Saturday, July 11, 2020

Covid is here to Stay! Now What?

A few weeks ago I was interviewed related to the issue of Manitoba schools opening up in a limited format. The story focussed on kids with underlying health issues and the challenges they face in attending school in the era of COVID.

I was interviewed because my son Russell is immune-compromised due to the medications he takes to prevent organ rejection. 

In spite of limited school openings, Russell never went to school in June. His only in-person interaction with his school was his drive-thru farewell - as he will be moving to middle years school next year. 

My wife and I have a lot of thinking to do about what we will do before school begins in the fall.  Seeing what isolation has done to our kids reinforces the need for them to get out - be social - and be with their friends.  As much as we have attempted to keep things as normal as possible, we can see the effect of long stretches of isolation. 

Our doctors have strongly recommended to wait and see - as there is very little information available on children who are immune-suppressed and how they cope with COVID.  We have obviously learned a lot about COVID in the past few months and the hope is that we will know more in the coming months. 

That still leaves us in a tough predicament as there is no clear cut - right answer. We've lived with the risks of immune-suppression for many years and this is just another complication in our decision-making process.  I still recall our doctors' advice on how to care for our son. They gave us a lot of information about what things to avoid and activities that were high risk. They also stated in clear terms that you also have to have a life. What is the point of having a life-saving transplant if you don't have a life? Managing the risks involves being pragmatic but not paranoid. That is a lot easier said than done.

COVID has just re-ignited a debate that has been ongoing for years.  The frustrations of people who don't vaccinate. Parents who send sick kids to daycare and to school. This has forced us to re-visit all of the risks we face - not just COVID.

I hope that if there is one thing we learn through the whole pandemic experience is how we can prevent the transmission of many viruses - not just COVID. There is a huge opportunity to promote the uptake of the flu vaccine - to make sure everyone is up to date on their vaccinations. What is the point of bending the curve on COVID just to have a measles outbreak?

We should be learning boatloads from this pandemic. The importance of vaccines, hand hygiene, not going to work sick, the transmission of disease in confined spaces - the list goes on and on. In spite of many of these lessons we also realize that we will always live with some risk - we need to start the conversation about what level of risk is acceptable. That discussion is well underway in our household. A conversation that has been going on for 12 years and won't end anytime soon.

If our kids go back to school in the fall - it will be a calculated risk - but it is a risk we have been living with for many years. This is nothing new.

Friday, May 29, 2020

Is This the End of Patient Centred Care?

For a generation, the health care system has been espousing patient and family centred care and the principles they entail.  The belief that patients can participate as an equal partner with health care providers to pursue better outcomes and to maintain control. That is - until now.

So what exactly is patient and family centred care (PFCC)?

To give you the textbook answer:

This perspective is based on the recognition that patients and families are essential allies for quality and safety—not only in direct care interactions, but also in quality improvement, safety initiatives, education of health professionals, research, facility design, and policy development.

Patient- and family-centred care leads to better health outcomes, improved patient and family experience of care, better clinician and staff satisfaction, and wiser allocation of resources.

                                            Source: Institute for Patient and Family Centred Care

In recent years, if you were to go to any health care conference, converse with policy experts or talk to any health care leader, you could quickly achieve agreement on these basic concepts.  It is straight forward and intuitive. It just makes sense. That would be until a few weeks ago when COVID took all of those altruistic sentiments and threw them out the window. In a few short weeks, we have turned our backs on thirty years of progress and spat upon patients and their families.

But why? How can something with such a broad base of acceptance be so easily discarded?

There are likely many reasons but two significant issues come to my mind.

Care Doesn’t Happen in a Board Room.

In health care environments, we have gotten good at politically correct speech and empty platitudes. Unfortunately, this type of language lends itself very well to the board room - but not to the front line, where things get a lot more complicated.

Health care and patient-centred care look far different in a board room than it does in the critical care unit. Things take on a whole different meaning with a patient screaming in pain, gasping for air, or when they draw their last breaths. What does patient and family centred care look like in a crisis?

I assert that the reason PFCC failed during the COVID crisis is that those of us who carry the dubious title “patient advocate” made significant inroads with health care leaders. Still, in many cases, we never reached those groups who implement these ideas - at the front lines. In reality, patient and family centred care happen in quiet one on one conversations between the doctor and patient and likely in many more instances with the bedside nurse. PFCC is not about a policy statement or new rules. It is about an ingrained way of thinking about the patient and how every action is taken affects that patient, which includes that patient’s family. It has to be so entrenched that it becomes a reflex in the way we think, which brings me to my second point.

