Heart Catheterization - Part 2 - Susan

This is my attempt at keeping one of my blog posts under 2000 words.

A few weeks ago I described Russell's procedure for his heart catheterization.  That was quite appropriate as we will be doing something that is even new to us.  We will be doing our second heart cath in less than a month.  This time it is Susan's turn.

Last week, Susan had her 6 month appt with her cardiologist (or one of them).  When we had our appt in June...the conversation was a little more serious.  It is re-assuring to be taken seriously but it also comes with some not-so-pleasant strings attached.  In our appointment last Thursday, we also had a fairly serious discussion but this time the Dr shared his game plan with us.  We are being referred to the Toronto General Hospital where there is a clinic that specializes in HOCM (Hypertrophic Obstructive Cardiomyopathy).  This is both good and bad news.

The Good News

The Drs are taking Susan's condition very seriously.  Having minimal cardiac function and no quality of life is a big deal.  This condition is not common, so being able to work with a clinic that is experienced with the condition is a positive step.  The fact that we are able to get a heart cath in two weeks is also rather amazing given the average wait for a procedure like this.  It is good to see some action taking place.

The Bad News

Living with a chronic health condition is challenging.  Declining heart function is not pleasant.  In order to get action this quickly is a positive step but it is also an indicator of the seriousness.  In order to be seen by the clinic in Toronto we will have to go through several tests here.  Blood work, echocardiogram, and a heart catheterization.  The heart cath is by far the biggest deal as it is a surgical procedure.  Once this is done all of the data will be collected and sent to Toronto.  There are several treatment options.  One of which is open heart surgery.  That really sucks and it is something we would like to avoid.

The Frustration

Our feeling is that we are heading down a very negative path.  We went down this road with Russell and he ended up with a heart transplant.  This may be why we are somewhat jaded by this process.  We have to remind ourselves that we are on a journey with no known outcome.  Because Russell ended up with a new heart does not mean this is what will happen with Susan.  There are a lot of unknowns.  This is the reason for all of the tests and to consult with experts.  To try to figure out what is going on.  We won't know a whole lot until we get that information.

My apologies in advance to the folks at St Boniface Hospital.  I'm in no mood to play games and be patient.  I'm done.

A Letter to Christine Elliott: Ontario's First Patient Ombudsman

On Dec 10, Christine Elliott was named the first patient ombudsman of Ontario.

As a Manitoban, it would seem odd that this would matter to me.  Today, as my wife and I, sat in the Heart Failure Clinic at St Boniface Hospital (in Winnipeg) we learned that she will be referred to the Toronto General Hospital for cardiac care.  Several hurdles have to be crossed before we get there but the "game plan" will be to escalate Susan's level of care which may require open heart surgery at some point.  This would be Susan's second open heart surgery.  The state of health care in Ontario just became a real issue to us.

I have been anticipating, for some time, the announcement of this ombudsman position ever since I became aware that Ontario had announced their intent to create this new position.

The concept of an ombudsman who is only answerable to patients and to represent the interest of patients makes a lot of sense to me but will the government listen?  Will this position be able to exercise "real" authority?  These are all questions that have yet to be answered.

Anyone who has experienced the health care system has experienced the power imbalance when they are a patient.  It is not so much that there is a technological disadvantage...but health care is a monstrous bureaucracy with many layers requiring a great deal of skill to navigate.  You, as the patient or in many cases the caregiver are "out-gunned."  It is not just a matter of dealing with a doctor, nurse, HCA, or clerk.  If you have an issue, let's take a look at what you are up against:

• Regulatory Bodies
• Medical Associations
• Unions
• Health Regions
• Government Agencies
• Health Care Boards

Within these broadly described groups, there are numerous sub-groups.  All of these groups have two things in common.

1. They claim to be advocates for patients
2. Primary mandate is to represent someone (or group) other than the patient.

The point i am making is not to vilify any group.  The point I am making is that there is no one group who solely represents the interest of the patient.  This is why the concept of a patient ombudsman is an appealing idea.  The only mandate of this position is to advocate for patients, free of any influence.

Will this new position give patients a much needed voice in health care?  Honestly, I don't know.  The success of this position will depend on the scope, authority, and autonomy of the Ombudsman's Office.  The bottom line is that if this is to work the office needs real power.

From someone who sits on several boards, committees, and councils in health care I have a few suggestions that I believe many people who are involved in advocacy will agree with.

1)  Engage with Patients, Caregivers, and Patient Families

There are numerous experts within this group who have logged hundreds (if not thousands) of hours in the health care system.  This experience in invaluable.  In addition to these people being knowledgeable about the challenges of navigating the health care system but many of them bring other professional skills.  Many of the people I have encountered in my volunteer experiences, are business owners, engineers, accountants, and leaders in their own area of expertise. These people are unique, skilled, and strong voices for patients.  A skilled group of patient advisers will be an invaluable resource.  These adviser positions should have extensive experience requirements and some monetary compensation should be involved.  Many of these people have repeatedly volunteered their time in the past.  It is time we recognize the expertise these people have and offer some remuneration.   I think many people are volunteered out.

