Confessions of a Health Care Adrenaline Junkie

We are all familiar with the safety instructions when we travel by air, on a commercial airline.  You invariably get the instruction about the air mask that pops down from the bulkhead above you, in case the cabin loses pressure.  You are clearly instructed to affix your mask and ensure you are getting air prior to helping anyone else.  The very same thing can be said of caregivers.  You have to take care of yourself first.  You are of no help, to the person you are caring for, if you are falling apart.

There is no doubt that our family has gone through some very unique experiences.  I find my role unique in that I usually take on the role of supporter and not directly on the front line.  It's a bit like having a backstage pass to some of the most complex parts of health care.  I see many things that 98% of the population don't see.  I am extremely fortunate (and thankful) that I am not the subject of these traumas.  The traumas that members of my family have had to endure.  One stunning realization that I made not that long ago was something that isn't easy to admit.  The realization that after our lives were turned upside down and being faced with life and death scenarios was the shocking discovery that it actually gave me an adrenaline rush.

Yes, I am a Health Care Adrenaline Junkie.

Don't get me wrong.  I am not a ghoul that enjoys watching people suffer.  Far from it.  To explain this I think I need to back up a bit.

When Russell crashed in the ER in the fall of 2008, it started a cascade of events that would see us transported to another hospital, in another province.  We would be there for over 6 months.  To enable us to keep family and friends informed I began a blog (care page) to keep everyone up to speed.  This blog gave me a purpose.  It was a great from of therapy and kept me busy during many monotonous hours in the hospital.  I enjoyed it...sort of.  Certainly there were a great many experiences that no one should ever have to go through.  Although writing about these experiences was not always easy it a very effective way of dealing with the stress.

In the years since, we have had several "scary" episodes.  This journey really never ends.  Each time I have been able to draw on our experience and I felt confidence that we could do it again.  A bizarre sense of invincibility.  This is how I processed these situations mentally.

In the years since, I have shared our story (publicly) many times.  After sharing I get many predictable questions.  One of the questions I usually get is "how do YOU handle all this"?  I must admit the first time I heard this question it took me off guard.  I didn't have a good answer.  My first thought was that what I go through is nothing compared to what Russell or Susan have been through.  I don't have a right to complain because I'm not the one who is sick.  This question confounded me for some time.  What about me?  Why do I do what I do?

In my situation, I get this bizarre adrenaline rush when we come to the point of having to head to the Emergency Room.  My mind shifts into hospital mode.  I'm ready to do battle.  This is good and bad.  It is good to not be a victim and to be a strong advocate, but you have to balance that adrenaline rush with being sensible, being cooperative, and realizing this is not about me.

It has not been easy to realize that in a twisted way I enjoy the health care - high wire act.  It's really important to use that positively (not negatively).  It's that adrenaline rush that motivates me to try to make positive changes in health care.  To do the volunteering that I do and to share our experiences.  It is also important that it doesn't become all consuming.  At some point you have to let it go.

Prior to our trip to Edmonton only a few weeks ago for Susan's cardiac surgery, I got a stern lecture.  Prior to boarding the plane Susan sat me down and got a few things clear with me before we once again entered hospital world.  Susan knows me really well and she knows when I get this hospital adrenaline rush that I tend to get a little intense.  Trust me, she is not the only one to have noticed this.  In her instruction to me, she flat out told me to "dial it down."  "Don't make a big deal over every little thing."  The lecture wasn't exactly what I WANTED to hear but it was what I NEEDED to hear.  She gave me permission to relax.  Thinking about what she said on the flight I re-thought my approach to being an advocate.  To prioritize the things that really mattered.  Let go of the insignificant things.  It made our whole experience in Edmonton a lot easier for me because I wasn't wound tighter than a drum.  I did a lot more observing and watching.  I let staff do their jobs.  I saw some goofy things happen and realizing they weren't going to be a big deal...I just let them go.