PFCC Was Never Embraced Where it Matters.

Despite the success of PFCC from a public policy perspective where the failure came was in the hearts and minds of front line providers. We have seen this in the example of blanket visitor restrictions. We have reverted to the default position that families at the patient’s bedside are accommodation -  a nice gesture—something we will address when its convenient. A pandemic forces a decision to identify priorities, and families have been determined not to be a priority. Families are not considered part of the care team despite substantial data and research to support the concept that family support results in better outcomes and makes significant contributions to patient safety.

I have talked to several front line staff members. In the environment of the pandemic, many have reverted to old ways of thinking - that families can be inappropriate - can be a distraction - and certainly can’t be considered essential. Three months ago, comments like that would have been unthinkable.  Now they are called the “new normal.”

The principle of families as “equal partners in care” sounded good - to abandon that principle shows me it was never wholly embraced—just something we said to make families feel good.

So What Now?

Not all is lost. Although what has happened over the past couple of months is disheartening, many people are working in health care who embrace a patient-centred system. Many well-drafted policies support patients and families. We’ve “talked the talk,” but now it’s time to “walk the walk.”

In small isolated corners of the health care system - change has happened - and it’s a beautiful thing to see. But how do we re-invigorate the discussion? It starts with your next visit to a clinic - your next trip to the emergency room.  It begins by questioning the status quo.

Unfortunately, this is on you, patients. Lead, follow or get out of the way. That sounds harsh, but no one is going to give up authority or control willingly. Accepting sub-standard treatment is a choice. We all need to learn how to be better advocates (me included). We need to raise the bar. For those who are familiar with how to navigate the health care system - you may already be doing this. However, the vast majority of the population has no idea what goes on in health care, and those people need help when the inevitable day comes when they need to use the system. We need to show those who are unfamiliar with health care how to advocate for themselves and demand better care.

If a member of my family were admitted to the hospital today - despite a pandemic - I would never accept the idea that I could not be at their bedside. I can wear PPE. I can self-isolate. I can take all the necessary precautions to mitigate any risk—the same as any other staff member. The benefit of me advocating for a family member far outweighs any risk I present.

That’s a hill I’m willing to die on. Why? Because lives are at stake.

Monday, March 30, 2020

This All Feels so Familiar

The past few days of isolation have been an enlightening experience.  Much of my contact with the outside world had been intermittent. Many of us are probably spending a little too much time on social media, but it is one way that we cope and how we gather information.

One thing that I have noticed that is different about the many people that I follow on social media is how they are reacting to the Covid-19 pandemic. I am seeing some people who have a lot of experience dealing with severe health care conditions expressing genuine fear about this pandemic. These are people who I respect and who don’t panic for no reason. I am not sure why, but it shocks me to hear some of these people say, “I’m scared.” I guess it is not the words themselves but who it is coming from - people who have stared death in the face. It means something different coming from people with that kind of experience.

I must admit that I have been having many feeling of déjà vu as I hear physicians on news programs describe what they see in their hospitals and critical care units. Many sights that we experienced in our own experiences in the ICU. Although the circumstances are different - the language - the procedures - the drastic interventions are all too familiar. Sometimes it is just a good idea to turn off the TV.

For those who know what this is or seen it used - your perspective
on Covid-19 might be a little different than most.

What has also been surprising is comments from experienced doctors and nurses, how they are reacting to this crisis. I saw one physician post a picture of what it looks like to be intubated and imploring people to isolate to prevent the spread of the virus. I saw another physician express the horror of having to intubate a colleague who had contracted the virus. He went on to explain the profound effect of performing this procedure on someone he knew.

I find the impact that this is having on medical professionals surprising, but perhaps my perspective is a little jaded. I recall so many things that our medical team did and how they described many heinous procedures as if it was routine. We do this all the time was how we interpreted the message. In retrospect, I always felt that our very legitimate fears were dismissed. Now that I see practising physicians express many of the same feelings we had - I feel somewhat vindicated but I take very little solace in that vindication. Having been through it - I know what it’s like, and I know it’s hard. I wouldn’t wish it on anyone.

Perhaps that is something we will learn in this whole ordeal. To respect the fragility of life and acknowledge our apprehension and even our fears. The next time a Doctor has to explain to parents why they have to intubate their child -  that they would look at it through a different lens. Also, that we as patients & caregivers will realize that those caring for us have many of the same fears that we do.

We were all there once, and we are in this together.

Sunday, March 22, 2020

Everyone Chill Out

Hi everyone - how’s everyone dealing with “Pandemic 2020?”

