my sister....

[onatreetop]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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..