2)  There is no need to be nice.

Health Care is in critical condition (to use a medical term).  The time for a gentle nudge is over.  People in Ontario, and all across Canada, are having to contend with challenges in health care that are too numerous to mention.  Harm is being done to our population.  These are not just poor metrics we are dealing with but human beings.  Try explaining to someone who is suffering from debilitating pain and headaches that they will have to wait 6 months for an MRI.  During that 6 month wait, that person may be in constant pain and unable to work.  Where is the dignity in that?  The issues are real and they are effecting thousands of people.  It's time to get past the posturing and the BS and acknowledge a system in crisis.

3)  Health Care needs the ePatient

An ePatient is a patient who is Empowered, Engaged, Equipped, and Enabled.  These are people who own their own health care.  It is my belief that meaningful positive change in health care will come about because of ePatients.  Do you take a laptop or a notebook to your doctor appointments with several years of blood test results?  An ePatient does.  An ePatient asks questions.  Do you have your oncologist's email address?  Do you text your nurse clinician?  Do you suggest (based on your own research) an alternative beta-blocker, as opposed to what your cardiologist is recommending?  e Patients will do all of these things (and more.)  They challenge the status quo.  Until the patient starts to demand more; change will not happen.  ePatients are key to that change.  My hope is that a patient ombudsman can further empower the ePatient, by giving them a voice, and enable many more people to own their own health care.

As an empowered patient, or in my case an empowered caregiver, I have been able to assist in changing erroneous hospital policies.  I have been able to investigate incident we were involved in and resolve the problem quicker than the Minister of Health of Manitoba.  Patients working cooperatively within the health care system can make a difference.

Recommendation

My hope is that Ms Elliott becomes an effective advocate for patients and most importantly empower the patients of Ontario.  The obvious challenge for her will be transferring her leadership and skills as a lawyer and politician to understand the challenges and complexity of health care.  She is not a a Doctor or Nurse.  I am encouraged that someone who is not a medical professional was chosen for this position.  Only a person who is non-medical can identify with patients and the power imbalance they encounter within the health care system.  Best of Luck!

Russell's Heart Cath...The Aftermath

It has been a week since Russell's heart catheterization.  As expected, this day did provide us with a new experience or two.  The interesting thing about taking a young boy/toddler/infant for a procedure like this, every year, is that it is different experience every time. Because kids change so fast, how they cope with the process can be very different from one year to the next. Last Monday was no different.

Russell is a real handful during these procedures, and we expected some challenges.  Anaesthesia plays a big role in the success of this day as Russell has huge anxiety.  Everything leading up to the procedure went really well.  We had a great discussion with the anaesthesiologist at our pre-admit clinic (PAC).  I thought we had a pretty good strategy.

The Cath Lab:
Here Susan is holding Russell so they can
start his IV and apply the anaesthetic.

The procedure itself went really well.  No issues.  We get to talk to the Cardiologist and the nurse clinicians right after the procedure, so we got some instant feedback.  Lab results take a couple of weeks; but we do get some initial info from the Doctors.

Everything went sideways after the procedure, when Russell started to come out of his drug induced fog known as anaesthesia.  When anaesthesia was started he went out quickly, but he went out angry.  He came out just as angry.  When we got Russell to recovery (PACU) he was in full bore "freak out" mode.  Normally, Susan can get him calm and provide some comfort but he was having none of it.  The decision happened fairly quickly to give him a sedative.  This was somewhat expected and we were prepared because of the discussion we had with the anaesthesiologist at the PAC.  They really listened.  So a dose of midazolam was ordered up and went into Russell's IV.

With the med on board, Russell quickly settled and laid down.  Here is where we got a not-so-pleasant reminder that drugs can be helpful and can scare the living daylights out of us.  Russell flopped down on the bed and dozed off (or we thought he dozed off).  Our bedside nurse was watching him and her body language started to change a little, she busied herself with some equipment (I wasn't really paying attention).  Then the alarms started going off...alarms we were all to familiar with.  On the monitor we could see "DESAT" and "APNEA."  Then I realized what our nurse had busied herself with, she had grabbed an oxygen mask and was placing it over Russell's mouth and nose while she called for help.  There is an old rule we learned in ICU, many years ago.  "Don't freak out unless your nurse is freaking out."  Maybe saying our nurse was freaking out might have been an exaggeration but she certainly wasn't calm and she had a definite sense of urgency.  With some oxygen Russell's O2 saturation, which had nose dived and caused the alarms to go off, returned to normal.  The whole episode probably lasted less than a minute but having seen this level of urgency before  it was nothing we had ever wanted to relive.  For us, it was several moments of pure terror.  I don't know if Russell actually stopped breathing but it was an unnecessarily close call.

The rest of our day was relatively uneventful.  The usual hospital schtick.  After arriving at 8:00AM we were heading out of the door at 7:00 PM.  Our day was done.  We survived.

