Why I Wear Red

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February 7th was National Wear Red Day, February is Heart Health Awareness Month.  Until I was in college, I’d never heard of such a day/month and if I wasn’t for January of 2007, I would’ve never cared about promoting it either.

See, in January of 2007 I was helping chaperone Outdoor Education with my cousin at our old middle school.  While blow drying my hair, my heart started racing out of control and knocked me off my feet.  I couldn’t catch my breath and was completely freaked out.  However, I didn’t want to say anything to anyone, so I went on with my day.  A few weeks later, it happened again.  I talked to my mom about it and we both chalked it up to anxiety (college was stressful), but thought it was worth getting checked out.  The straw that broke the camel’s back was when my heart started racing so fast it woke me from a dead sleep.  Never have I been so scared.  My mom called to push my appointment up to an earlier date (yes, I was 19 and my mother still made my doctors appointments.  Sometimes she still does).  She decided to tell my dad and he called me one day to say that my Aunt Claudia had a similar problem and to give her a call.  For those of you who don’t know my Aunt Claudia, she’s an amazing woman.  Not only has she raised a family, taken care of the Soetenga’s, but she was also a nurse in the NICU in Des Moines, IA. She’s truly a caregiver through and through. We had a nice conversation, she is a woman with words and she told me what steps to take next.  I was to go see my regular doctor, have some tests run and wait for them to tell me I was perfectly healthy.  Seriously.  Then I’d get to see a cardiologist (SCARY), they’d run more tests and decisions would be made from there.

Everything my aunt said, happened to a ‘t’. I had to wear a heart monitor round the clock for four straight weeks, except for when showering.  Each time I had an episode I’d need to record it on the device, call this number, send the recording over the phone waves, and repeat.  This was horrible.  The pads ate up my skin.  It was starting to become warm and I couldn’t wear warm weather clothes because the pads were all across my chest.  I didn’t want people to stare.  I was still in school so I had to let all my professors know that I was a ticking time bomb.  Every night I went to bed scared of dying.  I kid you not, I’d tell Ben to check on me in my sleep.  My roommate, bless her heart, lived through my crazy “I’m going to die in my sleep” moments all the time.

Finally, it was time to get my referral to the cardiologist, a nice man whom also treated my grandma.  We violated HIPPA laws for a nano second when I mentioned our relation.  He also told me she was one of his oldest patients and I his youngest.  How lucky are we?

Dr. Phan explained the whole process. He held my hand and assured me I would not die.  My resting heart rate was anywhere between 150-200bpm.  When I was having an episode it was off the charts in the 300-400bpm range.  A natural persons resting heart rate is 60-80bpm.  Everyone joked that I was bionic because it dawned on me why I never truly got tired when working out (when I worked out).  However, it was a blessing that I have no athletic ability as sports would’ve caused me a lot of harm (read as dying on the soccer field).  We also learned why I was so tired.  My heart was working double time, which the doctor explained to me as having the heart of an obese person.  He’d ask questions such as, do you get winded easily? do you sleep often? do you breath heavy?  All of my answers to every question was yes.

On May 21, 2007 I have my first EP Study.  Ben and my parents accompanied me to this day surgery, which ended up turning into an overnight stay.  Dr. Phan really wanted me to be monitored overnight due to my age and the severity of the case.  He burnt two of my bad pathways and froze another.  The burnt pathways could never grow back, but I’d have a higher chance of needing a pacemaker.  A frozen pathway could come undone, but a pacemaker was less likely.

The surgery was tolerable.  They went through the main arteries in my groin, put me in twilight sleep, and sandbagged my legs for hours after.  Not moving was a curial part to recovery to insure that I wouldn’t bleed out.  I had an allergic reaction to the meds, which was horrible seeing as I couldn’t hold myself together enough to vomit.  I’ll never forget that nurse who helped and cleaned up after me.  I had to pee in a bed pan and felt mostly helpless.  I was told that after I came too, the surgery would have made a huge change.  It did.  Had I been able too, I would’ve run a marathon.  For the first time in probably my entire life, I felt amazing.

Recovery was slow.  I couldn’t wear underwear, walk stairs or sit to pee.  My parents were nice enough to have me home again and took great care of me.  I was bruised from the waist down and uncomfortable for a long while.

By summer, I felt great.  I was back to watching Katherine, staying busy with summer classes, and doing what most 19/20 year old do.  Then came April of 2009.  It was back.  The heart was fluttering and I was freaked out.  Ben and I both agreed we would not tell our parents until after meeting with the doctor.

Sure thing, the frozen pathway had come unfrozen.  There’s no real test to show this, but Dr. Phan feared this would happen.  I wore the monitor again.  My heart rate was elevated, but not as often as before.  I begged him to let me wait to have the surgery until after summer was over.  I had big plans.  Trips.  Parities.  Turning 21.  I couldn’t have another summer being laid up and uncomfortable.  He agreed, but told me I needed to have it done before my birthday.  August 6, 2008, I had EP Study number 2.  Much easier than the first.  Another overnight stay.  Same recovery, but I felt better about it all.

August 17, 2008 I got engaged, August 18, 2008 I turned 21 and FINALLY felt normal.  We had just bought a new house, were now getting married, life was awesome.  By October, my flutter was back.  Dr. Phan told me that he couldn’t do any more surgeries.  Burning more pathways would kill me, awesome (not) and freezing was out of the question.  He also told me that some women hormonally have a natural flutter.  After that appointment I started drinking water like it was my job.  The flushing of your system and staying hydrated helps the blood flow better.  I will continue to drink water like it’s my job until the day I die.

For the second time I went on medicine for the flutter.  The first was between April and August of 2008.  I hated the meds.  They made my hair fall out, I felt high (or at least I think that’s what I felt like) and they gave me anxiety.  I took them because they made my heart feel better.  The rest of my body didn’t feel great, however they worked awesome at curing hangovers.  Can you tell I was a youngster then?

I took the meds until we decided to try and get pregnant in November of 2011.  Dr. Phan and my OB agreed no meds and if needed I’d go back on in the second trimester.  Well since pregnancy didn’t come easily, I took the meds occasionally.  Only when I had an episode.  Dr. Phan also told me pregnancy would make me feel like my heart was never affected or it would cause a major flair up.  When we finally got pregnant, I never had one side affect.  My heart has not skipped a beat (knock on wood) in a VERY long time.  Pregnancy cured me!

My resting heart rate is still 90-100bpm, but my body has adjusted so well that I’m barely affected. I still drink gallons of water a week to help blood circulation.  I try to stay healthy and keep somewhat active.  I’m always hesitant being active (and lazy) as I HATE the feeling the flutter gives me.  I haven’t asked Ben to check on me in my sleep in ages.

While superventricular tachycardia (SVT) is not genetic or hereditary, it seems to be in the Soetenga family.  My grandma, aunt, cousin and dad all have had the same procedures as myself.

From all of this, I’ve learned so much about heart health.  Heart disease is the number one killer in women.  A fact that I don’t think many people know.  We always assume it’s the Big C because that’s talked about the most.  I will continue to promote heart health in everyone I know.  Take five minutes and go for a walk.  Park further away from the entrance at Target.  Avoid caffeine (I love decaf).  Drink water.  Eat healthy. Know your family history. Make the heart smart choices.

To learn more about women’s heart health, visit Go Red For Women.  For those of you who wore red and continue to support heart health, thank you.

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