28 with an icd

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

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jmc72
Posts: 26
Joined: November 7th, 2007, 7:00 pm
Location: Virginia

Re: 28 with an icd

Post by jmc72 » November 27th, 2011, 1:40 am

Scott,

I just wanted to say hi and let you know there are a few of us on here who have Cardiac Sarcoidosis. I got my ICD at 35, but I'm suspicious I had cardiac involvement at least 5 years prior. It took diagnosing it in other organs (lungs, brain, spine, GI tract, lymph nodes) before they put 2 and 2 together and took my syncope seriously. So, if you have any questions, please don't be afraid to ask.

Take care.
Jen

cardiac sarcoidosis

ICD implanted 10/23/2007
Generator replaced 3/21/2013

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Melissa
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Re: 28 with an icd

Post by Melissa » November 27th, 2011, 7:06 am

Hi Scott,
I also just wanted to say hi. I was diagnosed with cardiomyopathy at age 31 in 2004. My cardiomyopathy is from having chemotherapy when I was a child. I developed CHF in 2010 at age 37 and had my ICD implanted in August 2010. Fifteen months later, I am feeling great! It's definitely hard being young and having CHF. The people on this board have been great for me because there are few people in real life that I can talk to who know what I am going through. The few I do know are from church and are grandparents, not a young mom raising two children.

Melissa
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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farina
Posts: 45
Joined: August 1st, 2009, 9:29 am

Re: 28 with an icd

Post by farina » November 27th, 2011, 8:15 am

Hi Scott,
I haven't been on this forum in a long time but feel like I logged in today just to read your post especially--I have cardiac sarcoidosis, too--there aren't that many of us. I was implanted with an ICD two and a half years ago after being diagnosed through a cardiac MRI. I was 58 years old then but think I'd been having symptoms since my early 50s. Not quite the same as 28! I am sorry for the events you've endured, but grateful that you have the ICD and this community for support. I've not been shocked as you have been, but other cardiac sarc patients share their stories on the Inspire forum. (Have you gone there? Specifically for sarcoidosis patients--just put "cardiac sarcoidosis" in the search box.) I got used to the ICD; the disease robs you of a bit of peace of mind, but replaces that with a real appreciation for life. Easy to say....hard to live differently than we're used to living. I hope you have a great sarcoidosis team and that you are taking meds that help. I don't know that I've ever said to anyone, "I feel your pain" but I'm saying it to you--I know this is scary stuff but there are a lot of cardiac sarc folks who live long and happy lives. As someone said earlier, thank you for your service. I'm sorry it resulted in this crazy disease. Sharon

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Shanks
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Location: Long Beach, MS
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Re: 28 with an icd

Post by Shanks » December 20th, 2011, 12:42 am

My name is Scott also and also have been in US Navy Seabee's for 22 years when all my CHF/A-Fib/Bradycardia/EF 15%,ICD came out of the wood work and hit me hard one day at work. After a crazy last 9 months I will be retiring here in a few months at 39 but will be walking away with my head high and not carried off the battle field! I hope you were able to get all of your problems service connected so you should be in better shape with help from the VA. I know an ICD is 100% rating automatically.
Let me know if you have had any issues with the VA if you used it please, I am submitting all of my paperwork to the VA in a few weeks to get that process started.

Hoo Rah and stay strong Brother,
Go Navy!!! :::)
Scott Allen
Long Beach, MS
A-Fib/Tachycardia/Non-ischemic cardiomyopathy (Mar 11)
Left/Right Atrial Ablation (Oct 11)
Bradycadia with long VT (Nov 11)
AICD Medtronics Protecta DR (Dec 11)
Atrial Ablation #2 (Jan 12)
Atrial Ablation #3 (Mar 13)
10mg lisinoprol, 100mg Metoprolol, 40mg Forosemide, 20mg Xarelto, 400mg Amiodarone, Spironolactone 25 mg, 1mg Xanax.
EF in March 2011 10%, EF in Sep 11 25-30'ish% and now Mar 12...40-45%.
Email: sallen133@yahoo.com
Intro: http://www.icdsupportgroup.org/board/vi ... 756#p85756
FaceBool: https://www.facebook.com/#!/scott.allen133

