read this and ask for an appointment. The Wegs docs are all very kind there. Not arrogant. They'll make you feel much better about living with this diagnosis, I promise. It usually takes 6 wks to get in, but given that you've had an emergency trach and you're way undertreated (ie, 10 mg pred), they'd probably get you in faster.

Take good care of yourself. You can ask us anything and we'll do our best to help you.

Sangye
12-16-2009, 01:45 PM
Internet access is a GREAT gift for her!

Lila
12-16-2009, 02:05 PM
Oh..your message does send hope. I will read it to her when I think the time 'is right'. Im not ignoring the disease, I just don't want her to get upset. She gets very annoyed when I say ANYTHING anymore. She needs to know that there is hope and I don't know what will happen on Thursday at her doc's, but all I can do is pray. I know her too well...and she will go to this appointment. I just pray for the docs to make the 'right' decision. I know she is not ready to have that trache out. She had her throat lasered about 1 week before the trache was put in due to subglottic stenosis. They said that something was on her voicebox (blood, scar tissue, scabbing from the laser). They said that that is why she was unable to breathe. Again, the docs there were not Wegs docs. That's what worries me more. So, they will do the Endoscpoy and we will see. Your message was very moving, and I do appreciate you writing it. I will be sure to read it to her...hopefully tomorrow! Thank you so much... : )

Sangye
12-16-2009, 02:25 PM
Please tell her not to let anyone laser her trachea until she sees a Wegs doc. It creates large amounts of scar tissue and can easily make the problem worse. I've only heard of one doc (East Coast--maybe NY?) who is an expert at the dilation surgeries they sometimes do. It's not something any doc should do. Wegs is much more complicated than most docs realise.

Lila
12-16-2009, 02:36 PM
I will def tell her that first thing in the morning when she calls me. It's like I'm walking on eggshells talking to her. I never know how she is felling from day to day....so I will have to feel her out before I read your email to her. Thanks so much for your advise. It's appreciated more than I can describe to you.
P.S.
My time here is actually 10:35pm..although it says different. I must have picked the wrong time zone. Good night to you...and thanks again : ) I will be back tomorrow..

onatreetop
12-16-2009, 11:36 PM
Galloway WOW! You are thirty minutes away! I know Soloway can be donkey but the first time I met him he said to me" I know I might seem like an ___hole but I am good at what I do and I know that I can help you. I will find out whatis wrong and we will treat. You just have to trust me and my different way." Of coarse anyone who sees him was to wait the 2 or 3 hours in the waiting room. Which makes everyone unhappy and upset before you see him and than you have to listen to him and let him ask questions and let him think then before he gets up to leave hit him with the rest of your questions. That is the routine I have found that works for him. If you interupt himwhile hes talking he snaps at you then the poor asst. that writes everything for him. He isnt proffesional either.The first visit I had he flipped out on the entire staff cursing and screamimg and they just kept going? I thought holy Poop! But after all is said and now done he found what he was looking for and is treating it and montoring it closley. If I was one of those people that cant stand doctors with god conplects than he would diffintly rub me the wrong way. But Iam easy to get along with and can tolerate and get along with anyone Ive ever met So................I am still waiting to hear from JHU. Oh, yes I have WG DX'd in June this year. And early in thank you Soloway Freak!

Sangye
12-17-2009, 12:13 AM
Personally I believe that if someone is arrogant, rude, unprofessional, etc... then he isn't as good as he says he is. I also think a doctor who says "I'm very good" probably isn't. I have incredible doctors and I couldn't imagine them saying something like that about themselves. When I compliment them, they say things like, "Well, I can only do my best and pray that it helps you."

Arrogant doctors miss things because they're only focused on hearing themselves talk, their own opinions. It's a closed door. That's the opposite of what makes a good diagnostician.

You might be okay with him, Onatreetop, but I don't see evidence that you're being cared for by one of the "best docs on the East Coast." It upsets me just reading about him and knowing the shape you're in. I think once you get in to JHU you'll see what I mean.

onatreetop
12-17-2009, 12:23 AM
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
12-17-2009, 12:52 AM
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
12-17-2009, 01:25 AM
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
12-17-2009, 10:34 AM
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
12-17-2009, 12:05 PM
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
12-17-2009, 12:13 PM
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
12-17-2009, 12:18 PM
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
12-17-2009, 12:45 PM
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
12-17-2009, 12:55 PM
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.... :D

Lila
12-17-2009, 02:19 PM
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!

onatreetop
12-17-2009, 11:22 PM
Good luck at Jefferson. I called them but they didnt seem to know what I was talking about and gave me the run around. I asked for a WG and they want to give me to the RA dept. Which is where I should go but there was no one doc that specialized in WG but offered to treat it. I said no thanks after hours on the phone.
Hammonton is a bit further for me. I saw Soloway and he lowered the pred to 30mg and kept the cytox 100mg.Then He loaded me with med samples and boxes of crackers from a food basket he had been given. He was in a good mood. He actually cracked a smile more than once. I go back the first week in January for the next fallow up(2 1/2 weeks). I hope JHU calls soon. Good luck with your sister. I hope you are all happier soon.

elephant
12-18-2009, 03:29 AM
Lila, I admire your strength in going through this with your sister. Your sister as you know is very overwhelmed and sometimes it takes time ( her time to figure it out). Like Sangye stated she may one day want to join the forum and read all these stories. We are here for you and your sister.

Lila
12-18-2009, 02:18 PM
UPDATE: Just got home from seeing my sis at the hospital. She DID get the trache out. I did notice that her breathing is much better. It doesn't sound like she has any kind of obstruction there. She looks much better also. I'm not sure if it's just cause she got that trache out. She looks back to her 'ol self' aside from the nose problem. I know that it's only a matter of time before she starts feeling awful again...right? At least that's what I'm getting from everything I'm reading on here. I did urge her boyfriend (she would listen to him better than me) that it's very important for her to go to John Hopkins. He said he will give her 'the push' and that's really all I can do right now. I know she is on Pred IV in the hosp right now. At home she's only been on 10mg and she told me the ENT doc wants to taper her off that so that when she has her follow-up on the 23rd her will know how her breathing is on her own. Thanks so much to everyone 4 the support. This has been a very emotional thing for me and I will be sure to post updates. I know that at least TONIGHT I will rest peacefully and so will she. Good luck to all of you! :)

Sangye
12-18-2009, 02:32 PM
I'm sure I won't be the only one on here who wants to throttle those docs! Her Wegs is not cured and cannot be put into remission so quickly. All they've done is suppress her symptoms temporarily with a big hit of pred. I'm sure she's feeling much happier at the moment, because high dose pred makes you feel euphoric at first. IV pred will normalize her breathing within a day, but it doesn't mean the underlying Wegs fire is out. That takes months.

For her to go home and plummet down to a measly 10 mg pred is not good. I have no idea what that ENT is thinking. You can't have active Wegs so bad that you need an emergency trach and within a handful of days be fine enough to remove it. Aarrgh.

Lila
12-18-2009, 02:48 PM
I know Sangye...and I completely agree with you. However, my hands are literally tied. There is nothing i can do. My other sis was there with me and on the way home she said " you know you didn't have to harp on her about seeing a Weg specialist, she is feelin good" I just told her the same thing everyone on here is telling me. I just hope her boyfriend pushes her cause' she will not listen to me! I would do ANYTHING for my sis but I CAN"T make her do anything! I guess that will have to be my new attitude...as hard as it is! Im killing myself over this...really...mentally. I will def print everything I can from this post and be sure that I give it to her when she get's home. Thats a promise!

Sangye
12-18-2009, 02:54 PM
I'm just upset with her docs. You've done everything you possibly can, Lila. You can only preserve yourself and hope for the day that she comes around. It's hard enough to talk to her from what you say, but it's impossible to talk to high-dose pred.

Lila
12-18-2009, 03:04 PM
Yes...Im upset too. I surely thought the doc would keep the trache in and tell her he was 'in over his head'. But, that of course didn't happen.

Jack
12-18-2009, 06:09 PM
I just want to agree with Sangye, this does not sound like the correct treatment at all. :(

At the end of the day, you can't live your sister's life for her. You have done the work and made the recommendations, I don't think anyone can accuse you of neglect! But you also have your own life to live.

onatreetop
12-18-2009, 11:28 PM
I agree. There is nothing more you can do. You have done what you can just by being with her through this. It is hard to see someone we love so much make the choices they do sometimes. All you can do is be by her side and support her in anyway she needs or should I say wants? Yes wants is the word. We cant make people do what we know is best no matter what. They have to want it for themselves. Hopefully she will feel okay these next weeks could be interesting just be there for her and when she is ready she will say lets go. We are all hear for you and will be thinking of you. Just a foot note..... when I saw my RA he lowered the Pred. to 30mg and there it will stay until next visit in January, 2 1/2 weeks then we will see what happens. My symtoms are no where near what your sisters are. I present as a normal healthy person. Nothing odveusly wrong or sick about me. Except bad spelling and a touch of crazy:). Thats where I am at in treatment now. All blood levels and counts are good. So............

It's going to snow!!!!! A lot!!!!!!!!!Are you ready? I can't wait!!!! Winterwonderland in South Jersey!!!!! We are excited!

Lila
12-19-2009, 12:13 AM
Just got the dreaded call...they had to put the trache back in. They said there was more crusting...I think this my be the motivation. Will check in later...gotta get the number for JHU and give it to my mom to call 2day. She's being released. I hope it won't be to long a wait....everyone keep your fingers crossed and PRAY...if u pray..

Sangye
12-19-2009, 01:42 AM
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
12-19-2009, 10:23 AM
Thanks Sangye, Im still at work..I'll get back on later..my sis is now home

Lila
12-19-2009, 12:30 PM
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
12-19-2009, 12:43 PM
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
12-19-2009, 03:56 PM
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
12-19-2009, 04:16 PM
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
12-19-2009, 04:24 PM
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
12-19-2009, 04:31 PM
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
12-19-2009, 04:37 PM
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!:D i still have shopping to do too. Oh well maybe on the way home from the airport?

elephant
12-20-2009, 12:02 AM
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 :)

Sangye
12-20-2009, 02:17 AM
Lila,
Okay, here's what to do about the records thing. Call the Patient Services Director at Jefferson and explain the urgency of the situation-- that your sister requires highly specialized care asap, but that JHU can't even schedule her until they have records to review. Patient Services represents the patient and can move mountains in a hospital. If you hit a roadblock (I never have with them!), then call the Hospital Administrator. You can do this on the weekend-- they're all in.

