Thursday, December 13, 2012

My fun little contraption

When I got diagnosed with Dilated Cardiomyopathy, I was told I should wear a life vest.  No, not the big bright orange things you wear on a boat.  It is an external defibrillator.  It has not gone off as off yet, thank God.  I have had to wear it for over 3 months now.  I am unsure as to how much longer I need to wear this.  I know the Dr. needs to do another echo to see how my heart is responding to the medicines.  After she looks at the results she will then decided if I need to continue wearing this or if I need an AICD or if I need nothing.  I am hoping for the latter.  Actually, I kinda want the AICD just so that I can have the reassurance that if I wear to go into Cardiac Arrest I will be ok because it will shock my heart back into rhythm.  But for now I am wearing the life vest.  It is kind of uncomfortable.  Imagine wearing a bra 24/7.  That is what I have to do.  I have been wearing it so long now that I have bruises/welts from wear all the leads are.  It is also a little irritating from where the fabric digs into my skin but I guess it is a small price to pay for reassurance.  As much as I dislike wearing it, I am glad that I am.  Whenever I take it off for a shower I worry if something is gonna happen while I am in there and not wearing it.  Im so paranoid.    But oh well. 
Gotta assemble it after I wash the white part

All assembled now and ready to wear

This part I wear outside of my clothes

 Just wanted to give a little information on what I deal with daily =)  Have a blessed day everyone!

Wednesday, November 28, 2012

A great adventure

We got back from our vacation on Sunday.  We had a blast.  It was a great week of family bonding.  The kids loved running around outside and inside.  The house was huge.  Georgia is so beautiful.  We got there after all the fall colors but there were still some trees that had fall colors.  We also went to Tennessee and man, that is where I would love to move too.  The mountains were gorgeous.  I loved just driving and looking at all the pretty scenery.  God sure made an amazing earth! 

The downside?  I got tired and short of breath so quickly.  Throughout the week we climbed a couple hills.  No one else was winded.  I felt like I was gonna pass out I was breathing so hard and doing my best to keep up with everyone but I had to slow down.  That part was not fun.  It is kind of funny that I never realized or recognized that I got so short of breath so quickly before being diagnosed with Cardiomyopathy, but now that I know I have it, I pick up on my symptoms so easily.   I am glad that I did not quit any of the adventures that we went on because I would have missed seeing some amazing sites.  Had I quit I would not have made it to see a double waterfall in Fall Branch Falls in Georgia.  I would have missed a great adventure with my husband and my sons.  I might have to take things slower and more cautiously but I can still do things and I am not going to let this disease hold me back.  I am going to enjoy life and live ever moment to the fullest.

Wednesday, November 14, 2012


I'm super excited to go on vacation thanksgiving week. We are all going to Georgia to stay in a cabin for a week. Our family is so in need of a vacation. The kids are excited to be going to another state. Here in Florida it's warm most of the year and were hoping it snows so the kids get to experience snow but even if it doesn't it'll be a fun trip. Lots of fun activities will be done. But having a heart condition I have to take some additional stuff that I would not have had to in the past. I have to bring my scale and blood pressure machine to continue monitoring my vitals. I gotta make sure I bring all of my medicines and not forget them.  I'm bringing my notebook that I'm writing everything down in. I also would normally walk and hike and all that fun stuff with no worries but I have to stay aware of my body and how it is handling everything. We're going up in the mountains so I have to worry about altitude having an affect. I've even heard that colder weather can have an affect on how the dart works so there's so much more to this than just going on vacation. Gotta make sure we know where the closest hospital is "Just in case". But with all this extra worrying I'm gonna have a blast with my family and I can't wait to go!!

Cardio appt 2

Last week I had my second cardiologist appointment. I guess it was a normal one. She listened to my heart and said it sounded good. She wanted to do an echocardiogram so she could see my heart for herself but my insurance wouldn't let her this soon since I had one in hospital two months ago. So she is working on it with them and will call me to come in and do the echo. She upped the dose of my metoprolol this appointment. I guess she is gonna alternate between the two medicines to get up to maximum dose for my body. After she was done the student doctor came in and did the same things. I go to the hospital that is a teaching hospital. I had to go to the doctor by myself as my hubby watched the kids. We couldn't find a babysitter to watch our boys so he could come. I wish he would have. It makes my appointments more comfortable and he's my support. So they want me to come back in three months this time and get the echo sometime before then. They scheduled my appt for valentines day but I think I'm gonna reschedule it for another day.

