The future of the site

Moderators: Suzanne, ~guin, Moderators

User avatar
freckles1880
Moderator
Posts: 8664
Joined: April 18th, 2009, 7:19 pm
Location: Broomfield, Colorado

Re: The future of the site

Post by freckles1880 » December 16th, 2013, 7:53 am

AlexK wrote: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.
I did PM AlexK back. The moderators have found a couple of people who have started looking though the files. It took several days to find out where everything (the files and databases) were. Now these assignments are there to try to get to the next step. Once we understand everything we have we will need to assign the duties so this issue won't happen again. We are finding it does take time and we all have to be patient.

We, the moderators, have not changed our goals to keep us up and running and getting more members on board.

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.

User avatar
Helen
Senior Member
Posts: 1929
Joined: August 26th, 2005, 7:27 pm
Location: Franklin Square L.I., New York

Re: The future of the site

Post by Helen » December 17th, 2013, 9:53 pm

Freckles,
I just wanted to say thank you. You have been a great gift as a moderator to our group and I would like to tell you how much I appreciate all your work for us. It is people like you and the other moderators who have kept us going and who I am sure will keep us going on in the future.

Originally the Zap group and then this group were important to me from the very beginning of my bionic life. I never even heard of an ICD until I had one inside of me and I learned how to live comfortably from the members who came before me. I was lucky to find a support the week I came out of the hospital. Every question I had that worried me was answered kindly and rapidly and took away my fears, my tensions, etc.

Thanks to all of you and to those like Eve, Allen, my special friends and those who were here for me and are now gone on to be with the other angels. I appreciate all of you who show love and care for each other. Love, Helen
Snowflakes are one of nature's most fragile things, but just look what they can do when they stick together.

dick
Posts: 328
Joined: September 4th, 2013, 11:49 am

Re: The future of the site

Post by dick » December 27th, 2013, 12:58 pm

Freckles1880 wrote:The moderators have found a couple of people who have started looking though the files. It took several days to find out where everything (the files and databases) were. Now these assignments are there to try to get to the next step.
Do these other people have names or just an alias? What are the assignments? What is the next step? Who is steering the ship? What is the big plan and what is the immediate plan? When? Who else has the passwords or is that strictly NTK? Just what have you found so far? Thank you. Many would probably like to know these things.

User avatar
Eric
Posts: 1412
Joined: May 1st, 2011, 7:39 pm
Location: Utah

Re: The future of the site

Post by Eric » December 27th, 2013, 1:50 pm

I believe the person who is working on the site has gotten in and is waiting for Bob to get back from Hawaii. (I am not privy to those conversations) At that time, we should be much closer, if not there, to having admin's to this site that can admit new people. There will be a learning curve on managing the site, but I believe we are close.
There is always delays on waiting for information from some of the providers, but a lot of work has been done behind the scenes to get things up and running.
I am sure after the new year, that most everything will be back to normal.
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

User avatar
ROBO Pop
Posts: 4448
Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: The future of the site

Post by ROBO Pop » December 27th, 2013, 3:02 pm

Well it would be good to get newbies on board, us old timers are getting tired of playing with ourselves...just sayin
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

User avatar
mrag
Posts: 4378
Joined: February 10th, 2009, 4:56 pm
Location: The Former Mushroom Capital of World when America was great

Re: The future of the site

Post by mrag » December 27th, 2013, 4:35 pm

Hi Eric, I think Dick asked some valid questions deserving an answer and not just a 'trust us' when the last new person to have 'joined' was on October 6. What specifically might be the qualifications to run, maintain and manage this site? Is there a vision and if so, who has it? People are patching holes that are quite obvious, but are they doing anything to avoid what is not so so obvious (a situation that was so clearly avoidable as to be almost laughable). A TruckerRon friend once used the term, "unknown unknowns." So?

