My Story...

I did not know I had long qt before my cardiac arrest. I actually went to the hospital for severe abdominal pain one morning and the doctors determined I had an appendicitis. They started surgery and once they got me open saw that I did not have an appendicitis and were perplexed as to what was causing my abdominal pain. They closed me up and decided to keep me over night just to keep an eye on me and see if my abdominal pain returned. The next morning around 3am a nurse came to check on me and found me non-responsive. I was not breathing. They called a code blue and had to shock me multiple times to bring me back. I was shocked several more times to be brought to a normal rhythm. I spent the next 9 days in the ICU. Due to the lack of oxygen when I 'died' I have very little recollection of my time spent in the hospital. Obviously, it was a horribly emotional time for my family. It still brings me to tears to think of their pain at having to see me in such an unstable state. While I was in the hospital they determined I had long qt as well as cardiomyopathy which is what caused the cardiac arrest. I had a defibrillator implanted. My ejection fraction is now only 30% and only time will tell if it will ever improve. My doctor and I are happy with the fact that it hasn't decreased over the last year. Some days are harder than others but I try my best to live a normal life. I have a daughter who is 3yrs old and my greatest fear is having an 'event' when she is with me or that some day she will develop long qt. Thankfully her EKG came back normal, however I know that doesn't completely clear her. It can definitely be an emotionally trying time but I find comfort in actually knowing whats wrong with my heart and having a cardiologist that I trust completely.

By kwinner
Posted December 1, 2008 at 12:23 pm
Report post

Brianne - I'm so sorry you had to go through that, but so happy you survived it! It's inceadibly scary to be diagnosed when you never knew there was a problem, even more scary to have an MI when you dind't even consider it an option. It's also frightening to have young kids and HD. I've found comfort in planning - and I don't mean for my demise, I mean if I have another "event" in front of them. I had my first (and hopefully only) MI in front of my 2 girls - 10 and 8 in January. I spent months planning what I needed to happen if it happened again. Thanksfully my husband was there at the time, but that may not always be the case. Yours is so young, but maybe there are things you can prepare for her, like a number programmed into speed dial she could call if mommy's having trouble, an emergency plan with your husband and family if they can't reach you by phone. I know it sounds silly, but knowing my kids will be safe if something happens, that someone can come get them so they don't have to come to the hospital, that they are comfroted in knowing I will be well taken care of helps me deal with the possibilities.

I'm so glad you have a doc you trust, it takes time to come to a place where you can co-exist with heart trouble. I wish you peace and health!
Hugs,
K

By DoryO
Posted December 1, 2008 at 7:07 pm
Report post

Brianne,

I too am sorry to hear that you have to go through this so young. But I want to welcome you here to WomanHeart. The ladies here are the best! You will find there are many in your same situation---young and with very young children. As K said it will take time to learn how to co-exist with heart disease.

I know that you can teach your young one how to dial in case of an emergency. So either have 911 preset in your phone or just teach her to dial 911 if you are in trouble. There have been things on the news that say things like a grandmother was saved by her 2 yr old grandson or the mother that was saved cause her 3year old dialed 911 and doesn't even know how she knew how to dial it. I remember when I was a telephone operator many many moon's ago and a call came in and it was a very young child saying daddy was sleeping....I was able to stay with the child and paramedics were called and saved his daddy. So do what you can to teach her.

Keep us informed with your health. WE all will be as much support as you need and more.

(((((((((((((((HUGS)))))))))))))))))

Dory

By lkay
Posted December 1, 2008 at 8:55 pm
Report post

Dear Brianne,
You have experienced something with your heart that has aged you and changed you forever - I am so sorry this has happened to you. Welcome to this forum - the women here are compassionate, knowledgeable and know just the right things to say . I hope you will visit here often and give them the opportunity to help you sort out the physical and emotional issues you are facing. I'm not here so much these days but will try to check in on you, ok?

Be well, Laura

By MoonFairy13
Posted December 3, 2008 at 7:56 am
Report post

Hello Brianne.
So very sorry to hear what you have been though when you should be able to be carefree and just thinking about enjoying life and your beautiful little girl. The advice given is exactly what you need to think about doing immediately so it will take a lot off you mind. Teach your daughter about symptoms, that can be done without scaring her, it would be better to have had "the talk" with her than to have it happen and no one had spoken to her. She is old enough to learn the 9-1-1. It is amazing what children are capable of when it is asked of them. If you have family close by or a neighbor who would be willing to be on your speed-dial where she knew to just push one number, that would be great.

She needs to be sat down though and have you talk to her about what could happen so she would not be scared if she saw her mommy not responding to her. I remember when my children were younger and I was having some terrible health problems and had this same fear. I ended up sitting down at night and writing a story and it was read to my children in a way they could understand. A child loves story time and what is read to them really does stick with them.