Here is the Important Part!

We had a situation happen in recovery that we thought was really serious and  we didn't know why it happened.  We have done 7 or 8 of these heart caths and nothing like that had ever happened.  We were left trying to interpret body language and a few cryptic comments from the staff in recovery.  No one offered an explanation.  Honestly, we were so frazzled, we didn't ask any questions we just wanted to get out of there and get home.

The first thing to understand is that hospital staff experience incidents everyday and these may seem mundane to them, but these may be horrific and traumatic to a patient or caregiver.  It doesn't matter if staff think something is routine, if you as a patient have a concern or question it deserves a thoughtful response.  This is how we (as patient, caregivers, and families) learn.  By having our concerns listened to and explained.

Russell recovering from his heart cath.
Nicole was nice enough to bring snacks

At the end of our day we were much too exhausted to think about what had happened. Over the next day Susan and I had a chance to discuss what had happened.  I decided to get in touch with our cardiologist and see if we couldn't get some info from Russell's chart.  We had some concerns.  Who ordered the midazolam and in what dose.  Did he get too much?  Given all of the meds that would have been on board from the procedure, was midazolam the right med?  These are basic questions but because we will be going through this again in a year or so we did not  want a repeat performance.

Within a few hours of me sending my email to our cardiologist, we had a comprehensive explanation of what happened.  Keep in mind that our cardiologist was not in the recovery room.  She had no idea what had happened.  In her response, she described accurately what had happened based on the notes in the chart.  The dosing she described was accurate from what we saw.  Susan actually saw the volume of med that was infused and it aligned exactly with what our cardiologist described.  The response we received was informative and seemed very consistent to what we saw at the bedside.  This proved to be a very vivid reminder of the risks we take when powerful anesthetics are used and that they don't come without side effects.  It is also a reminder why strict protocols are in place to closely monitor patients as they recover from surgery.  There are significant risks that many times we take for granted.

Just another chapter in our adventures in health care.  Would be nice to take a break but we have an appointment with Susan's Cardiologist on Thursday.  Never a dull moment.

For the Farmers of Alberta - Bill 6

I have been watching, with great interest, the events of the last few days in Alberta as the NDP government is trying to bring Alberta's farmers under the guidelines of the province's Workplace Safety & Health Legislation.  Currently Alberta farmers are exempt from WS&H regs.  

Safety is something that matters to all of us.  Should there be regs. for ensuring workplaces, including farms, are safe? I think so.  Unfortunately, there is a lot of baggage that comes with WS&H regulations.  Current legislation does not address farm safety issues for which it was never designed.

I grew up on a farm.  Had my first motor vehicle accident on the farm.  My 3 brothers are still heavily involved in agri-business.  After leaving the farm I worked in heavy industry and construction for nearly 20 years.  After becoming a Project Manager I took on a unique challenge.  I was handed the task of establishing a safety program for an upstart steel fabricator and given the specific task of getting our COR (Certificate of Recognition) accreditation.  As I learned Safety is about much more than keeping employees safe.  It can be a business advantage, a political tool, a barrier to competition, and most significantly a multi-million dollar industry.  

In understanding the implications of Bill 6, and being under the purview of WS&H regulations you have to understand that WS&H regs are far reaching and give the government a great deal of power in how a business functions on a daily basis.  There are a few basic concepts of WS&H regulation that need to be understood.

Reverse Onus.

In criminal law we are familiar with concept of "innocent until proven guilty."  Most WS&H regulations are built in the concept of "reverse onus" Health & Safety Ontario provides a good definition in their FarmSafe Plan

“In most provinces, occupational health and safety laws are based on a reverse onus principle that assumes you are responsible for the occurrence of an incident, unless you can prove you took preventative measures and actions, yet circumstances beyond your control resulted in the incident occurring”

In practical terms, as an employer, you are “guilty until proven innocent.”  It doesn’t matter that you are operating safely, you have to be able to prove you are operating safely.  This is why it is critical to document and maintain extensive records about training, safe work procedures, safety meetings etc.

Powers of Enforcement Officers

One issue that many people are surprised by is the authority an enforcement officer has.  An enforcement officer can enter a place of employment (including private property) under the jurisdiction of the act at any “reasonable” time.  Police officers do not have this authority.  A police officer would require a warrant to enter a place of business. 

There are some good reasons for officers to have this kind of authority and for the most part officers use this authority wisely.  The problem usually arises when you get an employer who is not aware and thinks they are well within their rights to tell the officer they cannot enter a private establishment.  An honest misunderstanding that can lead to a very tenuous introduction to the enforcement process.

Feeding the Monster

Safety is important.  No one argues that.  Should farms be governed by some safety legislation? Yes.

The problem with Bill 6 is that it would fall under WS&H regulations that are supposed to apply to all workplaces.  My issue is with safety legislation in general.  Extending the legislation to incorporate farms makes a bad situation worse.

