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Thread: my sister....

  1. #11
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    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...

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    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!

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    Okay...now I see your post! So sorry...Thanks

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    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.

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    Internet access is a GREAT gift for her!

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    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... : )

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    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.

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    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..

  9. #19
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    Red face

    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!

  10. #20
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    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.

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