Monday, November 5, 2012

Cardiologist Appt 1

October 4th, I had my first cardiologist appointment after being diagnosed.  My husband came with me.  I was nervous.  I had no idea what to expect.  I got there and they did another EKG on me and that came back fine.  The doctor came in and ordered another Echo, it was a partial one.  She could not believe that I was this young, having no symptoms and have this low of an EF.  The test came back the same as the hospital.  They doubled my dose of Lisinopril and kept my Metoprolol the same.  They want to see me every month until I get on the maximum dose of the medicine.  They are optimistic that the medicines will increase my EF to where it should be.  She said that they can't do the ICD for at least 3 months after being diagnosed just to see if the medicines are working like they should.  I have to keep wearing this LifeVest.  I'm getting kind of used to it by now.  She seems like a great doctor.  She stayed in the room and took her time answering all the questions my husband and I had.  She had great bedside manners.  I go back November 8th for a regular appointment and to double my dose again.  Oh, some good news...I have lost 10 pounds in 2 months with all the limiting of salt and stuff.  Pretty good if you ask me!

And It Starts...

Dilated Cardiomyopathy.  Conjested Heart Failure.  Cardiac Arrest.  What comes to your mind when you read those words?  For me, it was hard to swallow.  How can this be?  I am only 30.  I am a wife.  I am a mother.  I am your normal, every day stay at home mom, girl next door kind of person.  I raise my 3 young wonderful boys.  I have only been married almost 8 years.  I wrestle with my kids. And my husband.  I grocery shop.  I mow the grass.  I hang out with my family and friends.  I have a normal life.  Why me?  How did this happen?

In September, I was having some chest pains for a few days and after putting it off I was finally convinced to go to the emergency room.  I go.  I have all the testing done.  The EKG was normal, except I have an inverted 3rd t-wave.  I have no idea what that means, but the doctor said it was fine.  I had the fun stress test.  I don't recommend it unless you want to hold on to the handle super tight so that you don't fall off the speeding treadmill, but I guess it wouldn't have been a big deal if I fell, I was already in the hospital. The results of that test were fine.  I had an Echocardiogram.  Since the other 2 tests came back fine they sent me home saying they will call me with results on the Echo.  They didn't know what was causing my pain and said to take it easy.  The next day, I get a call from the Cardiologist saying that they needed me to come back to the hospital, there was something wrong with my Ejection Fraction.  Again, a term I knew nothing about.   When I get there they admit me and tell me I have Dilated Cardiomyopathy.  What the heck is that?  Take my advice and don't google it.  You'll be freaked out with all the stories and stuff.  We were looking for facts.  We went to reliable health websites to learn more about it.  I was told my Ejection Fraction (EF)  was only 15%.  It should be at 50-55%.  With the lower EF I am at greater risk of Cardiac Arrest and Conjestive Heart Failure. I have a whole list of symptoms that I have to watch out for and be aware of.  Since I am a stay at home mom, and anything can happen at anytime, we had to teach our 3 boys, who are only 4, 5, & 7, how to call 911 and teach them to tell the operater that their mommy has CHF (Conjested Heart Failure).  That's not fair.  They should be outside having fun being boys, not having to worry about calling an ambulance for their mom at any given time.   I have to wear a very fashionable bulky defibrillator.  It is called a Life Vest.   It monitors my heart rhythm and if it starts to go into arrhythmia (another term I have to learn) it will alarm to let me know.  I have a minute to turn it off or it will shock me.  So, if I am carrying in groceries, and I am one of those people who do not like having to go back and forth to the car to get groceries so I carry all the bags I can possibly put on my arm, if the alarm goes off all my groceries are gonna be crushed with me trying to get it turned off.  Getting shocked is not on my to do list.  Hopefully by the end of the year I won't have to wear it anymore.  There is talk about an ICD. That is another term for Implanted Defibrillator.  That won't be for a while, hopefully.

I am so grateful to have such a supportive and loving husband who is my rock through all of this.  He stayed with me at the hospital.  It was even his birthday while I was there.  He is there for me every step of the way and I definitely could not handle this by myself.  I thank God for him in my life.

So, how am I now?  Well, I am having to weigh myself every morning.  (This is also not on my to do list but I have to do it).  I have to take my blood pressure and pulse everyday.  I have 2 heart medicines that I now have to take everyday for the rest of my life.  I cannot retain water.  It will make my heart work harder, so to reduce it  I have to limit my fluid intake.  I have to limit my salt intake.  It was hard to find stuff I can eat with little/no sodium.  Just take a look at your day to day eating habits.  Add up all the sodium.  You will be amazed at how much you eat.  Physically, I feel fine.  I feel like I always have.  There are a few times where I find myself being really tired and short of breath.  I just have to take it easy at those times.  Emotionally, I have my good days and my bad days.  Mostly good days.  I have to take this one day at a time and live for each moment and not let this heart disease run my life.  There are some adjustments, but basically, I am still me!