A regular rheumy is not skilled and experienced enough with Wegs to treat it. Some of them have treated a few Weggies, but that is nothing compared to the Wegs specialists. (eg, My JHU Wegs rheumy has 30-40 Weggies on ritux alone. That's only one drug, and not the most common!)

I'm not thrilled at the idea of just any doctor starting her on "something." Other than pred, they all take a few weeks to really kick in. She should definitely be on high dose pred if she's having symptoms enough to warrant a trach. I'm not giving medical advice, I think that just goes without saying. High dose pred alone MIGHT knock the Wegs down enough to buy her a little time. It's not enough to get active Wegs under control and keep it there, but it's good at taking down the inflammation caused by Wegs.

As far as pain meds, no need for her to take them if she doesn't want. They don't do anything to improve the condition, just make her more comfortable. I don't take them, either. I get severe migraines that last for days from just one dose.

onatreetop
12-20-2009, 04:02 PM
Yes ! Yes ! Yes! To all of the above. i know it might be hard to get anywhere right now but the phone is inside the house not 4 hours away. It is worth the effort to try if your sister is ready and willing. Do what you can and it will all fall into place.
How much snow do you Have? We have almost a foot now.:):):):)
We have over night guest to play in the snow with in the morning after i atempt the philly drive if the roads are open? Love the snow!!!!!So beautiful and peaceful.

Lila
12-20-2009, 04:26 PM
At this late hour Im on the phone with my sis ! She too is annoyed FINALLY with the ENT at Jefferson. Discharged w/o any Weg meds...AND was refererred to a Pulmonologist! She is really hesitant about that long drive to JHU..I did however find another doc in New York...Dr Paget. He works out of a hospital there. Does anyone know of him? I know it will not be as good as JHU but at least she's making a move...Onatreetop-the snow that I have here is unbelievable!! I dont even know how Im gonna get out! The snow is backed up against my door!! I love the snow but I have too much to do!!!

Lila
12-20-2009, 04:31 PM
Thanks AGAIN Sangye-I cant thank u enough! My sis is back and forth trying to make a decision. The 4 hr trip to JHU is whats holding her back. I will call the hosp and try to get her records sooner. Duh, I should've thought of that sooner! ...to call Patient care! Thats what I do at my job...(medical records)I wasnt even thinking! I know once someone calls Administration, thats it. It gets done right away!!! Duh, Duh, Duh to me!!! : )

onatreetop
12-20-2009, 10:02 PM
Do you believe all this right now.The weather and your sister? If you need a driver just let me know. I could figure something out.This weather doesnt scare me. I learned how to drive in some REALLY deep snow at Lake Tahoe where I grewup. Sure it might take 3 or 4times longer to get there but I could. just putting that out there for you. My moms flight just got cancelled so................I wont be driving to philly this morning. My husband said he had to basically plow his way down our very long driveway with the front end of his car late last night 1 amish. Hope you are okay and warm, The power was off in spots here and there all day. Like street lights for a block in OC. Strange really. good luck.:)

Sangye
12-21-2009, 02:46 AM
Lila,
That's pretty funny about you being in Medical Records. Just goes to show how exhausted you must be with all this!

My first docs were local--5 min away. Nice, but almost killed me several times. Their ignorance caused permanent damage. My next docs were 3 hrs away (Mayo AZ) and were way better. Still not Wegs specialists, so I was constantly stressed and not really getting the best care.

JHU is 2 hours away (really just over an hour, but traffic, parking, etc... make it longer.) I no longer have any doubts about my care, I have the best care possible, and every one of my specialists works with tons of Weggies. They know exactly what to look for and how to coordinate care with each other.

I think your sister should get to JHU and have them coordinate her care. She won't be driving there that often. Many tests and procedures can be done locally. She can find a local rheumy who will work under the guidance of the JHU doc.

But start with JHU. If you start with a local doc and then ask them to get JH's okay on everything, you're more likely to ruffle egos. I don't know if that makes sense, but it's worked for me.

She may not need a local rheumy anyway. My PCP is local and communicates with my JH specialists very well.

Lila
12-21-2009, 07:36 AM
Thanks Sangye, I just called the medical records at Jefferson, they are out till Tuesday. Now she is crying cause she is bleeding (I think from the trache). I dont know what to do...if she goes to the local ER Im afraid they will not treat this properly. I dont even THINK she will go to the ER. She just told me that she is going to lay down. I cannot even get to her house because the snow is so bad here. I know its a far drive to JHU and thats whats holding her back. Even though there are many people who will not hesitate to take her. Thats why I found this other Dr. Paget in NY. I would have more pease of mind if she just went to JHU. I think she needs to start taking the Pred again until she can get to see someone. She has quite a bit left. UGHHHH! I wish I could take a couple of her problems and give it to me instead. Im so sorry if it seems like all I do is complain on here. I really don't have too may people to listen to me. I promised her I would not tell my mom that she's doing bad today cause my mom is 72 years old and it's too much for her to handle. I dont know what tomorrow will bring but Im def calling Jefferson to try to speak to an administrator about getting those records sooner. Thats right, no one is even there tomorrow!! GRRRR !! : (

Lila
12-21-2009, 07:54 AM
Onatreetop- that is so sweet of u to offer to drive. My sis has many people who offered to take her. She is going back and forth with a decision. Today is a really bad day for her. We need to get the ball rolling. She is more worried about losing her job, and not having insurance. It takes forever to get Medicare...and thats really not what she wants. Im on the phone with her now and shes saying how much pain she's in...cant even lift her arm. She was coughing up blood now too. Thanks for listening ...everyone!

Lila
12-21-2009, 08:20 AM
Sangye, if my sis went to JHU as an ER pt, they would have to see her right away...right? Do u think they would have the proper people in the ER for this? I think shes now thinking about doing that..my suggestion...

Sangye
12-21-2009, 08:21 AM
Lila,
If she's coughing up blood she MUST get to an ER today. Her lungs could be hemorrhaging. That could become deadly in a moment's notice. She definitely needs to be on pred, but she should NOT self-medicate with it. That could also be deadly.

In the ER, insist on :
1) Chest CT w/ contrast, not just an x-ray. My lungs can be fully hemorrhaging and an x-ray hardly shows a problem.
2) Neck CT to see the trachea.
3) Sinus CT if she has problems there.

She should also get lab work :
1) CBC
2) Chemistry
3) Sed Rate/ ESR
4) CRP/ C-Reactive Protein-- make sure they order this. ESR is not sufficient for Wegs.
5) Urinalysis-- check for blood

Tell her not to go too far down the road in her head (Medicare, losing job, etc...) She needs to take things one day at a time. Right now she just needs to get care until she can get to the specialists.

And BTW, you're not complaining-- you're just getting help for your sister. It must be agony to be going through this.

Lila
12-21-2009, 10:44 AM
Sangye, How are u so knowledgeable in all this? I know it prob comes from alot of experience...but...you should be a doctor!!! REALLY!! You are so smart! Im getting up tomorrow and will get the ball rolling with medical records, and phone calls. I have Dr Seo's number (410)550-6825 and the voicemail is saying Kimberly will be out of the office tomorrow. Its okay cause I will have to start with Jefferson's medical records..I have a feeling they are gonna give me a hard time..
Yea, it IS agony going through this, but I really don't care what I have to do. Anything to get her better...I just wish I didn't have to work tomorrow...then I'd prob be able to get more phone calls in...

Lila
12-21-2009, 10:51 AM
If anyone on here has a Facebook account, there is also Wegener's support group on there. It's not as good as this one!! But, any information is good information. Just thought I would let everyone know! :)

Sangye
12-21-2009, 11:32 AM
LOL-- I am a doctor. Not an MD, but a chiropractic physician. Most people don't realize it, but our education runs parallel to medical school. We learn all the diseases, diagnostic procedures, etc....

We learn about diagnostic procedures that we're not even licensed to do. In most states, chiropractors are licensed as PCPs. Just like PCPs, we refer patients to other specialists as needed. Part of that process includes explaining what another doctor might do (diagnosis, treatment). We also have to understand what our patients come with-- tracheotomies, pred usage, etc.... Gotta take certain precautions with some conditions and drugs.

Chiropractors don't have training in pharmaceuticals, but we do have extensive training in biochemistry and physiology. So if we learn the mechanism of action of a drug then we can have a good idea of how it will affect a patient. For example, knowing how natural corticosteroids function helps us figure out what happens when a patient is put on artificially high doses of pred.

(We also know when a drug is a ticking time bomb. When Vioxx came on the market, there was an uproar from holistic physicians. Anyone who's studied biochemistry and physiology knows that inhibiting COX-2 enzymes will result in major heart problems.)

I've also learned a ton since I got Wegs. I've had so many complications, it's been an education. Most of my complications are paradoxical and difficult for doctors to stay on top of. (eg, Is it hemorrhaging lungs or blood clots in them? I've had both at once!) And I've learned a lot from reading about others with Wegs! :)

Dr Seo is my Wegs doc. Your sister will just love him. Has a positive attitude about living with Wegs, is very conservative about using high doses of drugs, explains everything, does Wegs research, and is really funny. The ENT at JHU who sees all the Weggies (Dr Young Kim) is great, too. He and Dr Seo work together very well. I'm certain your sister will be relieved to be under their care.

Sangye
12-21-2009, 11:34 AM
More info about getting in to JHU.
Appointments at the Johns Hopkins Vasculitis Center (http://vasculitis.med.jhu.edu/aboutus/appointments.html)

Lila
12-21-2009, 01:25 PM
I just Googled JHU and it's only an hour and a half drive! I hope I did it right.I have no idea where I got 4 hours away! When I told my sis that she is so happy now. I know she will go cause it's almost the same distance as Jefferson! Thanks Sangye for all your wisdom and advice. I read your last email to my sis and I know it makes her feel more comfortable that Dr. Seo is being recommended by someone else! I just pray to GOD that they will see her quickly. She is def gonna go there!!!

elephant
12-21-2009, 01:44 PM
Lila glad your sister is going there! Wish you guys the best!:)

onatreetop
12-21-2009, 01:46 PM
Hope all goes smoothly for both of you. Just got a chance to sit in front of the computer. Was outside most of the day dragging the kids and friends on the sled attached to the back of my explorer. We do it whenever it snows.
After all my ER experience with my mom I cant think of a reason for the docs at JHU not to insist on keeping her. Really If I have the opertunite to pick the hospital Er that specialiize in what I know is wrong with me I would walk there if I could just to get the best possible care. Hope she makes it in soon. And the offer is still good for the drive if you need it. My moms favorite Er trip is always a different hospital. We havent been to the newer one in Vineland yet but we have been to SHore, Mainland, AC, Jefferson, two more in philly all more than once. Stanford is her favorite in California, Its giagantic and offers free massage for patients and visitors. It is an 1 1/2 from her house so she often cant make that ER trip but tries when she can. That is a possiblity, JHU, if you can get in the car and go. I'd do it!!

