OT- Exciting times coming up

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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

OT- Exciting times coming up

Post by Ozchrissy » October 9th, 2018, 10:53 pm

Hi all, well you all know I am involved in what is called over here Consumer Representation. It is becoming quite powerful over here at the moment. Every bit of planning and inquiry into our Hospital and medical systems have to have a consumer representative on it. Now some of these reps are now making it a profession, but really do not have the direct knowledge of being a patient. However, I am also in the run for these opportunities as well. As you all know, I do not hold back on how I really feel, and if I see an issue, I am not afraid to bring it up.

WELL, I have now been invited to attend a round table conference on the 30th of October, This is a NATIONAL, conference on the Action Plan for Heart and Stroke. When this is completed, it will be made into Australian Guidelines. It is looking at "prevention, care and support for people with Chronic Illness to optimise their quality of life." How exciting is this, to be involved in the future planning of how Australia can look after us.

Of course I have a couple of things I would love included, the first of course would be the establishment of peer support groups, either online or in groups, USING THIS FORUM AS A MODEL. I can personally supply evidence of how effective this is. Secondly, I would really love to see each individual patient treated individually when diagnosed with chronic illness. We have this already set up for people with disabilities and aged care. You are assessed and your individual needs met, and then the Government funds what is needed. This would improve the quality of life for so many. On a personal note, this has become extremely relevant for me as I am still traipsing in every week or as has happened again recently every day or second day for INR tests. I want to get a home monitoring kit, but the cost to do it myself over here is exorbitant. Maybe I may benefit if I can convince others of the idea of this individual plan.

I have already had contact by phone with the organizer of the conference, who is so pleasant and I think wants to completely look after me in the Big Smoke. She is from Canberra, the home of our Federal Government, so she is the big honcho in all this. I will have to take all my charm pills prior to the meeting, and do some 'lobbying' on our behalf. I will definitely have this opportunity, as she has me staying at the same hotel as her. May even get a free feed. dancee

So obviously I am excited but a bit daunted by this sudden opportunity. But I am sure that it will all be fine. I was invited by the people I have met at our State Heart Foundation, so if they think I am able to do it, then who am I to argue.

Must admit I think I am getting the super woman complex at the moment, but I know I will calm down by the 30th, and that is why I posted on here. I know my friends and colleagues on here will give me the reality check and of course offer me support, and even suggestions. I know the majority of us are from the US/Canada, but ongoing care is something we all are familiar with, and any suggestions that I can add to the list, would be greatly appreciated.

:big-hug: :big-hug: :big-hug: :big-hug:
“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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TruckerRon
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Re: OT- Exciting times coming up

Post by TruckerRon » October 9th, 2018, 11:48 pm

I'm sure than long before the 30th your head will return to its normal size.
lmao4dx
If I were doing it I'd be making lists of topics, printing out articles, and driving myself spare!
:big-hug:
BTW,
:congratulations:
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

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

Re: OT- Exciting times coming up

Post by Ozchrissy » October 10th, 2018, 12:58 am

Thank you Ron, that is something I will start straight away. At the moment my mind is going haywire, I suppose some could call it overload. lmao4dx A list and documentation to support it all would be ideal. Thank you my friend time to get my brain organized and gather a structured approach to all this. See I knew I had to ask advice from on here.

:big-hug: :big-hug:
“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
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Joined: February 9th, 2012, 5:09 pm

Re: OT- Exciting times coming up

Post by mykidsmom » October 10th, 2018, 8:42 am

Rons advice is dead on Chrissie.....So proud of you...your an amazing person and the ideal candidate for this..youve much to bring to the table....just dont exhausted yourself doing happy dances...

Love you.
I think.....Therefore I am.!!!!!

