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Still Beating!

gtrogers
0 Recommendations

hi all! I was so happy to find this site. My husband was watching hockey the other night and a commercial came on about SCD and how only 5% of the victims survive and told about the website.. my poor husband just looked at me with tears... I have always wanted to talk to people that have been through this experience and survived so here is my story....

I was a healthy 46yr old female only on a very low dosage of Synthroid no other medications. Went for my yearly exams did everything I was suppose to. Then on Feb. 28th 2007 I got in the shower at 5:00 a.m to get ready for work like everyday.. I had just put the shampoo in my hair and all of a sudden my arms were weak and hands were tingling.... I wasn't sure what was happening and I think a bit of anxiety kicked in which I have never had a problem with before. Of course I had to get the shampoo out of my hair. My chest started feeling like someone was standing on it and extreme pain started. I yelled for my husband and he took one look at me... all he said was do I need to call 911 and I said yes. I got out of the shower and waited for the paramedics. It seemed like hours not minutes before they got there. I was having a hard time breathing and couldn't explain to them what was happening except for I was in terrible pain. They just kept telling me to breath and pretty much said I was having anxiety. I knew better... They did finally put me in an ambulance and told my husband to take his time getting to the hospital they had to hook me up to monitors etc.. Not sure what they gave me in the ambulance but the pain pretty much went away and I was talking to the paramedic.... All of a sudden he told me to lift my tongue and he gave me a nitro pill. That was it. I remember telling him I felt weird. Then it happened. The next thing I remember is hearing him telling me he was trying to help me and stop fighting him. It was like I was in a dream and trying to wake up. When I finally opened my eyes i had pulled all the wire's out of my arms and was in fight mode... Then he told me what happened. I went into V. Fib then cardiac arrest. He said he paddled me twice and cpr for about 30 seconds... This all happened in front of my house. They took me to the hospital. I can't count how many times and how many people told me I shouldn't be here, I'm very lucky, someone was watching over me....I was in ICU for 5 days. I had numerous tests and my heart and arteries are fine. They put in my ICD on March 3rd 2007. I have seen 3 cardiologist since and they all tell me the same thing.. We don't know why this happened. They say it is the electrical part of my heart, lucky to be here. Now a yr later I'm on numerous meds. Feel exhausted all the time. 3 weeks ago I was in Atrial Fib. More medication.. My device has never done anything thank goodness. I hear that is not a pleasant feeling.. I will stop for now. Feels good to write this all down. Hoping to hear from people going through the same thing....

Explore topics in this discussion:

Exercise Heart transplant Tylenol Sudden cardiac arrest Lopressor Anxiety Menopause Coreg Stress Xanax Dizziness Hormone therapy Coumadin Fever Cardiomyopathy Synthroid Pain Memory Mental health Depression

21 replies

ckgoduto

I'm glad you did find this site. Welcome. it is very informative and you can "Vent" all you want. We all understand.

I was diagnosed with cardiomyopathy in 2006 and had a BiVentricular Unit implanted on 4-21-08. I feel so much better now. I used to dread the thought of Sudden Cardiac Arrest, but now I feel a lot safer.

Your heart sister,


Christine

NWWriter

Glad you made it here, G! As I read your story I had the urge to grab that emt and smack him across the back of the head. I hope somebody did it for me when they heard his story!
I had my SCA in '87 and haven't had any V-fib or symptoms since.
One thing I wish were different with ICDs was that we could have the benefits of an MRI. It's a diagnostic tool I've needed a couple of times, but no go.
Mary
SCA 7/16/87 while playing softball behind a Seattle Fire Station.

gtrogers

Thank-You for your reply.. It sure is nice to comunicate with other people that know about SCA. I kind of felt bad for the EMT after the fact.... I think he was scared! He told me that he had been an EMT for 25yrs and I was the second person that did that to him.....I'm just greatful he was paying attention when it did happen. Since I'm a new user to this website can you give me any tips etc... Thanks again,
Terri

gtrogers

Thanks for your reply.. I keep waiting to feel better. I think it is mainly the meds. I'm on. My device doesn't bother me, except for the size. I had know idea when they told me what they were going to do. I hope by the time my battery dies they will have something smaller!

