Welcome Newflover

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

Welcome Newflover

Post by freckles1880 » October 30th, 2014, 6:54 pm

Newflover wrote:Hello everyone! How lucky to have found you!

I'm 63 years young and just received my St. Jude's AICD almost 2 months ago after a cardiac arrest at my son's rehearsal dinner. Nice way to steal the attention, don't you think? I have LVNCC (left ventricle non-compaction cardiomyopathy) and mitral valve prolapse with moderate regurg. I did miss the wedding which was in our garden. I had been having V-tach for several years and have been taking metoprolol to control the v-tach, PVC's and atrial fib. Now I'm on amiodorone as well.

It was an incredibly strange feeling dying and coming back. I was dead for about 5 minutes and took between 7 to 9 shocks to be revived (depending on who is telling the story). Luckily, we have an AED at the house and my nephew who, was there at the rehearsal dinner, and works for St. Jude's implanting ICD's did the CPR and there was also a pediatrician in attendance who did the chest compressions. My husband pushed the AED button. I'm so fortunate on all counts!!

I have 3 Newfoundland dogs in addition to 4 adult children, 1 son-in-law, 1 daughter-in-law and a cat. I adore gardening and playing with the dogs.

I look forward to learning a lot from all of you! Thanks!

I hope to hear more of your stories!
howdywelcome And welcome from another who has been revived. You have gone through a lot in the last few months and now should be able to enjoy your new Daughter in law along with all the rest of your family. Having that AED in the house was certainly a lifesaver.

This is the best place to discuss your questions and get answers from the real experts, most of us not in the medical field, but as a group know a lot about living with an ICD.

So sit back and read , post and ask questions.

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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David882
Posts: 882
Joined: July 12th, 2014, 8:58 pm
Location: 49 06' 42.42" N 113 49' 52.52" W

Re: Welcome Newflower

Post by David882 » October 30th, 2014, 8:05 pm

welcome and ask away...be careful of people with helmets.
With Respect,
David

11 Sept 2012 / Idiopathic Ventricular Fibrillation
At about 2AM I started storming at home, and in the ambulance, and in the ER.
Sometimes I restated and sometimes I had to be defibrillated.
A number of times I went into arrest and stopped breathing.
External defibrillation count exceeded 18 and at some point the team induced a coma.
24 hours later I was revived and have never had another event.
13 Sept 2012 / Medtronic ICD was implanted.
My diagnosis is still idiopathic.

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Michael L
Posts: 528
Joined: June 17th, 2014, 8:39 am
Location: Central Florida

Re: Welcome Newflower

Post by Michael L » October 31st, 2014, 7:51 am

Welcome, and sorry you had to pay the price of admission.

Sounds like you travel with some pretty good company, medically speaking! Glad they were around!

Make yourself comfy, I am sure some of the other inmates will be around to introduce themselves shortly!
Biotronik Ilesto 7 implanted May 5, 2014
CABG 3X February 1998

Loralee713
Posts: 65
Joined: September 29th, 2014, 11:12 am

Re: Welcome Newflower

Post by Loralee713 » October 31st, 2014, 10:53 am

Hi new flower when I read your post I couldn't believe how much we are alike. I have yet been able yo find anyone with LVNC. I also have MVP with regurg, and have PVC ALOT with occasional vtach. I also take metrolpol 50mg xl. So far not on any other meds. I too had cardiac arrest 3 months ago had icd put in 3 weeks ago. We have as a lot in common, and I would love to ask you a few questions. I have not yet spoke with the doc on my MRI that says I have LVNC they just told me on the phone and referred me to a genetic specialist. I looked it up online big mistake I know everything is neg that I read, and they say its rare. Can you tell me your experience with it? And what your doc is saying about it? Do you have vtach a lot? Have you had a hx of symptoms your whole life or just in your adult life? Do you know your EF? And do you know if there are different levels of this cardiomyopathy? I so appreciate any info you can give me. Thank you and WELCOME! howdywelcome

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

Re: Welcome Newflower

Post by TruckerRon » October 31st, 2014, 11:09 am

Whether you look things up online or in a medical book, pay attention to the age of the information. After my SCA and diagnosis, the first article I read scared me... 5 year survival predicted unless I had a transplant! The second article was far more hopeful, and it turned out the first one was written 10 years earlier than the second.

Medical science changes rapidly.
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
Posts: 7266
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: Welcome Newflower

Post by Ozchrissy » October 31st, 2014, 4:52 pm

howdywelcome

Welcome, we pay a unique price for our entry to this club, but that being said the benefits are priceless.

You are already an object of my envy with your Newfoundlands, I had a beautiful boy about 26 years ago and still remember my gentle giant, especiallty our cuddles on the couch.
“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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Michael L
Posts: 528
Joined: June 17th, 2014, 8:39 am
Location: Central Florida

Re: Welcome Newflower

Post by Michael L » November 1st, 2014, 3:27 am

Of course autocorrect is creating a new name for you, Newflover, not Newflower....

Don't you just love technology!?!?!?!?!?!?
Biotronik Ilesto 7 implanted May 5, 2014
CABG 3X February 1998

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

Re: Welcome Newflower

Post by freckles1880 » November 1st, 2014, 7:09 am

Michael L wrote:Of course autocorrect is creating a new name for you, Newflover, not Newflower....

Don't you just love technology!?!?!?!?!?!?
Thanks for catching my error Michael. It was my fingers not my auto-correct. Error fixed.

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.

Newflover
Posts: 4
Joined: October 30th, 2014, 11:50 am

Re: Welcome Newflover

Post by Newflover » November 6th, 2014, 12:14 am

Thanks, everybody for the warm welcomes!!! It's true! We are an elite group but an incredibly lucky group as well as I glanced over everybody's dx!!!

Can you tell me what it's like to 'kicked in the chest'?? My EP said it's not that bad....that he's had patients standing on a ladder and not being knocked off. Is that true?? Or does it depend on your settings??

tomrostron
Posts: 750
Joined: June 6th, 2006, 12:30 pm
Location: bolton. uk
Contact:

Re: Welcome Newflover

Post by tomrostron » November 6th, 2014, 7:08 am

Can you tell me what it's like to 'kicked in the chest'?? My EP said it's not that bad....that he's had patients standing on a ladder and not being knocked off. Is that true?? Or does it depend on your settings??
i have had several shocks, including a run of three, one after the other. Its not the pain thats the problem, even though it does hurt a bit.Its the suprise element, that knocks you for 6. Some people know that they are coming, and maybe lay down on the bed, or floor etc. For other folk, it just happens. i think your doc is b/s****ing you about the ladder. i wouldnt like to be on one, when i got shocked. But then again, as most people will tell you on here. Everyone is different, as to the way shocks come, and how they handle them. joe.

Newflover
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Joined: October 30th, 2014, 11:50 am

Re: Welcome Newflover

Post by Newflover » November 6th, 2014, 10:18 pm

Thanks, Tom. That does make sense. The shock of the shock! That seems to sum it up.

danalshep
Posts: 24
Joined: April 22nd, 2015, 9:05 pm
Location: Connecticut

Re: Welcome Newflover

Post by danalshep » May 6th, 2015, 9:48 pm

Hi Newflower. I was diagnosed with LVNC recently and will get my ICD in about 3 weeks. I also have MVP with regurg, PVC's that sometimes are beyond distracting. How are you doing with your ICD, etc? Sounds like you had a dramatic entrance into the club, mine has been much more tame. It's not a club that I thought I would ever enter despite the family history.
Dana
LVNC
Boston Scientific ICD May 29, 2015

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