For those that don’t know - my son Russell and my wife Susan are two people who are at high-risk related to Covid-19 or whatever politically correct name we are calling it nowadays.

Because of our health issues, we started to self-isolate about nine days ago when the first case of the virus was confirmed in our city. We had discussed this with our cardiologist, and she forwarded some beneficial information for us.

We are minimizing social contact - not in complete isolation. I went to work one-day last week and have made a trip to the grocery store and the pharmacy, but that’s about it. We aren’t freaking out, and are trying to take appropriate action based on the level of risk.

One of the most stressful parts of this time has been the constant, unrelenting barrage of coverage of the pandemic. I would typically watch a fair bit of news coverage about this, but I’ve stopped. I don’t think it’s healthy to immerse yourself in 24/7 coverage, especially with the amount of misinformation and wild speculation that is going on.

It’s strange how this whole situation has reminded me of our stay in hospital over eleven years ago now. When my son crashed in a Winnipeg hospital - our lives stopped. In less than 24 hours, we cheated death and were uprooted from everything familiar as our son was medivac’d two provinces away.  Everything familiar and normal was gone. It has changed forever how we look at life and especially adversity. I suspect that this pandemic will have a similar effect for many.

In the past weeks, our lives have changed, but our medical complexity has prepared us.  It is not the first time that we have had to self-isolate because of an infectious disease in our community. We have had to do it on two other occasions. I guess we just live in a heightened state of readiness. No shortage of toilet paper in our house!

I am reluctant to advise as I think there are many things I still need to learn myself, but I completely understand what it is like to have your life turned upside down on a moment’s notice. If it helps - there are a few things that I would cautiously call advice.

Calm down!

For some, they are going through something I could only call group hysteria right now. Social media is an excellent incubator for this. People take their legitimate concerns/anxiety and share them with others and, before long, a group of people whip themselves into a frenzy.  Frenzied people do not make good decisions. Fear, worry, anxiety are typical and very real. However, I don’t recall a single situation in my life where ‘worry’ ever helped me solve a problem. The problem was there whether I worried about it or not. However, it ‘s not unreasonable to be worried. Worry can be positive if it motivates you to take reasonable precautions. Just don’t let it consume you to the extent that it paralyzes you. I mentioned earlier that I reached out to our cardiologist a couple of weeks ago and got some solid advice, which really alleviated some of my anxiety. This trusted source provided me with relevant information absent hyperbole and conjecture. I appreciated that.


When we were in hospital for months on end in some very high-stress situations, we felt we were not in control.  That is very disconcerting for many people. Having your life and schedule turned upside down creates lots of anxiety. What we did to combat this was developing a routine - just like a regular workweek.  We set the alarm, ate at regular intervals, and went to the hospital just like we were heading to the office. We constructed a time table and tried to introduce as much structure into our lives as we could.  This accomplished several things. It forced us to pace ourselves as we had to plan breaks and take breaks away from the hospital (especially the ICU.) Structure forced us to prioritize the important things and it gave us a sense of purpose. Finally, it gave is control over something. We were so stressed at the time - control over anything was a big boost even if it was just the time you woke up in the morning.

Know yourself

The final thing I would suggest is about understanding yourself.  Susan and I both tend to lean toward the introvert side. Being in self-isolation is not that hard for us. However, if you are an extrovert, I could see this being a huge challenge. I think this might be where social media can help out if you engage with those who are a positive influence - and yes, they do exist. My point is that you have to understand how you cope with stress and what things bring you joy. Let’s face it - we all need a little joy in our lives right now. A good book or a movie is a great escape. I’m taking on some projects around the house, and it feels great to get some repairs done that are long overdue. You have to keep positive and keep moving forward. If that doesn’t work, there are always cat videos.
The last thing I want to leave you with is a piece of advice I had heard many times from our nurses when we were in hospital.

 “This is a marathon - not a sprint.”

We have no idea how long this state of emergency is going to last. We not only need to be prepared to endure this whole pandemic, but just as importantly, we need to figure out how we will deal with the aftermath. That just might prove to be just as challenging as living through the pandemic itself.

Keep calm and carry on!

Sunday, February 2, 2020

Am I an Author?

I effectively finished the manuscript for my book in the spring of 2019. That is nearly a year ago now. So what is going on? When is the book coming out?

A question I have asked myself many times, and yes, it is frustrating. I am now at a stage in the process that was a complete mystery to me when I completed the manuscript. In many ways, the publishing process is still a mystery to me.

