A look inside my Life as a Heart Patient

            I always post pictures of my children on Facebook and Instagram and document a few other life events as they occur- mainly because I consider this their virtual baby book/photo album of sorts- but I do not post a lot about my heart problems.  I am an open book if you ever talk to me about it, but I don't tend to post details about it on social media.  I stopped blogging a few years ago- not by choice but because life happened and I spent more time with busy kids, my job, and other activities and less time on my computer at home.  That being said, I thought this would be a better place to share a little bit about my heart journey with others and rather than creating a new blog, I decided to use the one I already had.  I don't know if this means I will ever post regularly again, but I would like to share my story and think this is a pretty good place for it.  For those who don't know it, we will start at the beginning, so I apologize for those who have heard it before!  For those who are medical, this is my interpretation to the best of my ability as a heart patient, and even though I am a nurse, I can still be wrong!  For those who are traveling on their own cardiac journey and may come across this by chance, I hope it gives you hope, answers, and guidance for your own heart journey.  And for my family and friends, thank you for loving me through all of this.  Your support and prayers are felt everyday.  So here is a look inside my life as a heart patient-- it is a long post, but I have never put this down on "paper".

The Beginning

    As an older child/teenager, I always had low exercise tolerance (shortness of breath) and would sometimes feel pounding heartbeats inside my chest, especially walking up a flight of stairs.  To me, this was my "normal" and had always been so- it never bothered me or stopped me from doing what I wanted to do.  I was put on an albuterol inhaler for assumed exercise induced asthma during my soccer years in high school and never thought twice about it. Both of those things may be completely unrelated to now!  But in 2009, I became pregnant with our first baby and began having terrible heart palpitations.  I remember listening to my heartbeat with my stethoscope and having anxiety about how erratic I thought my heart was beating.  If I only knew what was in store for me in the future, I would have known this was nothing in comparison to what was to come!  This is when I first saw my cardiologist.  They did an ECHO while I was pregnant and I was diagnosed with mitral valve prolapse but otherwise, my heart looked good.  I wasn't too concerned since many women (and men) have mitral valve prolapse, including my mom.  I delivered Emily in April 2010 without complications and was started on a small dose of beta blockers when she was a few months old. 
     In 2012, I became pregnant with my 2nd child.  This pregnancy seemed less complicated than the first and I was so thankful- maybe because I had become more used to the irregular beats?!  I was still being followed by cardiology and after I delivered Matt in Feb 2013, I saw my cardiologist and he recommended I see an electrophysiologist.  Stephen accompanied me to my appointment that day and I will never forget the doctor listening to me, stepping back, and telling me "You need a cardiac ablation.  You are in bigeminy right now."  Umm, I'm in what?  That was the first time I had ever heard that term and it means every other heartbeat is a PVC, or abnormal beat (preventricular contraction).  I cried in his office, shocked that this was something I was going to have to have done.  I was terrified and worried about my small children at home.  But when the options were explained to me further, I agreed to the procedure and underwent a cardiac ablation in August of 2013.  After this, I was put on an anti-arrhythmic medication, but I never could tell a major difference in my heart and how I felt on a day to day basis.  I was tired, still having palpitations, and kind of thought it must not really have worked since I didn't feel that much different.  In Jan 2016, I asked both my electrophysiologist and my cardiologist if my heart was ok to have a 3rd baby.  Both immediately responded yes.  After convincing my husband, we became pregnant in Oct 2016 for the 3rd and final time with Owen.

