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Fear of another SCA?

Nutbeem
0 Recommendations

Hi everyone - since we're members of a pretty exclusive club, I'd love to hear your thoughts.

I'm about 16 months from my SCA, and I'm sitting here amazed about how little I think about it. I'm raising my kids, working hard, and planning for the future.

All of that could change in an instant, ICD or no ICD - the shear shock of another SCA would probably set me back a year or more.

I guess the question is, do you think about another SCA, or do you do what I do, which is tuck it way back in your memory and go on with life?

Rick

Explore topics in this discussion:

Exercise Counseling Anoxic brain injury Cardiomyopathy Anxiety Crestor Heart attack Memory Depression Stress

36 replies

Jamesrochelle

I have the same story I continue to think of mine as a fluke since it didnt happen until I was 29 and no signs of it before that. A second one would make it all to real and -zap- me out of this 'denial' literally. I have yet to feel my ICD shock so that would be a real eye opener to realize that without this machine I may have just died...

andybelfast

Guys,

I'm a 'Newbie' and know that I'm lucky to be here. I had my SCA on 12th May 2009 it caused me to crash into a house whilst driving home. I had debris all around me and was only saved by local people giving me CPR and the ambulance team and fire service shocking me back. I needed a triple bypass and everyone felt sure that this was the cause of my SCA. However, I had an Elecrophysiology test on 21st Sept which triggered another SCA. My specialist fitted an ICD immediately and I'm so glad. I think about my SCA all the time, I hope this will decrease as I become more confident.

Regards,

Andy

costello

I have to say, that my ICD has saved my life several times from another SCA. The doctors have always said "you'll live longer than me" We have to figure out (and the doctors too) what is causing the SCA, my ICD has finally been adjusted along with the proper medication and numerous specialist I haven't had an incident since Feb 09 (Had my ICD Sep 08/SCA May 08). Know what your limits are your body will tell you the rest, I found out the hard way. Take care and God will bless you!!!

SHALE

Lsimmons31: Your post wasn't too long for me! It was most encouraging as I've often wondered who on the list holds the record for the longest time since a SCA event.

As everyone, I am aware of the "statistics" that emphasize how fortunate we survivors are to have made it through at all. I was 69 when I suffered cardiac death 2 1/2 years ago. I've been less fearful since the ICD implant just over a year ago but still suffer from limited stamina and energy. I was told that 1/4-1/3 of my heart muscle was permanently destroyed and I'm on so many prescription medications I wonder if those interactions are affecting how I "feel".

I'm thankful for each member's posts and the Association which makes them possible as I have found many answers to my "wonderings".

Susiebonnie

Hi there
I have just joined this group so am still feeling my way around..............I had my SCA on Friday 13th Feb 2009 (i will never look at Friday 13th in the same way again)!! and to cut a long story short was fitted with an ICD the following Thursday. After the intitial shock and soreness had gone I was left with this what if ? feeling but even that now is getting less than it was, my only apprehension now is getting back to driving, here in the UK we are banned from driving for six months following a SCA and although I am desperate to get back to driving and regaining my independence I am very worried that something will happen whilst behind the wheel..............what are other peoples experiences of getting back to driving ? so nice to have found this group and be able to discuss problems with people who have first hand knowlede

Nutbeem

Andrew, what a story - so you were by yourself, and your neighbor found you? Amazing!

I don't know about not getting an ICD, though - I'd question that one in a big way. If you don't know why it happened, then theoretically it could happen again the same way. How is an ICD not an option?

The ICD, even though it hasn't had to do anything yet but be annoying, let me get my life back a lot faster than it would have - within a couple of months I was back on business trips, running, etc - all the stuff of modern life. If I didn't have that ICD, I would be thinking a lot more about being by myself.

But back to Andrew, so glad you're here - you should get those dogs a new luxury dog house!

wdiane

Hi, Everyone, My husband had an SCA on May2nd so I am really new at this. I think about it every minute of every day but it has only been 2 months. He was in a coma for two weeks and then he just woke up! During those two weeks I really thought I was going to lose my best friend and I didn't want to be a widow. But he is now on the mend and the dr's are all amazed at how well he is doing. He completly trusts the ICD so I don't think it is on his mind too much. He has been on his first bike ride(this happened while he was riding his bike!) and we have gotten him a new helmet. I am getting used to him returning to "normal:.
Diane

Andrew1

My SCA occured on March 9,2008, and its with me about every day. I still like to discuss it with my wife as she too still needs support. She has more anxiety about my condition than I do. I too was not fitted with ICD which I hope is a good sign. We celebrate every March 9th as my new life began. One year and counting.

Nutbeem

Hi there - glad you're here and still with us, as are your little ones (I can certainly relate!).

Two things: another SCA is NOT "most likely" - in fact my EP said I would likely go the rest of my long, normal life without every being shocked. If a shock comes, I'll freak out for a few weeks, then get back to it. It beats the hell out of the alternative.

Second, a few months from now, you'll be largely back to your normal life. You're a busy mom, and you'll be back to your routines, and problems of the day. If you're like me, you'll still think about the possibility a few times a day - it seems like we all still do - but there's too much life to live to get hung up on it.

Enjoy your days, and enjoy your family!

Rick

sgriggs89

Like you, Nutbeem, I can't seem to shake the implications of another event. After only 3 months since my first event, my greatest aspiration is to be like those folks who have gone over 20 years without a recurrence, even though I have to accept the reality that another occurence is most likely. There is even a twisted part of me that would like to go ahead and experience one, sort of like avoiding the childhood anticipation of waiting for a spanking that would be certain once my dad came home from work! Even though I'm immersed in caring for my 2 young children, I think about it often. Any advice you can offer for a "newbie" like me would be greatly appreciated!!!

