The future of the site

Moderators: Suzanne, ~guin, Moderators

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beachjay
Posts: 1205
Joined: September 15th, 2007, 3:44 pm
Location: Texas
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Re: The future of the site

Post by beachjay » December 4th, 2013, 1:28 pm

Thanks to all the people who know what they are doing and are keeping the site going, I really appreciate them all.
Jacky in Texas

Time you enjoy wasting is not wasted time.....Bertrand Russell

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Ozchrissy
Posts: 7145
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: The future of the site

Post by Ozchrissy » December 4th, 2013, 6:05 pm

Oh thank you Freckles for letting us know what is going on. As this is an important resource for many of us, the term 'ignorance is bliss' really doesn't apply in my case.

Thank you for all your efforts. Much appreciated.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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~guin
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Joined: September 7th, 2005, 11:23 pm
Location: California Bay Area

Re: The future of the site

Post by ~guin » December 7th, 2013, 11:25 am

Thanks Helen -- you are awesome and one smart cookie! 80 years old on my Daddy's Birthday this year... My Daddy would have been 89, December 21.

You still have your memory... I am in touch with Shelby and I have exhausted her knowledge, I did send an email to Paul Walker just after Mark died, and no response, I haven't heard from him in years.... We are having trouble getting Marks knowledge - passwords etc, so that the moderators can continue the site. I promised Mark and Kath that I would continue the site as it had been run, as you remember, I was moderator of the last site -- Zaplife.org.... before this site was started.

There is no conspiracies here at all -- just great kind folks who want this to continue on... We are working hard and doing our best to continue this site...
~guinImage :hrt :hrt :hrt :hrt :hrt
http://icdusergroup.org
Familial Dilated Cardiomyopathy
Sub Pectoral ICD Implant 9/1999
Medtronic Dual Chamber Evera XT DR
Replaced: 3/2000, 3/2006 & 9/2013

'Folks can be as happy as they make up their minds to be.' - Abraham Lincoln

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mykidsmom
Posts: 3464
Joined: February 9th, 2012, 5:09 pm

Re: The future of the site

Post by mykidsmom » December 7th, 2013, 1:31 pm

The software is a free software so doesnt have customer service or helpdesk as ive known other softwares to have..

but i did find this and im sure youd be able to get "walked Thro" resetting the passwords??

hope it helps..

https://www.phpbb.com/support/?sid=c906 ... 4fde7508a8


now Helen...if you think your memory is bad.....i dont know what it must have been like before lol.......i think right now its nothing short of amazing..... smileyquoteunquote smileyquoteunquote smileyquoteunquote
I think.....Therefore I am.!!!!!

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~guin
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Location: California Bay Area

Re: The future of the site

Post by ~guin » December 7th, 2013, 1:52 pm

Thanks for your thoughts. It has been tried, and they have not been helpful!
I contacted them early on, Bob is now back in touch. So far not getting what we need.
This is a team effort but we are feeling like we need a village

Let's keep positive thoughts and thinking! We will get it all resolved, it is just going to take time.
~guinImage :hrt :hrt :hrt :hrt :hrt
http://icdusergroup.org
Familial Dilated Cardiomyopathy
Sub Pectoral ICD Implant 9/1999
Medtronic Dual Chamber Evera XT DR
Replaced: 3/2000, 3/2006 & 9/2013

'Folks can be as happy as they make up their minds to be.' - Abraham Lincoln

Ann Marie
Posts: 549
Joined: November 9th, 2009, 8:55 am
Location: New Jersey

Re: The future of the site

Post by Ann Marie » December 7th, 2013, 3:25 pm

Wow, all of you working so hard to keep this site going. It is really inspirational. We are truly a community. Thank you to all the moderators who are plugging away at this. I'm sure it is taking a bunch of time and you all have your lives to live. But plug away you do to keep this site functioning and speaking for myself, I really appreciate it. I know I don't post often but this place has been very special to me. I wish there was a mobile app as I use my phone too much. Thank you thank you thank you. :hugg:
If you follow all the rules, you miss all the fun[background=][/background]

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Eric
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Joined: May 1st, 2011, 7:39 pm
Location: Utah

Re: The future of the site

Post by Eric » December 7th, 2013, 3:36 pm

All -

I have been in touch with Bob too and am trying to help, be patient as the help people are really slow to respond.
From my conversations with Bob and Suzanne, I know everyone is trying their hardest, but when you have to rely on people outside of this site to get answers, it takes time.

