New News

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

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johncm
Posts: 9
Joined: May 31st, 2018, 5:30 pm

Re: New News

Post by johncm » March 1st, 2019, 9:50 pm

I just read the sad news and wanted to add to all of the other comments regarding what a beautiful, selfless and shining light you are. Wherever your journey takes you, please know how much you have touched our lives. We should all strive for such a righteous life. God bless...
Diagnosis: Ventricular Fibrillation
St. Jude ICD implanted 9-8-2016
Zapped 9 AM 10-30-2016
Zapped 6 AM 10-31-2016. Sent to hospital
Sent home, but zapped 3 AM 11-4-2016
Heart Meds:
Carvedilol - 50 mg/day
Mexiletine - 500 mg/day
Zapped 5-21-2018. VT for 10 seconds
Mexiletine increased to 750 mg
Ablation: 12-4-2018
Mex reduced back to 500 mg/day.

InSync
Moderator
Posts: 1054
Joined: July 21st, 2012, 10:26 pm
Location: The Edge of America, SC

Re: New News

Post by InSync » March 3rd, 2019, 10:39 pm

Chrissy, I'm broken hearted for you, for Lauren, for us, for those who won't have an opportunity to know your kindness and your strength. You've made this world a better place for so many. You charted your own path and walked it well. I'm happy to know you. Grace and peace to you.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
St. Jude CRT-D 7/19
The beat goes on.....

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

Re: New News

Post by Ozchrissy » March 6th, 2019, 11:55 pm

WELL ALL, THE 3 MONTHS ARE UP

I have seen my major Surgeon, the one who did the procedure for my previous cancer and the stent for this one. He was horrified that I had been told 3 months, the only reason he knew about it was that I went 'NAH NAN NAH" at him, I am still here.

Apparently the young intern who told me the bad news was right out of line, (wouldn't want to be in his shoes when Andrew catches up with him) and the written report that I had to give to the Insurance Company was written because they want 3 months or under for terminal illness. So yes, I was given the 3 months, but it DOESN'T MEAN A THING. My cancer is still growing, as they can't do anything without killing me with the treatment, but there is no timeline. At the moment we are symptom treating and it really isn't that bad, I pop some extra pills, am weak, but heck, WHO ON HERE HASN'T DONE THIS. :big-hug: :big-hug:

I am still going pretty well, pain free and able to eat most stuff now. I had an incident on Sunday where I went to the ER with bad pain and a partial blockage. Turned out the Sustagen that I HATE coagulates by the time it reaches the stent and I am not to have it any more. Wait till I tell the Dietitian who has insisted I take the stuff 3 times a day and have 3 scoops with milk and anything else I want to put in it. It is now a NO NO as far as my surgeon is concerned. It always made me feel ill, so I was right to not take the stuff as often as she wanted me to.

Also, the surgeon does not want to see me for another 4 weeks. How good is that eh. Guess who danced out of the consultation room with a big smile on my face. The surgeon was a bit grumpy, but I think that was him getting ready to have a staff conference to make sure this doesn't happen to anyone else. He gave the lecture to the young Intern that did my initial paperwork and stuff who was in the room when I mentioned about the time frame, but she wasn't even involved. Wait till the end of session staff meeting. kick butt kick butt kick butt

So I still have Stomach Cancer, am still not receiving heavy duty treatment so the little buggars are probably having more babies in me, with no PAC MAN or Lightening Bolt to knock them out, but who knows how long they will take to get me. I don't know, the surgeon doesn't know, so I DON'T CARE.

BRING ON TODAY

Oh and thank you to everyone for your wonderful messages. I had to stop crying before I could post my message. TO SAY YOU ARE ALL OVERWHELMING IS AN UNDERSTATEMENT AND I KNOW EVERYONE ON HERE IS STRONG AND ABLE TO DO THE SAME THING AS I AM. I am not special, but I have special people around me who give me strength. We cannot do this stuff on our own, and we have friends and a support group on here who give us that special inner strength. ALWAYS
“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.

