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MikeB
I was think about how I can get involved with maybe helping young children as well as teens deal with heart surgery. Who would I have to talk to in order to do this?
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JimL
Well-known member
Mike, Your question sounds familiar to me, but then my pumpheadedness kicks in and I can't pin it down. Talk to the people at your favorite hospital. It might take a bit of a run around, but you can probably find the right people to talk to if you are persistent. I recently got reconnected with the Red Cross blood program, which took a bit of searching on my part. I've donated 6 gallons here in Michigan, and they used to contact me regularly, but after surgery their contact stopped completely. Anyway, persistence seems to have paid off.
Maybe my limping response to your post will prompt someone else with accurate information to post it here....
Maybe my limping response to your post will prompt someone else with accurate information to post it here....
Mended hearts
Mended hearts
You may want to check at the hospital or do a google search for Mended Hearts to find a local chapter. I am not sure if they deal with children or adults though.
Mended hearts
You may want to check at the hospital or do a google search for Mended Hearts to find a local chapter. I am not sure if they deal with children or adults though.
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MikeB
Ahhh, I remember the Mended Hearts website, but I totally forgot about it, I signed up to be a volunteer, but there isnt a Chapter in my area, maybe I will have to start one. LOL
Ross
Well-known member
I wasn't all that impressed with my local chapter of Mended Hearts. First off, they want money and then they insist that they and they are the only ones that know what surgery is about when we all know that's not true. Anyone who's been there knows. I don't know if all chapters are like that, but it seemed to me to be more of a cult with forced membership then it did people willing to help.
hensylee
Well-known member
We don't have a Mended Hearts group in my hometown either so I couldn't get to any meetings or contacts. Aren't they for CABG, tho? Mostly old folks have that; not children.
Why not check in with the social services director at your local hospital. OR call the American Heart Association. They might be able to put you onto something.
We have a man here in our town who has a challenged child; he became a clown years ago, costume, make-up, etc. Maybe that was his way of helping his child. He visits everywhere, putting on his act. His wife also dresses up and participates with him. She is Raggedy Ann. They go to hospitals, many local charitable functions, even nursing homes. They are in great demand.
Why not check in with the social services director at your local hospital. OR call the American Heart Association. They might be able to put you onto something.
We have a man here in our town who has a challenged child; he became a clown years ago, costume, make-up, etc. Maybe that was his way of helping his child. He visits everywhere, putting on his act. His wife also dresses up and participates with him. She is Raggedy Ann. They go to hospitals, many local charitable functions, even nursing homes. They are in great demand.
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MikeB
Ross said:
I did notice that you ahve to pay, something that sort of keeps me away, I think I will just do some volunteering, as I do want to have to pay in order give up my time, not that its a big deal, I just dont think you need to pay. i will start looking around my area for other options.
Ross
Well-known member
MikeB said:
Mike it could be just me, but during my last surgery, they showed up and started their talking, which I didn't mind right up until they snuffed this place. I had come here for free, made friends, had lots of emails to read that really, if I hadn't of had them, may not have recovered. I was in CSISU for 50 days!
The people here made all the difference in the world to me which is why I've stuck around. If it helped me that much, I'm sure it's helping others as well.
To hear those people talk, there is no other support for heart patients. They are the one and only and know it better then anyone. Funny thing is, they didn't continue to come back when they couldn't get me as a member.
I just looked at their membership terms. Why should I pay to tell my story to some poor soul who has to go through this? Sorry, but VR.com, even though it's not a mandatory pay site, is by far the best for heart surgery support. I don't care what they say. I'm not putting them down, I just don't understand the need to be a paying member to go on local visits or offer advice. If you've been through this surgery, that's all the training you'll ever need to understand someone else about to go through or having just gone through it. If interested, take a look at these membership terms for Mended Hearts. http://www.mendedhearts.org/frame-members.htm
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Mary
It was a St. Louis chapter of Mended Hearts that brought me my heart pillow and alot of literature my last day in the hospital. The volunteer was a very nice man who offered no resistance when I countered with information about www.valvereplacement.com
Because I did have a good experience, I attended the November meeting of our local chapter. It was a let down. My husband also attended, and during the "get to know you" conversations, a lady remarked that he looked remarkably fit to have just had Bypass surgery (because heart surgery must be for males and only for ones with blocked arteries). When the members realized it was me, several said, "You look too young to have had OHS." I laughed, because it was the first time I had heard that line, even though I've read many VR members' posts where it's happened to them before.
Finally, we were probably 20 years younger than anyone else there, so I won't be attending any more meetings. Don't get me wrong; they were all very nice people, and there was no pressure to join the chapter. But like Ross stated, VR is my first choice for support and information.
Because I did have a good experience, I attended the November meeting of our local chapter. It was a let down. My husband also attended, and during the "get to know you" conversations, a lady remarked that he looked remarkably fit to have just had Bypass surgery (because heart surgery must be for males and only for ones with blocked arteries).
When the members realized it was me, several said, "You look too young to have had OHS." I laughed, because it was the first time I had heard that line, even though I've read many VR members' posts where it's happened to them before. Finally, we were probably 20 years younger than anyone else there, so I won't be attending any more meetings. Don't get me wrong; they were all very nice people, and there was no pressure to join the chapter. But like Ross stated, VR is my first choice for support and information.
Mike I think it is a wonderful idea. I know when Justin was young, I would have loved to know about someone like you. actually I hear often how the Heart parents w/ kids younger than Justin love to hear about him, the older "kids" give them hope.
The Congenital Heart Information Network has a list of support groups, maybe one is near you http://tchin.org/support_groups/index.htm
also there have been a few chapters of Little Mended Hearts ope across the country, I don't know what it cost, but my friend is the founding Mom,
Thanks, Lyn www.caringbridge.org/nj/justinw
The Congenital Heart Information Network has a list of support groups, maybe one is near you http://tchin.org/support_groups/index.htm
also there have been a few chapters of Little Mended Hearts ope across the country, I don't know what it cost, but my friend is the founding Mom,
Thanks, Lyn www.caringbridge.org/nj/justinw
Mike, I just saw where you live I believe I know some moms that started a support group out side of Hershey, how far is that? Lyn
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MikeB
Lynlw said:
That is about an hour away, which wouldnt be a problem.
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labguides
I attended a Mended Hearts group after our daughter had her surgery. I thought I might be able to help families in waiting rooms. Basically, I was told that there is a team who visits the patients in hospitals and there was no room for others. They said the local doctors do not call them. They learn about patients having surgery from hospital volunteers -- usually the one staffing the waiting rooms.