Thanks,
Eric [bot]

Idiopathic CHF/ EF currently @ 53%, Low point 26%
St Jude ICD implanted 6/2008 Device changed 6/2009
1 Shock (innappropriate), ICD reprogramed 6/2010
Lead revision 3/2011 due to fractured lead
53 shock storm 4/21/2011 (Inappropriate)
ICD turned off May 20111 through 8/16/2011
Lead revision 8/16/2011
VT episodes starting in August 2012
ICD Changeout 2/25/2013 St. Jude Inspire Assura
Too many meds to count
Life is too short, live in the moment and make the best of it :)
Intro is here:http://www.icdsupportgroup.org/board/vi ... 271#p75271

Mary Kay
Posts: 1475
Joined: September 23rd, 2011, 10:57 am
Location: Oak View, CA

Re: The future of the site

Post by Mary Kay » December 7th, 2013, 4:02 pm

Oh boy, have I been out of the loop! Just want to add my great appreciation to all involved in keeping the site going. Bob you are amazing and Guin, thank you for your commitment. And thank you to all the techy members for helping out.
Helen, your memory seems fine to me. You are the sites historian. From your photo you look a little like the woman at my church who is almost 90 and is our church's historian. Hope my memory is even close to that good.
I have been impressed with the very well managed complexity of this site from day one. I used to belong to a support group for another issue and it was awful.
I wish I was the kind of person who could run a site like this because the other topic desperately needs one.
CHF, Cardiomyopathy and LBBB
EF 20%
St. Jude Bi Vent ICD CRT implanted September 9, 2011
7 shock storm inappropriate due to dislodged lead
damaged lead removed and replaced Sept 26, 2011
EF improved to 50% in December 2012
Carvedilol 12.5 mg 2x
Ramipril 5 mg 2x

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Ozchrissy
Posts: 7145
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: The future of the site

Post by Ozchrissy » December 7th, 2013, 6:32 pm

Thank you our dear moderators for keeping us up to date. I think the frustrating part, on my behalf anyway, was not knowing what was going on. I realize that often it is hard working with others who are not involved in this site and that they often have other priorities too, so I do appreciate all the effort being made on our behalf. I am just a sticky beak and like to know what is happening. I am the same with my health care, which I must admit has been taught to me here, so I can only blame this site for my busy body attitude. :mutt:
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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mykidsmom
Posts: 3464
Joined: February 9th, 2012, 5:09 pm

Re: The future of the site

Post by mykidsmom » December 7th, 2013, 8:27 pm

chrissie dont change please...LOVE you exactly as you are :hugg: :hugg:

Quin/Bob....another suggestion is to download a free version of the software...and PLAY with it....you'll learn an immense amount by doing this....want me to try it for you?
I think.....Therefore I am.!!!!!

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freckles1880
Moderator
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Joined: April 18th, 2009, 7:19 pm
Location: Broomfield, Colorado

Re: The future of the site

Post by freckles1880 » December 8th, 2013, 8:29 am

mykidsmom wrote: Quin/Bob....another suggestion is to download a free version of the software...and PLAY with it....you'll learn an immense amount by doing this....want me to try it for you?
Good idea, I have a set on my computer. This software is not set up so one can just jump right in. There are a lot of internal links that need to be verified. This software really protects you and I, the users, and this is what we want. I don't want to mess up what we have. We have an expert we hope to start to work with this week.
Just hang in there please.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

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mykidsmom
Posts: 3464
Joined: February 9th, 2012, 5:09 pm

Re: The future of the site

Post by mykidsmom » December 8th, 2013, 9:21 am

freckles have every faith in your abilities...!!! way to go...its going to work out alright but just be a little pain in the bum occasionally on its way lol :hugg:
I think.....Therefore I am.!!!!!

Joseph
Posts: 85
Joined: November 14th, 2010, 6:53 pm

Re: The future of the site

Post by Joseph » December 9th, 2013, 8:28 pm

Thank you to all who moderate this site. We are a minority in the heart community, and
only learn from fellow device users. Keep up the good work - we need you and appreciate you.
Happy Holidays!

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AlexK
Posts: 1124
Joined: October 17th, 2007, 6:27 am

Re: The future of the site

Post by AlexK » December 15th, 2013, 7:26 pm

I sent freckles a PM. I've got a deep background with the software, and maintain various websites for various entities.

If nothing else I can provide hand-holding services, but you'll find the software is super straightforward.

Make sure someone other than one person has the admin passwords and it'll be fine. It'll all be fine. You'll see.
August 1, 2007, died; CPR restored
August 3, 2007 implant Medtronic Pacemaker/Defibrillator
Coreg and Atacand daily
"In the end, everything is just a gag," -- Charlie Chaplin

kai1211
Posts: 106
Joined: May 19th, 2013, 12:16 pm
Location: Texas, USA
Contact:

Re: The future of the site

Post by kai1211 » December 15th, 2013, 9:26 pm

I hope the best for the site I wish there was there was something I could do this place haves a awesome community and resource for meany people. :( :(
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Check out my blog about my life http://bens-blog.tk/

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