I don't know about your area, but in ours just dialing 9-1-1 sends them right to our address but ONLY if the call is made from our house phone, it won't work if it is the cell phone so if you do teach her about making a call it might be best to use the house phone. Either wear a bracelet that tells of your condition or have it written and taped to the back of the phone. The more you prepare, even though we hope and pray it will never happen, the better you will rest knowing that you have done everything in your power to protect your child, especially from being scared if something should happen.

I wish you well are we are here to help in any way, even if it is just to talk or give a little old timers advice. LOL

Blessings,
Dee Marie

By Brianne
Posted December 4, 2008 at 12:54 am
Report post

Thank you to all who have read my story and provided advice and encouragement. My daughter is very bright and I know with out a doubt will aid me if a time of need arises. I feel everyday I have is truely a blessing and I take nothing for granted. One of the hardest things to do is accept that I don't have the energy and stamina I use to and can't/shouldn't just push through the tiredness. I'm such a busy body.. in my down time always playing with my daughter, organizing, cleaning, baking etc. its difficult for me to sit still and as much as I know its ok and I just need to rest its almost as if I have to admit defeat... sounds silly I know. But there is the me before my cardiac arrest and the me after... My memory isn't the same either. When I was in the ICU I didn't know who family was. I couldn't make new memories. I would ask every 5 minutes why I was in the hospital.. family would tell me why I was there and I wouldn't believe them. I was restrained and sedated because I was so confused and upset I kept trying to leave the hosptial. Obviously I don't remember any of this, it is all what my family shared with me. Luckily, after about a week or so my mind 'came back' and I know I'm so fortunate because some people's never do. I use to have a photographic memory. Anyone could ask where something was and I would know. Now, I can't remember where I put things yesterday. And again it really isn't that important... Only I and my husband really see a difference but still I hate knowing that something has changed me. I hope others can understand and relate... It helps to write/vent to those that understand.

By Mary1
Posted December 4, 2008 at 8:40 pm
Report post

Hi Brianne,
I can totally relate... When I tell people I can't remember things the way I used to, they tell me it's my age (I'm 46). Funny how I literally "aged" overnight after the cardiac arrest! The difference IS subtle, but it's noticeable to me for sure. I am a teacher and I have to write down EVERYTHING to be sure I remember. Once I wrote the same plans twice and didn't realize it until I was on the third time. I didn't have any memory of doing it the first two times. I was able to confirm this when I went to save it on the computer and I got the message that the file already existed! I can find humor in the memory loss now, but it was not funny to me for a very long time.
Hang in there!
Mary

By MoonFairy13
Posted December 5, 2008 at 1:29 am
Report post

I SO agree about the difficulties of accepting change. I'm not talking about normal changes we go through in our lives, not even about "the change" during menopause, that is still a normal change that our bodies go through. This change has been so hard for me to accept because it changed the way I have lived and loved living my life.

I do not like not resting good at night because of the Prinzmetal pain and then being tired the whole next day. I don't like that my friends are getting together to go to Christmas shows and I know the cold air outside the safety of my home will start up the pains and may take weeks to recover from. I hate that Nitro has become my companion who goes everywhere with me, even to the shower. It is so discouraging that I can no longer hold down a job or do the work I once did. I could not concentrate or remember all the stuff I used to in the businesses I was in. Of course that brings along the fact that we are now a one income family but our bills for test and medicine have greatly increased. My body is changing, I have gone from a petite 5' 105 lady to (unfortunately I didn't grow taller LOL) 145 pounds. I have a stomach now that looks like I am expecting.

So, what can I do about all of this? Well the best thing I have found is to start my day by saying the Serenity Prayer ~ God, grant me the Serenity to accept the things I cannot change, The Courage to change the things I can, and the Wisdom to know the difference.

I also decided to buy a pretty notebook and started a Gratitude Journal.

Yes, these are difficult times and we all have to work hard to look for the good things to be grateful for, they are there.

Just having people on this site to talk to is a blessing. : )

By ally1985
Posted December 5, 2008 at 5:54 am
Report post

hi brianne

i just read your story and my eyes filled up with tears to think of what you went through. you are very young and you have your whole life ahead of you, you just need to be strong and focus on getting better and stronger everyday.
my story isnt the same as yours but i started having loads of problems with my heart after my pregnancy. my son is also 3 years old. he is the most precious in my life. i suffer with angina, due to aortic regurgitation and stenosis. im currently in talks with a cardiologist in cleveland to see what my options are. i live in the uk but the system is very different here, so i feel that i need to go elsewhere to get some answers.

i think its really important to get your daughter a echo test to see the function of her heart. when i started having problems i had my son checked straight away and thankfully hes fit and healthy and his little ticker is perfect. i think an echo can rule out alot more than an ecg.

within regards to your memory, i wouldnt worry too much about it, it will pass im sure. when my son was 6 months old my memory was awful i couldnt remember where i put things or what i even ate the day before. its all probably stress related because of everything you have been through, stress and emotional situations really takes its toll on your body.

anyway i really hope you get better soon.