Safety regs can create a paper monster.  Document…document…document!  If you can’t prove it happened; it didn’t happen.  It is unlikely that the provincial department has the resources to go out and inspect every farm.  It would be logistically impossible.  Where a farmer is likely to see an enforcement officer is if the farm had a serious incident requiring an enforcement officer to conduct an investigation.  Keep in mind that if an employee goes to a hospital and reports their injury was sustained at work.  WCB and WS&H are notified.  At this point it is too late.  If you don’t have appropriate documentation and training records etc.  Expect to be put in the crosshairs of WS&H enforcement.  Fines are a real possibility if you don’t have the resources (Lawyer) or a well-documented safety process. 

Safety legislation is challenging to work with.  The legislation is unwieldy and subject to all kinds of interpretation and misinterpretation.  The situation is so bad that when I have tried to engage officials from WS&H about an interpretation the response I got was “what do you think?” and the officer refused to give any advice.  The point being that the dept is scared of providing any specific advice for fear of being held accountable in the event of an accident.  If the WS&H officers are reluctant to provide advice how do you think employers feel as they have to make decisions everyday about what is safe and not safe.

The process is so broken that in the event of an accident there is really nothing an employer can do to defend their actions.  After an accident occurred on one of our jobsites I had a lengthy discussion with a WS&H officer.  As a result of the accident the officer was writing up several improvement orders related to alleged violations of the Act.  I reviewed the orders and the apparent violations.  One issue was improper training.  I responded by providing a safe work procedure and a training record for that employee.  The officer responded by saying “the training is obviously not sufficient.”  The officer used the fact that the incident occurred, that the training was not sufficient, and the employer is at fault.  No consideration is given to the fact that the employee may have made an error or had a lapse in judgement.  It is the employer’s fault.

Safety legislation has no doubt made workplaces safer.  This does not mean it doesn’t need to be improved.  My biggest criticism about current safety practices is where we have forgotten that this is about making workplaces safer not how much paperwork you can generate to justify your existence.

Safety and Unions

One of the most powerful tools a union has is safety.  Ask someone who is experienced in labour relations how a union is certified in many situations safety plays a role in certification.  Here is a common scenario:

There is a serious accident in a workplace.  An astute union rep, aware of the situation, will attempt to make contact with employees within that business or many times the employees themselves may talk to a friend or relative who is in a union.  In some form contact is made.  A union rep will try to sell the employee on all the benefits of the collective bargaining process and how, with union representation, they could address safety issues at their place of employment.  After a serious accident, many employees can feel shaken and vulnerable.  The union option can be very appealing.  This is the beginning of a union drive.  There is a vigorous process for certification but once the notice of certification is issued in a workplace it is usually too late for an employer to react.  There are very stringent rules that an employer must follow during this process.  If an employer sends a notice to employees or has a staff meeting explaining the company’s position, this can be deemed employer interference and can have serious repercussions.  In Manitoba, which has the strongest pro-union legislation in the country, employer interference can result in immediate certification.  No vote. The union is in.  It is for this reason that safety can be a very compelling issue in the certification process. 

Is there a real possibility that farm labour on the typical family farm unionize?  I don’t think it is likely without significant changes to labour legislation.  Unions are driven by member dues.  I don’t see a union actively pursuing small operators.  There just isn’t enough incentive for them to expend the effort for one or two members.  If there is a way for a union to sign up large numbers of farm workers, that would be a much different scenario.  Something to keep an eye on in future labour legislation.

Employers vs Employees

It’s getting very tough to be an employer these days.  I respect anyone who takes the risk and puts their own capital on the line and starts their own business.  I’ve worked for entrepreneurs and have a great deal of respect for them. 

One of the biggest challenges any business, especially new businesses, has is attempting to be a responsible and sought after employer.  There are good employers and poor employers just like there are good employees and poor employees.  Unfortunately, legislation and especially safety legislation doesn’t make this distinction.  With the power imbalance that employer have with an employee there is a considerable amount of legislation that tries to balance the employer – employee relationship. 

Unfortunately, in many cases regulatory bodies favour employees as opposed to employers.  If an employee says they were fired for raising a safety concern and files a complaint with the Safety and Health division, without any clear documentation that states otherwise; WS&H will rule in favour of the employee and issue an order to pay compensation or reinstate the employee.  The employee does not need to provide any documentation to support their claim.

Most employers will chose not to appeal decisions like this because the cost it would take to appeal is usually cost prohibitive.  If they have to pay the former employee a nominal amount to address the issue that is many times the best business decision for the employer.  The cost to appeal a decision like this could cost the employer $10-15000 in legal fees and administration costs.  Many employers feel they don’t have much choice.

In short, a disgruntled former employee can cause a great deal of harm to an employer if they have ill intent and know how to work the system.  Employers need to really understand what they are doing when they decide to terminate the employment relationship.  When employees raise safety issues, they must take them seriously.  Not managing your human resources effectively can be very costly.