I think it was me? 4 hours. I have picked my mom up at BWI Airport over the years and I never made it from OC in less than 3hours no ferry. It takes me an 1 and 15 to get to Phl airport from my house without traffic going up RT 55 to Walt Wittman Bridge route. Are you that far up the Ac expressway? Not trying to be negitive but what route did they give you?

Lila
12-21-2009, 01:53 PM
Thanks Onatreetop and Elephant! I feel she has made the right decision in going to JHU! Im so happy she said "yes"!!! Onatreetop- thanks so much for offering to drive! Thats so so sweet of u!! Good things come to good people! and yes...the snow here was ALOT! It took 2 hrs. to shovel out my car with my neighbors help! My back is killing me! Fells like the snow plow ran over it! Im too old for that!!!! : )

onatreetop
12-21-2009, 02:07 PM
I flatten and pack the snow down our very long dirt driveway with help from the kids weight the sled. Today Nikki brought a plastic kiddie pool fixed with rope to tow them in three at a time. I have to say I laughed so hard today that my sides hurt. Mermomies for a lifetime!!! I almost peed myself so many times today watching them fly through the air over bumbs and yelling.
I treated myself to an extending ice scraper/ brush at big lots and love it. Cleaned the car off in record time.
If you need anything let me know.I am always out and about it seems but manage to get most things done somehow. Oh yeah the power of MOM thats it! The roads werent as bad as I thought they would be today either. So your trip should be uneventful to JHU. The kids have a delayed school opening in the morning. They are bummin! So the roads must be not so bad now.

Sangye
12-21-2009, 02:13 PM
I am SO relieved your sister is willing to go to JHU. Surely you heard my big sigh of relief as I read your post?

Dr Seo only sees patients on Wednesdays. Rarely Tues morning, but only in an emergency. I'm at JHU at least once a week. If I know in advance when you're going, we can have lunch! I bet it would help your sister to meet another Weggie.

Lila
12-21-2009, 02:13 PM
No...Im watching the cars drive past and there going pretty fast. Loks like they cleared the roads pretty well here! Well, Im signing off! Have to get up early b4 work to make lots of phone calls! Night nite! : )

Lila
12-21-2009, 02:25 PM
Yes, I did hear the 'big sigh of relief' !!!
Im really feeling so much more positive about this whole thing!! Like, all my research is finally paying off! And, even though I don't know you I feel like I can trust your advise! REALLY!! Yes, it would be great to meet! However, I would prob not go with her because of my job. I'm working on getting FMLA. Although it does not cover siblings, my doc wants me to have it for my own 'anxities' about this....which is good. Because at least if I knew I had to be there for her I could be. It would be great for her to meet you though. When, she talks to someone else with this same disease I know it will make her feel better.
I will be making phone calls first thing in the morning. Have to get those darn records!!
Well, I'm signing off! Gotta get up early! Thanks so much again for all your advise! You and everyone else on here were the one's that made me harrass her about going to JHU! Without that, she would prob be letting that ENT doc take the trache out on Wednesday! She's still going back to him this week. ONLY because he needs to fill out her disability papers. BUT, she will not let him take that out...she PROMISED me! Nighty nite! Sleep tight!! : )

Lila
12-23-2009, 02:36 PM
How is everyone today? Christmas is only 3 days away!!!

Jack
12-23-2009, 10:22 PM
Just got out of hospital in time for Christmas so I'm happy. :)

I've had to cancel all my visiting plans, but looking forward to just sitting at home again with the family.

elephant
12-23-2009, 11:28 PM
Glad to see you back Jack. How are you feeling?

Jack
12-24-2009, 01:45 AM
Bit short of breath, but no pain so I'm not feeling too bad. :)

Even though I don't do much at home these days, it is more tiring than being in hospital. It is frightening how quickly you can get used to laying around all day while everything happens around you. I can see how easy it would be to become bed ridden.

Sangye
12-24-2009, 02:24 AM
I'm always amazed at that, too. By the time I wind up in the hospital, I'm usually in such bad shape that it's a relief to have someone bringing me meals, etc.... When I get home I have to cook for myself-- it's a big deal, depending on how sick I've been.

Glad you got sprung in time for Christmas!

onatreetop
12-25-2009, 09:09 PM
Good to hear you are home for the holidays!! They say there is no place like home and for lots of you it is even more true!!! What a gift too!!! It is xmas AM and I had a quiet minute after my duties so...............Wish you all a merry christmas and a fantastic new year!!!! Are you ready?? I am but sooooooooooooooooooooooooooooooooooooooooooooooooo oo tired. now it is climax time( christmas day ) and the let down or calm begins again. Run, run, run, passout!~!!!!:)

moyan
12-26-2009, 09:21 AM
Hi all and a VERY GOOD CHRISTNAS and new year. I wonder if somebody can help this novice to respond to tabled statements. It says to click above and I do and nothing happens. Do I have to sign in to different areas? :rolleyes:

Sangye
12-26-2009, 09:36 AM
Hi Moyan,
I can help you. What are you trying to do?

moyan
12-26-2009, 09:43 AM
I can't respond to you, but just found something to click. When I read something and want to get in touch it asks me to click one of the symbols above and I do and nothing happens. I have only been on a few days, so there is lots to learn. Thanks for your response, HOORAY, a step forward!

Sangye
12-26-2009, 09:46 AM
If you want to reply to this message (for example) :
1) Click "Quick" at the bottom right of my message
2) This opens a window called "Quick Reply."
3) Type your reply.
4) Click "Post Quick Reply" underneath your message. If you don't click that, it won't save your message.

moyan
12-26-2009, 09:56 AM
Wonderful!! Now, if I could find messages sent to me, I would forget WG!!

Sangye
12-26-2009, 10:03 AM
You can edit your personal options so that you get an email each time someone adds a comment to a thread that you've posted a message on.
1) Click on "Quick Links" at the top of any page
2) Click "Edit Options" This will take you to your personal options.
3) Under "Messaging & Notification"/ Default Thread Subscription Mode : Select "Instant Email Notification" from the drop-down menu.

That Edit Options page also lets you choose how to be notified of private messages that other members might send you.

Lila
12-26-2009, 01:51 PM
I hope everyone is having a great holiday! Im taking my sis to a Rheumatologist tomorrow. We both know that she needs to get to JHU but it's so hard to get an appointment. They will not even make the appointment until they have a note from her physican and ALL medical records (we have those). So, we are hoping that her Rheumatologist will give her the referral note she needs. Also, her Rheumy is not that pleasant of a doc...but we're hoping he will start her on meds too...until she can get into JHU. I do have a question (and I know Sangye will know the answer to this!) How do you know when your in remission with Weg's? Any replies would be great!!

Sangye
12-26-2009, 02:01 PM
Since I'm having a rough day, I'll let the others field the question about remission.

You may have to lean hard on that rheumy to get a letter quickly, but I would insist on it nevertheless. You may be surprised-- he might be very happy to get her to JHU, knowing he's in over his head (whether he admits it to you or not). Lots of liability issues when caring for Weggies, ya know?

andrew
12-26-2009, 02:01 PM
How do you know when your in remission with Weg's? Any replies would be great!!

It can be difficult to quantify. It's a combination of how the patient is feeling and blood results. Note that being in remission does not necessarily mean that you're drug free. It just means that as far as blood results and patient response goes, you're symptom free :)

Lila
12-26-2009, 02:03 PM
Im sorry that your having a rough day Sangye. : (
I hope you feel better soon !!

Lila
12-26-2009, 02:05 PM
Thanks Andrew! Is it the ANCA that needs to be checked? ...or something else? Oh, I do hope this doc tomorrow will give her the letter she need for JHU...can't it just be a quick note Sangye?...or does it actually have to be a 'letter'?

andrew
12-26-2009, 02:09 PM
Yup, ANCA is the main one. Even then in some of us weggies, ANCA doesn't play a big part. In the end it'll be a comparison between her initial blood results and later ones over time as things start to balance out.

Also, remember that remission is something that we MIGHT get. It's not a certainty by any means. Having said that, I'm not in remission but I'm feeling groovy and can carry on with pretty much any of the shenanigans that I used to :D

As for the latter, if it's anything like here in Oz, the doc will have a template letter that he/she can fill out and give to you.

Lila
12-26-2009, 02:14 PM
Oh...I see. Thank You Andrew! and..even though your not in remission it's great that you have a sense of humor!!! : )
I misunderstood..I always thought that eventually Wegs does go into remission. Guess it REALLY is a sneaky disease...

andrew
12-26-2009, 02:15 PM
WG is sneaky all right! So sneaky in fact that you could put a tail on it and call it a weasel :D :D

Sangye
12-26-2009, 02:17 PM
The doctor needs to send a summary letter of her care with his recommendation that she be evaluated at JHU. This is no big deal. They have to write a summary letter after each office visit anyway. It'll take him 10 minutes. Andrew is right-- it's just a template letter. Tell him they will take a week to review her case before setting up an appt, and that it will likely be several weeks to be seen.

Lila
12-26-2009, 02:20 PM
thanks so much guys!!Andrew..ur humor is great...and Sangye you are wonderful and so smart!!!

Sangye
12-26-2009, 02:21 PM
Much of what I know about Wegs I learned from the folks on this forum.