take care

ally

By simpleshane29
Posted January 21, 2009 at 12:42 pm
Report post

hi to everyone!.. all of us here has different stories to tell. others can relate but some can't. we're all too young for these heart problems and i am not exactly educated w/ these matter.. how i wish we're all filipino here so i can reply a lot. for everyone's information, i can understand english but it's really hard for me to speak or write english, that's why i don't know how to start or where to start my replies.. i'm just trying my best to communicate but it's really for me as a filipino. huhu!.. how i wish, everyone can speak tagalog. but i know it's possible for you all.

i just wanted to say that be strong and have faith in God and you all are in my prayers..

hugsss to everyone!!!

shane

By Sandieg
Posted January 23, 2009 at 10:59 pm
Report post

My sister is going through sort of the same situation you went through. Hospitalized for abdominal pain but it ended up being appendicitis, however, complications and various meds led to sudden cardiac arrest. She is still in hospital and the family, although we are hopeful, is having a difficult time coping with the reality that she may never come back to us (at least, not as she used to be...) After reading your story, I have hope. So, thank you for sharing. I will tell my father to come and read your story tomorrow... he needs to read something positive for a change.

By doloresmc
Posted February 4, 2009 at 2:12 pm
Report post

Brianne, I read your post and brought back so many memories. I was 31 at the time I had a cardiac arrest, I was admitted in the ICU after being discharged by an ER doctor, that got called on his mistake: my EKG showed long QT that he hadn't even noticed and my electrolytes were all low. So from going home, I got wheeled to the ICU with orders of not even getting up to the bathroom. I had shortness of breath, was pale, low blood pressure, so they wanted to stabilize my electrolytes, my QT, and find out what was causing my shortness of breath. They did an echocardiogram and found my ejection fraction at 30%, severely enlarged heart, heart failure and said *dilated cardiomyopathy* maybe post partum (I had a 4 month old baby), viral or what?.
Was put on beta blockers, digoxin, ACE inhibitor, aspirin, heparin, etc..My EF went up to 45% in 2 months and 6 years after that it's at 55%. My QT went back to normal in 2 months too, but that didn't last long. A year later it was long again and I got an ICD that I have not needed in this 5 years but is a sanity saver for me.
You are the first person I find that has/had both at the same time: cardiomyopathy and LQT.
I also had a stroke at the time because of my low ejection fraction blood pooled and the clot went to my right brain..It caused paralysis of my left side, that with intense therapy I could overcome some of it...But right after the stroke my heart started healing and my left ventricle shrinking in size.
Now I take toprol xl 50 mg daily. I had genetic testing for long QT at the prompting of my cardiologist that wanted to know if my LQT was due to cardiomyopathy or if I had it before all that ordeal. It was positive for LQT1.. My kids both got tested and my son is negative, my daughter does carry the same mutation I do. Her pediatric EP is not treating it right now because he feels she is not at risk due to the fact her EKG is normal and her epinephrine challenge test is normal too.
I understand your fears as to what will happen if you were to code again..for me it got 100% better when I got my ICD. I also deal with the grief of change (stroke related)..My energy level is also low and I deal with that everyday.
Are you on any medications for cardiomyopathy?. Do they know what caused it?. What's the size of your left ventricle?
I wish you the best!.
Hugs,
Dolores

By Patybluetx
Posted February 5, 2009 at 11:46 am
Report post

Welcome to our group! I always hate to see the startling amount of members we have/get but like they say 'at least we have each other' right? :)
I always wondered why I couldn't remember much about my time in the hospital and always chalked it up to trauma, and part of it is but it's always bothered me that I don't remember a particular part of my stay but now that you mention the oxygen thing...well it makes sense :) (I didn't stop breathing but had VERY little oxygen going in me for what felt like forever)

Anyways, just know you're not alone and we're here for you with whatever you need.

((HUGS))
Martha

By 2bxplrd
Posted February 5, 2009 at 2:37 pm
Report post

Hi Brianna I can definitely relate to your frustrations of not having the same energy level after having problems with your heart.

I had unexpected heart surgery January 2007 at 35 I was very shocked. For about 8 months prior to surgery I noticed a major decline in my energy I was used to walking 3 miles daily and got to the point I couldn't walk the 3 blocks to the hospital where I worked. I kept going to the doctor explaining that something was wrong. After finally being sent for an echo Jan 3 2007 they finally saw what was wrong and I was referred to a cardiologist that admitted me to the Heart hospital and after more test, surgery was scheduled. They had to replace my Mitral Valve and I was told that my ejection fraction after surgery was 25% and that my left ventricle was dysfunctional. I have been on disability ever since. My doctors told me that if I hadn't been so persistent that something was wrong, I probably would of had a major heart attack trying to get to work. That they may not of realized the condition of my heart until I was on an autopsy table at age 35. I thank God every day for my survival.

It has been frustrating no longer having the energy to do the things that I once loved to do. I just keep praying that one day my heart will restrengthen so that I can get my life back.

Welcome to Inspire!

Explore topics in this journal entry and replies:

13 replies

Add to the discussion

You