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Considering the end of VR.org - Looking for your thoughts

Help Support ValveReplacement.org:

carolinemc

Well-known member
Joined
May 31, 2010
Messages
826
Location
kansas city, mo
Hank, I guess you are still here, it is still running. I wish I could donate, but I am down to a few dollars and awaiting word on my SSDI case and Medicaid. Hope you keep hanging here. This place has been a life saver and keep me sane all these years. I was here before in 2001 and I was facing send bypass with St. Jude's leaflet valve. Being here helped me. I was gone for over a year because I was dealing with credit card debt. Was happy when I came back. Been back off and on since. Keep up the good work everyone.
 

Hank

VR.com Founder, Now just a Member
VR.org Supporter
Joined
Jun 5, 2001
Messages
1,278
Location
Mesa, Arizona in the good ole USA
The J Meister is back! Yes, the original days are the memories that keep my will to keep this site alive going. The Fab 5 are forever engrained in history. Not to mention the 10's of thousands we have helped since those early days.
 

honeybunny

Well-known member
Joined
Jun 20, 2015
Messages
1,045
Location
Outside Houston, Texas.
I have not blown you off, Hank. Just been super busy at work and home. I went to one site recommended by my THI contact, www.foundationcenter.org, but you have to join to access the site, and because there may be a fee involved, I've not yet gone deeper into the site. Just wanted to let you know that VR.org is not forgotten.
 

Mike1959

Member
Joined
Jan 24, 2016
Messages
13
Location
England
Dear Hank and all users of this site.

This site has provided us all with support and comfort and invaluable guidance in our hours of need.

Therefore I urge all of us to donate a little to keep this site running, (I have) so please support our friends and colleagues for this great service!!
 

SumoRunner

Well-known member
Joined
Oct 25, 2006
Messages
942
Location
Latham, NY
Here's one reason why new users may not come in or stay once they've found us. Site design. The top forum page has no less than 24 topic headings. Some are only hours old, some days, weeks, even over a year since anyone has posted there. Why keep a topic open when no one has shown an interest in many months?

The brain has a magic number, seven. Go ahead, research it. There is some stack inside your head that will naturally retain seven pieces of information but begins to lose track at 8, 9, or more. 24 is overwhelming.

If the front page were less "cluttered", i.e. with just 6 or 7 headings, then perusing and choosing a topic would be more natural, and they could all be seen in one glance rather than having to scroll down and forgetting which headings came before. They might at least click down one level to see more detail. Then give them sub-topics at that level.

So make categories broader, more encompassing and easier for our feeble brains to scope out at a glance.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,416
Location
Queensland, OzTrayLeeYa
SumoRunner;n885279 said:
The brain has a magic number, seven. Go ahead, research it. There is some stack inside your head that will naturally retain seven pieces of information but begins to lose track at 8, 9, or more. 24 is overwhelming.
some advice on a thread for you to consider
http://www.valvereplacement.org/foru...583#post882583
actually my post directly under it is good food for thought too
 

carolinemc

Well-known member
Joined
May 31, 2010
Messages
826
Location
kansas city, mo
I am so sorry, I am dealing with some other health issues and have not been her much. I hope you do not go. A lot of people love the advice and suggestions done here by all of us. I am sorry as I am in a financial situation and cannot donate anything at the moment. But please try to find way to stay.
 

Squashplayer

Premium Level User
VR.org Supporter
Joined
Mar 17, 2005
Messages
22
Location
New Haven, Connecticut
My aortic valve replacement happened in March, 2005, after my asymptomatic bicuspid aortic valve was discovered by a very smart doctor, I went into planning mode, consulting with cardiologist and CT surgeons, and (by pure luck) ran into VR.org. This wonderful site has brought me into contact with very smart fellow patients, who provided education and important perspective, helping me calm down and move into the surgery, which turned out extremely well. I believe it would be very sad if this extraordinary resource were to disappear. Like ShezaGirlie (above) it has been a long time since my AVR, and I feel great! I just made another donation, and I would urge us all to help Hank!
 

Paleowoman

VR.org Supporter
VR.org Supporter
Joined
Jun 14, 2010
Messages
2,808
Location
Surrey, UK
SumoRunner;n885279 said:
Here's one reason why new users may not come in or stay once they've found us. Site design. The top forum page has no less than 24 topic headings. Some are only hours old, some days, weeks, even over a year since anyone has posted there. Why keep a topic open when no one has shown an interest in many months?
SumoRunner I've been on holiday so only just now read your post or I'd have repied when you wrote it. I'm on other forums and see no basic difference in the site design. The headings are not topic headings but forum section headings, if you want to read posts about Anti Coagulation you go to that section, if you wat to read posts about Valve Selection you go to that section, and so on. It would be awful if you had only topics showing rather than the defferent sections. But honestly the easiest way to naviagate this forum, or indeed any other similar forum, is to click the 'Activity Stream' button at the top of the page, you get the latest posts shown in order so you can easily read what is being posted in an instant - that's how it is on other forums too, thogh some might call that button 'Latest posts' rather than 'Activity Stream'.