For someone who never had the aspiration of being a writer, I have had to do a lot of remedial learning. I have operated in the business world all of my career. Complex business cases and contracts are nothing new to me, but the publishing world is like nothing I have ever been involved with before. To say it’s been a steep learning curve would be an understatement.

For the past few months, I have been exploring many ways of getting published — traditional publishing vs self-publishing. Literary agents - predatory publishers are all things I hadn’t the slightest understanding. I realize it is a business and parts of it I gravitate to quite easily. However, the process of taking a manuscript and creating a book are all new to me. Then there is the dark side of the industry. Working with a reputable publisher is huge. I have learned that publishing is a bit of a contact sport - not for the faint of heart.

What has been a big surprise to me and a bit of an epiphany is how much I have enjoyed the editing process. Your cover, book title, and your marketing strategy changes some of the content of the book. A last-minute change of the cover can spark an avalanche of editing, which I find strangely enjoyable. I guess I see the light at the end of the tunnel now and when you see it all coming together, it is quite gratifying.  Now that I am in editing mode, I enjoy the fine-tuning - the crafting — seeing the manuscript from 30,000 feet.

I have been fortunate to have made some very knowledgable contacts in this process. They have been a great influence and source of encouragement. With some positive influence and doing a lot more reading myself, I have learned a lot about the art of writing and crafting a compelling story. I have reached out to several people to read my manuscript and have received some very helpful feedback. Trust me; it helps to approach this process from a position of humility and checking your ego at the door. Listening to feedback and trying to understand criticism will only make your writing so much better.

I would say that my writing at this point is a bit like a blunt instrument. It’s a little raw and unpolished, but the only way to make your writing better is to keep writing. I have re-written whole chapters and done extensive editing. The strange thing is that I have enjoyed the whole process. Learning how a single word used effectively can completely change the feel of a paragraph or paint a very distinct picture. To have a reader see what you are writing and not just the words on a page. To look at the words on the page as a reader would. What questions would they have? Should I answer them or leave something to their imagination?

That has been another interesting revelation in this process. I could start my manuscript today and tell the story completely differently. There are so many ways to tell a story.

At some point, the endless tweaking and second-guessing will have to stop. In the next few weeks, I am going to pull the trigger on this project, and we will go to print. The one thing that I have kept in the back of my mind is that this is “my” project - my book. It is my name that will be on the cover. With that in mind, I have always said to myself that, at any point, I can stop the process. I can choose not to publish. I could print out a hard copy - place it in a binder - and never look at it again. Whatever I publish, I have to be satisfied with what I have written - that it sounds like me and accomplishes what I want.

 All this proves to me is that you can start to get a little squirrelly if you stare at it too long.

That’s the funny part of this process. I have spent my entire life in what I would call the “real world.” I’ve worked in construction, business, and have been completely comfortable in the board room - a very serious no-nonsense crowd. Now that I have written my manuscript and tried to tap into the creative side of my brain - I fear I have become one of those artsy - flakey types that I would have rolled my eyes a few years ago. I guess I have to accept that as well. However, if you see me wearing a beret, sipping lattes at Starbucks, and reading anything written by one of the Bronte sisters, I think an intervention may be required.

Monday, December 30, 2019

Transplant - 11 Years Later

Today is a very unique anniversary.

The days between Christmas and New Year spark many memories from our time in hospital with Russell. It is hard to believe it was 11 years ago. So much has happened since that frigid Edmonton morning.

We had just said goodbye to Nicole the previous night, as she and her Grandma boarded a plane back to Winnipeg. We were left feeling very empty with our family separated once again. We woke up that morning expecting another monotonous day at the hospital, but at about 8:00 am we were phoned at our hotel with news that would change our plans considerably.

The phone call where we were told that there was a donor heart available for Russell.
11 years later, it still feels like a dream and not quite real.

Susan asked me last night - after all of these years - how do I feel about the transplant? A question that is not easy to answer.

On the day of Russell’s transplant, one would have expected us to be overjoyed with high fives all around. Yes, we were very excited that the transplant would be a huge milestone, but we had been in the hospital for so long we knew the transplant would not be the end of the story.  To be quite honest, we were worried and scared.  

At this point in time, we knew Russell still had open-heart surgery to implant the donor heart and the recovery that went with it. We were petrified that we were so close to having a successful outcome that something might go wrong. We were not going to relax until the donor heart was in, and we knew that the surgery was a success. 

We never got that confirmation - at least not right away.

We got the call that Russell’s surgery was completed a little after midnight. We met with our surgeon, who did not have encouraging news. The operation was a success, but there were issues with the donor heart. He told us bluntly, “Be prepared for a rough night.”