Terri

Noreen

Hello,
I did NOT have a SCA, however , I was a breath away from it !
My symptoms began just about 2-3 months prior to 10/09/07
I live on Long Island , New York
I went from physician to physician complaining of palpiations, hair loss, wt loss and cold intolerance. I thought, OH...classic thyroid, was cleared by endocrine. Thought perhaps peri-menopause as I am in mid 40's and I had a significant change in menses. I was cleared by gyn. (sort of it is still on the table that this may be hormonal related !!!) and a specialist in menopausal women who was my 2nd endocrine consult.

I presented to the ER on the later part of Sept on the w/e with complaints of shortness or breath, light headedness and fluttering as well as palpitaions in my chest. All tests were normal. (EKG, Chemistry) The ER physician thought maybe panic attack or anxiety. I knew it definitely was NOT. He referred me to my PCP (Primary Care Physician on Monday)

I went to my PCP the following Monday, he put on a cardiac holter monitor wihich really did not show anything too much, perhaps a few skiped beats.
He then sent me to the cardiologist , the appt was the following week, and I had an echostress test. , which again was normal with a good ejection fraction, toleration for exercise..... the next day my physician callled to ask how I was feeling, I told he I thought we were missing something and that I was concerned as I was still experiencing these palpitations which were worsening.and I did not feel well and was more anxious. He suggested Xanax and to call him if things worsened. I called the next morning, made an appt. to see him ASAP, I drove and walked into his office and said "Look at my chest , you can actually see my heart pounding , thrilling !" He did an EKG right away and RAN DOWN THE HALL , as the nurse stayed with me, and called 911. I was transferred to the ER with V. TAchy. My heart rate was over 300 , I believe it was 360 !!! I was stabilized in the ER and transfered to LIJ Manhasset. I had a cardiac MRI , an EPS study and EKG's. They were not able to replicate the tachy. It was strongly recommended that I have an ICD placed immediately.

I requested a 2nd opinion, actauly from my preferred hosptial of tinitial transfer from the ER I really wanted to go to St. Francis. which is well known for specializing in heart/arrythmias... I was transfered via ACLS with paramedics being worned by N.S. Manhasset that I may die if I left their facility. On arriiving to St. Francis, I did have a rapid response issued and was placed in CCU. I was bed restricted and continually monitored and was experiencing multiple runs of v. tachy. and some sustained v. tachy. which thankfully broke on their own.

While at St. Francis I had a 2nd EPS which also was not able to be replicated . It was all agreed upon that an ICD was imperative. I had the procedure the next day, and d/c'd the following morning. 2 days later I was complaiing of reoccuring multiple pvc's/palpitations , had a temperature of 101.9 and some coughing and shortness of breath. I called the doctor on call because of course this again was a w/e. He suggested taking 2 tylenol and if the fever did not break to go to the e.r. or if I had chest pain to go to er. After 2 hrs. and worsening pvs's I was fearful the ICD would fire , left for the ER and called the doctor to inform him I was on my way in and to notify the ER at St. Francis. I HAD THAT ICD EXPERIENCE ON DC WHEN THEY TESTED THE ICD .....WOW THAT REALLY HURTS.

I wazsreadmistted to St. Francis with v. tachy and multiple pulmonary embolisms *blood clots in my lungs *perhaps from immobility for those CCU days and the multiple procedures. I was put on Heparin & Lidocaine drip, I was tapered onto coumadin by mouth and my Sotalol was increased.and was dc'd.

Since then I have had 2 episodes of VENTRICULAR STORM 11/09 & 11/30 of 2007. The first I had 5 ICD firings , how scary is that, a floppy fish when all was said and done......and scared. My meds were changed. I had an increase in Sotalol (Betapace) and Lopressor. The second was 3 firings and then my meds were again changed to now dc the sotalol and put me on amiodarone, continue the coumadin for the PE's and Lopressor in addition I was also Rx'd and anxiolytic for my anxiety. I am not happy with amiodarone but right now that is the choicee.

I was referred the NY Presb. Cornell for a consultation and then referred to John Hopkins for a 2nd opinion and to rule out for certain genetic disorders for certain: ARVD and LQT. I am hapy to say I do not have either genetic, and genetic testing is not recommended based on exam findings, extensive family genogram/history and no history of sudden cardiac death in my immediate family.