Lila
12-26-2009, 02:25 PM
Much of what I know about Wegs I learned from the folks on this forum.
This forum is great! You can learn a lil' bit from each person....;)

elephant
12-26-2009, 02:32 PM
The blood work ( ANCA) is not definitive marker for remission. I have learned that with WG that you go by how you feel.
Sangye, hope your feeling alright....:(

Lila
12-26-2009, 02:42 PM
I guess it's prob different with each case. Right? I mean...some say ANCA and others say it's by how you feel.

andrew
12-26-2009, 03:01 PM
That's exactly right :) WG has subtle (and not so subtle) differences for everyone. It'll be a combination of factors which in turn are defined by your sister's individual symptoms, ther severity and her reaction to them and the meds.

That sounds rather vague. Sorry!

elephant
12-26-2009, 10:31 PM
Lila, even if I feel like something is off I still get it checked out. Recently I felt like my muscles were a little sore and my fingers slightly arthritic. I just asked my doctor to do some blood work to check things out. I had no other symptoms like( fatigue, worsening sinus/ears, short of breath). I rather be super careful than blowing things off, which I have a tendency to do. :D

moyan
12-26-2009, 11:39 PM
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
12-27-2009, 01:31 AM
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
12-27-2009, 01:49 AM
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
12-27-2009, 01:51 AM
Oh...and Sangye..I hope you felling better today. : )

Lila
12-27-2009, 01:52 AM
signing off...gotta get ready to my sis to the Rheumy. Everyone have a good day!

Lila
12-27-2009, 10:25 AM
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
12-27-2009, 10:48 AM
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
12-27-2009, 11:10 AM
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
12-27-2009, 11:29 AM
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
12-27-2009, 11:36 AM
Yes..your right Andrew..THERE IS HOPE!!! It just seems like when we take one step forward we take 2 steps back with this!

andrew
12-27-2009, 11:37 AM
Other way around ;) Two steps forward, one step back.

Lila
12-27-2009, 11:39 AM
Could anyone tell me how to change my time zone?

andrew
12-27-2009, 11:53 AM
All the way at the top of the page on the right you'll see 'settings'

Click on that.

The resulting page has a menu down the left. About six options from the bottom is a menu item called 'Forum Settings'

Click on that

In the resulting page, about 3/4 of the way down is a drop-down selection of different time zones.

Select your time zone.

Click 'save changes' at the bottom right of the page.

If all else fails just tell me what time zone you are in and I can change it for you.

Lila
12-27-2009, 11:59 AM
Got it! Thanks Andrew~ ; )

Sangye
12-27-2009, 12:00 PM
That guy sounds like a real gem. Didn't even know she had a trach? Didn't he take a history? Looks like the PCP might be the best road to try.

Hang in there, Lila. Unfortunately your sister is going to have to get used to dealing with doctors. The best advice I can give your sister is to learn to dig her heels in when she needs something. Be polite as much as possible, and if it isn't working, rattle some cages.

Lila
12-27-2009, 12:12 PM
I like that Sangye "rattle some cages"!!! : )
I think I've kept my mouth shut for too long..always afraid of pissing the docs off!
NOPE!!!! Had no idea the trache was in!!! She can't get a break with these docs. Most of them are just TOO RUDE, uncompassionate, and just looking to get her in and out! This doc is disagreeing with the docs at Jefferson. He says that Weg's slowly progresses...and her's came on all of a sudden! IT DID NOT COME ON ALL OF A SUDDEN!! I said that to him too! She has been suffering with joint pain, breathing problems and terrible 'coughing up' for over ten years! He thinks it's 'relapsing polychondritis'. HE IS A QUACK! I don't think she will go to him anymore. However, she only went there today to try to get the Methotrexate and the letter for JHU (which was unsuccesful)!
I will try calling JHU on Monday to see if they would accept the letter from her PCP! We'll just try another route! BTW-I don't understand why JHU needs this..wouldn't you think the records would be sufficient? Oh well, it's their rules. We just have to do what we have to do to get her in there!

Sangye
12-27-2009, 12:21 PM
As frustrating as it is right now, it might be a blessing in disguise that he was such an idiot. Your sister can see why it's necessary to have a Wegs specialist. Just be glad he didn't cause her damage, or that his ignorance didn't kill her.

It is possible that she has Relapsing Polychondritis-- very similar to Wegs. Only a Wegs specialist can make that call. In the end the treatment is the same for both, though the prognosis for RP is much worse (unless they've had a big breakthrough in research).

She won't have any idiot docs at JHU to deal with. The Wegs rheumy and ENT are wonderful--very professional. With the exception of one rheumy who saw me when I was in the hospital this summer, I haven't met a single arrogant doctor at JHU. They're confident in their skills, and they don't have to prove it to anyone.

Lila
12-27-2009, 12:27 PM
Thanks Sangye! Gonna go make some coffee, lie down and watch SHREK!! Yea, I'm 34 years old...but I still like Shrek!!!!
Im sorry Sangye...I almost forgot to ask you...are u felling better today?

Sangye
12-27-2009, 12:40 PM
Some better, thank you. :)

Lila
12-27-2009, 12:53 PM
Im glad that your better! ; )

elephant
12-27-2009, 03:00 PM
Lila, I am glad you sister is almost on her way to some really great doctors. It's a bumpy road, but she will get there. Sangye, glad your feeling better...

Lila
12-27-2009, 03:14 PM
Thanks Elephant...I was starting to lose a lil' of my 'umph' in getting her into JHU. But, after talking to you guys...ya gave it back to me! Yes...it is a long, bumpy road....and I'm trying to do as much as I can for her, so that she at least doesn't have to make those dreaded phone calls!

Lila
12-27-2009, 04:55 PM
I don't know if anyone else is up at this crazy hour! Anyway, I was reading through some old posts about the medications. I came across a post from Sangye....the huge dosage of Pred she was on.
Just a lil something to lighten things up-on our way home from her doc appt. today my sis agreed to go to the buffet, as I loooove to eat! She never eats alot...usually lettuce, and cheese is her diet!
So, I looked over at her plate and she was eating french fires and dipping them in the bananna pudding! At first I thought it was cheeze! I didn't want to say anything cause' she always 'on edge' anymore. But, I just had too! We both started craking up! It was the only highlight of the day. But, it was funny! She is only on 10mg of Pred! I can't imagine the combination of food she would be eating if she was on a higher dosage! : )

Sangye
12-28-2009, 01:39 AM
That's a classic pred story. French fries in banana pudding.... ROTFL.

Lila
12-28-2009, 02:00 AM
Yep! It was funny, but also GROSS!! : )
Right now Im writting a letter to JHU...I don't know if it will help any..but It's not gonna hurt any either...right?

elephant
12-28-2009, 04:56 AM
People do alot of funny things with their french fries especially on Prednisone. I'm on prednisone still and I crave sweets! I really have to watch it. My hubby like his fries with Mayo.

Sangye
12-28-2009, 01:03 PM
The ultimate truth about Pred....

http://icanhascheezburger.wordpress.com/files/2009/12/funny-pictures-cat-is-too-big-for-box.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

onatreetop
12-28-2009, 02:22 PM
Have been thinking of you and wondering how things are going. Reads like there moving along. Who was the new Jerk? Local? Ridng the pred train through the holidays has been very interesting. A docs wife that I work for asked if they upped the perd again? So I guess the round look is apparent. That and the shaking. did Jhu make an Appiontment for your Sis yet? i am calling back monday. I am getting more frustrated with the dose I am on currently , 30mgs. I know it can be worse but..................hope your holidays went well mine where just ok. I made it through and killed no one ..........yet.

onatreetop
12-28-2009, 02:26 PM
Sanyge, Hope you are better soon. Everyday is different and hope it is better for you, each one! Hope your holidays are termendous!!!!! I am glad to get a minute to read and chat. It does help. sending you good wishes!!!

Lila
12-29-2009, 02:41 AM
That's so funny Sangye! My sis has gained 21 pounds in 2 months! I keep telling her she looks the same. However, she is getting pudgy! : )
I faxed over the records to JHU last night. Goodness, why didn't I ever invest in a fax machine? $47.00 to fax it from Staples! Kim just called me to let me know that she recieved them. She didn't say anything was missing..so I'm just keeping my fingers crossed that everything I sent is okay. Im sure she would have told me...hopfully..if I needed anything else.
Im on vacation all week!! Whoo hoo!!

Sangye
12-29-2009, 02:50 AM
Lila, that's a lot of weight to gain on just 10 mg of pred! That's what I gained starting on 1,250 mg.... If your sister was not so difficult to talk to, I'd recommend that you tell her to keep it under control. It's very likely a Wegs specialist will put her on much more than 10 mg. But (sigh) I know there's no way you can talk to her about it!

You might want to get a fax machine if you have a phone landline. You wind up faxing things all the time with doctors.... I don't have a landline anymore, so I have to pay to fax. Pricey.

Lila
12-29-2009, 02:58 AM
Things are 'going' Onatreetop-just have to keep pushing, I guess. Just got the call from JHU that they recieved the records. So, just waiting....
The new 'jerk' was in Strattford..Dr. Adelizzi. She's been going to him for a while. I dont know why..he's awful. She claims she only goes to him cause he give her a coupon for the Enbrel..however, she can get that from ANY doc!
How long have you been waiting for an appointment for JHU? I was hoping they would hav someting in January....

Lila
12-29-2009, 03:13 AM
Yes..I couldn't believe the cost! Normally I could just fax from work...but since I'm off all week, I just wanted to get it done last night.
Well, now that sis is also on the Methotrexate she thinks she will lose weight. She said that the last time she was on that it made her nauses. OMG! 1,250 mg of Pred! I cannot imagine! She is so nasty at times NOW...I cannot imagine her on a higher dose. Although, Ive learned to deal with her emotions much better now. Had to learn not to take it so personal and put myself in her shoes!
Do you think Kim would have told me if what I sent over was not sufficent? I didn't want to ask any questions when she called...

Sangye
12-29-2009, 03:18 AM
If she has to go on higher doses of pred, her moods will most certainly be affected. Even moderate doses can make you swing from euphoria to rage. You will have to find ways to confront that if she gets too far out of hand.

Mtx does cause nausea in some people, but the pred is the "high card" and usually overpowers the mtx. Of all the drugs Weggies can take, pred is by far the most damaging and destabilizing to the body.

Kim wouldn't be able to tell you if something was missing. What did you wind up sending as a doctor referral and summary?

