• 13 replies
  • 11 followings
Heartfe6878, April 27,  2018  11:46am EST

Current topic on posting on site

Life is about change......But the tremendous change that has happened on this site is extremely difficult to use and follow . I believe that the people who have posted recently have a very valid point and this needs to be adressed and fixed. I am saddened to see that this support network has become such a source of stress to all the people participating by useing it. It is simply what works sometimes does not need to be changed....The community is a broad spectrum of ages.. I still beliee that this needs to be simplified for all users abilities........

  • Jeanamo815
    Jeanamo815, April 27,  2018  1:25pm EST

    Heartfe6878....you are vebalizing once again the same issue that many of our members are concerned about.  Although a lot of work has gone into developing this new website (many thanks to Katie who has tried so hard), it still needs work to simplify it so that all our members...young and old (and inbetween)....computer savvy and computer challenged....can use it with ease.  A lot of us have come to depend on this site and community for information and support.  In this case, simplifying it seems to be the best option.  I know we all must adjust to "change"...but the whole impact and purpose of this forum will be lost if the change affects participation by its members.

    So many members have expressed concerns that there are still undeniably some changes to a simpler format needed in order for it to "work" as intended.

    Bet wishes,


    (My A-Fib Experience Community Leader)

  • Heartfe6878
    Heartfe6878, April 27,  2018  2:35pm EST

    Thank you for your reply....it is appreciated...Afibrillation, Aflutter etc. are all isolating conditions ....The computer is a connection to others throughout the world who are experiencing the same kind of experiences .They have ideas ,solutions and support for  a difficult and complex health condition.People who do not have this condition have difficulty understanding  about afib. . This a wonderful service from the American Heart association to allow people to come together to be of support to each other... 

    I personally watch myself carefully about Stress. Stress is a factor in triggering off my afib...I try to find the Ease in life....This helps me personally...Thus I mention that it is stressfull to have so many many many problems with the site. This is not a personal condemnation of any person. But just being real and stateing from where I am comeing from...

  • Patio
    Patio, April 27,  2018  3:16pm EST

    I have made my case before, and tried to be humorous or patient. It is clear, we are not to be listened to. Small things that would make this helpful like a thumbs up for those who view but have no real comment.   My daily digest still doesn’t show uo. I have no idea how to just get to the dialogue people are chatting on.  The list is amazing....and so many others have carefully outlined the issues. Just look at the scarce comments to many topics. We are drifting into a less than active help site. I am looking for another site....anyone have any suggestions.?

  • TR
    TR, April 28,  2018  6:20am EST

    First, the first person I blame is myself for not not being able to navigate and understand this new site. I used to spend about thirty minutes reading and replying to posts on the old site, but ever since the change my enthusiasm has waned to the point where I spend about five minutes per day here. This morning, I read posts about people expressing their sorrow to Melanie for the loss of her sister, yet I cannot find the original post stating that this had happened. Then I read a post by Spencer about the medical records and was going to reply, but could not find a reply button. This was all so simple before we made this change, and I still rack my feeble brain trying to figure out one thing about the new site that is better than what we had.The last thing I like is to be a complainer, and I appreciate all the work that has gone into the new site. I readily accept blame for for not digging into this and figuring it out, because this site has been a very valuable tool for learning and appreciating what we are all going through, but I I just wish we could return to the simplicity that we once had.Again, it's my fault, but I just don't like this site anymore.


  • Lalabuddy
    Lalabuddy, April 28,  2018  7:53am EST

    This forum used to be a huge support for so many of us. Now, for me at least, it has just become too cumbersome and complicated to maneuver. I no longer recommend it to others. I feel like I've lost a friend.

  • AHAASAKatie
    AHAASAKatie, April 28,  2018  7:55am EST

    Good morning all, 

    I am so sorry that navigating the site continues to be a source of frustration. I would like to offer all of you, truly anyone who continues to have issues with navigation, the opportunity to talk with me one-on-one to identify the source of the confusion and get you on track. Please email me at SupportNetwork@heart.org and we set up a time next week that works for you. 

    Here is the link to Mellanie's post so you can read the original post and respond. 

    Thank you, Katie 



  • AHAASAKatie
    AHAASAKatie, April 28,  2018  7:58am EST

    Patio- I reviewed your notification selections and at this time, you have selected instant notifications of activity on the site and a weekly email digest. However, for the email digest, there is a menu of items that you can choose to select. If you access the Notifications tab you can update this information.  OR- if you prefer, let me know what you would like to have included in the digest I can set this up for you. Also, do you prefer to have a daily or weekly digest?

    As always, if a one-on-one conversation would help clear this issue, please email me at SupportNetwork@heart.org and we can set up a time to talk this coming week. 

    Best Katie 

  • Lalabuddy
    Lalabuddy, April 28,  2018  8:09am EST


    You are so kind to offer help to us all. I know you are as frustrated as many of us.

    I am very computer savy so I am not confused. This site is a nightmare. The fact that it used to be so very easy and user friendly is what makes me sad. It reached so many people who needed support. We got to know and learned from each other. People were quick to post helpful information and advice. We were a community.  

    This is such a great community of folks with common issues. I sure hope something can be done quickly to remedy this situation or I fear this site will become extinct. That would be a real tragedy.

  • AHAASAKatie
    AHAASAKatie, April 28,  2018  9:03am EST

    Lalabuddy, thank you for the kind words. I am happy to talk with any community member who wants a one-on-one conversation about how to use the updated platform. Best Katie

  • MellanieSAF
    MellanieSAF, April 28,  2018  10:29am EST

    Patio, you said: "I have made my case before, and tried to be humorous or patient. It is clear, we are not to be listened to. Small things that would make this helpful like a thumbs up for those who view but have no real comment. "

    I am so sorry it feels like you are not being listened to, but that is not the case at all. We hear everything, and Katie collects it all up and puts in tickets for it to be done. If only I could wave a magic wand and have the changes instantly appear, that would be heavenly, but I don't have a magic wand!  

    Information Technology (IT) takes so many steps, with multiple organizations involved. Katie spends many hours every day wrangling all the different players, getting agreement to what may seem like minor changes but are not. On every call, multiple times per week, we work through details at a level of minutiae that you cannot even imagine defining exactly how each change will look and then how it can be programmed (and what impact it will have to the whole Support Network platform on which we reside). There are aha's for me every time we meet, and I spent many years in IT. We've been working through levels of detail for the digest changes that have been a total shock. Nothing is as easy as it would seem, which is why I keep asking for patience. 

    Please give us time to make the changes that are needed. I don't know how long it will take for the developers to address whether a "like" feature (which was my initial request) is possible to add because it is a nice to have feature and we are working on crucial items such as the Daily and Weekly Digests (sequence and content). 


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