Our Cardiac Journey: The Next Chapter

For those of you who don’t already know.

Over the past several months Susan’s cardiac function has degraded to such an extent that her Doctors are recommending open heart surgery.  We don’t have a surgery date yet as we are completing some paperwork and assessments.  Susan also needed to take a leave of absence from work.

The plan as it stands right now is to perform a septal myectomy to remove obstruction in her left ventricle.  This is similar to the surgery that was done in 2009.  The new wrinkle is that they may also consider a repair or replacement of the mitral valve.

Nothing about this is minor or routine.  This is major open heart surgery.

Our challenge right now is figuring out how we manage our family as we have to travel out of province once again for medical treatment.  The logistics of this are complicated as we try to manage Susan’s care and still try to be parents.  Our intention is to have Russell and Nicole join us in Edmonton at some point.  This will be significant for Russell as this will be his first trip back to the Stollery since his transplant.

No doubt there will be more to follow….

Post-Election Hangover

Regardless of your political affiliation Election Day is a celebration of democracy.  The peaceful change of power is something to celebrate and treasure.  Yes…my team won on Tuesday night, but we didn't fair so well last October.  That is the way things go in politics.

Nicole with our newly elected
MLA for Selkirk Dr Alan Lagimodiere

In my previous post, I discussed why this election mattered to me.  As a result, I've been actively involved in our local campaign in Selkirk.  The experience has been thoroughly gratifying.  It was a great opportunity to meet and work with members of our community. It was also a lot of fun to be joined by my daughter, Nicole, who joined me on several Saturdays as we went out door knocking in the various neighbourhoods.  I think we both learned a lot and had a lot of fun.

I recall some of the first meetings I attended as part of the constituency association and discussing the upcoming campaign.  There wasn't a lot of exuberance as this constituency has never yielded to the blue team.  We knew this would be an uphill climb.  We had to reverse a 1200 vote deficit from the 2011 election.  As we got out into the community we were consistently receiving a warm reception almost everywhere we went.  The mood was certainly one of change.

We not only had the uphill climb of getting elected, we knew we would also have daunting challenges if we were fortunate enough to form government.  After all, this cannot be about just winning an election.  The reason you do this is because you believe in something and want to make positive changes.  For me this was an election about health care.  Many others on our team had other concerns.  Education, infrastructure and taxes were frequently discussed but for me health care will always strike close to home.  I recall a meeting I was fortunate enough to have with our PC Health Critic, Myrna Driedger, in the Fall of 2014.  She showed me a stack of files on her desk.  Letters she had received from Manitobans who had concerns about health care.  I assume most were negative experiences.  It was a deep file.  I asked her some pointed questions.  We had a good discussion but what struck me was her body language.  The only way I could describe it is a “stubborn but compassionate resolve.”  I got the distinct impression there isn't a lot of “quit” in her.  You don’t sit in opposition for 16 years without a great deal of stick-to-itiveness.  I am assuming she will be taking on the Health portfolio and she has a monumental task in front of her.  I wish her every success.

As I was monitoring the ballot count on Tuesday night it became apparently clear this was actually going to happen.  Yes, you read the polls and your head says you have a real good shot but when you actually see the ballots come in, the smile starts and you realize…we got this...and we did...in a big way.

I probably should be a lot happier but I am not celebrating today.  All of the work we spent on the campaign will be a total waste of time if we can’t get things done.  For me it is all about health care.  A hill many other politicians have fallen on.  We have to do better and we have to get it right.  People’s lives are at stake.  This became abundantly clear as I was still in the polling station, on Tuesday night, when my wife, Susan, sent me a text.  Her Mom was in the ER at St Boniface Hospital.  An apparent gall bladder issue.  That will shock you into reality in a real quick hurry.  A vivid reminder that the issues we have in health care never go away.

Because my team won on Tuesday; are all of our troubles gone and is there nothing but smooth sailing?  Far from it.  The work is just beginning.  Yes the tasks seem insurmountable but I recall what everyone was saying two years ago, most said the PCs would never take Selkirk.  Having worked with this team and some of the other teams in the province I can assure you; you haven’t seen nothing yet.  We’re just getting warmed up.  

Things That Matter - Election Day

My blog, for the most part, is autobiographical.  It is simply about our life as a family.  At times it seems more like a reality show, but I guess that is just the way we roll.   As I have learned to be an advocate for my family members I have encountered many barriers in our health care system.  When I share our story I hope to be able to provide some context and some “real-life” examples of what is going on in health care from the patient/caregiver perspective.

The first thing you realize when you start messing around in the inner workings of health care is that health care is political.  It is a political tool in which governments (especially provincial gov’ts) wield a tremendous amount of power.  This is why over the past few weeks several of my blog posts have taken on a decidedly political tone.

