28 with an icd

All posts from Jan 1st 2011 to Dec, 31 2011

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pyroguy83
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28 with an icd

Post by pyroguy83 » November 18th, 2011, 11:04 pm

hi, im scott and to be honest with everyone im scared to death about having an icd. i caught a disease called sarcoidosis from my military service, and it was so aggressive that it spread from my lymph nodes to my lungs and it paralyzed my right diaphragm and from there to my heart and was shutting my heart down. i went into cardiac arrest and died twice. i spent 17 days in cardiac icu and have only been home for two weeks and have been shocked twice, once was really hard and made me scream at the top of my lungs. it was being hit with a baseball bat from an unseen assailant. im not sure where i should go from here, i just finished nursing school but do i need the stress? if anybody can give me some insight it would be greatly appreciated.

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Eric
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Re: 28 with an icd

Post by Eric » November 18th, 2011, 11:17 pm

Scott,

Welcome to the group. I was 28 when I had my first CHF. My condition is different than yours, but I totally relate to being young and having heart issues. I also have been shocked and the trauma from the shock mentally is one of the hardest things to get over. You have found the right place and I am glad you have found us. You will find a wealth of knowledge, compassion and caring here. I personally have found this site to be invaluable in my mental and physical well being. I get motivation, a place to vent and tons of support from the people here.
Stress is definetly a trigger, but you can learn ways to deal with the stress.
I am hoping that you will get the help you need both from this site and from your docs.
Wishing you the best and prayers are with you.

Eric
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

pyroguy83
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Location: zephyrhills, florida
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Re: 28 with an icd

Post by pyroguy83 » November 18th, 2011, 11:28 pm

thanks for the feed back eric. very much appreciated.

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Clover
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Re: 28 with an icd

Post by Clover » November 19th, 2011, 12:29 am

Eric is right, you do learn to deal with the stress. You have to. My condition is electrical and stress induced. CPVT. The cathecholmines released during stress trigger my events. I like to think of it in a positive way, that we have to learn to be more positive and let the little stuff not effect us too much. :)

This is a great place to vent and you will indeed learn here more then anywhere else, even more then the doctors office in most cases!. Welcome!
St Jude "Fortify" ICD- 7/27/10
Polymorphic Ventricular Tachycardia
CPVT diagnosis (Class II Variant on the RyR2)
No longer in denial of my condition
VT successfully converted to sinus via ATP on 7/28/2011


"There is a moment when fear and dreams must collide"

My Intro Post: http://www.icdsupportgroup.org/board/vi ... 943#p63943

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reneemj
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Re: 28 with an icd

Post by reneemj » November 19th, 2011, 1:11 am

Hey Scott,

I haven't posted on here in awhile but I had to jump in and let you know there is a light at the end of the tunnel. I was 31 (I'm 45 now) when I had my first SCA. 3 1/2 years ago I had my first couple of shocks and they do hurt but that pain goes away pretty quickly, it's the mental stuff that lingers. I was diagnosed with PTSD and went to see a therapist - the best thing I've ever done! It's totally normal too. If you haven't heard of Dr. Sam Sears - google him and look for him on youtube! He is an expert on how to live with your ICD. Tons of great information out there.

If you have any questions please feel free to ask me!

Blessings to you,

Renee
Renee

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madison
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Re: 28 with an icd

Post by madison » November 19th, 2011, 7:01 am

Dr. Sears is wonderful. I found one interview article and a Facebook ICD Coach group. Much to read. Thank you for tip or Dr. Sears.
At first I wondered why the frisbee was getting bigger and bigger .......... And then it hit me!

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freckles1880
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Re: 28 with an icd

Post by freckles1880 » November 19th, 2011, 9:05 am

howdywelcome :armdown: for a while yet. I really think any of us who gets one of these little boxes in our chest has fears and those who have had shocks (they call it therapy? lmao4dx) are even more fearful. I do hope that if the shocks were inappropriate they make the necessary adjustments soon and you will be free of them or if they were needed you have just had your life saved, again. Medications and adjustments seem to be major issues for us.
As far as being a nurse, we have several members in the medical field on here and they are able to function pretty well with the ICD's.

Also Dr Sears is the BEST. Look him up.

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 53+ years and my eldest daughter.

Lianachan
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Re: 28 with an icd

Post by Lianachan » November 19th, 2011, 10:36 am

Hi Scott, welcome to the group. Whatever your ICD problem you will probably find someone here who's been there and done that. I know there are several of the 'younger generation' here ... Not been shocked myself yet but even so I know what the fear is like.


Ulric
Boston Scientific Teligen 100 fitted Mar 2011

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Kat
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Re: 28 with an icd

Post by Kat » November 19th, 2011, 11:45 am

Hey Scott, first off, thank you for your service to the country. I hope to hell that you get all the care you need and truly deserve. Second, welcome to the group. I know it sucks to have to be here but hey, we are all in the same boat.

