When the music stops (2/2)…

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In this journey, we have had many great people supporting us.  When things were at their worst, we had many who sent us care packages, made meals, sent encouraging notes, and prayed fervently for our family.

However, when the days turn to weeks, and the weeks turn to months, it is inevitable that the support wains.  In truth, having the constant attention subside was a welcome change.  The support we received came with many mixed emotions.  It is uncomfortable to be the center of attention.

We don’t want to be “special” anymore.  All we really wanted was to be normal again. 

The truth is, we are not a conventional family anymore.  By outward appearances, our family must seem idyllic.  A mom, a dad, a daughter and a son.  Nothing overt that would indicate there was anything wrong.  As we all know, outward appearances can be so deceiving.  Our reality is that we are a family with two chronic cardiac conditions and many complications from the heroic efforts made to save their lives.

To this day, I still get questions about my son’s heart transplant.   Questions like; “how long will he be on anti-rejection medications?”  My response invariably is “as long as he is using his donor heart.”  In my wife’s case most people try to equate her situation to something they are familiar with; a heart attack or blocked coronary arteries.  To be honest congenital heart disease is something we know very little about.  The issues we deal with are a result of genetics; the structure of the heart muscle itself and it can’t be fixed.

There is no cure. It will likely only get worse. 

It would be easy to be bitter or angry.  Some would say it is not fair.  However, through our journey we have been shown so many amazing families who have journeyed with us.  Some of their stories have tragic endings.  A vivid reminder of how close we came to our own catastrophe.

Our experiences have been brutal and in many ways seemed more than we could bear.  Many times I look through pictures and re-read things I’ve written and I think to myself “did this really happen?”

Thankfully our family is still together.  Today we are OK.  Our life is complicated and will always have the constant reminders of our medical complexity.  However, we have so much to be thankful for and we WILL enjoy every day together because our future is uncertain.  We’ve been given a gift and we will do everything in our power to enjoy every moment.  We ARE better together.

 

Follow Donald at http://donaldlepp.blogspot.ca

When the music stops (1/2)…

pexels-photo-207962When I share the story of my family’s experience with their chronic cardiac conditions I never know where to start.  Our life is a tangled web of interlaced story lines.  Many people know us by our son’s spectacular 6 month odyssey in hospital.  6 months where we lived on the edge of catastrophe as my son clung to life.  At only a few months of age he underwent two open heart surgeries.  The second of which was a heart transplant.  In the background of this amazing story was a mother with her own unique journey.

My wife, Susan, was diagnosed with Hypertrophic Obstructive Cardiomyopathy while 5 months pregnant with our son, Russell.  This was unique because in her case, this was an adult onset congenital heart condition.  Shortly after Russell was born he received his own diagnosis of a congenital heart condition.  Given the spectacular nature of our son’s cardiac journey, my wife’s condition lurked in the background unknown to many who followed our story.

When the news of my son’s transplant came, many thought the end was in sight for us.

Our “Hollywood” ending had come. 

The story did not end there.  Shortly after my son returned home from hospital, my wife attempted to become a “Mom” again.  It did not take long before her own cardiac symptoms began to take center stage.  This was beyond belief.  We had walked the edge for 6 months with my son.  Were we seriously doing this again?

Would lightning strike twice? In a word; yes. 

The next few weeks had us in hospital for two short stays while the cardiologists figured out a game plan.  It became clear that a date with a surgeon was on the horizon.  These plans resulted in my wife’s own open heart surgery.  Three months after arriving home from Edmonton, Susan and I were once again on a flight back to Edmonton.  This time it would be for surgery at the Mazankowski Alberta Heart Institute at the University of Alberta Hospital.  The very same building we spent six rather spectacular months with our son.

After a year of nearly constant medical interventions, we had seen many things that most just read about in a magazine article or a Facebook post.  A couple of hundred days in hospital.  Numerous surgeries and procedures.  We had seen some of the finest cardiac care available in the world.

However, a year of “spectacular” takes its toll.  After all the past year had entailed; we were done.  You can only function on adrenaline for so long.  We were exhausted and just wanted to be left alone.

What does life look like after the music stops?

As we tried to put the pieces of our lives back together, “one foot in front of the other” became our motto.  Planning for anything beyond the next day was a well intentioned fantasy.  The follow up of our medical odyssey was daunting.

Our calendar was a myriad of scribble and multi-coloured highlights describing numerous appointments and clinic visits. 

Add in the unexpected trips to the Emergency for a variety of reasons and this is what is called being medically complex. 

Many families who have been through experiences similar to ours call it the “new normal.”  We did not have closure, in fact, I now believe the concept of closure to be a myth.  What we were encountering was a process.  A transition from the life we once knew to an uncharted new reality.

Follow Donald at http://donaldlepp.blogspot.ca

Juggling “choices”….

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Doug is a middle-aged man in my family practice, who works a steady job with daytime hours and a regular paycheck. Like many in my practice, his work is also low paying. For those like him, working for minimum wage or with precarious contract or part-time jobs, that means no benefits.

Not for prescription drugs, or psychotherapy, without dental coverage or a day of paid sick leave.

Despite this, more often than not, he’s able to cover his monthly expenses. Sometimes even with a little left to spare.

But lately has not been one of those times. And it’s weighing heavy on both our minds, leading to some very difficult conversations.

Doug has a medical condition that requires life-long blood thinning. To treat it, he’s on a blood thinner called warfarin. It’s a medication notoriously sensitive to diet and interactions with medications, sometimes thinning your blood too much or not enough. But it’s cheap. Even though there are better medications out there, they’re just too expensive for Doug to pay for out-of-pocket. There’s nothing I can do as his doctor to change that.

Recently, despite his close monitoring and diligence, Doug’s blood was just a little too thin. He began vomiting blood and was admitted to hospital. Thankfully, he was stabilized, treated and eventually able to return home.

That’s only part of his recovery story. Despite this major bleed, he still needs to continue on his blood thinners. He also needs a new regime of medications to make sure he doesn’t have another bleed that puts his life at risk.

Like so many patients on the razor’s edge of making ends-meet, this hospital admission may force him to choose between his financial security and physical well-being.

Everyday he’s been in hospital, is a day of lost wages. Everyday he stays home from work to regain his strength from his lost blood, means another day without any income and a depletion of his limited savings. Combined with the cost of the new medications he needs, he’s left with an impossible choice.

Despite being too sick to work, does he force himself to go back to the job to pay his bills? Or, does he stay home to regain his strength, making sure a premature return to a demanding job doesn’t cause him to re-bleed?

As his family doctor, this is a conversation I dread having. It’s one that no prescription pad and no amount of motivational interviewing will fix. It’s a conversation that happens far too often, for too many patients, in too many doctor’s offices.

Does he choose to pay his bills, or does he choose protect his health? What kind of choice is that?