I have met a lot of amazing people during these past 2 years as I have become increasingly involved in the political process.  Some wonder where it all started.  It all started in March of 2014.  You have one person to thank for my political musings and that is our former Health Minister Erin Selby.  Her despicable comments about the Pediatric Cardiology Inquest sparked a media firestorm.  It also inspired an angry email (from me) to the Winnipeg Sun.

http://blogs.canoe.com/raisinghell/politics/selby-should-read-this-letter/

My Progressive Conservative Party membership was purchase the same week.  Ms Selby is someone who truly represents what is wrong in politics.  I was reminded of Ms Selby’s “Dead Baby” comments this past Saturday when our Premier repeated this vile approach to politics and stated, if elected, the PCs would take away cancer drugs.  I don’t know who thought of this morally de-void comment but they should be fired. If it was Mr Selinger himself, the people of Manitoba will have their say tomorrow.

The comments by Ms Selby were personal.  It was an attack on families who were wronged by the health care system.  It was an attack on the very people who care for my son. I can well imagine the outrage that people who depend on very expensive cancer treatments felt about the Premier’s comments.  I would have hoped the NDP had learned their lesson.  Apparently not.

There is an old saying that is often associated with Winnipeg’s North End and is a socialist mantra.  “People before Profit.” This is a saying the NDP have gravitated to when distinguishing itself as a champion of the poor and the working class.  It is a noble sentiment, however after 17 years of power the Manitoba NDP has forgotten about its working class roots and has opted for “Politics over People”

Tomorrow is Election Day.  A celebration of democracy.  If we elect a PC government; will all of the problems of health care be solved?  Not at all.  After 17 years in the political wilderness my hope is that a new government will have a mandate to initiate change and finally put the priorities of patients over politics.  Time will tell. 

This election matters to me because I have been on the front lines of people suffering.  ER wait times are not a statistic to me.  I’ve lived them.  A shortage of services is just not a catch phrase to me; it is a part of our everyday life.  Everything that I have ever written about that relates to health care has been impacted by the politics of health care.  

I’m hoping to be celebrating tomorrow night but part of me is somewhat depressed.  An election win does not solve anything.  On April 20^th there will still be people suffering from dementia.  Someone will go to CancerCare and get a diagnosis that will change their life.  A new baby will be born with autism.  Someone will die waiting for an organ donation.  That is the world I live in.  On April 20^th we have to start doing more for these people.  Those are the things that matter.

Health Care Ombudsman; Good Idea?

Today in an act of political opportunism, Manitoba Premier Greg Selinger announced that if re-elected their government would introduce an office of the patient advocate...or a health care ombudsman.  A stand alone body that would report to the Provincial Ombudsman.

This was the typical politically expedient response to a tragedy that took place in a Winnipeg ER. Something that happened months ago but is only being addressed now because it became an inconvenient news story.  A tragedy that would never have been prevented by a health care ombudsman.

A health care ombudsman is something i've done a lot of thinking about.  I've also asked several physicians what they think about the idea.  The responses have been interesting.  Most physicians I talk to expressed that they would rather prevent harm, to patients, than have an office that only steps in after the fact.  It seems more reactive than proactive.

I do think the idea does has some merit.  Having a body that operates at arm's length of the health authorities, and the government they report to, is not a terrible idea. The issue is how the office is setup and what authority it would have.  I am very skeptical that this office would have the authority it would need to be effective.  Following the Phoenix Sinclair Inquiry Justice Ted Hughes recommended increased powers for the office of the Children's Advocate.  This issue has been studied to death by the current NDP government and nothing has come from it.  On this issue and many other issues this NDP government has suffered from paralysis by analysis.  I have a hard time believing this NDP government is capable (or even genuine) about its intent to create an effective Health Care Ombudsman.

Although I believe a health care advocate may be a good idea I don't believe it to be a priority.  Many issues in health care are well known.  Lack of patient and personal care home beds are an obvious issue.  Doctor shortages are another issue that is causing havoc in rural ERs.  There are hundreds of vacant nursing positions.  Everyone knows the issues.  It isn't difficult.

When it comes to listening to patients concerns, these issues are also well known.  The vast majority of complaints that come from patients and patient families surround communication issues.  As one physician told me..."we're just not patient centred."

Some may argue that a health care ombudsman could facilitate better communication with families and provide improved and more timely responses to family concerns.  That could be true, but it would only take place after the relationship between patient and the health care system have already been irreparably harmed.  Shouldn't we be trying to improve communication and solve issues before having to bring in a third party.

The current NDP government has touted the success of their Critical Incident Reporting legislation.  Is the promise to create an new office to investigate critical incidents an admission that the CI reporting process is broken?  Are we now just layering another half baked bureaucratic investigative body on top of an existing dysfunctional system.

