.·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

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

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Maxine Miller
Posts: 8
Joined: January 25th, 2010, 8:28 am
Location: Ontario Canada

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by Maxine Miller » January 26th, 2010, 7:10 am

I guess I did this backwards my name is Maxine I am a mother of 3 boys my youngest is 15 and was diagnosed with cardiomyopathy I just had my ICD implant on the 19th of January 2010 still resting and dressing my wound still sore and trying to keep my left arm down.I hope to learn a lot fromthis family as all this is new to me my measurement is 33mm and already i can feel the difference with my new device any info i can get will be a blessing
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maxine
Hypertrophic Cardiomyopathy
medtronic ICD:implanted 19/1/2010
Bisoprolol..Avapro..ASA

dad624
Posts: 1
Joined: January 25th, 2010, 6:47 pm

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Post by dad624 » January 26th, 2010, 10:51 am

Hi, I hope I am doing this correctly! My name is Dave, I am 53 years old, I have 3 kids, 23, 16, and 13 and a wife of 17 years. I live in Mid Michigan now but have lived in Florida, New York, both upstate and down state, New Orleans, and Boston. Needless to say I am food and restaurant challenged nowadays. I had my first medtronic put in in 1998 due to V-tach. Next one in 1993 amd my last one was supposed to be 2 years ago but the battery has stayed strong so I guess anytime now for number three. Glad to be here, wish I knew of it sooner. Go Spartans!!!
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andrewhaff
Posts: 3
Joined: January 26th, 2010, 2:28 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by andrewhaff » January 27th, 2010, 12:20 pm

Hi ---

My name is Andrew, I'm 41, and started running marathons a few years back. Last year I reached my goal of under 4 hours in the San Diego Rock n' Roll marathon. Unfortunately, I've recently hit a little snag with my marathon training. Here's my cardiac history:

(1) Two years ago, a case of feeling faint and breathing difficulties during a 10 mile run. Shrugged it off as the symptoms resided in 15 minutes or so.
(2) A month ago, another case of faintness/breathing difficulties during the end of a run. Went to see primary who ordered a stress test
(3) Three weeks ago passed stress test with high marks, made it to 19 minutes @ 200 bpm and cardiologist gave me a clean bill of health to train again. Only a few PVCs noted. Heart function excellent.
(4) Two weeks ago experinced first case of sustained V-tach during a run. My heart started racing at 240 bpm for a least 80 minutes --- I had to walk back 4 miles from my run (no cell phone to call for help) and then find somebody who could take me to the ER. Docs were amazed I sustained enough blood pressure at 240 bpm for such a long duration. They credit my running as both triggering the eipsode and saving my life
(5) Sepnt a few days in ICU at Scripps Green in La Jolla. Five hour EP study indicated a slight atrial flutter (subsequently ablated) but unable to induce V-tach like on my run. However, cardiac MRI indicated scarring on my left ventricle (smoking gun). ICD implanted on the Jan 19th. Currently docs do not beleive my case is ARVD.

They implanted a St. Jude Current DR, dual chamber device. The device rep tried to cheer me up stating that two folks with St. Jude defibs have climbed Mt. Everest.

I'm feeling blessed to be alive and with the opportunity to continue celebrating life with my bride and two beautiful daughters.

Best,
Andrew

Blacky9
Posts: 8
Joined: January 27th, 2010, 10:40 am

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by Blacky9 » January 28th, 2010, 7:15 am

Hello everyone,

I am obviously new to this forum but from what I have seen so far it looks like a really friendly place to talk to other people in the same situation and to share experiences etc.

Ok, on to my introduction:

My name is Phil and I am 26 years old and live near Manchester in the North West of England, UK. Last year on a normal Saturday night, 29th August, I collapsed due to a sudden cardiac arrest. Luckily for me thanks to my miraculous wife Claire, who was fortunately in the same room when it happened, I managed to survive. Claire, despite having no medical training, managed to somehow keep composed enough to call the ambulance and then perform heart resuscitation until the ambulance arrived at which point I was shocked back to life (at the 3rd time of asking I believe). As I’m sure most of you know from experience, my life from that point was changed forever.

I had suffered from ventricular fibrillation but despite having many tests during the next 2 weeks in hospital no reason could be found for why this had occurred. In this situation, I was told that even with no recognisable cause, the fact that this had happened once was enough for me to be implanted with an ICD. I had my ICD implanted 12 days after my arrest and was released from hospital a day later.

It is now 5 months on and whilst life has more or less got back to normal, I am probably still coming to terms with it all. My wife has been truly amazing and everyday I feel lucky to be here, especially due to the fact I have 2 young boys and I often find myself looking at them thinking how lucky I am to be here being able to play with them and watch them grow up.