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SkaterGirlBrooke
Posts: 315
Joined: December 14th, 2010, 9:03 pm

Re: 28 with an icd

Post by SkaterGirlBrooke » December 20th, 2011, 2:43 am

Hey Scott,
As I have learned, you can never be too young for something to go wrong, but it could have been too late to fix/help! I'm around your age, 24. Luckily you are being taken care of and hopefully, you will get to be secure in your predicament...I'd like to think of you now as, almost invincible! Go forth as a superhero, when before you were just a regular hero. Yay! So, welcome to the board, I am so glad you found us. I miss the world down there, I spent every summer with my dad in Dade City/Trilby...so you know!
We are all here for you, and if anyone you meet in your world has anything ignorant to say, you tell them you're from the future, and they better be careful what they are doing and saying now.
Brooke
***************
Brooke
About Me:
LQTS,PSVT, VT
SCA X 3 June 2011, X2 Sept, Oct '11 SCA X2 Nov/Dec '11
VT, VF June 2011, Oct '11, Nov '11, Dec '11
Cardiogenic Syncope-6 times Nov '10
Class IA Indications for ICD...waiting on red tape
Metoprolol 350 mg/day
Procan SR (Procainamide...scary stuff)

jennkenny

Re: 28 with an icd

Post by jennkenny » December 21st, 2011, 9:32 am

Hi Scott,
Welcome and thank you for your service to our country. Like many others (and I too was surprised by how many others), I received my 1st ICD young - at 27. I am now on number 5. I have been shocked repeatedly also. It is not fun, as you know, but as the old cliche says, "time heals". The hardest thing for me to overcome has been a sense of loss of control. I gave the ICD and my anxiety disorder a lot of power for a long time. Sometimes, I still lose the battle. But this site, my husband, and Dr. Sears have been so helpful. I don't post too much but reading others' experiences helps me feel less alone. I saw Dr. Sears for 1:1 therapy when he lived in Gainesville at UF. His info is helpful. Reach out to someone who can relate whether in person or on this site. It really does help. Good luck to you and Season's Greetings.
Jennifer

andrewr138

Re: 28 with an icd

Post by andrewr138 » December 23rd, 2011, 4:53 pm

Scott,

Its definitely traumatic getting an ICD at a young age. I got my first one at 17 and I'm 25 now, but you learn to live with it and it becomes a part of you to the point where it doesn't seem abnormal to have it. I just spent 8 weeks without it and I would take my ICD over a zoll life vest any day of the week. Hang in there.

Andrew

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LisaAye
Posts: 196
Joined: March 19th, 2009, 4:35 pm

Re: 28 with an icd

Post by LisaAye » December 27th, 2011, 11:47 pm

Scott,
You have found a great group. I have had my ICD for over 3 years, (4 years 2-12) It is completely normal to feel the way you are feeling. When I first got mine, I was afraid to be home alone, I was afraid to leave the house, I was so afraid of getting shocked! (therapy) I had my one and only shock 6 months after my ICD was implanted due to a-fib, they did an ajustment and I have not had a-fib or therapy since then. I know the therapy can be very frighting but I think it was the unknown of what the shock would feel like that really just scared me the most. But I have to say it does really get better with time and if they have to reprogram yours you could go a very long time without another therapy. I haven't been on here much lately but I always know that I can come here with any fear or problem and they are always here to help, and the ALL can relate. You are young but you will find that are many people much younger then you that also have ICDs.
Hang in there and remember that no question is a dumb one.

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AlexK
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Joined: October 17th, 2007, 6:27 am

Re: 28 with an icd

Post by AlexK » December 28th, 2011, 9:24 pm

'Sup?

All I can do is echo what's been said so far to acknowledge that, yes, we understand.

