RV Help Center

I have ARVD and an ICD. With the progression of the disease, it has gotten to the point that The RV is not pumping very well and I have gone into heart failure. It's not too bad right now, but it has a way of rapidly declining the nearer I get to this invisible edge.

What I want to know, is if you have had a heart transplant, how did it go. Where did you have it preformed? How long was your wait for a heart? What are the guidelines for being listed? How long and painful is the recovery? How expensive are the meds if you have insurance? How many meds are you on for the rest of your life? Right now I take 40 pills a day. Does life get better? I am pretty much an ARVD couch potato. I noticed when I was in the USAF that I had no running ability, even for a mile, I would fall of the squadron's pace. I never have had any kind of physical stamina even when I was somewhat in shape. Unfortunately, I wasn't diagnosed as having this very rare disease until 2001 even though I was having syncope and sustained VT since the mid 1980's. Anyone out there picking up what I'm putting down? I welcome your responses.

This is a free chat room and you can talk to people who have had heart transplants.
http://groups.msn.com/TransplantSupportLungHeartLungHeart
Message Board - Another great way to connect to others and ask your questions that you have been meaning to ask and would like feedback from other members.

The Resources that are offered at the site continue to grow each day. You will find something of interest to both pre and post transplant recipients, and also to family members and caregivers. In the Resources you can find: Links, Medical Journals, Books, Medical Equipment, Money for Meds, Rx Programs, Support Groups, Lung Tx Centers, Heart Tx Centers.

Remember, the chat room can be found at:
http://pub45.bravenet.com/chat/show.php/3827307012
All you need to do is create your nickname and then a profile (ex: post lung, Loyola, live in Ohio) Then join the great chat.

The Chat room is open 24 hours a day, but most often chatters can be found every evening from 8pm Eastern Time on into the night. Twice a week we have planned topic chat beginning at 8pm Eastern Time.

Please stop by and see what site others say makes a huge change in their lives.

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Gordon Henley Around Town Dinner
invites
Heart Transplant Recipients, Families and Friends

Meeting Quarterly at Steak and Ale at LaVista Road and I - 285 in Atlanta, Georgia
on the following Tuesday Evenings at 7:00 PM

Please RSVP at least 48 hours before to:
Gerry Henley at 678-583-2282 in order to have approximate count for restaurant

2008 Schedule:

Second Tuesday of: January, April, July & October

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West Georgia Transplant Support Group

The West Georgia Transplant Support Group has formed and is meeting the first Monday of each month at Douglasville Medical Center on Hospital Drive at 7 PM in Douglasville, Georgia. The meetings are open to transplant recipients, candidates and their families. The group fills a tremendous need for those who are waiting on a transplant and have no one to talk to as well as an information and sharing forum for those who have already received organ transplants and their Primary Caregivers. For information or directions call Donna at 770-505-3503 or Michelle at 770-577-0506.

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November 18, 2008 Would have been Kel's Tenth Heart Birthday

TripleHeart, Inc.™
E.G. “Kel” Kelley and Joanne Kelley
2991 Concord Way • Douglasville, Georgia 30135-1769
Phone: 770-920-2324 • Fax: 770-920-0887
E-mail Us at: kelkelley@tripleheart.org or jkelley2002@comcast.net

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