I am told I have a rare, never seen v. tachy which at times when not controlled goes directly into v. storm and my heart rate goes up to 300 bpm.
Well this is my story. I may continue later. . The recommendation from both NY & Baltimore John Hopkins is to wait a year, settle down, get over the post traumatic stress ordeal and then consider taking me off meds and retrying an EPS for possible ablation.

gtrogers

Finally someone else thinking this is hormonal, perimens.. When I had sca it was actually my 2nd day of a horrible monthly... I even had to stay home from work.. Then it happended the 3rd day! Seems like every month close to the time I feel worse than normal. Just last month around the same time is when I went into A-Fib. Then I get all worked up and make things worse. I have questioned my dr's more than once about this being hormonal and they all told me the same answer, nothing proven about this and they really don't want to talk much about it!

It has was a yr for me on Feb. 28th 07. I don't know why but I'm having a really hard time. Seems like it is just now hitting me?? Everyday I think about dieing ?? Scared of my device going off.. I know it is there to save me, and I'm very lucky to be here. Why is this becoming real to me now? Maybe I was a bit in denial? I have a Dr. appt. next week. May need to go talk to someone. I just keep replaying the day in my head....Thanks for letting me vent!

Darrel

Its quite normal to keep reliving the day over and over, I do an do, and others I have talked to do the same for quite sometime. I am about a year out of my SCA and I am starting to separate myself from it. I dont relive it every day, just a few times a week. Its will get better, we just have to be mentally strong, and one day it will just happen, you will be able to separate yourself.

gtrogers

Thank-You Darrel for your reply. It does make a difference to correspond with people that know what your talking about, feelings etc.. I just thought I was past that point of reliving it everyday but maybe I never really dealt with it in the first place. The last couple of weeks have been really bad. I know I will get through it. There is a reason why I'm/we're still here...

Terri

mery

Hi,

Just joined last week, so I am still reading and finding about the site. That's why this is so much later than the other posts. :-)

I am glad you are still here too! I had a SCA January 4, 2004. I do not remember that day, or even the two days before it. I also can not remember anything until I had been in the hospital for 8 days, the day after they implanted my ICD. I dont know which is worse. To constantly relive the day, or to remember nothing. I feel sort of like a whole week is gone from my life, and I reckon it is! :-)

I remember waking up in CCU, and the first thing I saw was that board that is on the wall with all your info on it. I tried and tried to figure out what it was, then I noticed my mother's name and phone number on the side. It was like another CA all over again when I realized I was in the hospital.

I find it strange that the last thing I can remember before arresting, happened two days earlier. Ahh well, perhaps it is a survival trick, or a help to keep my what mental health I still have.

Mary1

I am glad you are writing about your experience. I think you need to get out your feelings in any way you can. I had my first SCA on July 15, 2006. I had a 2nd one on December 22, 2007. (Thank goodness for the ICD that was implanted after the first one!)

The part of your letter that caught my attention was that maybe you need to talk to someone. I whole-heartedly agree! I talked to a therapist for about 6 months after my first SCA. I was thinking about it CONSTANTLY and even occasionally had thoughts about what it would be like to really die. Once I was listening to a train coming toward our house and I started imagining myself standing in front of it. It totally freaked me out because I never had thoughts like that before. My therapist helped me put the whole thing into perspective. Now I have been able to think about it as something that happened in my life, and something I learned from.

I have also been quite active in my local chapter of the American Heart Association. In fact, I am their "poster child" this year, so I've been doing speeches and even a TV public service announcement. I have always been a fairly quiet, shy person, so this is out of character for me. And I LOVE it!!

I hope you found this helpful. Hang in there. Things will definitely get better!

Mary

Mary1

Hello,
It is so great to be able to talk to people who have had the same experience! I just wanted to share with you that I can't remember most of the whole week BEFORE my SCA, and then I don't remember most of the week following it. It kind of bothered me at first, but I guess I've gotten used to it.
How is your memory in general? I have noticed my short term memory is not as good as it used to be. I often forget things if I only hear them once. I have missed several dr. appts. because I forget they were made and forget to check the calendar. Finally my husband had the idea to get me a Palm Pilot. I check it several times a day and it has made a huge difference!

Take care.
Mary

gtrogers

Hi Mary, Thanks for your replies. I haven't been on this sight in awhile. I keep waiting to feel normal again! I'm sure like you there are good day's and bad. I don't seem to be thinking about what happened to me everyday. I have noticed it is much more during my hormonal times of the month which is usually lasts 3 weeks! Everything that has happened to me has been either right before or during my mens. I have tried to talk to my dr.'s about this and they don't seem to want to go there. I was thinking maybe if I had all my female parts taken out I would feel alot better? Who knows so many questions with this..