ROBO wrote:us old timers are getting tired of playing with ourselves...just sayin
Are you claiming that's something new for you? ;-)
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

User avatar
~guin
Moderator
Posts: 2685
Joined: September 7th, 2005, 11:23 pm
Location: California Bay Area

Re: The future of the site

Post by ~guin » December 27th, 2013, 4:46 pm

We are all steering the ship but it is on auto pilot at the moment....
I hear ya Robot pop I'd like to get new people in hear too so we can have new questions and answers!
The outside person is "Paul" not sure a name really helps... But our goal is to get the keys to the kingdom, and proceed onward.... Visions may come later, but the goals are still the same!!!!

Thank you to all for your support and patience.
~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

User avatar
mrag
Posts: 4378
Joined: February 10th, 2009, 4:56 pm
Location: The Former Mushroom Capital of World when America was great

Re: The future of the site

Post by mrag » December 27th, 2013, 4:55 pm

Nothing personal, but that is not an answer.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

User avatar
~guin
Moderator
Posts: 2685
Joined: September 7th, 2005, 11:23 pm
Location: California Bay Area

Re: The future of the site

Post by ~guin » December 27th, 2013, 5:13 pm

What answers are you looking for???? Cuz them is all we got! We are doing our best to keep things running and paid for as they have been before. And yes this all takes a lot of VOLUNTEER time and money.... I am familiar with a thankless job as I worked in an elected position for 10 years.

Why can't we just continue on in the fashion Mark work like us too? Can we all play nicely in the sand box? No throwing sand! nononono
~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

User avatar
mykidsmom
Posts: 3610
Joined: February 9th, 2012, 5:09 pm

Re: The future of the site

Post by mykidsmom » December 27th, 2013, 5:40 pm

Yer all grounded.........

we already know the site is safe and will continue.....and theres stuff to be sorted out to allow new memberships to proceed...

Meanwhile any prospective members can lurk and read the site.....

if any new members have any questions.......email me at home...heres my home address......and i will post them here on a new thread for each question......

Helenbaneham@rogers.com


Now its xmas......be nice....and patient....remember patience is a virtue.....
I think.....Therefore I am.!!!!!

User avatar
TruckerRon
Moderator
Posts: 3123
Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: The future of the site

Post by TruckerRon » December 27th, 2013, 8:54 pm

~guin wrote:...But our goal is to get the keys to the kingdom, and proceed onward.... Visions may come later, but the goals are still the same!!!!
The last I heard, St Peter had those keys!

safetocomeout
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

User avatar
~guin
Moderator
Posts: 2685
Joined: September 7th, 2005, 11:23 pm
Location: California Bay Area

Re: The future of the site

Post by ~guin » December 27th, 2013, 9:45 pm

Thanks Ron - in this case we are hoping St Paul has the keys and duplicates can be made!!!
~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

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 27th, 2013, 11:16 pm

mykidsmom wrote:Yer all grounded.........
:corner:


Thank you Guin, I have always admired this site and how well designed it is and until this all came up I had no idea how it was being run and PAID for. Thanks to all of those who have VOLUNTEERED their time to keep this working. I understand the concern about keeping it going. Let's please try to be patient
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

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

Re: The future of the site

Post by kai1211 » December 29th, 2013, 7:55 am

Is there anything I can do to help the site If so plz pm me. Sorry for the double post just want to make sure the right people see it.
Image
Image
Image
Image
Image
Check out my blog about my life http://bens-blog.tk/

User avatar
xislandman2004
Posts: 1196
Joined: May 24th, 2008, 7:17 pm
Location: Homosassa, Florida

Re: The future of the site

Post by xislandman2004 » December 29th, 2013, 9:23 am

I think all is quite well and thank those who are doing what is necessary. I can help if ever needed.
--dennis

Hypertrophic Cardiomyopathy - Heart failure
First ICD Medtronic 5/16/08
Pulmonary Vein Ablation 9/1/10
Second ICD Medtronic 5/8/12
AV Node ablation 12/23/13
Medtronic Viva CRT-D 4/14/14
Mitral valve replacement 7/14/15
plural and pericardia fluids (2.5 liters) drained 2/16


Coreg 12.5mg x 3


Coumadin 4.0 mg qd
Lasix 40mg x 2
Potassium 10 megs per 20 mg Lasix




Then the lie passed into history and became truth. - George Orwell 1984

Post Reply