Nutbeem

Yes, yes and yes - I can truly say I know exactly how you feel.

It took me two or three months just to feel physically normal enough to go out and start running again, but my EP was all for it. They set my ICD for 220, told me to buy a heart monitor, and hit the road.

Now I'm back to my normal routines, feel perfectly normal. The only concern with basketball would be an elbow to the ICD site which would hurt like hell, but it's a small price to pay to feel normal again.

Great story, glad you're here.

isufan

Hi Everyone, I'm new to this and it's great to hear some other stories. I excerienced SCA while playing basketball on February 16th, 2009 at the age of 49, my ICD was implanted on February 18th. I was so lucky that one of the players knew CPR and performed it for seven minutes until the EMS's arrived, the doctor's called it a miracle that I have no brain damage. It's been three months and I proabbly think about more now then I did in the month following the event. I just can't believe it happened to me, it doesn't seem real now that things are pretty much back to normal. I remember that I was playing basketball then I woke up in the ER and they let my wife and two kids (11 &14) come in to see me. I will never forget seeing them for the first time, I think they are the reason God saved me. I love to play basketball and the group of guys I play with have been together for years. My cardiologist says I can try to play again next week and they will get readings from my ICD monitor to see how my heart is handling it. My friends say to not take the chance but I'm just stubborn enough to want to take my chances and try to live life to the fullest, I'm not going to die from it. I really don't worry about getting a shock but I do look in the mirror every day and think how amazing it is that I'm not six feet under.

maureengraz

Gene,
Do you qualify to get an AICD? Just curious.
Maureen

Mary1

Hi Gene,
I would think it would still be quite scary, even after all the changes you have made. I hate not knowing what caused my SCA.
I'm glad you were able to make the changes you did. It must be difficult.
:-)
Mary

EugeneJohnson

Mary,
No, they never really determined why my good heart had this electrical failure!
The fact that...I did have blockage (quadruple bypass) put alot of stress on the heart... also I was in full physical exersion at the time ( laying 40lb rolls of sod)...I WAS a smoker ( five little cigars a day)...and my diet was terrible!
All of the above probably lead my heart to go into VF ( ventricular fibrillation).
They told me I had an... Idiopathic dialated cardiomyopathy! That means "We don't really know why this happened and it certainly could happen again BUT... Because of the the quadruple by pass, an extensive rehab and regular exercise, a much better diet, and remaining low doses of atenynol and Crestor, the chances are quite slim of another occurance.
Like I mentioned earlier, I bought the AED as my pacifier for my family and friends. It will only be useful as long as I let everyone know that I have it at home or along with me as I wander the earth! So far, it has not been called for ...I am fully trained in CPR/AED usage and it could also be useful in saving a life that crosses my path ! I keep it quite handy!
Gene

Nutbeem

Mary, what a great story. I love the fact that you're 22 years on - that will put me in my early 60's!

There is a LOT of life left to live, but the SCA has certainly deflated the feelings of invincibility that I think every man has up to a certain point in life. I know that anything can happen anytime, and I try not to sweat the small stuff anymore.

I think as soon as I get my last kid off to college, I'm buying a Harley and hitting the road with my wife - you better get busy living, or get busy dying!

NWWriter

Hi.
I'll be 22 years post-sca in July of this year. The one big incident I had occurred at the age of 35 while I was playing softball with friends on a field that was just around the corner from a fire station.
There were two inventions that, at that time, were considered "new and experimental". One was "car phones" and the other was "AICD's". That fact has helped me understand that life is new every day and I'm not in the same world I was in yesterday.
It took me about two or three years to get over the "uh-oh...what if..." anxiety of survivorship. Initially I was told I couldn't drive AND I had to take the magnets off my refrigerator. As the mother of two young children I don't know which one of those restrictions was harder to contemplate living with "forever".
As for anxiety, I had to work to get my mind to stop re-living the SCA. My anoxic brain injury helps me forget on a short tem basis ;) but it also sabotages my ability to keep forgetting on a long term basis. I learned that putting in a substitute thought is more effective in forgetfulness than just trying to forget alone. "Forget about it" works with some things, but let's admit it, it's pretty unrealistic to "just forget" about dying, eh? I got busier and that helped me begin setting it aside. But after all these years I've witnessed so many people who've had to overcome clinical depression after SCA that I'm a firm believer in getting checked out if you're not "right". And don't let the doctor get away with quick, condescending dismissal of your concerns. Keep going until you're heard.
This Saturday I'm going to donate a pint of blood at the blood bank. That pint will be the topper to the eleventh gallon of blood I've donated since 1988. Donating blood was one of the first efforts I made to "give back" and just that focus helped me see what I have right now that I'm grateful for. And that's helped a lot.
I'm on my seventh ICD battery and the current one is starting to run down. The batteries are replaced SO far in advance that I've learned not to worry about them going dead. ha! no pun intended! And, fyi, the ICD "beeps" at you when they're low, so if you don't hear a beep, you're ok. And if you do hear a beep (and can't find the source of the beeping in ALL your household smoke alarms!), relax and call your cardiologist.
I've found that there are moments post SCA that really are funny if I just help myself get out of the anxiety, and this web conversation is a great tool in doing that. Keep in touch!
Mary

maureengraz

Thanks, I will.

Mary1

If you are interested in helping to raise awareness, a great place to start is by contacting your local chapter of the American Heart Association.

Mary1

I still get teary-eyed whenever an ambulance races by.

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