Lila
12-29-2009, 03:30 AM
Thanks for the warning!...at least Im aware to be prepared!
Yea, she started the Mtx yesterday, along with the folic acid. When you say 'damaging and destabilizing', what do you mean? I know it's bad for the bones, and emotional effects, but I wasn't aware of anything else...(oh, and the muchies)!
I just sent over that script I was telling you about. If it's not sufficent I guess I will ask about the letter from the PCP. I told my sis she needs to see her PCP for this. Her PCP is the only 'compassionate' doc she has. He is GREAT!
I thought Kim would look over everyting to make sure what is there is ok before giving it to the docs to review...I dunno how this works...

Jack
12-29-2009, 03:39 AM
Long term steroid use produces lots of side effects. After nearly 25 years of them, I've had -

Weight gain
Weight loss (severe muscle wasting)
Osteoporosis
Cataracts
Stomach trouble
Skin thinning
Bruising
Joint pain
Mood swings

and probably others too ;)

onatreetop
12-29-2009, 03:43 AM
I have been waiting for Soloway to send the records via mail. They refused to fax them. The records are to big they said. I call them and Jhu after I am done the net. I hope the new meds work for her. I dont know if you saw one of the other threads but if I dont make myself workout and sweat I gain a pound a day and the presure in my face is ungoddly painful. I have to get the fluid out everyday or deal with lots more pain. One of the people I work for is a docs wife and she asked me last night when I was done if they upped the pred again? So even with the sweating routine I have the very noticable fluid filled face. Just a note. I restricked my salt intake a while ago too.

Lila
12-29-2009, 03:43 AM
Wow Jack! Thanks for the info. !
You would think that the pharmaceutical companies would develop something 'as effective' yet 'less side effects' by now.
Gosh! They've developed everthing ELSE!!

Lila
12-29-2009, 03:49 AM
You are entitled to your own records Onatreetop. And, I think it's some kind of law. They are not allowed to 'withhold' records from a patient....and they are supposed to have it done in a timely manner. I think it's 30 days..That is ridiculous, and that really pisses me off! Sorry....I hate when doc's try to do that to patient's. Can't you just go to Soloway and pick up the records yourself. Maybe that would speed up the process! I had to fax the records myself last night. Went to Staples in Absecon...Im sure you saw my post...$47.00! Still can't believe it.
At this point, I don't think my sis can work out due to the trache. She is having too many breathing problems as is. She normally doesn't eat much..(lots of lettuce and cheese)but since the Pred....
I'm sorry to hear about your face pain. Can't he give you something for that? Is the face pain from being bloated?

onatreetop
12-29-2009, 04:10 AM
I havent asked him for anything yet. Everyone asks me about water pills but???????????????/ i have to ask. The sweating is the only thing that seems to relieve it. i only drink water when I am thirsty now too. I was making myself drink more alot more but cut back on that too. i have fax but was waiting for them to copy the records. So let me know if you need it again, 47.00 is alot!!! The gas to get it to you or for you to get here would be less than half of that!!! It was suggested to me to go to disablity and or ss and apply for benefits. My father of all people seems to think I can get it? Your sister should certainly be eligable for lots of help...... food stamps, energy assistance, disability and or ss. Go to the NJ website. I think they all require the same proof or id. Birthcert, DL, proof of residince, last years taxes and last monthes check stubs from work, birth certs of other people or children etc.... It is all there. I havent made the trip myself yet but keep thinking about it. My cell got shut down over the holidays oh well. We have to do what we do.

Lila
12-29-2009, 04:15 AM
Awww! Thanks! I do have access to a fax at work..but Im on vacation till Thursday..then off Firday. And...I just wanted to hurry up and get it over with. Maybe you could see your PCP for meds? How long has it been since you've been waiting for the records?

onatreetop
12-29-2009, 04:27 AM
to long. I ask everytime I go in and ask the doctor as well as the nurse and the records keeper. So............... I guess I have to grab them myself and make the copies in front of them. i will do it too. I am a mad woman on pred clear the road!!!!!!!!!!! i just have to get in the door. He did give me darvacet for the pain what a joke! I went to to my primary for vicodin and use it very sparingly. I have aways had more swelling with anti-inflamitory meds then less....so that doesnt help either. i am getting on the phone now. Hes away but maybe I can findout if the records went yet.

Lila
12-29-2009, 04:32 AM
I think you need to take action for those records! I know that they have to have it done within 30 days of signing the record request. Did you sign it? My sis goes to Dr. Scott or Chad his assistant in Hammonton. They are GREAT...especially Chad...

onatreetop
12-29-2009, 04:37 AM
Just got the paitent cordinator they were sent in on the 10th of December!!!! now I get to call Kim I guess and see if there is anything missing. Soloway is out til next week still. So maybe I should consider the road trip to maryland Er? they wont keep me but I'd get in the door!

Lila
12-29-2009, 04:42 AM
I was thinking the same thing for my sis...but, she wouldn't do it.

onatreetop
12-29-2009, 04:55 AM
i was thinking road trip!!!Ask her if she would with crazy weggie!!! I was even thinking today. I am so anxious and tired and shaky and swollen at the same time. Even with the pred. Wish I could have a glass of wine to calm my nerves but I would end up asleep or drinking the whole bottle (excess with pred). It must be time to get on the eliptical before I freakout and do something stupid. Got to get rid of this feeling!!!!!!!!!!!!!!!!!!!Awwwwwwwwwwwwwwwwwwwww! And I have to take the second dose soon. argh!!!!! Hey I have a crazy Idea?? Does your sister like to walk?????? I have been meeting my sisterinlaw that least once a week on the boards in OC . We do walk all five miles but it is a nice change of scenery. Something to think about. Get out of the house. we could rent a surry if you dont want to walk it. they are fun too. Think about and who knows maybe we can start aWG walk on the boards????

Lila
12-29-2009, 05:06 AM
Sound fun! But, she is in a 'mood' today...and prob tomorrow too! I don't think she's feeling good : (
I just have to literally 'roll with the punches'!!
She likes to walk, but like I said..she gets out of breath easily, and her feet are killing her. Just can't wait for her to get to JHU...
It's too cold out there Onatreetop to walk the boardwalk! The temp. is dropping!

onatreetop
12-29-2009, 05:17 AM
just a thougth. we could rent the surry on a warmer day and sit next to the big blue and just take it all in. Doesnt have to be a workout. Make sure her feet are above her heart. It is thing thing that has helped me besides the ebspons salt soak. Oh............. salt bath!!!!!!!!!!! Yeah I have to do that for the swelling!! That might work havent tried that one in along time. But it use to work. Yeah!!!!!!!!!!!!!!! I sweat no matter what the temp is outside! I am one hot mama! Radioactive even!!!! If it were up to me the heatwould be around 55 and I would be in shorts and a tank top. I wore flip flops at xmas dinner. it was 30 something out and I was still sweating.

Sangye
12-29-2009, 07:17 AM
Onatreetop, limiting your water intake while on cytoxan is a 100% guarantee to develop bladder hemorrhage and future bladder cancer. You must drink a LOT of water when you take ctx to flush it out of your bladder. And forcing yourself to sweat like you are doing-- you're losing a lot of water. This is very dangerous.

When you do get in to JHU, please tell the doc what you're doing regarding exercise, sweating, drinking, etc...

Also, I wouldn't advise you to go to JH ER just to get care sooner. The wait is always MINIMUM 12 hours. None of the ER docs will have any idea what to do for treatment. If they admitted you, you wouldn't have a Wegs specialist-- just a regular rheumy. You'd only get a Wegs doc consultation if you were in the ICU.

elephant
12-29-2009, 07:34 AM
Onatreetop you are so funny. That prednisone just makes you feel like you have tons of energy, take an easy. Also when your sweating you lose alot of sodium and potassium, the prednisone also depletes sodium and poassium. Eat some banana's. I am really excited that you will evenually get to JHU. Like Sangye, you need to drink plenty of water.

onatreetop
12-31-2009, 02:07 PM
If I werent so swollen I would feel better. i can see my face change during the day at a large rate. The other swelling is mainly hands and neck. i was reading the side effects and warnings again.................Swelling is on the bad list fro both pred and cytoxin. If the swelling gets worse I am afraid I will have to go to the Er before I lose my sight or cant breath. The air way though my nose isnt enough to breath through any longer and find myself breathing through my mouth most of the time now. Swallowing is ok so far but the nose is hurtings so........... It hasnt fallen yet but I would rather it not of course. if I am thirsty I drink and believe me its is more than 3quarts of water a day now. I was making myself drink more but with this swelling and gaining fluid if I dont sweat it out I am just doing what I can to relieve some of it. My wieght went up and down 5 pounds yesturday!!!!!!!!!!!! That is some massive fluid.

onatreetop
12-31-2009, 02:10 PM
I sent the appointment form and insurance info to JHU. The records were sent by fax Monday? or Tuesday took an hour. So now I wait again. They ask when you can come????? I said whenever they can get me in I will show!!!! I am getting scared again.

Sangye
12-31-2009, 02:11 PM
Onatreetop, I'm really concerned about your symptoms. I think it's worth a trip to the ER.

onatreetop
12-31-2009, 02:23 PM
Me too. I am and have been very active always . I have always dealt with pain from one area or another as far back as I can remember. I have always been a pretty good judge about when I need to go but really dont want to at this very moment. If the night gets worse I will. I promise. I need to take all the meds now and rest for now. I have had a very emotional day on top of it all. More fluid release!!! Crying off and on all day by myself. Sweating to of coarse i can do that sitting still.

Sangye
12-31-2009, 02:27 PM
I understand about not wanting to go tonight. I think you should plan to go early tomorrow morning, though. I'm very concerned your kidneys might be involved with all the fluid retention. Many people on here have had surprisingly few symptoms only to find out they were in kidney failure. Trust your instincts that are telling you something is going on, okay?

I'm sorry to hear you're crying. What's going on? I was very depressed over Christmas, too and it's only been since yesterday that I feel like myself again.

onatreetop
12-31-2009, 02:37 PM
Christmas wasnt what it could have been or should have. But I was over that after the day began xmas. I just start and cant stop dont really know why the meds? Being tired? i really cant say its anyone thing really. i keep thinking about when I was first told that I had this almost like a flashback I guess and start getting upset again. i guess I am feeling sorry for myself and all of us. I get up everyday and go to work and take care of my kids and just keep going and going then relieze my husband needs to have a plan in place of some sort in case......................I end up vacationing in the hospital for a period of time. poop like that my mind is all over the place right now. Sorry to dump but thanks for caring.