The next 48 hours, we watched and waited. There were several anxious moments, but very slowly and steadily, we could see signs of recovery. The worst was over, and we could finally get past this initial hurdle, but there were many hurdles yet to come.

January 1, 2009 - 24 hours post-transplant

11 years later, we have many of the same feelings of apprehension and worry, but with each passing year, we have to look back at the many fantastic opportunities that “transplant” has given us and especially Russell. Russell is slowly figuring out his reality of being a heart transplant recipient. It is a lot for a little boy to process. This is a work in progress, but by outward appearances, he looks and acts like any other healthy little boy. He’s currently playing on the computer - playing video games. We consider it a privilege to worry about his screen time rather than his cardiac health.
Russell also keeps things very real. He is a normal little boy and is downright goofy. It is all of his silly antics that keep us on our toes. In the few moments when we have time to think about something like his transplantiversary - we just say, “Wow.” He truly is a “miracle.”

Happy 11th Transplantiversary Russell

Friday, December 6, 2019

Dear Anti-Vaxxers

Earlier this week, we had an Emergency Room adventure.  In an attempt to keep our immune-compromised son protected from as many infectious diseases as possible, we make it a priority to get him vaccinated. Because of his medical condition, there are some vaccines that he cannot receive.  The MMR (Mumps-Measles-Rubella) vaccine he cannot receive because it is a ‘live’ vaccine.
However, we do make a concerted effort to get him his flu shot.  This is what led us to the Emergency Room this past Monday.

In the past, our son has had a reaction to the flu shot.  We have questioned whether we should still give him the shot. With the advice of no less than five doctors, we have been encouraged to keep doing it. Now we do the flu shot in microdoses.  The shot is divided into 4 microdoses and given in timed intervals.  If the first shot is given and there is no reaction - we proceed with the next shot.  This process is lengthy, and you can imagine how our son enjoys getting four separate shots.
We took this approach last year, and it went very smoothly. There was no reaction.  This past Monday, we did it again.  There was no reaction until the fourth and final shot. After the last shot, Russell’s skin broke out in hives, and he became very agitated and itchy.  The Allergist who was administering the shots provided an antihistamine, and when she felt that was not working, she then administered epinephrine and called 911.

This engaged all of the resources of the Winnipeg Fire and Paramedic Service.  The first to arrive at our Doctor’s office was the fire truck, with the ambulance closely behind. Yes, it was overkill.

Susan and Russell were quickly escorted into the ambulance and taken to the Emergency Room at HSC - Children’s. Russell got to operate the sirens, which he did think was rather “cool.”
The purpose of going to the Emergency Room was to monitor the allergic reaction and to ensure there was no rebound effect when the effects of the epinephrine wore off. We were there a few uneventful hours and were released. We went home for a much-needed rest.

The decision to give Russell a flu shot is not unlike many of the decisions that we have to make as it related to his health care. Managing a child with a heart transplant and kidney damage prompts many discussions about the types and effects of the medications he takes. Most of the medications he takes have the potential to do significant harm to him. We are not alone in this situation, this is the reality of anyone who has to manage a medically complex condition.

So, why did we chose to give Russell the flu shot when we knew there was a significant risk that he might have an allergic reaction. After all, the efficacy of the flu shot varies from year to year, and sometimes it’s a good match, and sometimes it is not. It is effectively playing the odds.  So, why did we do it?  Quite simply, because of anti-vaxxers.  

Everyone in our home gets the flu shot, so it wouldn’t be a big deal for Russell to not be vaccinated except for the fact that with the increased prevalence of the population not getting vaccinated (thanks to anti-vax hysteria) we now have to worry about every kid with a runny nose who Russell is exposed to at school. 

We have a long history of having issues with this.  Our children have been quarantined twice due to measles scares in their school and Russell had to endure a 5-day stay in hospital when he contracted Chicken Pox. Being immune-suppressed makes diseases like Chicken Pox and Measles a life-threatening reality. All thanks to the tin-foil hat conspiracy theorists who think they know better.

Will we give Russell a flu shot next year? At this point - I don’t know. We will have to make that decision in the next few months. Just another choice in a long list of options that we have had to make over the years. It is infuriating to have to face this reality knowing that many of these diseases could be mostly eliminated if people would just vaccinate.  

The next time you see a GoFund Me page or a Social Media story about a child with cancer or some significant health malady and you feel a need to support these families?  Perhaps, think about ensuring you and the people around you are vaccinated. You might even prevent getting ill yourself.