Safety on the Farm

Probably one of my biggest influences when it came to safety was probably my Dad.  After 20 years working in industry I’ve constantly drawn upon my experience learned, on the farm, before I ever entered the workforce.  Farms can be very dangerous places.  I still recall my Dad warning me about power take offs and the dangers of augers.  I recall Dad giving me heck for parking equipment the wrong way.  There was a right and a wrong way of doing everything.  The hazards on the farm can be unforgiving.  We had a neighbour who died as a result of mishandling a farm chemical.  Farm equipment is large and extremely powerful.  The farm yard can be a flurry of activity in the busy seasons fraught with many potential hazards.

What many safety professionals forget is that employers are not in the safety business.  I can hear the shrieks of horror as safety geeks would indignantly argue that point.  The bottom line is that farmers or any business need to produce and sell a product and hopefully make a profit.  Farmers have to farm.  I view safety as something that should encompass anything we do.  When you say good bye to someone you might say “drive safe.”  Safety is something that should be a component of everything we do.  Safety is not the goal its how we get there.  No one gets up in the morning and has a burning desire to “do safety.”  Unless you are a safety geek.  Safety on the farm or anywhere else is about building it into how you get work done.  That is really important when developing safety procedures, regulations, or legislation.  It’s about getting things done…safely.

Given the complexities of the farm and the fact that most farmers are not fluent in safety legislation and interpretation, there is a tremendous need to consult with farm groups and farmers themselves as to how to make farms safer.  I think it is completely reasonable to draft legislation that is unique to farms and farm families.  This could be a tremendous opportunity for the Alberta government but unfortunately they seem to have adopted the one size fits all approach.

Bottom Line

We all want farms to be safe places to live and work.  That is the issue.  Family farms involve work and how farm families live their lives.  A farm is not a stand-alone building stuck in the middle of an industrial park.  It is not a conventional place of work.  Employment and Safety legislation should address this unique work environment not attempt to shoe horn farms to fit into “one size fits all” legislation. 

I take no issue with farms falling under safety legislation.  However, there is a significant opportunity for government to engage farmers in the process.  Safety rules that apply to farms should be developed with farmers and for the benefit of farmers.  Farmers are by nature problem solvers.  If farmers do not embrace safety regulations the result will be a long standing enforcement issue.  We want farms to be safe; we want farmers and their families to be safe.  The best safety tool for someone working the farm is their mind.  The last thing we want is that mind devising ways of circumventing safety rules.  We want farmers focusing on their work.  Buy in from the farm community is key to the success of any legislation.  Unfortunately the Alberta has completely missed the boat on any goodwill they might have received from the farm community.

For the sake of safety the government has some “fence mending” to do. 

Donald Lepp, CHRP

Cardiac Transplant - Heart Catheterization

Receiving a heart transplant is a very unique and amazing process.  Usually stories about someone who has gone through a heart transplant tell a tale of immense health challenges endured as a result of failing heart.  This journey is never easy.

When the decision is made to be listed for transplant the waiting begins.  Again this is not an easy process as you as a patient or caregiver has no control on the timing or circumstances of a donor heart becoming available.  As I was told several years ago (and completely agree) if you have issues with being in control you will not do well with this process.

When the transplant takes place it represents a turning point.  Being immersed in the nuances of managing a failing heart, you learn the jargon, the terms, processes, and meds involved in managing the failing heart.  Once the transplant takes place, you get to wipe the slate clean and start over.  Management of a heart transplant becomes a new challenge.  You learn about organ rejection, immune suppression, and the ongoing management of the newly transplanted organ.

For friends and casual observers this is hoped that this is the end of the struggle.  The new heart is a second chance; a new lease on life (literally).  This is only partially true.  Yes, the transplant can allow the patient to do many things and assume most activities that any normal person could do.  However, it is critically important to remember that a transplant is a treatment and not a cure.

One of our reminders that things aren't all business as usual is coming up on Monday.  Russell will be going in for his heart catheterization.

After Russell's transplant almost 7 years ago, we did these more frequently.  Twice in his first year and then once very year.  Once you are 5 years post transplant you graduate to the once every two year program.  In short, we have done this a few times, and it still provides some challenges.  The heart cath is the gold standard to determine if any rejection is taking place, to measure the performance of the heart, and to detect any coronary artery disease (which heart transplant recipients are prone to).  With these test does come a significant amount of fear about the "what ifs."  What if they find something? what if they detect evidence of rejection?  The list goes on and on.  Keep in mind that when you have been down the road of heart failure these fears are very real and are not unfounded.

To understand a little bit more about the process.  I have attached a brief description of what happens

From the American Heart Association

What is Cardiac Catheterization?

Cardiac catheterization (cardiac cath or heart cath) is a procedure to examine how well your heart is working. A thin, hollow tube called a catheter is inserted into a large blood vessel that leads to your heart. View an illustration of cardiac catheterization.


Quick facts

• Cardiac cath is performed to find out if you have disease of the heart muscle, valves or coronary (heart) arteries.
• During the procedure, the pressure and blood flow in your heart can be measured.
• Coronary angiography is done during cardiac catheterization. A contrast dye visible in X-rays is injected through the catheter. X-ray images show the dye as it flows through the heart arteries. This shows where arteries are blocked.
• The chances that problems will develop during cardiac cath are low.

