Welcome rogue2ironman (Cory)

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freckles1880
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Welcome rogue2ironman (Cory)

Post by freckles1880 » April 8th, 2016, 5:16 pm

rogue2ironman wrote:Hi all,

My name is Cory and I'm 27. A week before my birthday this year and after about 2 months of different doctor visits, I found out I was diagnosed with HCM... Needless to say it was the LAST thing I was expecting when I first walked into the walk-in clinic hoping they would tell me that I was just out of shape and healthy enough to work out (the whole reason I went there anyways was because I wanted to get back in the gym after nearly a year of not going.. and I was having heart pain and fainted a couple times.. so I figured I might as well just check in with the docs to make sure it was all fine). I was embarrassed to run, or bike, or even hike with my friends because I had to stop so often from the pain.. They'd all just kinda laugh and tell me I was out of shape but I felt like I might have a heart attack.

With my EP, Cardiologist, General doc, and my cardiomyopathy specialist doctor all in agreement that I needed the ICD.. I had the surgery last week. I'm just finding myself SO frustrated and angry with it all. I'm tired of being tired.. I've been an athlete my whole life.. walking up the stairs to get to work shouldn't leave me so short of breath I have to stop in the bathroom so no one sees and put my hands on my knees.. not to mention the sharp pain from my outflow obstruction.

I'm not really sure why I turned to this website to be honest.. guess i just thought that it's nice to know so many others feel what I feel every single day. I've always been a really happy soul and the past couple months I've found that I don't feel happy anymore.. I'm frustrated with my heart and now I'm questioning my decision to get the ICD.. I hate it so much right now but I tell everyone I'm fine.

Am I going to feel this thing inside of me forever? Does anyone else's heart kind of hurt from where the two lead wires are?

It's been comforting reading your stories..

-Cory
howdywelcome :armdown: until the doctors say you can raise it. Do use the arm, just don't go above your head.
I hope the reason you joined us was to find out how we cope and where you can ask questions and answer others questions.
I sure you have researched HCM and here is a short explination from WEBMD:
"What Is Hypertrophic Cardiomyopathy?
Hypertrophic cardiomyopathy (HCM) is associated with thickening of the heart muscle, most commonly at the septum between the ventricles, below the aortic valve. This leads to stiffening of the walls of the heart and abnormal aortic and mitral heart valve function, both of which may impede normal blood flow out of the heart."
You can find more at this link HCM!

Your ICD is still very new and I am sure you have some pain, not too much I hope. I have had my unit for over 7 years and can feel the wires (leads) but they don't hurt.

Getting tired without doing much appears to be from your condition. Hopefully you will get relief from the ICD and proper medications. Once you go for your checkup in a few weeks DEMAND cardic rehab. That will get you into exercises you can do and things that should help improve your overall health.

Please read a lot on here and start a list of questions for us and for your medical team.

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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Michael L
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Re: Welcome rogue2ironman (Cory)

Post by Michael L » April 8th, 2016, 5:46 pm

First, welcome! Sorry you had to pay the price of admission.

Think of your ICD as a safety device to help you if your heart decides to take an unauthorized break!

Yes, some days we suffer from the shortness of breath you decide, as many others here do. But some days i don't notice it at all. You will adjust. Remember, last week you were put under, a hole cut in your chest, some wires shoved down into your heart and screwed into the wall of your ventricle! It is going to take a little time to get your strength back!

Remember also, that the medications they give us can screw up your system; usually you adjust with time. Sometimes, you need to work with your medical team to adjust those medications to what works for you!

Start out slow, but keep going!
Biotronik Ilesto 7 implanted May 5, 2014
CABG 3X February 1998

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TruckerRon
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Re: Welcome rogue2ironman (Cory)

Post by TruckerRon » April 8th, 2016, 5:47 pm

Welcome to a club no one wants to join but usually benefits from.

Given the number of young athletes who drop dead every year from HCM, you've managed to beat the odds by responding to your body's signals. Now you need to find another specialist, a counselor with experience in helping cardio patients learn to live with devices and drugs that few had heard about until their hearts suddenly got sick. We usually recommend looking up this guy:

http://www.ecu.edu/cs-cas/psyc/searss/

You can also go to the website his department has up:

http://www.ecu.edu/cs-cas/psyc/cardiacpsychology/
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
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Re: Welcome rogue2ironman (Cory)

Post by Ozchrissy » April 8th, 2016, 8:45 pm

Hi Cory, firstly I am so sorry you have this crappy disease. I have had Dilated Cardiomyopathy for 16 years, and there are others on here with HCM. I am sure they have put you on a fistfull of drugs as well as the ICD, and given time they should help to ease your symptoms. I was like you, thought I was unfit and had a chest infection before my diagnosis. It was very frustrating.

At your age it is a big shock to realize this has happened to you and that you are not just going to be able to get over this quickly. Unfortunately with the muscle disorders with our hearts, which the cardiomyopathy's are, it does take time and effort. But the drugs we have currently are really good at giving us better chance of improvement. The ICD, unless it is a 3 lead or biventricular, CRT-D is really only a preventative device. It will save your life if you go into a bad rhythm, mainly Ventricular Fibrillation, but really will not affect your overall heart performance.

It will take time for you to come to terms with your diagnosis, but take each day as it comes. It is a shock, we are faced with the reality that we are mortal and the things we thing happen to other people are actually happening to us. If you need counselling or happy pills to help you get through with it all, please do not hesitate to ask professionals for help. Often the Doctors involved with Heart matters tend to forget about the psychological aspect of the disease, but it really is a big life change when we are diagnosed. You will have a future, you will improve, so just make sure you take your time and be gentle on yourself.