I have not experienced any shocks from my ICD and from the checks I’ve had, the pacemaker aspect of the ICD has not been used either.

I was off work for 2 and a half months, I could have probably taken longer off if I’d wanted but considering how supportive they had been I wanted to get back and show willing as soon as I felt up to it. I can’t drive at the moment as it is standard procedure in the UK to be banned from driving for 6 months after an ICD is implanted (not sure if this is the case elsewhere in the world?). It’s unbelievable what an inconvenience not being able to drive is, and it does get me down a bit feeling guilty getting lifts everywhere, but to be honest everyone has been very, very kind offering lifts.

For me now, with everything else settling down, my biggest personal issue is with regards to playing sport. Prior to “the incident”, I was an extremely fit and active sportsman. I played football (soccer) at least twice a week and until last Summer was playing semi-professionally – I even graced the turf of Wembley whilst winning a national cup final. I now find myself in a situation where I am desperate to play again and yet the advice I have been given is not particularly clear. My consultant advised against playing contact sport whilst my specialist nurse advised I would be ok to do this. I will try to post a new thread to discuss people's experience of playing sport.

Right, well that’s who I am – I look forward to speaking to you in the future!

Phil

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ricatlga
Posts: 367
Joined: February 2nd, 2010, 8:57 am
Location: Atlanta, GA USA

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by ricatlga » February 2nd, 2010, 1:20 pm

Greetings -
I'm a relatively new ICD recipient. My name is Raymund, I'm 59 years old and I work for a large computer storage company. I'm a native of Atlanta, a Red Cross CPR and First Aid instructor and active with a Boy Scout troop.

I was in Tulsa on business and got extremely dizzy and ill at ease in my hotel room. Figuring I need to practice what I preach I had the front desk call 911. This was on Jan 19th, 2010. When the paramedic got there I was in ventricular tachycardia with a heart rate about 240. I had to be shocked twice to restore normal rhythm. By the time I was arriving at hospital, I started into another round of v-tach. So lots of drugs later and I'm in Cardiac ICU at St. Francis Hospital.

My previous heart history was mitral valve prolapse with a mitral valve repair in December of 2007. That was done robotically at St. Joseph's hospital and I had a great recovery. I otherwise had good heart function. No blockages to speak of and good muscle tone with no enlargement.

The Tulsa cardiologist told me that I was very lucky since this type of sudden onset with no known predisposing factors did not have a great survivability rate. Three days later, I had a defibrillator installed. I had great support from the folks at St. Francis and local employees of my company.

I just happened to come across this group while perusing the Internet for information and it looked like a good place to exchange thoughts and ideas. This picture of me is from a Boy Scout sailing trip to Bahama.


Image
Raymund
Mitral valve repair Dec 2007
VF unknown cause 1/19/2010, Medtronic Secura-VR 1-22-10
Ablation May 2012 - Sotalol discontinued in September

mattelc
Posts: 2
Joined: February 7th, 2010, 8:52 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by mattelc » February 8th, 2010, 6:22 pm

Hello everyone!

My name is Matt. I am 25 and received my first ICD at 18 after being saved from a cardiac arrest in a class at college (underlying cause of HCM). I have had 9 episodes of VF since, and was saved in every case by my St. Jude ICD. The 10 total events have occurred sporadically with no apparent theme. I've had breaks as long as 2 years and as short as 1 week. Drug therapy was just Toprol (betablocker) for the first 6 years or so, with steadily escalating doses. After two recent events within one week of each other my docs added Sotalol to the mix. I had one more shock two months later and now its been two months with nothing.

I would be especially interest in hearing from anyone 1) under 30, 2) who gets regular and sporadic shocks like me, or 3) who has any theories about triggers for events.

I haven't noticed any consistent themes. The only common thread I noticed with pretty much all of my shocks is that they have all occurred while resting. While not definitive causes, I think lack of sleep, smoking, and drinking excessive water all may increase the likelihood of receiving a shock...

From a purely electrical viewpoint, looking at my ICD printouts I've noticed that all of my events have been triggered by a single PVC, which caused about 1 second of VT followed immediately by VF. So any tips on avoiding PVCs would also be appreciated...