I do think I will go speak with someone. Just can't seem to get into gear and do it. That is great what your doing with the Heart Association. When this first happened to me I was looking for support groups etc and just couldn't find any here. Maybe I should contact the Heart association too.... There is no way I could do what your doing, I'm extremely scared to speak in public! Maybe I could volunteer or something. So you have had two SCA? Were you alert when your ICD went off? I'm hearing that it is not a pleasant feeling! Well worth it though, your still here!! Take care of yourself and thanks again for the replies.

Terri

Mary1

Hi Terri,
I'm sure the AHA would appreciate anything you would feel comfortable doing for them. My husband and I have done things like writing letters to the editor, or talking to a reporter for a newspaper article. That's less scary than talking to a large group of people. :-)

When I had my 2nd SCA, I actually passed out before the ICD fired. I got extremely dizzy, and then woke up on the kitchen floor. My husband was at work and my two daughters were upstairs in their bedroom. I got up, not knowing what really happened. The dizziness was gone so I walked upstairs and layed down on my bed. I called the doctor (I spoke to the one on call) and he said I may have had a SCA, but to transmit my info over the phone the next day. Since the next day was Sunday and that Monday was Christmas Eve, I ended up going to the ER Monday just to have the ICD read. My regular doctor came and told me that it was indeed a full cardiac arrest. The whole event lasted about 8 seconds. I did end up taking 6 weeks off from work. I felt tired and sort of dizzy much of that time.
Sorry I wrote so much! I can't stop once I get started.
Take care.
Love, Mary

drjose

Hi everyone,

AHA has several ways to help. Check their website at www.heart.org. I am sure you can find something to do.

We started joining the SCAA and this forum. I wrote my story in their website and started my own blog. The AHA invited me and my son to their headquarters in Dallas and we are in the cover of the 2007 AHA annual report. My wife and I walked in the Heart Walk last September and I got my red survivor cap.

After that, I have been giving speeches too and and one TV report for the Boy Scouts.

With the help of my cardiologist and North Florida Scouts, we were able to get two AEDs from Saint Vincent Hospital. This past June 13th, they presented to the BSA North Florida Council to locate the AEDs in both Echockotee and Shands Scout camps.

If you need help with public speaking, find a local Toastmasters Club (www.toastmasters.org). I have been 10 years with them and helped a lot to reduce my "Antonio Banderas" accent. :-)

Speak out, write here and there, spread the word. We are survivors thanks to God's will and we have the obligation to alert others.

Happy Fathers Day. This is my first one after my SCA.

Jose
www.lepervanche.com

DrD11

Your life story is amazing.Looks like you are in very good hands and that you are doing all the right things.
May I ask you a question?
Have you tried to investigate,yourself if any foods or health supplements(Vitamines) are associated with
these episodes of arrythmias.This is some kind of "Allergy" that can affect the LQT and Channelopathy.I am sure that this subject was covered by your doctors.Still a second thought is a
good idea.

gtrogers

Hi!
I just realized that I have not posted anything on this wonderful site since last June! I read the weekly updates and get alot of useful information from everyone.

Feb. 28th will be my 2nd "birthday"! I have noticed that I have been feeling quite anxious the last few weeks. Same thing I did last year getting close to "the" day.... I have been feeling good... go to my cardiologist now every 6 months and get my ICD checked every 3 months which has not had to do anything... still have a full battery. I guess the feeling i'm having is normal for going through what we have.

I have asked this question before but maybe some new members might have an answer or experience something similar. Does anyone out there think there is a link to SCA and hormones? My one and only episode happened during my mens. Last April I had A-Fib. which corrected itself with meds. thank-goodness, but it was during that time too. I notice every month right before and during my heart races, I don't sleep, weak. I have talked to my dr.'s about this and they really don't give me a direct answer. My gyno. wanted to put me on a low dose hormone to see if that helps but so far I have not agreed to that... I feel like I take enough meds. Possibly perimenopausal? Thanks for any input you have.

Terri

blake76

Hi Mary

Your story about your 2nd SCA sounds amazing, it certainly gives you some confidence in the ICD.

Mine has been in a month now and I am getting used to it. I’ve had a strange week with chest pains and a pain in my neck, not sure what it all was but I've seen my doc and things are getting better now.
I am dreading going back to work though but I have another month off still.