I have to agree with the Dr. Sears recommendation. He has some amazing things to say that have always rang true with me. One that stuck out was how when we are younger and dealing with heart disease we have the added stress of not being able to share with our friends because they are not going through it where as older patients are more likely have have friends with heart issues. I encourage you to speak up to your doctors. You may have to do this repeatedly before a Dr. will listen but it is worth it. Depression and anxiety are very, very common with heart disease and being young does not protect you from their effects. Being shocked then brings its own measure of misery. If you don't tell the doctors what is happening in your head, they will only concentrate on the body issues. There is a lot they can do now days to get you through this rough patch. It doesn't have to be a long term thing.

Finally I can tell you from my own experience, this gets easier. I promise.
~Kat - Hypertrophic Cardiomyopathy
-That which does not kill us can really mess up our hair!
-Having one near life experience after another.

Intro post: http://www.icdsupportgroup.org/board/vi ... 5694#p5694

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KarenHall
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Re: 28 with an icd

Post by KarenHall » November 19th, 2011, 4:22 pm

Scott, welcome to the group and I'm so sorry for the circumstances that brought you here and the first couple of weeks of your recovery from surgery. I haven't been shocked to date but I can understand why you now feel so anxious. I hope that the problems can be sorted and you can begin your journey back to good health - with your little friend in your chest should your heart ever need it. xx
Karen x

St Jude ICD implanted July 2011
Non-Compaction Cardiomyopathy, Dilated Cardiomyopthay & family history of Sudden Cardiac Death
On Coversyl, Metrol
Lives in Tasmania, Australia

pyroguy83
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Joined: November 12th, 2011, 6:57 pm
Location: zephyrhills, florida
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Re: 28 with an icd

Post by pyroguy83 » November 19th, 2011, 7:17 pm

Wow!!!! just reading all of these posts is starting to make me feel better. thank you for the advice and support, and my wifey says thank you too.

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Kat
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Re: 28 with an icd

Post by Kat » November 20th, 2011, 6:25 pm

Hey tell your wifey that she is welcome to come on the board too. We heart patients rely a lot on our loved ones and they can have their own stress and worries taking care of us. She is always welcome to come on and vent/ask questions/share ideas and stuff.
~Kat - Hypertrophic Cardiomyopathy
-That which does not kill us can really mess up our hair!
-Having one near life experience after another.

Intro post: http://www.icdsupportgroup.org/board/vi ... 5694#p5694

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Suzanne
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Re: 28 with an icd

Post by Suzanne » November 20th, 2011, 7:13 pm

pyroguy83 wrote:hi, im scott and to be honest with everyone im scared to death about having an icd. i caught a disease called sarcoidosis from my military service, and it was so aggressive that it spread from my lymph nodes to my lungs and it paralyzed my right diaphragm and from there to my heart and was shutting my heart down. i went into cardiac arrest and died twice. i spent 17 days in cardiac icu and have only been home for two weeks and have been shocked twice, once was really hard and made me scream at the top of my lungs. it was being hit with a baseball bat from an unseen assailant. im not sure where i should go from here, i just finished nursing school but do i need the stress? if anybody can give me some insight it would be greatly appreciated.
Hi Scott and welcome :)

You've been through some pretty scary stuff! I pray that things get better for you.

"being hit with a baseball bat from an unseen assailant" is a great description of "therapy".

Give yourself time to heal from all you've just been through...not just physically, but mentally too. Nows not the time for you to have to decide anything major.

I wish you and your wife all the best.
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

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Leah
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Re: 28 with an icd

Post by Leah » November 20th, 2011, 10:51 pm

Hi Scott,
Im Leah. I had my first ICD when I was 21 years old. Now I am 31. No shocks at all. Knock on wood. Good Luck to you and your wife.
Take Care
Leah

JoeNH
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Re: 28 with an icd

Post by JoeNH » November 20th, 2011, 11:06 pm

Kat wrote:I encourage you to speak up to your doctors. You may have to do this repeatedly before a Dr. will listen but it is worth it.

Scott,

This is GREAT advise. ...... the "odyssey" upon which you have embarked is ABOUT YOU ! It is NOT about your doctor.

My doctor is probably sick of hearing it from me now. Every time I visit the doctor, at some point, I say, "Doc. I know you've heard me say this before, but I'm going to repeat myself, because what I'm going to say, merits repeating, because it's important. I'M NOT WORRIED ABOUT DYING. I'M WORRIED ABOUT LIVING. There's a difference between "not dying" and "living." Bear that in mind as you're treating me Doc !"

Scott .... in your doctor's office .... IT'S ABOUT YOU ! It's not about the doctor.

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