I'll add that in time you'll adjust to things being the way they are, that the level of head-trip you're going through now is NOT permanent, that you get used to the idea with time.

With time, that's the important thing. Give yourself time, but also, give yourself permission to feel like you do. I realize in the military it's all about bearing and attitude and all that, but, bud, that's over. You're one of us now.

We go out in public, by and large we look like anybody else (I happen to be prettier than most, such is my cross to bear) but we got this thing doing its thing down in our basement. You're going to get used to that, I promise. It'll take some time, I promise that too. The course of that time is a head trip, this I also promise, and we'll be here to hear, this, also, promised. You will deal with all this, you will come to terms with it -- I swear.

Here in a period of time you'll be on this board and someone will log in with the story how they just got the thing and they're a little freaked and so forth and you'll be able to log on and type -- in your own way -- what I just did (except the pretty thing, that's all me) to let them know everything's going to be okay, that what they're feeling is oh-so normal.

Here's the thing we really don't want getting around or it'll take too long to get in to see our cardio docs: We're actually better for this experience. Yeah sure the health thing, the numbers on the papers, that's all better, but the way we've grown and had a chance to understand ourselves better, and to understand what it means to be alive better, well, like I said, if word about this understand thing gets out people will be lining up to get these implanted.

You're going to be fine bro; got your back. Holler' if we can do anything for you, or if you just want to talk.

Edit: Z-hills?! I've been there. Years ago when I was an avid skydiver.

Edit 2: Stress? Did you know statistically heart patients, people like us, are better at creating the stress hormone than those puny mortals? And that the stress hormone is not good for your heart? That's why you got to give yourself room, and permission, in order to lower your stress level, which comes from inside you, is something you create.

(This is what I mean by the "understand" thing. You're going to get a better handle on stress, and through that on life. It really is good/weird how this all works out.)
August 1, 2007, died; CPR restored
August 3, 2007 implant Medtronic Pacemaker/Defibrillator
Coreg and Atacand daily
"In the end, everything is just a gag," -- Charlie Chaplin

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Shanks
Posts: 89
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Location: Long Beach, MS
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Re: 28 with an icd

Post by Shanks » January 4th, 2012, 1:43 pm

To AlexK,
"With time, that's the important thing. Give yourself time, but also, give yourself permission to feel like you do. I realize in the military it's all about bearing and attitude and all that, but, bud, that's over. You're one of us now."

I dont think he is your "BUD" and that comment is so disrespectful! Have you ever put on a uniform and served your country? If you have you wouldnt say we are just one of us now. We endure more hardships in a career in the military that most cant fathom. I know.. I am still active military and have served my country for 22 years with the signed check to USA for my life. Yes we may have heart disease and we are here to learn from each other but to categorize us as just another civilian you are so wrong. My friends and family always ask me how I stay so positive with all of the health changes in my life and say because I have had it worse... I am not afraid to die but if I have to, I will do it with honor, courage and fighting to the end "and all that"! If you have lived in a war zone away from family for months on end, no showers, little sleep of food and just some of the basic creature comforts you really learn what the true appreciation of life, liberty and freedom is!

and thats all I got to say about that..."BUD"! :flagwave:
Scott Allen
Long Beach, MS
A-Fib/Tachycardia/Non-ischemic cardiomyopathy (Mar 11)
Left/Right Atrial Ablation (Oct 11)
Bradycadia with long VT (Nov 11)
AICD Medtronics Protecta DR (Dec 11)
Atrial Ablation #2 (Jan 12)
Atrial Ablation #3 (Mar 13)
10mg lisinoprol, 100mg Metoprolol, 40mg Forosemide, 20mg Xarelto, 400mg Amiodarone, Spironolactone 25 mg, 1mg Xanax.
EF in March 2011 10%, EF in Sep 11 25-30'ish% and now Mar 12...40-45%.
Email: sallen133@yahoo.com
Intro: http://www.icdsupportgroup.org/board/vi ... 756#p85756
FaceBool: https://www.facebook.com/#!/scott.allen133

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AlexK
Posts: 1124
Joined: October 17th, 2007, 6:27 am

Re: 28 with an icd

Post by AlexK » January 5th, 2012, 8:50 pm

Shanks wrote:To AlexK,
"With time, that's the important thing. Give yourself time, but also, give yourself permission to feel like you do. I realize in the military it's all about bearing and attitude and all that, but, bud, that's over. You're one of us now."