Of course we are here, there are others on here with HCM, and this type of cardiomyopathy tends to hit people at a younger age, so some of our members have been living with this for a lot of years and their input will also be invaluable. I am sure they will be along to offer their insights.

Thinking of you my dear young man, just be gentle on yourself and give it time. We will be here for you to shout out to, or at, or to vent with, and just listen if needed.
“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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Leah
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Re: Welcome rogue2ironman (Cory)

Post by Leah » April 9th, 2016, 8:32 pm

Hi Cory
I had my ICD since i was 21. Now am 35 soon to be 36.

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mrag
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Re: Welcome rogue2ironman (Cory)

Post by mrag » April 10th, 2016, 3:35 am

Hi and welcome Cory. Keep in mind you have TWO issues. The HCM and the relatively minor, temporary annoyance of a new ICD. In MOST cases, the ICD is like getting a tooth capped. Once settled in, you forget about it and you can be comfortable knowing the tooth won't crack. With the ICD you won't suddenly drop dead. Normally implanting an ICD is fairly straightforward, a relatively minor inconvenience and in six weeks or less, just a small bump on your chest. Note my use of the words 'most' and 'normally.' Unfortunately, not always the case. However, for now I'd concentrate my research into HCM.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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David882
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Re: Welcome rogue2ironman (Cory)

Post by David882 » April 10th, 2016, 9:17 pm

Welcome aboard but sad to see that you have already paid the price of admission.

I suggest that you get a notebook.
1] Wrtite down all your questions.
2] Us the notebook to ask the Dr your questions and record the answers.
3] Take notes in it or journal in it but this can help you get your head around the whole situation.
4] something keeping you from sleeping, write it down in the notebook and deal with it tomorrow.

you don't know why you came to this board...does that matter?
I suggest that what matters is does this collection of misfit toys help you work it out.
Of course we do have one normal person...watch out for that one.
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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KansasAl
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Re: Welcome rogue2ironman (Cory)

Post by KansasAl » April 10th, 2016, 9:54 pm

Cory - Hi

I've had my ICD since I was 53 and like Leah, I'm going to be 36 next month also.

Best wishes. Alan

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Melissa
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Re: Welcome rogue2ironman (Cory)

Post by Melissa » April 11th, 2016, 5:55 am

I was diagnosed at 31 and had my ICD implanted at 37 and now I am almost 43. I have cardiomyopathy due to chemotherapy, but with the ICD I am healthy enough to exercise all I want. I do cycle classes 3 days a week and run 4 miles 3 days a week and take one day off. There is hope you can get back to exercising as well!
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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ROBO Pop
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Re: Welcome rogue2ironman (Cory)

Post by ROBO Pop » April 11th, 2016, 11:27 am

Not to usurp a thread, but great to see you Melissa. Hope you are doing well.
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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Melissa
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Re: Welcome rogue2ironman (Cory)

Post by Melissa » April 12th, 2016, 5:52 am

Thanks Robo! I don't post much but lurk quite a bit......been following your saga and keeping you in my prayers!
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

slk123
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Re: Welcome rogue2ironman (Cory)

Post by slk123 » April 13th, 2016, 8:08 am

You've been hit over the head with a ton of bricks, and to be so young, too. You'll go through a number of emotions before it starts to settle in. The time for it to settle in differs from person to person. Hang in there!

I, too, was an athlete in high school and college and worked out a lot. I'm not 27, I was 45 when I had my SCAs and ICD implanted. All I can say is, even though I didn't like the fact that I needed the ICD, I was happy to get it. I am 47 and have 5 beautiful children ages 4-12. I might not be able to run around with them for as long as I wish, but I'm here with them. I get to help them grow up and watch their successes. Just recently my 9 and 12 year olds competed in an international karate tournament and I was able to not only help them train and get mentally prepared, but I was there when they proudly accepted their 3rd place medals!

I look at life differently now, and yes it took and is taking sometime to get there. Let your emotions run wild, allow yourself to feel what you are feeling, but hang in there. It will get better!
Best wishes,
Stacey

CHF Jan 2016
ICD Nov 2014
LBBB Nov 2014
Sudden cardiac arrest Nov 2014
Arrhythmia Aug 1982

rogue2ironman
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Re: Welcome rogue2ironman (Cory)

Post by rogue2ironman » May 11th, 2016, 10:15 pm

Hi all,

Sorry for my delayed response, thought I'd take a beat and think everything though. I want to first thank you all for your responses and advice. Now that I'm 6 weeks post surgery, I'm actually starting to feel and think a lot better.

I think my frustrations stemmed from knowing that the ICD wasn't going to do anything to change my chest pain or shortness of breath.. and that is what I wanted immediately fixed. I guess that's what I thought I deserved after seeing multiple different doctors like 15 times since january. I now realize that this medical journey is going to be a marathon.. not a sprint. I had a syncope spell like 5 days after the surgery after only walking up one flight of stairs, so I called my HCM doctor and asked the nurse to up my dosage of the beta blocker to help with my chest pain and lightheadedness. It's kinda working.. but it also makes me pretty tired.

I'm choosing to improve my attitude every day and making conscious decisions to not be mad when I'm short of breath or if my chest hurts after walking up one flight of stairs. It's helping day by day.

I've got a stress echo on Friday to measure the gradient of my heart and see if the increased dosage of the beta is helping at all. I can tell that it's not a huge improvement but it's a little better.. we'll see what the doc says. Hopefully I don't get my heartbeat over 220 during the test.. otherwise I'll feel the shock I'm dreading.

Anyway, just wanted to say thanks again for the support and kind words.

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