NOTE:  For transplant patients a biopsy is also done.  They take a sample of heart tissue that will be tested for any evidence of rejection at the cellular level.


For Russell this is a day surgery procedure.  Russell is now 7 and still requires full anaesthetic for the procedure.  In adults, the procedure is done with a local anaesthetic so the effects are not as profound.  Susan has had a heart cath in the past, and she has only vague recollections of the procedure.  She was fairly "out of it."

As our cath day is coming up on Monday we have been busily preparing for the day and it is usually a very long day.  There were some concerns that came up this week as Russell does have a cough.  If he has any significant respiratory issues the procedure will be cancelled.  Putting someone under in those circumstances is not safe and the Doctors don't take chances.  We have been treating Russell with antibiotic this week in hopes that he is clear on Friday when he has is Pre Admission Clinic at the hospital.  If he isn't clear the procedure will be cancelled and re-scheduled.  Not a good thing for us as we have to do a great deal of preparations to make Cath Day happen.  Booking time off work, ensuring Nicole has child care, and all of the appointments leading to the procedure would now have to all be re arranged if we get cancelled.

The Heart Cath is just one process we go through as part of our daily management of Russell's transplant.  There are many other things we do as part of the process but the cath is one of the more significant things we do.  We are hoping and praying for a good report on Friday at Russell's PAC and then an uneventful procedure on Monday.

If Susan lets me, I will be live tweeting out experience at #russellscathday  I don't control what will happen that day so what I tweet will simply be our experience as it happens.  I hope that informing people about our experience can help others understand how challenging managing complex health conditions can be.  What we go through is similar to what many others go through as they manage their own health.  It also may give some ideas about how you can support someone who has complex health issues by understanding a little of what they go through.

Life with an ICD

First Question....what is an ICD or an AICD?  

An AICD is an "Automatic Implanted Cardioverter Defibrillator".

An AICD is a device that monitors a person's heart rate. They are generally implanted into heart failure patients. The device is programmed to perform the following tasks: speed up or slow down your heart, depending upon  the heart rate. The AICD gives your heart a shock if you start having life threatening arrhythmias or an abnormally high heart rate. Arrhythmias occur when your heart does not beat normally. Some arrhythmias can cause the heart to completely stop beating. The shock given by the AICD can make the heart start beating normally again. An AICD can also make your heart beat faster if your heart is not beating fast enough.

Second Question...what does this have to do with me?

My dear wife Susan is a proud recipient of an AICD.   She has had one since 2010.  Most of our story related to our health care issues has focused on the more spectacular.  The circumstances leading to  her getting her ICD was one of our more inconsequential experiences.  Inconsequential to us at the time; but it shouldn't have been.  I think this is part of the "Shell-shock" we experience as we live with ongoing health issues in our home.  We have become jaded over the years and every once in a while we need to take stock of what we've been through and what is happening today and in the future.  This is part of our learning experience.

How did this come about....

Just before Christmas 2009, following Susan's septal myectomy (open heart surgery to remove an obstruction in her heart) she was scheduled for a routine 24hr Holter.  During the 24hrs Susan recorded several consecutive beats of Ventricular Tachycardia.  She had not experienced this before but she described it as being kicked in the chest.  When the Holter was read she got an immediate response from our clinic.  This was when the discussion of the ICD began to take place.  Susan's first reaction to the recommendation was "absolutely not" and "no way".  This is why I am thankful that she has a cardiologist who "gets" her.  Given that Susan's condition is not likely to get better over time, some negotiating took place and Susan did agree to getting the device implanted.

What is involved...

Implanting the device was a day surgical procedure.  The ICD itself is inserted through a small incision in the chest (as shown).  Leads are then inserted directly into the heart.  They are literally screwed to the heart muscle to ensure they are secure.  There are various different configurations depending on the particular condition being addressed.  The configuration shown below is how Susan's ICD is configured.

Susan's ICD has two functionalities.  It can function both as a pacemaker and a defibrillator.  The primary reason she has one is for the defibrillator component.  In the event of an arrhythmia the ICD can try to "pace" her heart out of the unstable rhythm.  If that doesn't work it will de fibrillate (a nice way of saying zap).

Life with an ICD

The ICD has no impact on Susan's day to day life.  She does have some minor discomfort from having the ICD itself.  It can get bumped which isn't pleasant.  She also has to avoid metal detectors or any kind of electro-magnetic field.  This can risk a malfunction or reset of the device.

For me, the device gives me a sense of security.  After being through all of the cardiac adventures we have been through it does give me some comfort that if something were to go wrong with Susan's heart the ICD is there as a back up.  Our insurance policy.  The device does have recording capability that can help diagnosis any issue Susan may be having.  The device can be read periodically and provide some telemetry on the heart.  It can track if she is retaining fluid or how many PACs or PVCs she has experienced.  This can help diagnose some future issues.  It is nice to have the information but I am sure that Susan feels it to be a intrusive.