Everyone deals with stress differently.  Over the years I have learned some techniques that work for me.  Susan and I have discussed what we have been through many times and have discussed the effect it has had on our outlook on life and how it has changed us.  I am uncomfortable calling it PTSD.  That is a clinical term that I am uncomfortable with.  I believe is thrown around far too recklessly.  Regardless of what kind of label you put on it; the fact remains that we have been permanently affected by our experiences.  One of the most difficult things for me to deal with after my "hospital adrenaline rush" is settling back into everyday life and doing the mundane.

If I were to recommend anything as a result of our experience is that understanding yourself and taking care of yourself mentally is something that everyone should take seriously.

Medical Errors or Communication Errors

Looking at my last few posts, I noticed something.  My last few posts have spoken favourably of the health care system.  Ironic, because I don't often feel that way.  The health care system in Canada has many problems but there certainly are centres of excellence that DO exist.  One way of trying to improve our system is to look at components of the system that work, try to understand them, and then duplicate them.

Being involved in health care as a volunteer, advocate, and leader I get to hear many horror stories about health care.  Many people will tell me about their negative experiences.  Some stories are quite shocking but most of the time I find myself asking some questions.  I am quite perplexed by people who have been exposed to health care for a total of a week and are suddenly health care experts.  Trust me; it's not that easy.  I have been immersed in this world 24/7 for over 8 years and I still feel like a student on their first day of school.  Health care is complex.  All the more reason that we as non-health care folks should be asking questions.  Questions can spark discussions which can lead to understanding.

I have been thinking a lot about Susan's surgery that occurred just 6 weeks ago.  Susan's surgeon, Dr. Ross (Edmonton surgeon), is about as nice a person as you would ever want to meet.  He is the kind of person who doesn't say things just to hear the sound of his own voice.  When he talks; I listen.  He is also a seasoned pro with tons of experience.  He also did Susan's surgery 7 years ago and also saw him many times when we were in hospital with Russell.  We know each other.  I just wanted to be clear on that point as I share some of the reasons why Susan had to have a second septal myectomy.

In June of 2009 when Susan had her first surgery I received a phone call from Dr. Ross after they had just completed Susan's surgery.  He explained the results to me and that the pressure (LVOT) in Susan's left ventricle had been significantly reduced.  It was reduced to the extent that Susan should feel a lot better.  That proved to be true as Susan did feel a lot better.  He also explained to me something unique about the anatomy of Susan's heart.  He explained that he found tissue attached to her mitral valve.  This was the first I had heard of this.  He also noted this in his surgical report and made notes for a possible repair if this anomalous tissue became an issue in the future.  We asked Dr. Ross what the likelihood that Susan would need a second surgery sometime in the future?  He stated that the chances of that were unlikely.  He stated in his long career he had never had to do a myectomy re-do.  Famous last words.

In 2013, when Susan started to have some recurring symptoms, we raised this issue of the mitral valve with our cardiology clinic (in Winnipeg) but nobody really paid any attention to us.  Not having a really solid anatomical explanation of why Susan was having symptoms again, they started talking to us about stress and possible psychosomatic reasons for the symptoms.  When Susan was forced to call 911 and go to Emergency this did prompt some action.  We got in to see one of the cardiologists and they did an echo and a heart cath was ordered.  The heart cath proved to be a waste of time because I am convinced the Doctor who did the Cath got a bogus result.  Susan does not fit the normal profile of their cardiac patients and they did the standard investigation which didn't take into account Susan's specific heart condition and to specifically investigate based on her anatomy and her specific symptoms.  Our frustration was confirmed in December of 2015 when a second heart cath was ordered that produced vastly different results.  When the Doctor reviewed the results with us we asked about the result of the previous heart cath.  He said he had reviewed the results from the previous cath and he described the LVOT pressure as "under-reported".  That is Doctor speak for ... it was a waste of time because the doctor didn't know what he was looking for.  Regardless of whether the 2013 cath was a waste of time or not; Susan was still having profound symptoms.  Now that we had some solid numbers, the referral was made back to Dr. Ross for a myectomy re-do. 

In March, of this year, we were forwarded an email from Dr. Ross.  He had reviewed Susan's chart and imagery.  He was being asked to do a second myectomy but from the start, he immediately focused on the valve issue.  Something no one else did.  He was proposing not only a myectomy re-do but also the valve repair or possible replacement.