Sangye
12-31-2009, 02:44 PM
I understand those feelings, and you're not dumping by expressing them. The pred definitely amplifies whatever we're feeling--happy, sad, angry, all of it-- and makes the emotions more changeable. Overexerting with Wegs will do it, too. When I'm overdoing it I'll just start crying and can't stop. It's physiological.

But Wegs is a heap of grief--many layers. Even when it's going okay, it doesn't go away and that is something to grieve. I've worked with a therapist since I got diagnosed in 2006. I don't know if that's your cup of tea, but for me it's been a lifesaver.

onatreetop
12-31-2009, 02:48 PM
Lila,

Anyword From JHU???? I finished and sent off the form and insurance info. I need A DR name for the refferal. I know they are in my network so getting it is not a problem but they want a name so I am waiting for a response to that. Did you fill out the appointment request form that was on line??? It was sent by Sue something at JHU?? After the request went in for the appointment. Hope you get in soon andme too. Let me know whatyou get whenyou get it. i told them any available appt they had I would show up for regaurdless of time or date.

onatreetop
12-31-2009, 02:56 PM
I havent thought about that really. i do have alot of really good close friends. But I do get tired of being upset and snap out of it. Sometimes it just takes longer than others. Just a bad WG day I guess. One for the journal. Your are very right about the meds even hought i know it still stinks. I just have to let it out like eveyone else sometimes. Finding the time to is the fun part without effecting the people around me.That is another reason the eliptical is useful. After my first dose of pred in the morning before everyone wakes up and I start getting anxious Ijump on for the first twenty minutes after it kicks in and I am shaky and it helps get rid of that feeling and I adjust better and am good til the next dose anyway.

jola57
12-31-2009, 04:32 PM
I guess I am lucky because I have never had any emotional problems besides a few little hours which i shared with you all and gotten immediate outpouring of help. Pred has given me the shakes and insomnia but I dealt with them in my own way. Onatreetop, you have a housefull, on any given day a healthy person would feel the way you do, so don't beat yourself for venting. With so many plates around we can dish out as much as we want and there are plenty plates to shift the burden to. I am an upbeat pacifistic empath (mouthfull isn't it) and so my feelings are always on understanding those around me and being calm and even tempered. This philosophy has helped me to immediately accept the disease and the life I will lead from now on. I can only wish that some of that calm goes out to you all as my gift for the new year. Everone breath deeply in, picture a sunny beach and calm soothing water. May we all have that special place in our mind all through out 2010 and may we all escape there when needed. Sending my warmest happy and calming thoughts your way.

elephant
01-01-2010, 12:50 AM
Onatreetop, I hope you went to the emergency room.Ditto what Sangye said I am also concerned about your symtoms and the rapid weight gain. I was told if I gained 2-5 pounds in one day, to go to the emergency room. Your kidneys could be failing. I'm so sorry you are going through this emotional roller coaster. I am here for you. Please let us know how your doing.

Doug
01-01-2010, 07:10 AM
That was what went through my head when I read your symptoms, too, Onatreetop. This is one time to do the thing we all put off the most: going to the emergency room when our symptoms look serious. Keep in mind, Onatreetop, elephant and I are two of the site nags....! I hope you do get medical attention soon, though. That rapid weight gain and loss is just too big a symptom to set aside in the "it'll go away" slot.

Jack
01-01-2010, 07:40 AM
I might as well add my bit to the nagging! ;)

Learn from my experience of a few weeks ago - I put off going to the doc for a week when I knew that I really should and it turned out that I had a blood clot on my lung. It could have turned out much more badly. The hospital seemed to think so when they would not let me go home.

I am concerned about your kidney function too. I know to my own cost how quickly they can fail beyond recovery.

Doug
01-01-2010, 07:51 AM
Three of the big nags are on you onatreetop!

Sangye
01-01-2010, 10:07 AM
Four.

Do I hear a Fifth? :)

Terri
01-01-2010, 10:57 AM
I'll be 5. I'm a procrastinator too.

moyan
01-01-2010, 12:55 PM
Sorry to see all your trouble and worries. Chances are good it will get better :)
Writing this because no doc ever told me to take pred some at a time, I took all 60 mg at the same time. Now down to 15 so...........

Sangye
01-02-2010, 03:57 AM
Moyan, most people take all their pred at once in the morning, regardless of dose. That reduces the insomnia it can cause.

Doug
01-02-2010, 01:19 PM
Terri- We'll pretend "Terri" is diminutive of "Terror" for purposes of being a fifth NAG. Ha! Welcome to the group. I'm bad, too, about tending immediately to things I don't feel are related to WG. However, who knows? Therefore, I propose that we each, in turn, be nags for each other, as needed. It is meant to be a friendly push, afterall, though it may see tough sometimes. On the other hand, "Terri" needn't be diminutive for "Terror", because you are a nice person, if a friendly nag with the rest of us. Ha!

Jack
01-02-2010, 08:33 PM
I think all your nagging gave me the final push to the hospital when I had a blood clot before Christmas.
Thanks all. :)

elephant
01-02-2010, 11:29 PM
So glad us naggers brought you to the hospital. Glad you are feeling better.

onatreetop
01-03-2010, 01:07 AM
Thank you all again. I was sucked into the holiday vortex again and decided to take the kids and myself to the shore for new years. I needed a different view than what I keep looking at at home. The swelling did go down with rest and the roller coaster ride of emotion with it thank god. i was in the land of dred. But decided I am finished with it again. So I am still cataloging my symtoms on a daily basis and watching for changes. Hope you all had a great new years!! There is nothing like party people in there PJS wearing party hats with blow horns on the boardwalk watching fireworks to begin the new year. That was us!!! Played games all night!! Nice to be in a differennt place once in a great while. I am seeing the RA Wednesday and the pulm. Thursday. Still waiting to hear from JHU. Did I mention we ate wayyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy to much crappy snack food !!!!It was pred heaven!!!!!Pepperoni bread,Spinach and cheese bread, stuffed pretzels , Art/spinach cheese dip with toasted bread, chicken fingers and fries, homemade chocloates,chips and dips , grapes and strawberrys. I was staying away from the chips(salt). ice cream, more chocolate, wine and champange. For breakfast we has egg,sausage and cheese with pepper cassarole, pancakes, bacon, and mamosa!!! Oh yeah I am feeling huge!!!!!!!!!!!!!!!!!!!! Me stomach still hurts.

Sangye
01-03-2010, 02:40 AM
Glad you had a nice time, Onatreetop. (Of all the food you listed, the artichoke-spinach dip got me drooling. I love that so much and never have it!) Make a BIG note somewhere about the effect that resting had on your swelling and emotions. I bet you will forget that and get in the same loop! I do, too. It's taken me awhile, but I finally see it coming and can often stop it in time.

Jack-- I'm happy to nag you any time. Just glad you listened to all of us and it worked out okay. :)

elephant
01-03-2010, 03:00 AM
All that food you listed makes me want to eat it. Yummy!

Lila
01-06-2010, 11:59 AM
I haven't been on in a few days! I hope everyone had a great New Years!
I was reading the older posts and want to say...THANKS FOR THE NAGGING!!...especially about my sis going to the right place..JHU. I called them today since I haven't heard anything...and it's been a week that they have had to review the records. They needed her personal info-and so I told them to call her at home. BIG MISTAKE! She is not thinking clearly. She made her appointment for the same day that she has her follow-up at Jefferson. Although her doc at Jefferson sucks...she needs to see him to extend her disability papers! UGH! She has me so annoyed. Now, she is saying she is calling JHU to reschedule! I'm so annoyed with her..she must not realize everything I've done! She is lucky that JHU got her in so soon! She shouldn't jeopardize that..but at the same time I can see the importance od getting the papers filled out too. She can't do much if she doesn't have health insurance!
Sorry guys...just needed to vent! : (

Lila
01-06-2010, 12:02 PM
Onatreetop- I hope your Holidays went well! It's freezing here...and they are calling for snow again on Friday! : )

Sangye
01-06-2010, 12:06 PM
If she still has the JHU appointment, she should keep it and let them do the paperwork for Disability.

Tell her this from me: The JH schedule is extremely tight. The Wegs doc only sees patients once a week, and he's booked for months in advance. If she cancels, good luck getting anything else for a few months. Patients come from all over the world to JHU.

Lila
01-06-2010, 12:11 PM
Onatreetop- Im so sorry that I did not respond sooner! Until recently, the 'posts' were coming to my 'inbox' at my AOL address...it seems like since the website changed, I no longer get them. It's weird...I will have to try to fix that...somehow...!
Yes, thank God! I called JHU today and they got my sis in for the 19th but..the prob is that she has her follow up at Jefferson that same day. She HAS to go to Jefferson to get her disability papers filled out..but I'm so disgusted that she wont let me call her Jefferson doc so that he can see her sooner. UGH!!! I guess she noticed how irritated I just got on the phone with her when she said "I will just have to reschedule my appt. with JHU"....because she hung up quickly with me...she doesn't want to listen to my nagging!
Im reading your posts and Im worrying about you...are you ok?

Sangye
01-06-2010, 12:12 PM
Lila, also tell your sister that the docs at JH are more likely to write a quality letter for Disability purposes-- to really explain that she can't work, etc.... Her doc at Jefferson obviously doesn't understand Wegs very well and is less likely to write a good letter.

Is it for SSDI or employee disabiity?

Sangye
01-06-2010, 12:16 PM
Wow, if they got her in on the 19th you can bet she's in bad shape. New patients never get in that fast otherwise. But if she cancels it, she shouldn't assume that they'll rush to get her in quickly again. She'll go to the back of the very long line.

Lila
01-06-2010, 12:18 PM
Thanks Sangye...
Yes, she still has the appointment. Apparently, she left them a message that she needs to reschedule. She said when they called her they offered her the 19th and the 22nd...and she chose the 19th! UGH! I knew I should have made that appointment MYSELF! She is scheduled to see Dr. Seo...YAY! My other sis that will be taking her (cause my sis's boyfriend broke up with her on NY's...so rude) thinks that they MAY be able to make it to both appointments. I dont know..You know talking to her is next to impossible most times. I will see what kind of mood she is in in the morning. Are you sure the doc's at JHU could fill out the papers even though another doc started them? Because, they have her going back to work on the 19th...