I have a bookmark in my browser for the forum which takes me straight to the 'Activity Stream' page. The other option is 'Today's Posts' button next to it, but since "today" may be a different day in the UK or Australia or Asia it's better for those of us outside the US to click the 'Activity Stream' button.

The other thing is that there is invaluable information in some of the older forum sections, no matter how old, which is easy to acess by going straight to a particular forum.

Hope this helps !
 

DebbyA

VR.org Donator
Joined
Feb 5, 2007
Messages
1,178
Location
Tucson, AZ
As others have found, it's a shock to check in after too long and see this thread. I just made a donation. This forum was so important to before and after my first valve replacement 10 years ago. I'm heartened to read that others are still finding it so. I don't visit so often because I feel my experience is too out of date to be useful.
Hank, if you need to retire on your laurels, you certainly have a whole laurel forest. You and Michelle created a wonderful place here.
Thank you from the bottom of my twice-mended heart.
 

Bryan B

Well-known member
Joined
Jan 16, 2004
Messages
1,897
Location
NC
Another "old-timer" checking in. It's been a couple of years since my last visit and a lot has happened since then. I lost my father in late 2016 to complications from a stroke and lost my mother in March of this year after a long battle with cancer. I know this place was a tremendous help before my first surgery in 2004 and again in 2011, and I hope I've paid that forward by helping others during my time here.

If the decision is made to retire the forum I completely understand, and it won't be the first forum I've been a member at for over a decade to do so. I believe it becomes much more difficult to keep a forum going as the way people communicate online continues to evolve. At the same time this forum was a beacon of light for me during some very dark days and it would be nice if it remained available for others who may be desperate for information and support at a very scary time in their life.

Bryan
 

pekster11

Well-known member
Joined
Apr 20, 2011
Messages
103
Location
Chester, UK
i have been an observer and a very occasional poster on this site for 7 years now.

My time for a valve replacement and aneurysm repair is drawing near now

would be a shame if this forum was gone, just as i need it most
 

tigerlily

Well-known member
Joined
Jan 30, 2006
Messages
150
Location
Pittsboro, NC
I would hate to see this site end. It was invaluable to me 12 years ago when I had my first valve replacement and I don't know what I would have done without it. As in all things, once I got through that particular crisis, I moved on to other stuff which have included a number of other health issues. Last year, I received a cochlear implant and that has been quite the journey! Anyway, my point is that there always seems to be something demanding our attention. I am now at the point of needing another valve replacement soon and I'm so glad you are still here! It seems like a lot of support groups have moved to FaceBook but not everyone is a FaceBook user or fan. I actually do use it but it's not the same as this forum and the information I get here seems more knowledgable in my opinion. It's a great comfort to be able to come here and so helpful in our decision making.
 

ottagal

VR.org Supporter
VR.org Supporter
Joined
Aug 8, 2008
Messages
2,519
Location
Can.
epstns;n885621 said:
I've never used FB, and plan not to do so in the future. Just too many data security issues. . .
I agree with you on that. I would not be posting like I do on a facebook page.
 

AZ Don

Well-known member
Joined
Apr 23, 2013
Messages
698
Location
Phoenix, AZ
Just wanted to say thanks to Hank, Michelle, and all the members that have made this site what it is. I have learned so much from this site and tried to share some of this knowledge with others. I only look in on the site occasionally now but if/when I need another surgery I do hope this site is available. There is a wealth of information here and It has been so very helpful to be able to share experiences with others in similar situations.
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
3,688
Location
California
I've been away from this site for far too long, and am distressed to see that its days may be numbered. Like many others, the only support that I've given (until now) was to add to and update posts on the forums.

I've got some ideas about sponsorships -- Arnold Schwarzenegger had a valve replacement a decade or so ago -- he may be able to contribute, with few or no conditions - and I'll see if I can track a Schwarzenegger foundation down.
The Bill and Melinda Gates Foundation may be able to help this domestic site.

Hank - please keep me updated on the status of this site.

(And thanks for all your efforts to keep it running - and your occasional advice about the angry threads that I used to attract)
 
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