Heart and Soul: My History Part 2

Heart and Soul – One woman’s journey through a heart transplant

Welcome to the weekly blog of a Donate Life Northwest volunteer who has graciously offered to tell  the story of her journey through the organ transplant process.  She will post to this blog every Wednesday so you can ride this bumpy road with her.

So that was a huge digression, to the third perspective I speak to the kids about, me.  It.

I think you know the gist of IT.  Because of my brother’s diagnosis of a genetic disease, my family and I had echocardiograms. All of ours were benign.  My husband and I decided to raise a family.  Our son was born in 1994.  I continued to work full time at the hospital.  I felt increasingly fatigued.  In 2000 I had a syncopal event, likely ventricular tacchycardia and technically should have died.  I didn’t.  My husband heard me scream for help, found me unresponsive and totally white in the bathroom, threw me on the floor and I responded.  Being the practical healthcare person I was, I went back to bed instead of going to the ER.  Two years later, just after my brother got admitted for transplant, his physician suggested I have another echo.  I did and I still remember lying on that table and seeing my enlarged septum.  I knew.  I felt nauseous.  When the cardiologist called me, actually he called me out of a meeting at our hospital and said, “I wish I wasn’t the one to have to tell you.”  He then asked me if I was having symptoms. I said, like passing out, like overwhelming fatigue, like the chest pain I have right now….  All in a whisper from outside the meeting I was conducting.  I called my brother and he said, true to form, “hey just because you now have this doesn’t mean your course will be like mine”.

That helped.  So did talking with his physician.   I carried on with my work 60 hours a week of hard core hospital drama for the next few months.  Then came the full scale cardiac workup.  They decided I should be evaluated for arrthymias because of the syncopal event.  That meant a trip to a tertiary care center.  I signed the consent for a defibrillator. As I walked into the Electrophysiology Lab, I remember thinking, I really really like being on the other side of this table.  You see our hospital was working with this tertiary center to bring a cardiac cath lab to our facility.  I was responsible for all the training logistics…  I woke up in ICU on the evening of July 3.

My husband and I spoke long and hard about what to tell our son.  I would be hospitalized out of town for a day or two.  He knew his uncle, his beloved uncle, was in the hospital waiting for a new heart.  He actually asked to talk with our minister about it, how someone had to die for his uncle to live.  He was 7 a very precocious 7.  My husband and I came up with a very strategic plan that has served us well to this date.  My brother thought we were nuts.  My brother didn’t have kids (a conscious decision because of his illness).  He didn’t understand that as a parent you can never lie to your child.  We decided that we would only tell our son basic info.  If he asked a question we would answer it honestly and in terms we thought he could understand.  It was very hard.

On the way to the hospital, on the morning of July 4 to retrieve me, my son asked his dad, “its Mom’s heart right?”.  Per our agreement he answered, “yes”.  Not much more had to be said or could be incorporated then.  It gets worse.  I can only imagine what it means to a child to see his parent vulnerable, ill, hooked up to all sort of scary equipment with wires and tubes everywhere.  I really did not want to be this kind of mom to my son.  We all wanted out of that room, out of that scene fast.  Typical hospital stuff, it took hours.

Fourth of July, fireworks on the beach, over the lake, my son in my lap, big bandage over new defibrillator in my chest, pain pills on board.  My son looks me straight in the eye and says, “Mommy, do you have Uncle Seth’s heart?”.  I will never forget it.  A pivotal moment for all.  I mustered my strength from deep down and said, “No honey, I have my own.”  To his retort, my knees went weak, “but you have the same thing right?” .  “Right” was the only thing I could answer and hold him closer.  Thank goodness for fireworks.

Less than 3 weeks later my brother died.  I was a mess.

*disclaimer*
The author is a heart failure patient going through the transplant listing process. She also is a nurse and former hospital administrator.  She would like to thank Donate Life Northwest for permitting her to post her observations on the Donate Life Northwest website.  She also wants to emphasize that all opinions and views stated in the posts are her own and not those of Donate Life Northwest.

Tags: heart transplant, Hypertrophic Cardiomyopathy, organ donation