I dont think he is your "BUD" and that comment is so disrespectful! Have you ever put on a uniform and served your country? If you have you wouldnt say we are just one of us now. We endure more hardships in a career in the military that most cant fathom. I know.. I am still active military and have served my country for 22 years with the signed check to USA for my life. Yes we may have heart disease and we are here to learn from each other but to categorize us as just another civilian you are so wrong. My friends and family always ask me how I stay so positive with all of the health changes in my life and say because I have had it worse... I am not afraid to die but if I have to, I will do it with honor, courage and fighting to the end "and all that"! If you have lived in a war zone away from family for months on end, no showers, little sleep of food and just some of the basic creature comforts you really learn what the true appreciation of life, liberty and freedom is!

and thats all I got to say about that..."BUD"!
Hey Chuckles, I'm a veteran.

I'm guessing you're cavalry? The ones with the high horses?
August 1, 2007, died; CPR restored
August 3, 2007 implant Medtronic Pacemaker/Defibrillator
Coreg and Atacand daily
"In the end, everything is just a gag," -- Charlie Chaplin

JoeNH

Re: 28 with an icd

Post by JoeNH » January 5th, 2012, 10:30 pm

Shanks wrote:Have you ever put on a uniform and served your country?
I'm reasonably certain this forum doesn't have much to do with, nor will it benefit much, one way or the other, by one's military rank, past or present uniformed service to the United States of America. I honestly fail to understand how two weeks, two months, two years or twenty-two years of military service to the United States of America makes anyone an authority about cardiac and ICD related matters.

We typically don't measure people in this forum. We're here to help folks out, American, Canadian, Mexican, Australian, New Zealand'ers, Brits, Irish, Germans or any other nationality. We help out Jews, Christians, Muslims, Hindus, Buddhist and Atheists alike, or any other religious view. We help out wealthy folks, we help out poor folks, we help out the people in between. We help people with private insurance, government insurance and no insurance at all. We help people who use public hospitals, those who use religious hospitals and those who use private hospitals. We're happy to have young folks, old folks and in between folks in our midst. Men are every bit as welcome as the women. We are happy to work with business leaders, truck drivers, civil servants, students, clerics and the unemployed. We're happy to work with black folks, white folks, Asian folks, Hispanic folks. We just don't give a damn about any of that crap. Everyone's knickerbockers go on the same way in the morning: feet first !

In short, there aren't a real long list of qualifications to qualify for the help, advice, wisdom, sympathy and compassion available in this forum. We ask folks to be polite, to benefit as much as they can from our collective wisdom and experience, and at some point in the future, provide some help to some other member here that happens to need more help that you do.

You're in an INTERNATIONAL FORUM here Scott. Iranians, Iraqis and Afghans, Lawyers, employees of the IRS and used car salesmen, Democrats, Republicans, Liberals and Conservatives are even welcome here. I reasonably suspect that there are many folks who are reading my comments who aren't much impressed with the United States Military, they don't sing the Star Spangled Banner, they don't say the Pledge of Allegiance and they don't wrap themselves in Old Glory. We're simply a group of men and women from around the world, with peace and goodwill toward our fellow men and women, who are trying to help each other with a common set of problems. That's it. Simple.

I don't much give a crap whether AlexK has served in the military or he hasn't. I don't much care if you do or you don't. I don't much care who wraps themselves in a Maple Leaf or a Union Jack. I care about the contribution each of you respectively make to the forum. If you want to debate whether you or another person deserves a greater amount of respect than another based upon your service in the United States Military, please .... as they say .... take that crap out in the parking lot.