After Susan's second surgery in August, we had a good opportunity to take the time to discuss the results with Dr. Ross.  He was clear that he thought the big issue Susan was having was related to the valve.  He removed the tissue that was not supposed to be attached to the valve and he observed everything functioning very well.  Looking strictly at the numbers the results were better than the surgery 7 years previous.

We also had a lengthy discussion about why he did or did not attempt to repair the valve back in 2009.  The reasons were quite simple.  You don't mess with something that is working.  At the time the valve seemed to be operating fine, with only mild regurgitation. If it ain't broke - don't fix it. It is a conservative and pragmatic approach.  The surgeon got the performance he needed and once he had a desirable outcome his decision was to stop.

7 years later Dr. Ross clearly told us that he should have repaired the valve in the first round.  Knowing what we know now.  Hindsight is 20/20.  Dr. Ross also added another comment.  In 2009, prior to the surgery, the valve was never discussed.  He told us he felt uncomfortable manipulating the valve, in the OR, without having discussed this with us first.

If we have learned anything about the practice of medicine is that it is certainly not black and white.  In some cases, it seems more like voodoo than hard science.  Having gotten to know many health care providers we have lost the mystique of the infallibility of these highly skilled professionals.  They are humans, they make mistakes and have lapses in judgement.  We need to get past that as patients and realize that we need to actively participate to give the Doctors the appropriate information for them to make the "right" decisions.  We have had many discussions with Doctors that ended with the exasperated comment ..."I don't know"!  That is the moment I know I am getting some honesty.  Dr. Ross made a judgement call 7 years ago.  Doctors make judgement calls every day.  Some of them are right and some of them are wrong.

Did Dr. Ross make the right decision 7 years ago?  Honestly, I don't know.  Having discussed this with him, I certainly understand his logic and I believe his logic was sound.  It was sound in spite of the fact that if we had known more, at the time, we could have prevented Susan from having to go through a second open heart surgery and it frustrates me to say that.  The bottom line is that our Doctors and I don't have a crystal ball and can't see the future.

Why am I sharing this story?  From the text above, we were equipped with a lot of information.  We understood the thought process and the parameters of the surgery.  What if all of this information was not shared with us?  To find out that a valve repair could have been done in the first surgery and prevented the second surgery could be very upsetting.  Some might be angry.  Some might even call it a mistake or a medical error.  I disagree.  I disagree because I had the information.  More information than most patients get.  This is why communication is so important.

Most complaints that are lodged against hospitals and physicians are usually a result of some form of communication break down.  This is why it is so important for us to ask questions and in some cases to demand information.  In our experience of these two surgeries, I feel we were given complete information.  The only way that happens is when physicians and nurses take the time to really explain what is going on and do it on an ongoing basis.  If that had not happened, I am sure I would not be waxing poetically as part of a blog post but would likely be writing a complaint to the hospital or something more drastic.  Unfortunately, this level of transparency is rare.  Patients don't typically have our level of access or relationship with our health care providers.  I have expended a ton of effort developing that kind of open relationship.

Because of the experience I have, I read patient complaints from a very different perspective than most.  I can usually pinpoint quite quickly when the communication broke down and how it affected the outcome.  It is frustrating.  The feeling of having incomplete information and not trusting your Doctors is traumatic and adds stress to an already stressful situation. 

We have to spend more time building the relationships between doctor and patient to prevent catastrophic failures.  From the patient perspective, we have to own our health care and ask questions and get answers that make sense to us.  This isn't the sole responsibility of the health care provider.

In my mind, our experience and the need for effective medical communication prompts several questions.

1)  How do we develop open and effective patient-doctor relationships?  How long does this take?

2)  What about the patient that does not want to be engaged - one that just wants to be "fixed."

3)  What are the barriers to effective communication?

• Patient Personalities
• Age
• Archaic paternal policies and procedures
• Poorly trained staff?
• The attitude of "you're on a need-to-know basis and you don't need to know"
• Others