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CaringBridge.org? - Keeping friends/family updated.

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I am Darlene I had symptoms for at least 5 years that I now know were from HCM. My PCP didn't know why I was having symptoms. I changed doctors in 2014 for a "new perspective." After some misdiagnoses (high blood pressure, bronchitis, asthma) the new doctor sent me for an echo when she detected a heart murmur after several appointments with her. An echocardiogram in July 2014 showed I had HCM with obstruction. The cardiologist that my PCP referred me to wasn't experienced with HCM. After much frustration, I found a cardiologist with experience with HCM and am so glad I found him. I also see Dr. Thamilarasan at Cleveland Clinic. My obstruction is unusual in that it's my papillary muscle that's enlarged and causing the obstruction (which makes me cough A LOT!). My septum is only slightly enlarged. It was also discovered during the cardiac cath that I have a rare type of anomalous coronary artery. I always knew I was special on the inside. . . but not in this way. LOL!!!! Find out more about I am Darlene
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  • CaringBridge.org? - Keeping friends/family updated.

    I'm not sure which section to put this in. I guess here since it sort of relates to trips to HCM centers.

    I wanted to use TheStatus.com (as suggested by Cleveland Clinic) to keep my friends/family easily updated with my status without having to put too much time into it. When I went to set up my private web page through them, they said they were not accepting new accounts at this time.

    I was going to create an email list for my friends/family but someone suggested using CaringBridge.org. I'm reading the site now to learn more about it. So far I think it is very similar to TheStatus.com. Has anyone used CaringBridge? Is it easy to use? Do you recommend it? Any suggestions?
    At least 5 years of symptoms.
    07/24/14: Age 45, diagnosed with HCM w/ obstruction.
    09/30/14: Tested at Cleveland Clinic (Ohio).
    January 2015: Approved for surgery.
    03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

  • #2
    Re: CaringBridge.org? - Keeping friends/family updated.

    Strange the Status site is nor accepting new members. My old page ( my wife made it actually) is still there and accessible.

    I just took a look at CaringBridge.org and it looks to be much the same type of application. Free of charge and add free, supported by donations. Nice! I would try it. That kind of site was very helpful to us, friends and family. Good luck!!!
    Angus Campbell
    Golden Isles Region, Southeast Georgia, USA

    Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
    Myectomy Jan 9th 2014 at Cleveland Clinic
    Drs Lever and Smedira

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    • #3
      Re: CaringBridge.org? - Keeping friends/family updated.

      Not familar with this set up, but thought perhaps you have to be admitted to be able to start it? All else fails many post updates on this site (and it promotes awareness).
      Marc
      Diagnosed @ 48
      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
      AICD - Valentines Day '08, Spark Plug replaced 11/14
      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
      Quietly going insane . . .

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      • #4
        Re: CaringBridge.org? - Keeping friends/family updated.

        Thanks for the comments, guys.

        I got feedback from friends about caringbridge.org that was very positive so I set up a page late last night. I plan to use it to keep my family and friends updated all at the same time. I hope to post updates here on HCMA when I feel up to it because I know that I found similar posts by others very helpful to me. I'd like to pay it forward with the hope that my journey will help others with their surgery experiences.
        At least 5 years of symptoms.
        07/24/14: Age 45, diagnosed with HCM w/ obstruction.
        09/30/14: Tested at Cleveland Clinic (Ohio).
        January 2015: Approved for surgery.
        03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

        Comment


        • #5
          Re: CaringBridge.org? - Keeping friends/family updated.

          I guess everyone makes choices about how much or how little they are comfortable sharing...in my case I thought it through, and when I first got into a bad patch I started posting in rather substantial and technical detail on my personal Facebook page where I have roughly six hundred friends......I made a deliberate decision to go into significant detail about the steps in the process....shared thoughts through the testing process, five hospital admits, a renal biopsy, an attempt at an ablation and the myectomy including stuff like day after myectomy photos of me and the incision. The value of the awareness you can create is amazing. I must have gotten private messages from three dozen people asking about all kinds of stuff...most around my age early 50's that most didn't have heart trouble but many hadn't been to see a doctor in ten years.......a number did see someone and reported back that they were thankful they went because something was found. If you are looking for a way to give others the benefit of information, consider that everyone that has found this site has probably learned a whole bunch and has increased awareness....Facebook might be a good alternate choice.....I made a definite decision NOT to use Liinkedin where I have closer to 3,500 contacts most all of which are professionally related. Due to having professional licenses in half a dozen states [including all five of the largest ones] my personal information is public everywhere and I have just learned to live with it.

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          • #6
            Re: CaringBridge.org? - Keeping friends/family updated.

            Thanks Jordan for providing an entirely new perspective on this that I would never have entertained! Very Interesting! I am a very private person, but not because I am in "fear" of people having my information......Living any part of life in fear is not an option for me.
            I remain private for other reasons. So, your public approach would not be right for me personally....but I can see the value in it and indeed it might be the exact way for an HCMer to get the word out and stimulate discussion of heart health if it felt right to them.
            Good for you.
            After years of symptoms:
            Officially Diagnosed HOCM 2006
            Myectomy 3/11/13 at non-COE
            Extended Myectomy 7/23/14
            At Mayo with Dr. Joseph Dearani

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            • #7
              Re: CaringBridge.org? - Keeping friends/family updated.