DebW
Moderator
Posts: 627
Joined: July 23rd, 2016, 6:23 pm

Re: New News

Post by DebW » March 7th, 2019, 8:22 am

Wow Chrissy, that is awesome news! I bet you were for sure doing the happy dance! Sending big hugs.
:big-hug: :big-hug: :big-hug:

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luvmydogs
Posts: 182
Joined: April 28th, 2016, 7:05 pm

Re: New News

Post by luvmydogs » March 7th, 2019, 9:03 am

Wonderful, Chrissy! Now get out there and have some more adventures.
Joanne (aka Jo)

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mykidsmom
Posts: 4058
Joined: February 9th, 2012, 5:09 pm

Re: New News

Post by mykidsmom » March 7th, 2019, 9:54 am

OMG this is the best best news ever...you know what......its never over till the fat lady sings.....and she isnt singing ......you know my opinion of opinionated drs!!!! 11 years ago my bright happy excited chief of Cardiology in the local hospital was delighted to inform me i might...if i was lucky.......get 6 more months...he figured it was unlikely......but he did advise me not to buy anything on credit that would take longer than 6 months to pay off and i certainly shouldnt venture too far from home or drive on hiways and he pointed me in the direction of a "decent" undertaker (whom i now suspect might have been his brother in law........(poor lou fainted and she went into labour ..niamh was born a day or so later.) this was when i was airlifted from dublin having spent almost 6 weeks in a mental hospital in west ireland..you know the story lol.....but drs dont know....in some cases they can make educated guesses....but i dont know that i believe them too much and wish theyd learn to keep their mouths shut.....the thing about this is....its great great news chrissie...but i seriously want to throat punch that blasted dr because look at the fecking stress he put on you....at a time your sick...and certainly dont need added stress..Im so fecking angry with that stupid git... but im very very very happy for you you know that...im happy that you got some relief.....heres the thing...we might need a silver bullet for you..(i know i need one but im not telling anyone just in case they order one..

so now im just waiting to see what mischief your going to get up to..

love ya...... :big-hug: :big-hug: :big-hug:
I think.....Therefore I am.!!!!!

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TruckerRon
Moderator
Posts: 3301
Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: New News

Post by TruckerRon » March 7th, 2019, 11:57 am

Chrissy, I assume you're familiar with The Picture of Dorian Gray? Maybe you should have Robo do a magical portrait of you to take over the cancer and other ills coming your way... Or have you secretly done a self portrait?
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

Stella Blue
Posts: 119
Joined: March 29th, 2016, 10:36 pm

Re: New News

Post by Stella Blue » March 7th, 2019, 10:41 pm

That is great news, Chrissie, but how annoying that you had to have that "3 months" thing in your mind all this time for no reason. Hopefully Dr. Andrew knocked heads! The doctors must know they shouldn't do this, but it seems they can't resist and may actually be thinking they are somehow being helpful. I was told I couldn't expect to be able to work much more than a year after my CHF was diagnosed and that I couldn't expect to be alive at all without a transplant 7 years down the road. Even after it became obvious I was getting better, those numbers always stayed in my head, and it was a great relief when I passed my 7-year anniversary this past January. Of course, along the way, I was lucky enough to "meet" you and the others on this board who've been dealing with this for a much longer time.

How are your memoirs coming along, by the way?

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Colin Pearson
Posts: 1004
Joined: August 12th, 2013, 6:25 am
Location: Berkshire England

Re: New News

Post by Colin Pearson » March 8th, 2019, 5:38 am

Brilliant.

But at the same time, what a blimmin nightmare being told that!

You are made of sterner stuff than most of us Chrissy.