P.S. Hey Scott .... I served four years in the 902nd and 10th Engineers .... Plenty of us here know all about selfless service in the military. There are also plenty of us who have served our respective nations in selfless ways other than the military. And the folks who weren't "serving the nation" were out there paying the taxes so that I had clothes on my back, three squares a day, and the best medical care in the world while I was in the military. Civilians are no less patriotic than veterans. American's have no monopoly on civic mindedness either. But most importantly, please be reminded that most of us, around here, we don't wear all that junk on our sleeve. We're here to share the peace and goodwill that is so abundant in our damaged, destroyed, broken, rehabilitated and transplanted hearts, with others.

pyroguy83

Re: 28 with an icd

Post by pyroguy83 » February 3rd, 2012, 6:19 pm

wow, i wasnt trying to start a fight. yes i am part of this group of extraordinary people but i also belong to a time honored brotherhood of disabled veterans. that doesnt change anything in the long run....

rorktm
Posts: 90
Joined: January 8th, 2012, 9:48 pm

Re: 28 with an icd

Post by rorktm » February 4th, 2012, 12:54 am

Hello Scott, and thank-you for your service! I am sorry to hear about your condition. Yes, it is scary as hell. I am 36 and developed an unexplained full heart block in November 2011. The best guess the doctors have is that it was a virus. I never felt sick or had an indication something was wrong until I literally fainted out of the blue one day because my heart came to a crawl. I am very active and in good health otherwise. I am finding the biggest challenge is the mental challenge of moving on, but we have to move on. Time can be a wonderful healing agent and as more time goes by, I am becoming more comfortable with my implanted device and realizing that it really is not limiting me much. In fact, the one thing I know for certain is that I will not die from sudden cardia arrest and my heart will keep pumping even if the rest of me gives out!

Hang in there and keep looking forward. Life is far, far, from over.
Todd

Nonischemic dilated cardiomyopathy
3rd degree heart block
EF - 20%
Cause unknown, probably a virus
Diagnosed Nov. 20th, 2011
St Jude BiV-ICD implaned on 11/23/2011
No shocks yet
18.75 mg carvedilol twice a day, 5 mg lisinopril, 120 mg furosemide, 25 mg of spironolactone, 2.5 mg metolazone, 20 mg Xeralto, & hugs and kisses from my family

Ken the mailman
Posts: 119
Joined: June 8th, 2011, 9:19 am
Location: Louisville, Ky

Re: 28 with an icd

Post by Ken the mailman » February 4th, 2012, 10:27 am

Scott,
I want to share something with you that some one's shared with me. (e.i. the Rabbi)
"Honor the Beginning"
Beginnings can be delicate or explosive. They can start also invisibly or arrive with a big bang.
Beginnings hold the promise of new lessons to be learned,new territory to be explored,and
old lessons to be recalled,practiced, and appreciated. Beginnings hold ambiguity, promise,
fear and hope.
Don't let the lessons, the expereinces of the past, dampen your enthusiasm for beginnings.
Just because it's been hard doesn't mean it will always be that difficult. Don't let the
heartbreaks of the past cause you to become cynical, close you off to life's magic and
promise. Open yourself wide to all that the universe has to say.
Let yourself begin anew. Pack your bags. Choose carefully what you bring, because packing is
an important ritual. Take along some humility and the lessons of the past. Toss in some
curiosity and excitement about what you haven't yet learned. Say your good-byes to those
you're leaving behind. Don't worry who will meet or where you will go. The way had been
prepared. The people you are to meet will be expecting you. A new jouney has begun.
Let it be magical. Let it unfold.
I wish you well, and remember this bd is always here for you.
Ken
Nonischemic dilated cardiomyopathy
SCA 12/20/2009
St. Jude ICD 12/23/2009
2nd SCA 05/22/2010
Lisinopril 2.5mg daily
Bystolic 5mg 1x daily

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