Lila
01-06-2010, 12:19 PM
Can anyone tell me why new 'posts' are no longer showing in my AOL? It was showing up before the website changed...Thanks

Lila
01-06-2010, 12:22 PM
I know Sangye...I know..and I'm so annoyed with her right now. And...she knows it by the tone of my voice! SSDI is Social Security disability right? If so, it's not that..it's just employee disability. Her Jefferson doc says she can go back to work with the trache! He told her to just put a scarf over it!

Sangye
01-06-2010, 12:24 PM
There should be someone to call at her workplace to ask about it.

Okay, it's good you're not hearing the names I'm calling that doctor at Jefferson.... There's a BIT more to Wegs than just appearance.

I have a suggestion for dealing with your sister. Right now she's running you ragged with her moods. SHE'S the one who needs help and who will suffer the consequences if she doesn't get it. You might consider reminding her of that. If she wants to be in control, then hand her the reins and step aside.

Lila
01-06-2010, 12:29 PM
Employee disability...
She thinks she can work too!

Sangye
01-06-2010, 12:32 PM
Well, maybe she can work. I don't know. If she thinks she can work, then why is she applying for disability????

elephant
01-06-2010, 12:35 PM
Lila, I was put on short term disabilty and I didn't even have a trache. Then I tried to go back to work and stayed there for one month ( I felt like crap) and had my big flare ( lung nodule) and sinus problems ect... As you know she needs to rest... She has not seen the doctors yet at JHU to evaluate her. She needs to know that if she goes to work she can get worse from the stress of the job and really aggravate the WG. I'm sorry your going through this and feel bad about your sister.

Lila
01-06-2010, 12:40 PM
I can't do that. If I did, nothing what get done! That's why she's in the condition she is in now...she tries to ignore things, thinking they will go away..or get better on their own! She NEVER calls the doc when something is wrong. I tried to tell her I could call Jefferson and get her in sooner, so that she could make it to both appointments. She said 'no'. I've worked in doc offices and I know just what to say...but..ugh...so disappointing. Yes, ragged is the word!

Sangye
01-06-2010, 12:42 PM
Do you think she would talk to me on the phone?

Lila
01-06-2010, 12:43 PM
Thanks Elephant- I will see if I can talk to her tomorrow morning. She is very difficult. She sould be so LUCKY to get this appointment so quickly. When I tried to tell her that...she said that JHU told her they also had another appointment a few days after that. And yes, her job is stressful. Not to mention, lifting boxes and all. But, she always stresses that she's not an 'invalid' and doesn't want anyone's help.

Lila
01-06-2010, 12:45 PM
Maybe Sangye...
Like I said...it all depends on the 'mood'. Right now, she's not talking to me! But, since she's been off from work she calls me in the morning to wake me up.

Sangye
01-06-2010, 12:48 PM
I'm going to send you my cell phone # via Private Message. You can call me or she can--or both! Sometimes a few words from a stranger can do more than a million words from a sister.

Lila
01-06-2010, 12:49 PM
I think it's like a 'medical leave'...I'm really not sure. I just now she's due to go back on the 19th...and that's why she has to make the Jeff appt.- so that he will extend it. She is not telling the ENT at Jeff that she's going to JHU. He will be mad because he wants her to see a Rheumy at Jeff-someone that knows NOTHING about Weg's! But, thank God, I at least talked her out of that one! Actually..thanks to all your NAGGING Sangye! I appreciate all the nagging-really I do!

Lila
01-06-2010, 12:51 PM
Thanks Sangye! When the time is 'right' I will call you on 3 way. I think she'll do it if I catch her at the right time! I'm just hoping to have a little talk with her before JHU calls her back in the morning!

Lila
01-06-2010, 12:57 PM
Got it Sangye! Thanks! I will look on here first to see if your online...and if it's a good time to call. Much Appreciated! Your prob right-even though your a stranger (not really) she would prob listen to you more than me! I'm just her little sister!

Sangye
01-06-2010, 01:00 PM
Try calling even if I'm not online. I'm on the road a lot-- JH once a week, etc...

I'm the little sister, too. Your sister really reminds me of my sister in some ways! But yeah, she's probably never going to listen to you!

Lila
01-06-2010, 01:06 PM
Ok, that's what I'll do! Your right, she will never listen to me cause I'm the lil sis!

onatreetop
01-08-2010, 12:22 AM
Lila , So sorry it is such a fight right now but she has to realize even in the back of her mind that it is important that she gets there. I have been on the phone with Susan Hilton a few times now just trying to start the scheduling process. She has all my info. but is trying to locate the records that have been mailed and another set that were faxed.So I am in the holding area again. I just went through a bad low, moody, upset, scared to tears etc. Ended up at Shore Monday in the er. They did what I asked them to thought. Blood work and chest xray. I was having trouble breathing and the swelling was really bad. I was afraid my kidneys were shutting down but were okay. So........... I cant wait to hear from JHU, Kim or Susan at this point. I will let you know what they tell me when they do. Let me know if there is anything I can do to help I am just a hop skip and jump away.

elephant
01-08-2010, 12:32 AM
Onatreetop, how are you feeling?

Sangye
01-08-2010, 02:03 AM
I LOVE this group. Here you have Onatreetop who's been feeling more like Felloutofthetree offering to help Lila and her sister. And an Elephant offering to lift Onatreetop back up in the tree. :D

Doug
01-08-2010, 03:12 AM
Me, to Sangye! That's where this group works and oithers are more superficial. I hope you can get it across to "Big Sister" that she had best better clean up her act and understand the nature of her illness- before she causes herself serious harm. Nag on, sister!

Lila
01-08-2010, 11:32 AM
LOL !!!! Sangye!!!!! Thats so cuuuuute!!!! : )
I love that!!!!

Lila
01-08-2010, 11:39 AM
Thanks Onatreetop! Don't worry about me and my sis! You need to focus on yourself right now! :(
Really, keep calling JHU for an appointment. I have found that these hospitals and doctors offices will NOT call YOU back! YOU have to be the one on top of things..like ONATREETOP!!
Wow, it's amazing how close we llive to each other. My (other) sis is an RN at Shore Memorial. I hope you were treated well.
Thanks so much for caring about me and my sis~
Right now, you need to just focus on yourself! Keep making those phone calls! Don't give up! ; )

Lila
01-08-2010, 11:49 AM
Sangye,

YAY! She is keeping the appointment with JHU!!!! It's about a 3 hour difference with her appointment at Jefferson. So, she IS gonna make it to both...I hope. I'm worried about the traffic.
When I spoke to Kim she said the appt. would be with Dr. Seo. However, when the called my sis and made the actual appt. they told her she would be seeing Dr. Ritu and Dr. Levine. Do those names sound familiar to you?...oh..and she said yesterday that she would love to talk to you. So, hopefully soon! ; )

elephant
01-08-2010, 12:03 PM
Like I said, Sangye is too funny and clever. Thanks for the laugh..;)

Sangye
01-09-2010, 03:34 AM
Lila,
That's great news. I don't know who Dr Ritu is-- must be a research fellow or something. Dr Levine is great. She'll be in secure hands with any of the Wegs docs there.

onatreetop
01-09-2010, 04:18 PM
Okay I am back!!!! I got my appointment!!!!!!! talked to kim today my RA pushed her and got the 20th of this month!!!!!!!!!!!!!!!!!!!! thats only a week and 1/2!!! Now I am feeling better after showing up at the RAs office and he wasnt there. I paniced was having rib and chest pain and went to the prim. doc instead of the er again. He checked me out and all was good except my pulse. He changed the pain killer and added the valum to calm me and lower the pulse and it worked!!!! Now when I take the pred I have to take the valum with it. I feel almost human again instead of the freaky energizer bunny. My appointment is with DR. Killman???? I think thats his name? Have you seen him in the group?

Lila, When is the appointment your sister got? Shore has fine. they wherent busy and the Er Doc was short and quick to the point. He was getting me ready to leave when I asked him about the rib and heavy chest feeling while breathing? He said oh I didnt here that earlier you need a chest xray and off I went. He looked at the films not the radioigist and said he thinks they are clear but will call if they find anything later. they actually asked me what can we do for you? I looked at him and laughed out loud!!

elephant
01-10-2010, 12:06 AM
Glad your back. I'm counting the days with you. :)

Sangye
01-10-2010, 01:50 AM
I'm really counting the days....

Onatreetop, I'm very happy to hear the valium is helping. Often you need something to counter the effects of pred. Please be aware that valium can suppress the breathing, so if you're already having problems, it can be dangerous--especially at night. I suggest you have a psychiatrist manage your care instead of a PCP (or other specialist) who isn't really trained in the use of such drugs. It will likely require dose adjustments as you increase or decrease the pred. As long as you're on a psych drug, you should be under the care of a psychiatrist.

This is a pet peeve of mine. Long before Wegs I insisted that my patients be treated by a psychiatrist if using psychiatric medicines. It's a specialty and requires a specialist.

Lila
01-10-2010, 01:14 PM
Im gonna call on Monday to see if there are any cancellations. She is crying she is in so much pain. Since she's had the trache in she is unable to take her Enbrel injection. She can hardly walk. They prob won't have anything but it's worth the try.
Yes, I looked up Dr. Levine..I saw his pic! He looks very nice!

Lila
01-10-2010, 01:16 PM
Onatreetop- so glad you got your appointment! My sis's is on the 19th. I'm glad your feeling better! : )

Sangye
01-10-2010, 01:18 PM
Lila, what's the connection between the trach and her Enbrel injection?

Lila
01-10-2010, 01:18 PM
oh, and Dr. Ritu is a 3rd year resident.

Lila
01-10-2010, 01:20 PM
Because it's an open wound. The Ebrel gives her a greater risk of infection. Her wacky RA doc told her he wasn't sure if she should start taking the Enbrel again. So, she thinks it's best to wait till she goes to JHU. I kinda agree...not sure. However, the pain is unbearable for her right now...

Sangye
01-10-2010, 01:23 PM
I don't remember why she was on Enbrel, either....

Lila
01-10-2010, 01:24 PM
Oh...sorry! She was on the Enbrel for her Rheumatoid Arthritis.

Sangye
01-10-2010, 01:29 PM
Well, any drug she takes for Wegs is going to put her at risk of infection--they're all immunosuppressants...