It is interesting that the Premier chose to call this the office of the "Patient Advocate"  I am a patient advocate.  Not a pencil pushing bureaucrat.  I know a little more about this than he does.  I have absolutely fabulous members of the health care system who effectively advocate on our behalf when we have issues in the health care system.  We have an effective relationship.  It's time to start building productive relationships with patients in health care. We are equal partners.  We have a mutually beneficial relationship.  That is not true for most.  The way many patients are treated in health care it seems like they are in an abusive relationship.

If you sense a great deal of frustration in this blog post; that would be accurate.  We need to start taking action on health care issues and stop creating bureaucratic empires.  It just seems that we have become totally infatuated with trying to hide the failings of our health care system and forgot about dealing with real life patients.  There are people in our hospitals in Winnipeg right now.  Treat them!

My honest opinion is that creating a health care ombudsman simply sounds like an attempt to avoid dealing with the real problems in health care.

Supporting the Supporters - Recognizing Caregivers

When Susan went through Cardiac Rehab several years ago, there was one session set aside for supporters (or caregivers) of the patients who were enrolled in the Cardiac Rehab program.  The class was called "Supporting the Supporters.This was a stand-alone session and the actual patients were not allowed.  It was a one hour session and there were around 30 people in the session.  It became very apparent that 60 minutes was not nearly enough time.  There were lots of experiences (and emotions) shared.  The amount of stories in that room could have easily filled a very lengthy book.  A book we could likely learn many life lessons from.

There are so many people we have met in our health care journey who have been mentors, and who have been so generous with us to share their own experiences.  I recall many conversations with families when we were in hospital with Russell.  When you are in hospital for many weeks and months you see the same people every day and exchange “hellos” as you meet these people in the hallway as they come and go and carry on their business.  I find it humourous that many of these people who we got to know, I only know by their first name.  We shared some very powerful memories but yet we have no idea where they came from or what they did on a day to day basis.

Over time you develop a dark sense of humour.  I suspect that is a common coping mechanism.  You have to do something to cope with the situation.  I remember one occasion when we were turfed out of the PICU in Edmonton.  There was “something” going on in the PICU and all of the families were asked to leave.  These situations were not uncommon and usually meant something “serious” was going on.  You might see one family in the common area outside the unit and given their body language you know it was their “turn”.  I say the word “turn” as that is the way it seemed.  Everyone who was in there for any length of time had their “close calls.”  It is just that kind of place.  After all these were 18 of the sickest kids in Western Canada.

On another occasion when the PICU was closed several of us gathered outside of the unit.  It was after lunch and everyone was coming back after grabbing a bite to eat.  We assumed that after lunch the PICU may be open.  In this occasion it was not.  A few of us began talking.  The first topic is speculating why the PICU was closed in the first place.  Not a happy discussion.  Then the conversation progressed a little further.  So….what are you in for?  It seemed a little like inmates discussing why they had been sent to prison.  The conversation just gets stranger from there.  One Mom described her son’s illness and without thinking twice she casually mentioned…”Oh…did you hear that “Code” they called on 4C last week…well that was us.”  That was just considered normal.

There were many families who would have very short stays in PICU and we were happy for them.  Many of them were there for surgery.  Their child would be admitted in the morning and then arrive in the PICU in the afternoon.  After a few short hours of recovery these kids would be whisked away to the ward and would be discharged in a few days.  For the rest of us we wouldn’t be that lucky.  We were there for the long haul.  Several of the families we got to know were never lucky enough to take their children home.  I think back at some of those occasions when we saw families who gathered in one of the meeting rooms and received “the news.”  The care team would muster up every bit of sensitivity they could think of and explain “that there was nothing more they could do.”  It is likely that many of these parents knew “the news” was coming but that provides very little comfort when you are faced with the grim reality that your child would never come home.

The first Tuesday of April is Caregiver Recognition Day.  It is on this day that I think of these parents, who were forced to say goodbye to their children at far too young an age.  Somehow we were spared that fate.  The families we spent those weeks with will be forever in our thoughts and prayers as we care for our children.  I learnt so many lessons from them.  How to laugh in some of the darkest moments and to simply put one foot in front of the other day after day.  This is where I learnt to be thankful.

Years later we may meet a family who have gone through similar experiences as us and I am amazed how there is that instant connection.  An understanding of what it is like to be on the brink.  The language, the terminology, is all the same. Much of the communication is unspoken with knowing looks and the knowledge that "I get it."  I think that is the challenge for many caregivers is to adequately express their experience and what it means to them.  For those who have been there; no words are necessary.  We all know that we have to process these experiences in our own way.

I'm very proud to call some of these people my friends and peers.  The people who shared their journey with us.  I have great respect for everyone of these caregivers who blazed a path that we could follow.

Thanks