New News

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

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Ozchrissy
Posts: 7361
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: New News

Post by Ozchrissy » January 13th, 2019, 5:45 pm

I am being released today. Have got every service available to me from meds to cleaning. Eeverything is on track for a holiday and even a motorised scooter. Look i am going to make the most of it now so hopefully be beating the odds again. Have even worked out recipies for vivitamizedd foodd, lobster pate, duck etc. And lots of smoothies. I will be the real gourmet.

I cant express how much your support means to me but i can guarantee no matter how long i get it will be a great time.
“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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Jim and Sparky
Posts: 824
Joined: April 11th, 2011, 2:28 pm
Location: Wichita Kansas

Re: New News

Post by Jim and Sparky » January 13th, 2019, 7:30 pm

Chrissy,
Been away for a bit and saw this and really didn’t know how to respond. Just know I have the utmost admiration for your courage and ability to keep going with a positive outlook in spite of some of the issues you have been through. Not sure what else to say other than you have all my support from the other side of the globe.
Jim
MI 1/21/11; SCA's 2/3/11 and 2/4/11
I have a Boston Scientific Teligen ICD and a Boston Scientific Promus stent,
I guess my cardiologist is sort of a BS kind of guy.

Two rules to live by:
1) Don't sweat the small stuff!
2) It's all small stuff!


My Intro is on this page: http://www.icdsupportgroup.org/board/vi ... 917#p74917

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ROBO Pop
Posts: 4722
Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: New News

Post by ROBO Pop » January 13th, 2019, 9:05 pm

Alright, ENOUGH, time out. A decrepit old man, me, has to schlep my frickin golf clubs around on foot and you got a motorized scooter, WTF there is no justice in the world. And to think I was worried about you, Geez.

I do want to say two things...
First I am proud of you ! And I sincerely mean that.
Second get off your ...scooter and get busy on that painting woman. And I sincerely mean that too !!!!
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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Jean
Posts: 567
Joined: February 5th, 2008, 12:15 am
Location: Michigan
Contact:

Re: New News

Post by Jean » January 14th, 2019, 12:09 am

Oh Chrissy you are an amazing woman. You know how much we love you. I can't believe I'm going to say I agree with Robo golf2 get started on that painting :big-hug:
Jean

Cardiomyothapy,LBBB, CHF, Diabetes
Cognis CRT-D implanted May 11,2010

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Ozchrissy
Posts: 7361
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: New News

Post by Ozchrissy » January 14th, 2019, 6:08 am

I am home and really happy to be here. Should not be so many spelling errors as I am on my laptop, not that silly little IPad thingy. That is good for my kindle books, but as for the rest of it I need this.

Thank you all so much, I love you all so much. I really haven't told too many others yet as I am not sure of how the reactions will be. BUT I KNEW I WOULD BE FINE ON HERE. That will happen when I am ready, of course my nearest and dearest know, but there are still a lot of people I do have to tell personally.

I put in my supermarket order after talking to the dietitian, and boy, there are a lot of soft stuff that sounds delicious. I have to forget the heart diet, a smoothie has to have cream, protein powder or sustagen added, milk, icecream etc. added oh and I nearly forgot strawberries or mango or banana. I think I could get used to this, and as for protein, pate at the moment, and creamy cheese is the go. Boy I will go from underweight to obese quickly. Soups have to be smooth, but as for tomato and pumpkin etc. I have been told to put in sour or real cream. I will be a good girl and do as I am told. wavhi wavhi

The main reason for the soft foods is that there is a risk that the stent they inserted at the connection of my stomach to the small bowel can get blocked. If that happens, it is back in lock up and there is a huge possibility that they probably won't be able to fix it. So no lumpy stuff is to be consumed.
“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
Moderator
Posts: 3301
Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: New News

Post by TruckerRon » January 14th, 2019, 10:50 am

If I were on that diet I'd be going for the richest, creamiest milkshakes I could make. And hot fudge sundaes, though I'd have to give the cherry away. I'd regain all the weight I lost last year and put on much, much more in no time.
punisher
And die in a diabetic coma.
:-(
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

blueraider
Posts: 58
Joined: May 20th, 2013, 6:15 pm

Re: New News

Post by blueraider » January 15th, 2019, 8:35 am

Christy:

Hugs, prayer, comfort, and love being sent your way. You’ve always always been an encourager and I feel at a loss of how to encourage you. I pray for better days. I’m so glad your family is there. That’s so helpful. Continue strong friend!

garya
Posts: 591
Joined: September 10th, 2010, 9:04 pm

Re: New News

Post by garya » January 15th, 2019, 11:18 am

Such sad and unfair news to read about. I trust they are keeping you quite comfortable through all this. All the best.

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Melissa
Posts: 264
Joined: November 8th, 2010, 7:24 pm
Contact:

Re: New News

Post by Melissa » January 16th, 2019, 6:23 pm

I am at a loss for the right words......Chrissy, you are in my thoughts and prayers. This is truly not want I wanted to hear. :big-hug:
Melissa - dx cardiomyopathy in 2004 due to childhood chemotherapy; Boston Scientific CRT-D implanted 8/10, meds: Toprol XL 100mg/day, aldactone 25mg/day. Second ICD implanted 3/18, also Boston Scientific CRT-D

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LAURIESHILL
Posts: 209
Joined: December 18th, 2010, 1:35 pm
Location: California

Re: New News

Post by LAURIESHILL » January 17th, 2019, 12:24 pm

I am so sorry to hear this Chrissy. I only check in once in a while these days, but in the beginning of my wired journey you were such a wonderful help to me! I want you to know that your support (and many others on here) was imperative to my well being and how well I'm doing now. You had a huge impact on me! Thank you for all that you have done for everyone here and I will be praying for you! consolsmile