My Cardiac Arrest

      As a side note, I did not have a heart attack.  My heart vessels are perfect, but my electricity that controls my heart rate/rhythm is not and this was the culprit for my cardiac arrest.  On Dec 3, 2016, my daughter and I went on a mommy/daughter shopping trip that we had done the past 3 years at Christmas time.  We did a bunch of Christmas shopping, ate lunch at Olive Garden, and saw the movie Moana.  After the movie, we headed back home.  I called my mom on the way home and told her I had been really tired that day despite sleeping well the previous night.  When we got home, we went through our purchases with Stephen and Matt, and I headed to get a shower while he cooked burgers on the grill.  We were getting ready to watch the ACC Championship game that Clemson was playing in.  I remember getting dressed- I had on grey pajama pants and a green Masters t-shirt.  I remember sitting on the edge of our couch in the den.  And then I remember nothing.
     Stephen came inside to ask me if I wanted cheese on my buger, which was a question he already knew the answer to since we were specifically having Pimento Cheese burgers for dinner.  God must have led him inside to me is what we can figure.  He asked me the question, and I didn't respond so he walked over to me and saw me just laying there, kind of slumped backwards.  He shouted it at me and I still didn't move.  He said my head was tilted back, my eyes were rolled back into my head, and I was not breathing.  He has no medical background and was a professional golfer before he began a career in insurance sales, but he knew to pull me onto the floor, start CPR, and then he called 911.  The 911 operator instructed him on how deep to push my chest, how many breaths to give me, and how fast to push.  They stayed on the phone with Stephen for the 11 minutes of CPR he performed until EMS arrived.  Two EMS teams arrived to my house along with a fire truck.  They took over CPR and had an AED with them.  I had to be shocked 4 times, up to 360 Joules, before my heart returned to a normal rhythm.  At this point, Stephen was in the kids bedroom with them praying.  They came and got him to tell him that they had my pulse back and were taking me to the ER.  A neighbor 2 houses down came and got the kids until my sister could arrive to be with them.  And then our neighbor across the street drove Stephen to the ER, where he was met by a friend of my father and my youth pastor (also the pastor who married us!).  My parents were a few hours away and had called them to make sure that Stephen wasn't alone.  They put him in a small room when he arrived, away from other visitors, and continued questioning him on my potential drug use (none!).  But normal 33 year old women, otherwise healthy and fit, do not just go into cardiac arrest.  While in the local ER, I went back into v-tach had to be shocked again.  I was intubated, had a central line placed, and had a CT scan of my head and chest with contrast, which Stephen had to sign consent for due to my pregnancy.  Stephen requested I be transferred to the hospital where I received all of my care.  I arrived sometime around 3 in the morning via EMS.  They had allowed Stephen to ride with them in the front seat.  Multiple specialists came in to treat me while I was admitted including a high risk OB-GYN doctor.  They scanned my abdomen and found a heartbeat still, but warned Stephen not to expect very much from either the baby or myself as far as recovering.  But within 24 hours, I was alert and extubated.  I had terrible short term memory loss and would ask the same questions over and over again, exactly like the movie 50 First Dates or Dory from Finding Nemo.  I didn't remember I was pregnant or why I was in the hospital, and would have to be told repeatedly.
     I spent about a week in the hospital after receiving an Implanted Cardioverter Defibrillator (ICD), who I refer to as "Debi", my 24/7 ambulance service.  The only things I remember about the hospital is one of the nurses sitting on the foot of my bed before I was discharged, a few of my friends and one of the church pastors visiting, and my mom dressing me in some clothes from Walmart because all of mine had been cut off and I didn't have anything to go home in that day.  Stephen stayed behind at the pharmacy to get all of my new medications for me and my mom drove me home.  When I got to our house, everything looked familiar but I didn't remember where anything was and my mom had to give me a tour of the house.  And then I slept- A LOT.  I probably did more sleeping that I have ever done in my life, but I think this allowed my brain and body to heal.  There are definitely still large gaps in my memory from the days before and after the event, but it is probably a blessing in disguise that I won't get all of it back.  I only had 2 more episodes of V-Tach during my pregnancy- one I came out of on my own and the other I was in the process of blacking out when my ICD sent a "mini-shock" to pace me out of it.  And then on June 24, 2017, I delivered a healthy TINY baby boy who had run out of amniotic fluid and had a true knot in his umbilical cord.  But he is perfect and definitely worth it all.  And who knows, being pregnant with him may have saved my life because apparently at some point, I was probably going to have cardiac arrest and the pregnancy may have helped speed up the process!

The ECHO that Changed it All

     In January of 2018, I went in to have another cardiac ablation, but it was unsuccessful because my PVCs were coming from multiple locations inside my heart, and they said it would be like trying to chase a rabbit down a hole.  But the doctor performed something called an intra-cardiac ECHO which gives you images inside the heart.  This of course confirmed my mitral valve prolapse but it also showed that one of the leaflets of my mitral valve was hitting the inside of my ventricle (which it is not supposed to do) and every time it did this, it cause me to have extra beats.  I was referred to a physician at Emory and had a TEE done (Echo performed like a scope in your esophagus).  This allowed clearer pictures of my mitral valve and the physician there showed me also where I most likely had scare tissue formed from years of my ventricle being "overworked" due to the prolapsing valve.  In a nutshell, I was diagnosed with sometime called "Malignant Mitral Valve Prolapse" and it is the most likely cause of my cardiac arrest.  The treatment is medical management of arrhythmias plus an ICD for life (because you can fix the valve but you can't fix any scar tissue that has formed).   When you look up malignant MVP, it matches me.  I am a female, age 30 to 40, with mitral valve prolapse, and experienced sudden cardiac arrest.  Based on the articles I've read, it is a newer diagnosis and usually diagnosed post-mortem during an autopsy.  I was told by the physician at Emory to limit all exercise, continue my medications, and try to keep my own valve as long as possible but that I would eventually need my mitral valve to be fixed and I would know when the time came and it would either be gradual or rapid.

