Cleveland/ sarcoidosis conference

I was looking for people who are going to the conference and interested in meeting in Cleveland. I posted this question several months ago but we never really came to a final decision. Would everyone like to meet for dinner on Thursday or Friday night. I look forward to putting a face with the name.
Audrey

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We would be interested in meeting!!

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hey there if you go back and find a thread we posted that patianne66 got the clinic to reserve a spot for us all thursday night starting at 6:00 at the Intercontinental Hotel in the lobby by the fireplace. I reposted the info under the subject where I am doing name tags for all of the FSR people who are going to the conference on Friday. Anyhow hopefully a bunch of us will see eachother Thursday night :)

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also if you guys want name tags the reason we were doing this was because we only know eachother by screen names and at the conference our name tags will be our real names :) anyhow if you want I have about 40 name tags so far we are putting our screen names, real names, hometown, and type of sarc on them. if you want to email me or msg me your info and i will add you on the name tag list for me to make

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Was really excited about this, but after receiving "therapy" from my ICD again, I'm scheduled for my second ablation on Oct. 2nd and am pretty sure a six and a half hour drive won't be recommended on the 5th. I hope everyone who does go learns new things, finds new hope and. An share with the rest of us.

Sorry I will miss it.

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Brain fog: can't remember if I replied; Jim and I will see you at the fireplace on Thursday @ 6:00

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Great!

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Hi,
Can anyone give me more imformation about the convention. How long does it last is it one or two days. What time does it start and end. Is it too late to sign up. Would love to go. Can someone add the link again. Annie

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Dear twist, can you tell me more about the ablation? I may be facing that soon. So sorry you can't attend.
Audrey

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Basically they map out your heart to find where the scaring is. That's where your electrical impulses get confused or mis-routed causing vtach and arrhythmia. It's a long slow process (though I will tell you Hopkins and one hospital in Boston do MRI's on people with devices (no one else will) and this can give them a much better picture going in and shorten your time on the table significantly.) My first ablation lasted about 6 hours.

Once they find the scar areas, they basically burn them. It's a fairly non-invasive surgery (they go in through arteries). Where it gets tricky is if they have to puncture through one of the walls in your heart to get into other areas. And worst case scenario they have to make a small incision in your chest to ablate the outside of the heart. I didn't have either of those. And am hoping I won't this time around.

Recovery isn't too bad. Nor does it take too long. But sometimes after an ablation you will experience some arythmias or vtach while the heart heels. Chances are they'll load you up on Amioderone.

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Wow, I appreciate the information. Thank you so much.

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Thank You Arthur for the link. Asked for Thursday and Friday off that week. Hope I get the time off.
Annie,

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hi Annie, I hope you can make it

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I checked and the seminar is full.

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Hi,
Tried to sign up today but it is all filled up. They said sign up has been going for six months. Six month ago didn't know I had sarcoid. Very dispointed. They put me on a canclelation list.

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Does anyone know if there is a thread about incoming flights or connecting at the airport? Seems wasteful for everyone to rent a car when we're going to the same place or for everyone to hire a taxi, too.

I am planning on renting a car, and I am arriving at the Cleveland Airport about 2ish on Thursday. If anyone wants to meet me, I'd be happy to share my car, or make mutual arrangements.

Looking forward to the conference!

Loran : )

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Thank you farrow but I arrive on Monday. Very sweet of you to offer. They have a train to downtown from the airport but I don't think it runs to the clinic.
Audrey

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Hi Have tried to reach you but my computer was receiving and not sending out, Just now hat it fixed, I will have to change my email now to christinamcneil@hotmail.com until to-morrow when I can ge ahold of bell. Anyway my Son Ray and myself will be there for the conference. we were unable to get a room at the main hotel so we are staying at the other hotel they say it is walking distance I certainly hope so, but I use a scooter.
Anyway my name is Christina, I have Sarc pretty well in all my organs, fortunately lastley my lungs. Lymph nodes, heart, spline, just recently liver, I did try to email this info to you but like I said unable to now. We will be there on the 4th and meet you in the lobby. Looking foreward to seeing everyone God Bless Christina5

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I'm attending, and can't wait to meet everyone! FYI, taxi from the airport costs $34.
See you there!
Nancy

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You can take the red line downtown and switch lines,get on the health line and get off at 100 Euclid. I called the hotel for this info.

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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