Laurie
"In the end, it is not the years in your life that count, but the life in your years" - Abraham Lincoln

St. Jude Unify CRT-D/RA & RV leads 12/29/2010
LV Lead 01/19/2011
60/179/200 paced 100%
LBBB/Class III Heart Failure/Idiopathic Cardiomyopathy/EF 30%


My Introduction: http://www.icdsupportgroup.org/board/vi ... &start=675

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Ozchrissy
Posts: 7361
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: New News

Post by Ozchrissy » January 17th, 2019, 8:17 pm

Oh my goodness, I need to buy a Helmet like Robbo's, not to protect my head, but to stop it from swelling too much. I am a talker and I can't help myself. If I can contribute, I will and unfortunately sometimes I really cannot lie. My cup is always half full, and that is how I have always been. I have received much more support from this forum and my friends on here, I am very lucky to have found this site. An example 'of this is that I have been on video chat with Helen for the past hour, and how good do I feel after contact with her. She really is a living angel.

I have had a big wake up call over the last couple of days. We are in the middle of a heat wave over here, Temperatures in the 100s F. I am in air conditioning but unfortunately I had to go out the last two days, my daughter Lauren took me, air con car of course, but just the time outside the car for a short period and I was falling down. And yesterday had to visit my Cardiologist, and the same happened. I am not feeling the heat as you normally would, but I am getting the pass out feeling of heat exhaustion without the normal sensations. Needless to say I virtually now have a water glass to my lips continually.

I saw the cardiologist and I must have looked like SHIT as he bought up the subject of turning off my device, COMPLETELY or what functions I wanted. But he was willing to do it yesterday. Obviously it is too early for me, and unlike others, I am not ready yet. Also it will be a joint decision with Lauren. I want to wait until I hit the hospice or hospital before I take that step. Today I feel fine, am cool and coping well. Must admit though it gave me a reality check when he offered to turn it off there and then, but in a way has made me more determined to be very careful.

I am about to make a smoothy, fresh strawberries, strawberry jam, icecream, cream, and milk and powdered whey protein. I think I will cope with that and it is something I even have printed out by the dietitian on the handouts they gave me. It is a hard life.
“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: 4058
Joined: February 9th, 2012, 5:09 pm

Re: New News

Post by mykidsmom » January 18th, 2019, 11:49 am

Chrissie you have the perfect attitude to see you thro all the shit life dumps on you...the cup having to be always half full is an enviable attitude to have.......and know what...you LOOK amazing...

So i went to see Dr Kidney today.....and came out with amazing results.....my kidney failure is cured hahaha...seriously...hes in shock cos he was gearing up the dialysis machines and didnt listen when i kept saying...its autoimmune when the autoimmune clears up so will kidney issues.....and i told him....ok ya know what.....kidney, heart, blood, its all immaterial the only way you can be totally certain im a gonner is to dump a sku of bricks on me from a very high building...drs can say what they like...but i wouldnt bet the farm on their opinions..my gut is always more on the correct side....and so is yours chrissie....you do what you feel is right for you as far as the ICD is concerned...i was surprised though to hear he offered to switch it off so soon...what a dope...

this smoothie sounds awesome and thank heavens for the fantastic medical coverage you guys have.......did you order the bright brilliant red scooter with all the bells and whistles....and a loud horn?:?????

Love ya
I think.....Therefore I am.!!!!!

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Ozchrissy
Posts: 7361
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: New News

Post by Ozchrissy » January 21st, 2019, 7:08 pm

so relieved that your Kidneys are ok. You would think these specialists realize the effects of Lupus on your body by now, but hey, at least they have you as their educator so they may become better doctors.

I haven't heard from the possible scooter organizers yet, that is Pallative Care. So am having to use my legs and walker if I need it at the moment. I sort of find that a bit reassuring at the moment, because I know the hard conversations will come with their visits, so at the moment I am having home help and other things orgnized by our local council. Trouble is I have the assessment tomorrow and I have to tidy up the house a bit before then, like TODAY. I am not really too bad, but I am untidy and messy, it wouldn't take me long, but it is rounding up the energy to do it.

I had a heart turn this morning, not the jesus jolt, but I know I had an intervention. Luckily I didn't agree with the Cardiologist, I could have been sitting here in my recliner waiting for someone to find me. I am fine now, our little angels really do their jobs.

My biggest issue at the moment is my memory. I have to write everything down at the moment at the time, otherwise I forget it completely, and I am stuffed.
“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: 4058
Joined: February 9th, 2012, 5:09 pm

Re: New News

Post by mykidsmom » January 22nd, 2019, 2:50 am

Im glad you didnt listen to him either chrissie...you know your body...and your gut...listen...dont bother tidying up for god sakes..theyre coming to assess your needs.....a beautiful clean dust free house is going to convince them you need less help for god sakes......how are the smoothies going ...have you seen any improvements because im sure your getting more nutrients from the ones your whipping up at home...maybe the stuff you got was stronger so is there a less potent version or strain you could have....im convinced the stuff i have isnt strong enough....i got higher on that Gabapentin that i ever did on anything else..

did i sent you the listing for that new netflicks show thats amazing???
I think.....Therefore I am.!!!!!

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ROBO Pop
Posts: 4722
Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: New News

Post by ROBO Pop » January 22nd, 2019, 11:36 am

You want to stress, the Neptune Society keeps offering to cremate me, and they even offered a discount if I act immediately. Don't worry about the Doctor offering to shut your device down, well unless of course he's talking about your vibrator or worse asks about your golf clubs.

Glad to see you are hanging tough...again
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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