However, I have no idea about Enbrel or how it works. I know studies showed it to be useless for treating Wegs, though. I wonder if she truly has RA or if it's been Wegs in disguise all this time. Any ideas from the docs?

onatreetop
01-10-2010, 01:36 PM
Hey there has to be another med she can take. OMG!! This is the stuff that is upsetting to me too. There are soooooooooooooooooo many meds and so many other possiblities. If she is in that much pain she will take the pain meds. She has too!!! if I hadnt taken mine today first thing I never would have been able to get off the floor I flew to or the bed I waited in til they kicked in. you have to do what you need to until we get to the docs at JHU. i cant wait and am scared too. My mom wanted to drive me there today after I made the mistake of telling her what happened this morning. i told her they wont send me to the vasc. dept unless I am in Icu so............not happening today. hope I can wait til the 20th she said. But your sister is so much farther along than I am. I would call every morning and check for cancellations if I were her too. My body keeps changing and the symtoms more or different. I am still learning. hope you are all well and warm. It is a bomby 25 degrees this evening and I am wearing a tshirt with capris and flip flops. My kids friends think I am a freak. Oh well it beats sweating like a river.

Lila
01-10-2010, 01:40 PM
I know....
She's been on the Enbrel for maybe 2 years...It has helped take the edge off. I have been wondering the same thing Sangye. I truly believe she could have had Weg's for many years now. She's def been suffering with all kinds of different things for the past 10 years or more. He crazy RA doc does not believe she has Wegener's. He says that her symptoms came on too fast! HELLO? She's had so many problems for a long time. I cannot wait till she get's to JHU!!!! I was actually able to get the day off!! YAY!! So, me and my other sister will be taking her. Her boyfriend (was supposed to take her) broke up with her on New Years day. It's prob a blessing in disguise.

Sangye
01-10-2010, 01:44 PM
What day are you going? And Onatreetop, what day is your appt? I have to be at JH one day that week (different dept). If I can get my appt the same day as one of yours, maybe we can get a cup of tea?

Lila
01-10-2010, 01:45 PM
Onatreetop- I have always loved the winter...but, this one is way to cold!
My sis has tried taking Hydocodone and Percocet...it is not even touching the pain. She just took a Combunox (spelling?)...I hope it helps her. She cannot even walk or lift her arm. There is nothing I can do for her...that's the worst part.
Yes, I wll call JHU first thing Monday morning. Myother sis that is driving her is going away to Mexico. So, if they have something sooner we will have to find another way to get there. I'm a wreck when I don't know where I'm driving! Major panic sets in!!!

Lila
01-10-2010, 01:50 PM
We are going on Tuesday the 19th! Her appt. at Jefferson is at (:30 and her JHU appt. is at 12:00 (I'm almost positive). I will double check with her tomorrow to make sure it's def at 12:00.
That would be great! I would love for her to meet you!

onatreetop
01-10-2010, 01:57 PM
Mine is wednesday the 20th at 3-430. How long did they tell you it would take an hour and 1/2?? It has to be right across the Delaware Line? it has always taken me 3 hours to get to the inner harbor. tea would be wonderful. i am planning an earlier arrival so that I can find where to park etc. Maybe we can meet before if not after? My mother is planning on coming but I am not sure it is a good idea only because long rides take her days to recover from. i hadnt planned on staying over so.......I will have to talk to her about that i guess.

Lila
01-10-2010, 02:01 PM
Oh my...I sure hope it's not a 3 hour drive. We only have about an hour and a half window between her 2 appointments...She HAS to go to both of them....

Sangye
01-10-2010, 02:02 PM
I think a good 1.5 hrs is probably accurate. I only know Dr Seo, and he's very much on time. You'll see the doc and then get bloodwork done in the same office.

Do you have a disabled parking permit (temp or permanent)? If so, I can tell you where to park for free. Otherwise, you have to pay for parking.

Sangye
01-10-2010, 02:03 PM
Lila, did you Mapquest the trip? Here's the address and local directions:

Directions to Johns Hopkins Bayview Medical Center (http://www.hopkinsmedicine.org/directions/johns_hopkins_bayview_medical_center.html)

onatreetop
01-10-2010, 02:06 PM
I am always up for a ride. I have driven cross country 5 times. 4 with kids. one way with kids and husband, he had to fly home earlier to get back to work. The last time with my mom in a budget truck towing her car on a flatbed! Thats me not very afraid of much. I usually get done what ever I put my mind to too. So if you guys need a driver the offer is still there. I was in philly last week than vineland than Elmer than ocean city than marmora than Seaville than Strathmore than Somers point than.................. I get around and am not afraid to drive anywhere.

Lila
01-10-2010, 02:08 PM
No, I did not even think of that Sangye! Thanks, I will print that from work on Monday. I don't have a printer at home. Not that it matters..just curious, how much is parking?

onatreetop
01-10-2010, 02:08 PM
Lila if you are in Philly you are more than half way there from here. So you should be good.

Lila
01-10-2010, 02:10 PM
Wow!
You really are all over the place! I cannot drive like that! I get too confused. If I have to go somewhere I ask for landmarks...I never know street names! I still get confused with the White Horse Pike and the Black Horse Pike and I've lived in Jersey all my life!!!! : )

Sangye
01-10-2010, 02:19 PM
Parking is $8 for the day. It goes by the hour. I think the minimum is $3?

onatreetop
01-10-2010, 02:30 PM
I havent had a problem finding where I want to go. Sanyge, Let me know when you are going and we can do breakfast, lunch or linner or dinner or cocktails!!! Are you on the route to Jhu from Pa?we maybe able to meet in the middle if its not out of the way? Or on your way?

lila, dont forget all the tolls! I cant remember but there were quite a few over 10 dollars I think one way.

Lila
01-10-2010, 02:33 PM
Oh, ok...that's not bad at all! It's was like $18.00 to park at Jefferson for only a couple of hours!
Thanks!

Sangye
01-10-2010, 02:33 PM
I live in Montgomery County-- west of Baltimore. I'll have to see what days I can get my appt on. Sometimes I don't have much flexibility.

But for both of you, you'll likely be coming back to JH for some testing and appts with other specialists, so if I don't connect with you this time, we can try the next!

Lila
01-10-2010, 02:34 PM
Yea, it's ok! I just want to be prepared and make sure I bring enough!

Sangye
01-10-2010, 02:37 PM
I'm still not used to this East Coast stuff-- toll roads and hospitals charging for parking!

Lila
01-10-2010, 02:45 PM
Yea, I know! It's ridiculous! But, there's nothing you can do about it! The hospital I work at doesn't charge...but, most do. I think it's awful. People come to the hospital for themselves or to visit loved ones and have to pay! Where are you originally from Sangye?

onatreetop
01-10-2010, 02:48 PM
Sounds like a plan. It takes a few decades to get use to I am afraid. All though the epass thing is pretty cool if you have one. i just got one less than a year ago and dont know why I didnt do it sooner. No more digging for change at the booth!!! the parking is bad too I agree. In california you get your ticket validated and pay nothing at most hospitals and all handicaps are free parking even unmarked metered spots just dont forget the handicap tag on the mirror!! My mom has one and it is nice I have to say. We will met soon I believe especially with the same hospital and continent.

Sangye
01-10-2010, 02:49 PM
My dad was in the Air Force, so we moved all over country growing up. We lived on the East Coast when I was very young, and my parents were both raised in NYC. I spent most of my life out west. It's much more relaxed and easy-going.

Lila
01-10-2010, 02:56 PM
Yes, it's very stressful here. My dream is to move out to the country. Everyone makes fum of me! But, I would love to move somewhere in Pennsylvania, on a farm! Really! I think it would be fun!
Maybe I will do that when I retire....35 years from now!

onatreetop
01-10-2010, 03:07 PM
I found a very quiet forest to live in here in Jersey. i have to plan not to let the fuel light turn on because I wont make it to the gas station if it does. To go to the food store is at least fifteen minutes away. If I need to go to walmart or Target its thirty minutes. The doctor thirty minutes . Ocean city thirty minutes. We have lots of wildlife and trees and more trees. no pavement. no nieghbors windows to see in. Can see a house or two in the winter when the trees are bare but otherwise nothing but nature. My husband is from Pa and I wanted to move there but he wanted to stay closer to the shore. It took me two monthes to find this place that reminds me of home without the altitude or hills or mountains but we have all four seasons!!

Lila
01-10-2010, 03:16 PM
Onatreetop-that's great! I though you lived right in O.C. on the beach!
I love looking at nature, it'so relaxing!

onatreetop
01-10-2010, 03:27 PM
I spend a lot of time there working or driving my 14 year old to the high school when he misses the bus. my mother got a winter rental there this season that I have been cleaning for eleven years now on the beach. It is really nice to be here. We did live in OC but after the twins came we had to find a bigger house and it wasnt happening in OC. but we spend more time there now than we did when we lived there. It is a nice place to visit but you couldnt pay me to live there especially in the summer I hated it then. The rest of the year was nice but the summer insane!!!

Lila
01-10-2010, 03:43 PM
I'm not a big 'beach' person. I don't like the heat or the cold. I wish it was fall all year long! That's my favorite season!
My sis wants to get out of the house tomorrow, so maybe we'll head to the mall if she is feeling up to it.
Well, off to bed I go! Have a good night! Take care!

onatreetop
01-10-2010, 03:58 PM
Have a good night sleep also. Hope the mall is fun. there are some really good clearance right now. Have fun!!! Happy shopping!!

pberggren1
01-10-2010, 04:43 PM
I love fall too. It is by far my favorite season. I cannot handle the heat and the mosquitos and other bugs during summer I find quite bothersome as well.

Jack
01-10-2010, 07:42 PM
I used to have a plan to move near the sea when I retired, but now that I have mobility problems, I'm glad that I live on the edge of a major city with good facilities.

onatreetop
01-11-2010, 05:36 AM
Fall is my favorite too. The colors are amazing out here. When I was very young I went to a horseback riding camp in Mass. with my best friend for the summer. It was the first time I had ever been on the east coast. It was so beautiful and made such an impretion that I dicided then that I would move this way some day and here I am. In the woods but 30 min from the beach.Which is ok to visit like I said but dont want to live there. I dont talorate heat or humidity well in fact I hate it so the summer is bad here to hot but the fall is perfect.

Lila
01-19-2010, 12:15 PM
Onatreetop- Good luck on Wednesday! : )

Lila
01-21-2010, 11:29 AM
Onatreetop- Please let us know how you made out at JHU today! I hope you had a safe trip there!