As I stated, I appreciate that added security that the device provides.  Then again, I am not the one who has to live with it.  There is a great deal of fear that comes along with having a device installed in your body that can jump start your heart.  I think this is why Susan has a love-hate relationship with it.  Yes...it can provide life saving therapy that could save her life but on the other hand this is just another reminder and intrusion in her life. I can certainly understand where she could begin to live in fear of the device.  Especially when you aren't feeling very well from a cardiac perspective.  How bad do you have to start feeling for the thing to go off?  This can certainly have a significant psychological effect.  How big of an effect?  In a post entitled "A Flare for the Dramatic" posted April 27, 2013 I described a 911 call that Susan made in which she was taken to hospital via ambulance after what she described as a "cardiac event."  Although I don't completely agree, the first responder who we talked to felt that this may have been partially driven by anxiety brought on by the fear of the ICD going off (his comment; not mine).  The one thing I cannot deny is that carrying around an electrical bomb in your chest can have some profound psychological effects.

Information Reduces Fear

One of the disappointments of the whole process was the lack of information we received about the device from the Doctors who were proponents of it.  We are not shy about asking questions but at many times you don't think of the right question at the right time.  Doctors like to play up all of the wonderful things the device can do.  It can feel a little like hype.  As we have lived with the device for several years now we have a better understanding (and more realistic view) of what the device can and cannot do. Ironically, some of the functionality and settings was better explained to us by Russell's cardiologist.  Somewhat typical of our experience with adult vs pediatric cardiology.  This is why I think it is so important that people with medical complexities should connect and share their experiences.  We have been able to get to know some talented clinicians in our pacemaker clinic who have been really good at working with us.  The one thing they can't explain is what it is like to live with the device.  I am a strong proponent of peer support, as other patients speak with the authority of their own experience.  Peers can also say things that medical professionals cannot.  You get some very blunt honesty.  The more you understand the greater ability you have to cope with a device that does change your life.

One example of such a peer support group is the ICD support group of Manitoba.  This is a local group of people who meet periodically and support each other.  This is just one example of the types of peer support available but for those with an ICD this would be a good group to investigate.

Website:  http://www.icdsupportgroupofmanitoba.com/


MAILING ADDRESS:
The ICD Support Group of Manitoba
c/o St. Boniface General Hospital
Pacemaker/Defibrillator Clinic, Y2045
409 Tache Avenue
Winnipeg, Manitoba   R2H 2A6

Patient Centred: Being in the Centre of Health Care (Really Sucks)

Recently I had the pleasure of doing presentation for the pharmacists for the Winnipeg Regional Health Authority.  I have told our story many times but I always like to change things up a bit.  One point that I try to make is that our experiences in health care are far from over.  The really spectacular stuff happened years ago but the aftermath of those years are still very much with us.  It is likely that there may be some big challenges ahead and if you have followed this blog over the past month you will find that is certainly the case.

In trying to illustrate all of the support and specialities we have to manage I developed a simple diagram to show all of the people who are involved in our lives.  This is what you get when you have two medically complex people in your house.  What I created shocked me ( a little.)

When I went through the litany of appointments we go to and the number of clinics, organizations, and specialities that are integrated into our lives it started to make my head hurt (or explained why my head hurts.)  In fact the slide that I show here isn't complete.  I did not list our GP or the Eye Clinic at Children's Hospital.  I just didn't have room for them all.

Yes...we deal with a lot of different people and it does make for a very interesting visual but it also reveals something that is very important and something we should remember about how to support people with complex health issues.

Most people who deal with multiple specialities have to become a conduit for everyone who supports them.  If we have a change in treatment from one of our Doctors it can effect 3 or 4 other groups who support us.  As an example, we change medications with some regularity.  What if that medication has to be given at school (during the day).  This means we have several administrative steps to overcome to ensure that happens.  The school needs formal instructions and a directive.  By itself it is not a huge deal but when you add it to all of our other activities it becomes a daunting task.

As I stated previously we have to manage all of these stakeholders who are involved in our family's health care.  Yes, they are their to support us but many times it feels like we are supporting (or managing) them.  Many of the people we deal with are absolutely excellent, I am not complaining.  Comparing our situation to what many others have experienced I think we are very lucky to have the team we have.  However, they do tend to be a needy bunch.  They need to write reports, then require follow-up appointments, and they all have bosses to report to.  This means they need an awful lot of our time and input.  

There is also another component to this.  Our life has become much more public.  When you deal with so many people and they impact how you do everyday activities it feels very intrusive.  This has been a huge adjustment for us because when we started into this over 7 years ago we were fairly quiet people who enjoyed living our lives in quiet anonymity.  I cannot imagine the number of people who have played a role in our care.  It could easily be over a hundred and could be as many as two hundred.  All of this non-optional.