Hope all is well with you



- blake76

Mary1

Hi Terri,
I don't really have an answer for you, but I know you feel pretty frustrated. I have not heard of a SCA being related to anything hormonal, but one never knows! I am definitely going through perimenopause right now. I will be starting hormone therapy tomorrow! But, although I have palpitations, I have been assured they have nothing to do with the SCA. They don't even show up on my defib!

I do know that most of us are probably pretty desparate to understand what happened if we don't have answers. I drive myself crazy with that sometimes.

I do still feel anxious when an anniversary approaches. Now I have two! But my husband and others help talk me through it.

Hang in there, Terri. Between your questions and your doctor's answers, I'm sure you will be fine.

Mary :-)

Mary1

Hi Blake,
My husband is actually almost glad I had the 2nd SCA because now we KNOW it works!

I'm glad you went to the doctor right away about the chest pains, etc. I know I am still hyper sensitive now to anything I feel in my chest. I sometimes get palpitations, but they are unrelated to my SCA. Ironically, I didn't feel anything when I had either event, and it sounds like I wouldn't. So the fact I get nervous when I tune into my heart is purely anxiety! (Of course, this is MY unique situation. Anything out of the ordinary should get checked right away for anyone!)

I can relate to the fact you aren't excited about going back to work. My cardiologist wanted to send me back 2 months after the event, but I did not feel ready at all. My counselor, whom I had been seeing for anxiety and depression even before the SCA, had my primary physician write me out for 2 MORE months, and then send me back part time. About 1 1/2 months after that I felt ready to be there full-time.

Where do you work? Are they pretty understanding there?
Mary

Johnie

Hi Terri,
Well, as a matter of fact -- when I was having heart stoppages while in the ICU over a period of weeks, they DID seem to have some relationship to my cycle. Actually, I was having hot flashes and as each one approached, I could feel the darkness (my heart about to stop) closing in. My doctor mentioned there is some information in the literature about a possible link between spikes in temperature and SCAs. Were you having hot flashes? Your story sounds very similar to mine. I'll post it here for you. Mine was two years ago this month. My story is a little strange, I guess. Like you, I had never had any trouble with my heart before (or any other health issues). At 47, I just dropped down to the kitchen floor one night while cleaning up after dinner. My 16-year-old son did CPR until the medics arrived (about 9 minutes because it was a very icy January night). I still can't quite get my mind around that scene and all that he must have gone through! I seemed to make a quick recovery -- even tried to sit up in the medic unit and ripped my airway out (like you!), proceeding to tell the medics how I didn't need to be there!
After a week in our local hospital they were going to send me home. Then my heart stopped again and continued to stop every few minutes. They had to keep shocking me -- a couple hundred times -- to get me back. I was aware of some of that, could sometimes feel myself going into the bad cycle, knew it was going to happen, and a few times felt pain from the shocks. In desperation they decided to send me to the University of Washington Medical Center in Seattle (we live nearby) to be put on the heart transplant list. Yikes! At the UW, however, they said I wouldn't be able to get a transplant because my heart was "perfectly healthy." They weren't going to remove a healthy heart. Makes sense. They just could not figure out what was going on, what had sent my heart into this terrible cycle. Well, long story (5 more weeks in ICU) short -- they tried two ablation procedures and hoped they worked. For the first one I was too sedated for it to work. The second one took 9 hours (you are awake for this, while they put tiny "scars" on your heart to try to reroute the electrical charges that are going the wrong way).
So -- all of this to say -- that after I went home I was very sad and scared to have the ICD fire and send me back to the hospital for another ablation.
The third ablation worked, thanks to the extremely talented, persistent, and dedicated electrocardiologist I have at the UW. And I have been fine. It has been almost two years since my initial SAC. I am now off all medication (steroids, amniodorone, coreg, etc. etc. etc. -- given to me only because they didn't know what was causing the problem) and back to my previous activities, including working with elementary age special needs kids. They never discovered the reason for the initial SCA, nor why the cycle continued so dramatically to keep stopping my heart over and over. Miraculously, I suffered no brain deficits, no heart damage, no lasting effects of any kind, other than having choppy memories of my hospital stay (from the drugs they had to give me to keep me stable). It has all been a very strange, scary, amazing, miracle-filled journey.
Johnie

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