              Originally posted by JillC View Post
              Thanks Jordan for providing an entirely new perspective on this that I would never have entertained! Very Interesting! I am a very private person, but not because I am in "fear" of people having my information......Living any part of life in fear is not an option for me.
              I remain private for other reasons. So, your public approach would not be right for me personally....but I can see the value in it and indeed it might be the exact way for an HCMer to get the word out and stimulate discussion of heart health if it felt right to them.
              Good for you.
              Thanks Jill...thought I would share a couple of examples off of my Facebook to let people see an example of what I shared:

              This is the Friday before surgery on Monday:

              Screen Shot 2015-03-02 at 1.36.23 PM.jpg

              This is one of the early posts when I was hospitalized to get some fluid off with IV diuretic:
              Screen Shot 2015-03-02 at 1.33.15 PM.jpg

              This one was from the point when it was clear that the myectomy was coming because they failed at the ablation:
              Screen Shot 2015-03-02 at 1.32.32 PM.jpg

              This was the day after I went back to work eight days after the procedure:

              Screen Shot 2015-03-02 at 1.30.41 PM.jpg

              I truly hope that this provides a few smiles for each of you that is going to have the surgery this week....keeping a sense of humor is invaluable as laughter is the best medicine that exists, and realizing that you aren't going through this alone truly makes all the difference in the world.

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              • #8
                Re: CaringBridge.org? - Keeping friends/family updated.

                Man, I wish my tablet would let me see your posts. I guess I'll try a different computer when I get a chance.

                Comment


                • #9
                  Re: CaringBridge.org? - Keeping friends/family updated.

                  My goal is to have one place to post to that will keep my family and friends updated on me. Not all of my friends use FB. I've used FB, phone calls, conversations in person, email and posting to specific forums that I've been members of for many years to keep people updated so far about my diagnosis and testing. I need to simplify things and have one place for everything that my friends and family can access. CaringBridge is working well so far. And it will be easy for my husband to update everyone when I am not able to. When I am back home, I may consider making it public but at this point, I prefer privacy for this very personal journey.

                  I will make the exception and post my journey to this group in the hope that it helps someone else. I'm not sure if I'll post as things go on or once I get home. I'm not big time into technology. I'm currently using a lap top and am not use to typing on this keyboard. It hurts my wrists. So I may wait to post my updates here.

                  However, if anyone wants to view my CaringBridge page, message me and I'll give you the link and password. I just don't want to post it publicly at this point. Different strokes for different folks. This one works for me.

                  By the way, for anyone that's looking for a place to share their medical information with family and friends, I am liking CaringBridge. Several friends have commented that they love the ease of using CaringBridge from their past experience with it. Two people (my mom and a good friend) aren't computer savvy enough to log on but I think they'll get the hang of it once someone shows them. It was easy to set up. It's basically a template and you plug in a few pieces of information. You can make posts to your "Journal" and people can comment or "like." There's also a "Guestbook" section where people can post. And a "Photo" section. And a "My Story" section where you can give the background information of what got you to the point of starting your page. I'm liking it and would recommend it to others looking for a way to easily get info to family and friends.

                  Almost forgot, you can invite someone (i.e. spouse, family member, close friend) to be "co-author" so that they can update your page with information when you are unable to do so yourself. There are also different privacy settings to choose from, I chose password protect but it can be more elaborate (a person has to sign up with their email address to view your page) or it can be less elaborate (open to the public). Chose what works for you and go with it.
                  Last edited by I am Darlene; 03-03-2015, 06:45 AM.
                  At least 5 years of symptoms.
                  07/24/14: Age 45, diagnosed with HCM w/ obstruction.
                  09/30/14: Tested at Cleveland Clinic (Ohio).
                  January 2015: Approved for surgery.
                  03/05/15: Pending myectomy & possible mitral valve replacement at Cleveland Clinic

                  Comment


                  • #10
                    Re: CaringBridge.org? - Keeping friends/family updated.

                    Darlene.....I think you have hit on some very important points...you have to be comfortable with what you share and know the people that are likely to see it. [By the way before I forget to say it yet again...best wishes for success and quick healing this week]. Everyone that knows me would tell you that I have a terminal case of technology and I am very open about my situation, to the point that I had no problems posting my actual test results on my FB page, including selfies while I still had the pipe down my throat in ICU and morning after pics of the incision and my hugely swollen face. IMO.....all of it is reality and part of my life......the people that know us...see and observe much more about us than they let onto or that we realize.

                    I remember when my father made the decision to terminate his own kidney dialysis and at a point before FB he wrote an email and sent it to wide group of family, friends and colleagues the day he made the decision.....continued to type his own emails for as long as he could, then dictated them for one of us to type, and then the day he passed he had written a final email that we posted.....the use of technology, social media, etc is an extension of who you are as a person. There is nothing magical about it....its merely an extension of the way that human beings have been communicating about their lives and the events that impact them for eternity. The difference is the reach and the ability to share with those at a distance. Perhaps its the way I am....about the only things I would consider to be private are of a financial nature...and perhaps mental health issues. The rest of it is out there anyway....sometimes people choose to live in denial or don't realize the extent that others are aware.......there was just an interesting article about a researcher that was able to locate multiple people, given a sample of their DNA, and the state they lived in, and one or two other basic facts by accessing publicly available DNA databases and other records.......the ability to hide who your are doesn't exist anymore. This article might give people some insight into the scope of what I am referring to http://www.thenewatlantis.com/public...-dna-databases.

                    I should be clear that I am not advocating one approach over another.....its personal choice. However, it is important to understand where the world has evolved to. I am just going to be 54 and in my view, the ability to use a computer to read/send email, do a Google search, has reached the same level as operating a light switch, the flush handle on the commode, boil water on the stove.....its a basic life skill that one can't survive in our world without. My grandmother was 90 when we first got her an iPad and after a couple of lessons...and realizing that if she wanted to see pictures of her grandkids she needed to learn how to us it.....poof she "got it".

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