TammyN
Posts: 7
Joined: February 11th, 2010, 12:42 pm
Location: Southern Ohio

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by TammyN » February 11th, 2010, 11:02 pm

icdadmin wrote:Use this thread to introduce yourself at "ICD Support Group".
Hi. Let me try this again. I think my first intro post went to the wrong place. My name is Tammy and I'm from southern Ohio. I am 38 and thank God above to be 38. I am thrilled to find this group. I have felt so alone on this journey. My issues started two years ago with the birth of my second child. I was admitted to hospital 4 days after she was born because I was short of breath. I was told I was in AFib and CHF. Not good news for a new mommy. I have sinced learned what exactly heart failure means. I have been cardioverted twice and ablated twice. August 25, 2009 I was at home and experienced the fastest heart I had ever felt and past out. Thank God my heart never stopped. I became sick which knocked me out of the Vtach. this was my first episode of Vtach. I was admitted to the hospital for observation and thank God I was there the next day when I went into Vtach again. I was implanted that afternoon. It has since proved to save my life at least twice. I have been shocked twice since implant. The second one being last Friday. This has not only be tough for me to deal with but my five year old son saw the first attack and had a difficult time with it. My children and my husband are the most important things in my life and I pray everyday to remain here with them. I now take 180 mg of sotalol and hope that this works since I don't think it can be increased much more if any. Still coming to terms with this and trying to figure out my new norm of life. Not only me but my family too.

I am thankful for this site to be able to share and learn from others.
Tammy
Medtronic implant 8/26/09
Sotalol 180 twice daily
"It is what it is"

vininola56
Posts: 11
Joined: February 11th, 2010, 9:04 pm

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Post by vininola56 » February 12th, 2010, 5:46 pm

Hi, my name is Vininola56, I am 57 years old, I was diagnosed with Brugada Syndrom on Nov.11, 2008. that is the same evening that I had the icd implanted, immediately after my testing was done, and I was awake., it was so cold. No,shocks yet, every thing has been fine so far. I am a widow and the Mother of one child, a son, a Grandmother of four.

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samaritis
Posts: 10
Joined: February 12th, 2010, 2:16 pm
Location: Rhodes,Greece

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by samaritis » February 13th, 2010, 6:01 am

Hi,I'm Attila(not the Great Hun)46 years old and I live in Rhodes a beautiful and one of the most popular tourist destinations of Greece.
I'm a new bee ,my Icd was implanted on 7th January and I'm glad to see so many people sharing their experiences!!
Best regards from Greece!!
RED CROSS-RED CRESCENT
PROTECTING HUMAN DIGNITY

Doug
Posts: 24
Joined: February 13th, 2010, 3:06 pm
Location: D.C.

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by Doug » February 13th, 2010, 6:51 pm

Hello.

I'm Doug. I was diagnosed with hypertrophic obstructive cardiomyopathy (HOCM)in October of 2009. With a family history of sudden cardiac deaths before the age of 50, the specialist I am being seen by thought it would be prudent for me to get an ICD as a primary prevention. I didn't argue about the merits of that notion.

So, as of January 20th, I have a Medtronic ICD onboard. I'm relieved to have the protection. I like to say that I have gone "bionic".

My wife and I live in the suburban Washington D.C. area. We just finished shoveling a lot of snow.....I know, I shouldn't be doing that, but we had no choice. curserrr Our snow removal service we hired before the storms decided they couldn't do our driveway after all. I hope my ICD is more reliable than that! LOL

I am 52 years young and am working at becoming a free lance writer. When I am not shoveling tons of snow, I am enjoying having 4 seasons again after 9 years in warmer climates. Every cloud has a silver lining.

I look forward to posting and catching up on the goings on here with my fellow ICDers. Warm regards, Doug
Hypertrophic cardiomyopathy
ICD 1/20/10
septal myectomy 8/25/10

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carrob
Posts: 15
Joined: February 13th, 2010, 9:30 am

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by carrob » February 14th, 2010, 10:28 am

Hi everyone !

My name is Carla. I'm 41 years YOUNG and I'm now the proud owner of an ICD, just 72 hours old.

I was diagnosed 6 years ago, at 35 years old, with Dilated Cardiomyopathy (EF 20%) and here I am. It started with the classic "bronchitus" symptoms that my hometown hospital totally missed. The biggest devestation of this diagnosis was that me and my hubby had only been married 8 months and were thinking of starting our family. That came to a screeching...very painful....halt. After many, many tests and many, many 2nd, 3rd, 4th, 5th.....opinions with many, many cardiologists, high-risk baby docs, etc, I had a hysterectomy and had to accept the cross I had to carry.

Otherwise, I've lived my life to the fullest....with my EF recovering into the 35%-40% range in 2008. However, I started feeling bad during the holidays in 2009 with increase fatigue and wild PVC's. It was determined that I've slipped back to 30% and have wicked, random beats that now put me at risk for SCD.

So, I've cried AGAIN for 2 weeks and here I am. The anxiety leading up to the procedure was much worse than the actual procedure.

I've lurked around here for a few days now and look forward to being a part of this family.
(¨`·.·´¨)
`·.¸ Carla

Dilated Cardiomyopathy since 2004. St. Jude ICD implant, 2/10/2010.

