Life is beautiful

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  Two years ago we got a call, the kind of call that until you get it, you never imagine can happen to you.   That call brought us to our knees, destroyed any sense of normalcy we had and introduced me to a level of fear that I did not know existed.  

The day we got the call that my father-in-law had dropped dead on the beach at the age of 49, I knew in my gut this wasn't a heart attack, this wasn't a drowning, this was a time bomb.  I knew because I had heard stories of other people dropping dead in my husband's family.   Since June 20th 2012 , I have lived with a pit in my stomach - knowing this was genetic and looking at my husband and my sons with a level of worry and fear that I didn't know I could.  

Nothing about the mourning process made any sense or played by any rule book.  The funeral and the burial were just the beginning of a very long and painful journey.    We started simple, in July of 2012 both boys and Brannon went to a cardiologist to be looked over and everything looked fine.  Three months later the autopsy arrived, I spent over an hour on the phone with the forensic pathologist who conducted the autopsy.   We discussed the most likely suspects for sudden cardiac death, Long QT and hypertropic cardiomyopathy.  None of them seem to fit.   Even the autopsy did not shed light on a definitive cause just that horrible phrase 'sudden cardiac death' and that immediate family members should be evaluated.

With the autopsy in hand we moved on to UNC's cardiology department.  We met a quirky surgeon who kept looking at my husband and saying 'but you are perfectly healthy and fine, I don't understand why you are here' and he'd explain, 'well my father seemed perfectly healthy and fine and had no symptoms and he dropped dead so, we don't want a repeat of that'.  After much back and forth I finally broke down and just asked if we could get an AED for home because then I would feel safe that I could DO something if Brannon's heart stopped too - and the physician responded, that depending on what was wrong, an AED wouldn't necessarily be able to restart his heart - and then he encouraged us to come back when Brannon had symptoms - to which we explained, his father's first symptom was death so we probably wouldn't be back to see him.

I cried a lot after that appointment.

We eventually made our way to Duke's Cardiology Department.  They were amazing.   Compassionate, caring and knowledgeable.   At Duke we met with a team of doctors, reviewed genealogical studies of the family as well as the autopsy.   Our cardiologist met with us, listened to us and took notes - he told us he'd want an MRI of Brannon's heart and had us meet with a cardiologist who specializes in sudden cardiac death.  With a team of professionals, Brannon and I sat down and listened to them go line by line through the autopsy and the family history and the most amazing thing happened - they gave us a reason a solid diagnosis and cause for Greg's death.

 Right ventricular arrhythmogenic cardiomyopathy.

For the first time something made sense.  

Ten months after my father-in-law's death we had a cause. 

The most common first symptom of this disease is sudden death.

Its also autosomal dominant which meant Brannon had a 50/50 chance of having the disease.

Last April, Brannon underwent a two-hour cardiac MRI looking for right ventricular arrhythmogenic cardiomyopathy.  They found a spot on his heart and we were told that it could be nothing but it could be the beginnings of the disease. We were told we would need to wait a year and scan again, if the spot grew we'd know he had it and if it stayed the same then he was fine.  

This past year was long.  It was hard. It was scary. We debated major life changes.  We tried to decided whether or not to grow our family, if he was in fact a carrier that would mean the kids had a 50/50 chance of having it which was a possibility I could not fully comprehend.  Brannon and I spent many nights just in silence - waiting and petrified of what the future may hold.  I started out last year very angry that I was 29 years old and going through this, watching other families in their seemingly blissful uninterrupted and untainted lives enjoying themselves, I had been one of them once and I missed the carefree life I used to have.  I was not my best self in a multitude of ways and I am enormously thankful to the friends and family who have let my very grumpy self lean on them throughout this time.


While this journey has not been easy, beautiful things have been born out of it.  Brannon went out and bought a camper the week he got his MRI results.   Financially responsible?  No.  One of the best decisions we ever made? Yes.


We live differently because of it - more aware, more soak-in-as-much-as-we-can because none of us know what tomorrow or next week is going to bring.

Through this experience Brannon and I were given the gift of perspective.  That perspective has allowed us to find joy and strength in unusual places.   Our bond was tested in ways that I don't know are necessarily healthy for a 6-year-old marriage - but we learned what love looks at its core.  Love is showing up - even when you are scared, even when you are upset, you show up.  Even when it hurts and all you feel like you can do is breathe, love is waking up and putting one foot in front of the other.  There was a lot of pain and fear this year but love showed up each and everyday and eventually we made it.

Last Friday, June 6th 2014, my brave husband went back to Duke's Cardiovascular MRI Clinic and spent 120 minutes in a small tube, waiting to find out if he had what killed his father.

Brannon, you are a warrior in every sense of the word.  

We got a call at 7pm that evening from our cardiologist who never ceases to amaze me with his sensitivity and compassion - 'there had been no change, no growth. I didn't want you guys waiting another minute, Brannon does not have right ventricular arrhythmogenic cardiomyopathy.'

The nightmare is over.

And I feel like I can breathe for the first time in two years.