:hugg:

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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 » March 8th, 2019, 11:50 am

Ozchrissy wrote:
March 6th, 2019, 11:55 pm
WELL ALL, THE 3 MONTHS ARE UP


BRING ON TODAY
Chrissy, your positive outlook and upbeat approach under such difficult challenges are an inspiration to us all and illustrates it ain't over until it's over. I've always said, and firmly believe attitude and a positive outlook are key to winning this battle. You are proof of that belief. You go girl, we're all proud of you. And as a wisened young woman said...BRING ON TODAY!!!!! :big-hug:
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
Posts: 7361
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: New News

Post by Ozchrissy » March 8th, 2019, 7:01 pm

DEEP DOWN I THINK I AM A DRAMA QUEEN

I honestly believe that with each of our setbacks we learn a lot about ourselves and get over that drama, and then when the next one comes we have already learnt those coping skills and use them, plus new ones we are forced to deal with, and on and on it goes.

There really is no alternative Robbo and everyone, what do we do, take ourselves off to a little corner of our world and suck on a dummy, (pacifier) life isn't like that.

My biggest way of coping is with the support that I recieve on here. I love the fact that I can talk to like minded people, who are all living the same type of existence, and learn from others experience and coping skills. I even love it when I get told off, because in real life most people would not dare tell me off, but my dear friends on here will put me in my place and I will shake my head, and make corrections to my thoughts or thinking. AND IT WORKS.

Mind you I am chemically enhanced at the moment, take Targin twice a day, am on Steroids, only half, I am like the everyready battery bunny when I take a whole one, and have anti anxiety pills if I need them. BUT isn't that what living a quality life in older age is all about. I don't feel I need to be ashamed to take those extra pills if they will enhance my quality of life, and keep me around for a longer period. I honestly believe our psychological attitude is so vital to how we survive with all this crap.

Also the one day at a time, living in the moment, is just such an easy thing to me now, I really don't know why we humans don't do it from day one. But, it does take a complete change of attitude to be able to do that in this day and age. I would wish us all back in the jungle, just existing from day to day but not having any stress. I could cope with that as long as my belly was full, and I had shelter and a comfy bed.
“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.

Leedur
Posts: 381
Joined: May 24th, 2015, 10:25 pm

Re: New News

Post by Leedur » March 8th, 2019, 7:29 pm

Good news Chrissy. Yes, attitude is definitely a survival tool. Hope you have many more good days and take the meds if they help. Good to hear from you. Know you will keep us posted.

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TruckerRon
Moderator
Posts: 3301
Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: New News

Post by TruckerRon » March 9th, 2019, 12:05 am

I've been told that whenever I'm in pain, whether I'm fully conscious or not, I tend to crack jokes. The funnier they are, apparently the worse my situation. Maybe if I learned to do drama instead I could end or avoid the pain?
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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mykidsmom
Posts: 4058
Joined: February 9th, 2012, 5:09 pm

Re: New News

Post by mykidsmom » March 9th, 2019, 10:50 am

want to marry me ron.....i'll swop willie for you....when willies in pain he whines.....and does the drama stuff lol....

no your not a drama queen chrissie......dramatic stuff just keeps happening to you......x0x0x00x0
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 » March 11th, 2019, 4:55 pm

Oh Ron, Pain is so unnecessary. I used to be the same, I would tolerate pain and wouldn't take anything stronger than a Panadol. I am now therapeutically medicated by professionals and it really is no big deal. I honestly don't feel any different, just not in pain and I can do more stuff. My biggest issues at the moment is the pain that comes, occasionally, when I eat. If I didn't have to eat I would be pain free. I however have some other wonder pills that will fix the issues with my stomach and pain, so yes I have a magic pill for all my ailments at the moment. It is only at times like this that I realize that the medical profession is pretty intelligent, and that most of our ailments that we have there is something that will relieve our symptoms.

The longterm implications of my tablets at the moment is not an issue, but if you can get a pain management plan to give you relief Ron that will not impact on your future, then I would suggest that you go for it. Honestly, once that fear of pain and the actual pain is controlled more, you whole attitude changes and you have a new sort of freedom.
“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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