The best things in life, aren't THINGS !

vininola56
Posts: 11
Joined: February 11th, 2010, 9:04 pm

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by vininola56 » February 17th, 2010, 10:36 pm

icdadmin wrote:Use this thread to introduce yourself at "ICD Support Group".
hello everyone, my name is Vi, I am 57 years old and was diagnosed with Brugada Syndrom November 11, 2008, also had the icd implanted right after testing. No shocks as of yet, Thank God. Wondering what it will feel like. I am retired/disabled. I stay busy with church,family and grandchildren. I have one son,36, he's been tested and so far so good. I know he has a fifty percent chance of getting this, I'm almost 60 and it just showed up in me. I am the 19th child my mother gave birth to and am the only one with it so far. I am the youngest. All and all I'm doing well, worried about hot flashes.

vininola56
Posts: 11
Joined: February 11th, 2010, 9:04 pm

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Post by vininola56 » February 21st, 2010, 9:24 pm

Hi Maxine. My name is Viola,better known as Vi. I have had my icd for about 15 months, I'm knew to this sight, Ilook forward to learning more about all this and I would like to get to know more abot you and your family.

steve.heather
Posts: 1
Joined: February 22nd, 2010, 3:02 pm

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Post by steve.heather » February 22nd, 2010, 5:01 pm

Hello

I'm Steve. I live in Vancouver, BC Canada (where the winter Olympics are on now). I was diagnosed with Arrymthmogneic Right Ventricular Cardiomyopathy about 2 weeks ago. Despite feeling almost normal, the EP convinced me I was at high risk of SCA and so I had a Medtronic ICD implainted. So far, only 2 weeks in, no shocks. I am on Sotalol 80 mg 2x daily--no noticeable side effects, perhaps a little fatigue.

The biggest issue for me is how having ARVD and ICD will impact my lifestyle. I have always been quite active engaing in a number of sports, especially cycling. Vigorous exercise aggrevates ARVD so I know I will need to modify my acitivities but don't know yet what the right level will be.

I am sure I will have lots of questions as time goes on so glad to have found this forum.

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TruckerRon
Posts: 2919
Joined: February 22nd, 2010, 8:52 pm
Location: Provo, UT

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Post by TruckerRon » February 23rd, 2010, 2:39 am

Like some of you, I've changed careers a few times.

I used to be a technical writer (almost 20 years) until the tech bubble collapsed, so I got into truck driving and had 7 great years making decent money and exploring this beautiful country. Unfortunately I had to quit driving in December of 2008 because of back problems due to scoliosis. My weight was at 270 lbs, and I had developed lumbar spinal stenosis -- a narrowing of the inside of the lower spine causing pain and numbness in the legs.

So, I was going to the rec center 3 - 4 times a week, riding a recumbent exercycle, slowly losing weight and preparing myself for back surgery and, if all went well, getting back into the truck. On 12 September 2009, at age 56, with my weight down to 240 lbs, and apparently otherwise in good health, that all completely changed.

I was walking past some metal bleachers in my youngest daughter's karate school. The next thing I knew, it was two days later, before dawn, and a nurse was pleading with me to quit fighting her, that I was in the hospital, and that I'd had a heart event. Obviously I'd missed out on a few details...

I had collapsed, clipping the bleachers with my head and scaring a lot of people. One man immediately took charge, determined I had no pulse, and started CPR. A woman called 911, but the lead karate instructor managed to run about 100 yards to the nearby fire station and get the EMTs halfway back to the school before the 911 call was relayed to the station.

The EMTs determined I was in ventricular fibrillation and applied the paddles. The written reports state that I resuscitated on the second shock and was almost immediately able to answer most questions. My wife says the rest of Saturday and all of Sunday I was responsive but confused as to what had happened. I couldn't retain new information for more than 3 - 5 minutes. Happily that confusing state ended when I fully awoke on Monday morning.

The reports show that my arteries were clear (yeah!) and that I had idiopathic dilated cardiomyopathy with an Ejection Fraction of less than 20%. So, that next Thursday I got a Medtronic ICD. Over the next 4 months, between the ICD keeping my ventricles in sync and the heart medicines, my EF has improved to 40%.

(BTW, I know that "idiopathic" means "unknown disease," but I prefer to interpret it as "we're idiots, and this is pathetic, but we don't have a clue!")
Ron.jpg
So, my driving career is now definitely over, and I'm having no luck at all finding even part-time work to support my wife of almost 30 years and our 3 mentally handicapped daughters. The only good thing about this situation is I have time to focus on the patients I interact with at the state mental hospital where I'm training to certify as an associate clinical chaplain.
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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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