The Here and Now

     I have lived mostly in bigeminy (every other beat PVC) or trigeminy (every 3rd beat PVC) for the last few years and become very accustomed to the overly strong beats of my heart, the skipping beats, and the ever present fatigue.  My average PVC count in an hour is usually in the high 200 to low 300 range- you can do the math!  Some days are WAY better than others and some are just awful.  I get short of breath very easily and can't walk up more than a few flights of stairs without taking a break.  I have grown to accept that this was going to be my life, but I was ok with that because overall I felt ok and I was here for my family. But in January of this past year, I begin experiencing increased shortness of breath. I brushed it to the side for awhile and figured it was maybe just anxiety or on days with bad palpitations.  But it increasingly got worse and I sped up my yearly ECHO by a few months and had it done in February.  This ECHO showed moderate to severe regurgitation (it had only been mild to moderate in the past), but my ventricles and pressures inside my heart all looked fine.  They recommended I see an interventional cardiologist here to become an established patient in case of future events.  I thought our initial visit was just going to be a "meet and greet" session but she patiently explained to me that my valve was basically wearing out my heart.  When I told her I wasn't symptomatic yet, she explained that younger patients tend to compensate for their symptoms.  And when I thought about it more, I realize she was 100% correct.  I was symptomatic, but I had learned to deal with so many of my symptoms as part of my normal life.  On March 21st, I had a right and left heart cath as well as another TEE procedure.  The heart cath showed that my "plumbing" (my arteries) looked great!  But both the cath and TEE confirmed that my regurgitation, or backflow of blood in my heart, was severe and that the valve was large, billowy, and was in need of repair.  I had been told at Emory that I needed to go to one of the major heart centers like Cleveland or Mayo Clinic to have my valve fixed.  But I agreed to meet with the new surgeon here whose specialized in mitral valves.  He is the first person I have met with on this journey that told me my valve could be repaired and not replaced!!!  I surprisingly really liked him but I followed through and got a second opinion from Cleveland Clinic and was told that due to my history of V-Tach and because of the lead from my ICD that runs through the right side of my heart, I was not a candidate for minimally invasive surgery and would need a full, open chest approach-- but they agreed that my valve was repairable.  After MUCH thought, debate, and prayer, I decided to have my surgery done locally in Augusta near my support system because of my history of cardiac arrest/arrhythmias and being offered the same procedure at both places.  I think being able to have this done locally will increase my chances of a successful recovery from both a physical and mental standpoint and I feel lucky to be given a choice- not many patients have one and last year, I would have been one of those patients.  And one of my greatest fears is having cardiac arrest again or post op complications, and being 10 hours away from home and my physician team here was not my optimal choice. 

Preparing for Open Heart Surgery

     So how does one prepare for open heart surgery?  Well, my mom came and helped me clean my house, I did some therapeutic shopping on Amazon, and I filled out online will forms over the phone with my husband while I watched my daughter at her first tumbling gymnastics class!  My surgery is tomorrow, first thing in the morning.  My heart will be stopped for a period of time while he repairs my valves.  Because I have an ICD lead that goes through my tricuspid valve on the other side of my heart, it is leaking too and will possibly need repair as well. If my mitral valve cannot be repaired, then it will have be replaced, which is not the most optimal for my health, longevity, and my heart, but it would fix it.  If I do require a replacement, I have chosen a tissue valve with the full understanding that they wear out much faster than a mechanical valve.  But I am not ready at this point in my life to be on blood thinners forever, which requires frequent checks and diet changes to stay within an optimal range.  Plus they are loud and your body ticks like a clock- which would drive me nuts if my arrhythmias remain (which they definitely might).  But, my hope and prayer is that my valve can be repaired and I have no post-op complications.  That I can be a "normal" person again who only goes to the doctor a few times a year!  I am nervous to see if fixing my valve will actually correct most of the PVCs I have or if it is a totally separate issue, but we won't know until later.  I am blessed to have a problem that has the potential to be fixed.  And I know I am a walking, talking miracle-- Owen and I are living examples of the power of prayer and the miracles that Jesus can perform.  Let's face it, I shouldn't even be here typing this while watching my almost 2 year old play on the floor with his brother and sister.  I am as ready as I will ever be for tomorrow!  If you would pray for me tomorrow, I would appreciate it!  Please pray for the hands of my surgical team, a calming presence for my family- especially my husband who is going to have to see me on a ventilator again, a successful valve REPAIR, no post-op complications, and dealing with my inability to pick up my baby for 8 weeks while I heal (it is going to be hard on him and therefore hard on me).  I don't know what the future holds for me, but I do know that this surgery tomorrow will be life changing, and regardless of what happens, I am thankful.