I distinctly remember very early on in our experience, another parent telling us "that if you are the type of person with control issues; this may not work out very well for you."  Truer words have never been spoken.  In many aspects of our lives we have lost total control.  We do have our occasional rebellion.  When our clinic asks us to go for blood work in two or three weeks re pretend we never heard the two and then we have been known to stretch it to four.  Probably not the smartest thing in the world...but it feels so good to rebel just that little bit.

So What is my Point

I didn't write this to whine and moan about how tough our life is.  If someone reads this and wonders how they could help someone who is going through some difficult times.  I have a few suggestions.

Be a Help; Don't Provide More Work

Many people have great intentions of trying to provide some help but sometimes they add to the stress.  If you want to help someone you have to know something about them and what they truly need.  I don't want to discourage anyone but you have to be pragmatic about how you want to help someone.  Sometimes even asking them "How can you help" can be a stressful question.  Having been through that type of situation, sometimes I have no idea how someone could help.  My suggestion is try to match what abilities or resources you have that may help someone else.  Secondly, don't add to someone's workload.  Here is an example.  You may be a great cook and you want to cook someone a meal.  However, you don't drive.  Offering someone a cooked meal is a great idea but if you ask them to come and pick it up you have just added another task to their busy day.  Great intention but it's not ideal.  It's very hard to turn down someone's generosity.  Especially when you know the intent is genuine.

Listen

All people want to feel important.  All people want to feel valued.  The best way of doing this is to listen to their story.  I remember several situations when i've talked to other patient families.  Very early in the conversation I got the message loud and clear that these people had something to say.  Not sure why they chose me, but they would unload on me.  I have been dumbfounded at how open some people have been with their experiences.  It is clear to me that people need to share their experience including all of the fear, frustration and angst they have endured.  It was well worth my time to take a moment, shut my mouth, not try to solve their problem....and just listen.  Invariably I have learned a tremendous amount by keeping quiet.  This is a great opportunity to listen and as a result; learn.  If you find yourself wanting to help this person, this may be a great opportunity to hear what they are saying and what they truly need.  I use this technique to figure out what to buy my wife for Christmas.  If I engage in conversation and listen to what she is saying, I can get some pretty good clues as to what she wants.    Use the same technique with someone you may want to help through a difficult situation.  Ask yourself; what are they telling me?  Why are they telling me this?

Care for the "Whole" Family/Care Team

One of the failings of the health care system is that many areas of health care work in Silos and don't talk to each other.  From my graphic above you see illustrated many of those silos.  It also becomes apparent that these people should be talking to each other, but rarely do.  When you admit a family member into a hospital you affect far more than the patient in the hospital.  You turn the whole family upside down.  If you are stuck in the hospital you can't be home taking care of all of the tasks that are involved in keeping a house.  Dishes don't get done.  Carpets don't get vacuumed.  Life still has to go on.  The kids still need to get to school.  It isn't just about the treatment of an illness.  Most people can survive a short hospital stay of a few days, but when that stay stretches into weeks that is a huge challenge.  When Russell was airlifted to Edmonton it actually simplified our lives.  There was no option to try to maintain our house or even go back to work.  We were 1400 kms from our day to day lives.  All we did was eat, live, and breath hospital which allowed us to focus.  Thankfully there were some very kind and generous people in Winnipeg who stepped up and took care of a lot of details for us.

Lessons Learned:

1)  Navigating health care is about a lot more than understanding illness and treatment.  It's about living a full and complete life and understanding how a chronic illness will affect even some of the small things in your life.  Imagine breaking your big toe.  In the grand scheme of things a fairly minor issue but when it happens you realize how much that toe does for you.  One of our huge obstacles when we have a health issue going on is child care.  If Susan is in the hospital and I am with her.  Who is looking after the kids.  With the prospect of Susan and I having to travel to Toronto, the question becomes what about our kids; what will they do.  Without any prompting,  Russell's cardiologist has already let us know that if we want to take Russell and Nicole with us, she will make arrangements with SickKids to takeover Russell's care for however long we are in Toronto.  What an awesome Doctor.  We hope this never happens but do you know what a relief it is to know we have some options?  Now that is someone who is stepping up and filling a need.

2)  You have to own your own health care.  You can't let things "just" happen to you.  If a clinic calls you to make an appointment and it is at a really inconvenient time; you have to ask to re-schedule and not take the first appointment that comes along.  You also have to politely question some hospital policies.  Many policies are so old and entrenched that no one recalls why they exist in the first place.  If something doesn't work for you you have to question it.  Things like visiting hours and "quiet time" border on the ridiculous.  If you are caring for a loved one you should just assume you have 24/7 access until someone tells you different.

3)  As an HR practitioner I have to emphasize how important it is to find out how your benefits at work can assist you.  Most people do not have any idea what there benefits will cover.  Canadians mistakenly assume "Health Care is Free" and it most certainly not.  Many components of our health care system are not covered through our provincial medicare.  This is where benefit plans can help.  Know what is in your plan and learn how to negotiate with insurance companies.