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ricatlga
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Joined: February 2nd, 2010, 8:57 am
Location: Atlanta, GA USA

Re: OT- Exciting times coming up

Post by ricatlga » October 10th, 2018, 9:08 am

This is absolutely wonderful Chrissie. I know you will be a stellar advocate.
Best Wishes.
Raymund
Replaced ICD 8/30/18 with Medtronic Visia AF SureScan MRI ICD
Ablation May 2012 - Sotalol discontinued in September
VF unknown cause 1/19/2010, Medtronic Secura-VR 1-22-10
Mitral valve repair Dec 2007

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

Re: OT- Exciting times coming up

Post by ROBO Pop » October 10th, 2018, 2:44 pm

Congratulations, we're very proud.

Now sit down, take some deep breaths, and pull yourself together. You are speaking on behalf of all the walking dead here.

Choose your battles carefully and show respect. We are behind you 100%, and expect you to represent us and those who are to come later.
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

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

Re: OT- Exciting times coming up

Post by Ozchrissy » October 10th, 2018, 4:27 pm

Thanks for the encouragement everyone. I have settled down, and busy making lists and also will try to get my ideas on one sheet of paper. Haven't had to do this for years, but it is slowly coming back. I realize I am very honoured to have this opportunity, so don't want to stuff it up.

I spoke to the guy at the State Heart Foundation and although he is not invited, he said that there will be heaps of big wigs there, so I will have the opportunity to speak to some people who really do have an influence in Public Policy. So I really want to be prepared and know what I want to put forward.
“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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4EverHopeful
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Joined: January 27th, 2012, 11:34 pm
Location: Knotts Island, NC USA

Re: OT- Exciting times coming up

Post by 4EverHopeful » October 10th, 2018, 9:43 pm

You go girl!!!!!!! dancee

What a nerve-racking-honor to receive! Chrissy you are smart and organized. Our health is the only thing that slows us down when an opportunity to excel comes along. Gather stuff together a little bit each day in piles, lots of separate piles organized by categories. When I read all that was before you, I had the same thought you stated, "overwhelming" but it's doable. Pick a couple of things that to you are of the highest priorities, focus on them till you are satisfied with all has been gathered. THEN focus on subsequent topics as a perk, benefit to submit or raise at the event. Just your personal experiences alone could add so much to the topics at hand and be extremely helpful so I have no doubt you are going to be an awesome ambassador for all of us here ICD/CRT land!
Phyllis

God's prescription for the heart:
O LORD, You have examined my heart and know everything about me. You know when I sit
down or stand up. You know my every thought when far away. You chart the path ahead of me
and tell me where to stop and rest. Every moment You know where I am.
Psalm 139:1-3

Non-ischemic DCM 09/11
PVCs, LBBB, leaky mitral valve
St Judes CRT-D (Bubba) 02/12; (Bubba II) 09/17
EF 20% 09/11; 25% 07/12; 35% 02/16
Failed PVC Ablation 11/12
Coreg, Zestril, Asprin, Aldactone, Lasix, Zocor, Levothroid
viewtopic.php?p=87649#p87649

Leedur
Posts: 268
Joined: May 24th, 2015, 10:25 pm

Re: OT- Exciting times coming up

Post by Leedur » October 11th, 2018, 9:13 pm

Chrissy First...Congratulations. With all your health battle background, I doubt anyone else would make a better representative. Don't know about you but when I've something exciting to look forward to, it just seems to distract from or diminish some of the daily worries, pains, etc. Look forward to your progress report.

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Ozchrissy
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Location: Australian

Re: OT- Exciting times coming up

Post by Ozchrissy » October 12th, 2018, 6:42 am

Thanks Leedur, yes it has made a big difference. Now that I have settled down I am really doing my research. Even had a talk with my GP today and he came up with some great suggestions that would be obtainable. Along the line of what I have already mentioned, and he does the GP Chronic Illness plans almost daily over here, and what he suggested would just be an extension of what is already in place. So there is a good chance that this will go over well. Seems like I will have some good ideas by the 30th.
“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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