The Defeat of Bill C-223 on Organ Donation

The last few weeks have been intriguing in parliament.  Much discussion and hand wringing has occurred over contentious issues such as physician assisted death and changing the words to our national anthem.  Lost in all the commotion was a little publicized private member’s bill, that was tabled by the Member of Parliament for Edmonton Manning, Ziad Aboultaif.  The bill was defeated at second reading on June 15th.

Bill C-223 is a very simple document.  It is only a couple of pages and takes about 10 minute to read.  Quite simply the purpose of the bill is to establish the Canadian Organ Donor Registry and to coordinate and promote organ donation throughout Canada.

parl.gc.ca Bill C-223

The two key issues in this legislation are "coordinate" and "promote."  Most importantly the legislation calls for a national strategy on organ donation.  Canada is losing the battle on organ donation.  Canada's rate of organ donation lags behind many other countries.  A process that is not well understood and is managed very informally in a patchwork of provincial organizations that do not integrate well.

As an example, when Russell was listed for his transplant, our transplant team in Edmonton would routinely get offers of a donor organ that was completely unsuitable.  They would get an offer of a heart that would be coming from an adult.  Not exactly appropriate for an infant that is only a few weeks old.  There are basic inadequacies in the system that make the coordinating of donations unnecessarily difficult.

This legislation is a "no brainer" but of course all of these issues must become politicized.  Again this becomes an issue that if it is not a government priority it is destined to be shelved.  The political rhetoric offered to dismiss legislation such as this is nonsensical.  Kevin Lamoureux, Parliamentary Secretary to the Leader of the Government in the House of Commons, offered this response to Bill C-223.

"However, I would advise the member that there are already things in place to ensure that we are accomplishing what the member is hoping to accomplish with the legislation. Therefore, I will not be able to vote in favour of his private member's bill. " 

Is Mr Lamoureux correct?  According to the Toronto Star he is woefully incorrect.  In an article published only a few days after Bill C-223 was defeated in parliament, the Toronto Star citing Ontario statistics identified that families are increasingly refusing to allow relatives organs to be used for organ donation.  

/www.thestar.com Mourning Families Increasingly Blocking Organ Donations June 16 2016

From the Toronto Star article:

"In 2013, the province’s organ and transplant registrar recorded 14.5 per cent of families (representing 26 registered donors) who refused consent, a number that climbed to 21.1 per cent (62 donors) last year.

Given that one donor can save eight lives, the would-be donors could have meant a lot of good news for 1,524 people in need of an organ transplant on Ontario’s wait list. Experts say the refusals could prove fatal to those left waiting for a donor."

Even when the perspective donor has stated their intention to donate by signing a donor card. Donor families are refusing to consent to the harvesting of organs.  It is clear that organ donation is suffering from significant PR issues. 

One might also assume that the tabling of this legislation is one MP's pet project.  That there is not support amongst the scientific community for such legislation.  That would also be an incorrect assumption.  On June 15th, Dr Lori West a noted transplant researcher (and one of Russell's Doctors) sent a letter to the Federal Health Minister on behalf of the Canadian National Transplant Research Program where she specifically identifies Bill C-223 as step in the right direction.    

http://www.cntrp.ca Letter to the federal minister of health

Potential organ donations are being lost because our system is not functioning as it should.  Unlike the changing of the lyrics of the national anthem, this is a life and death matter and not just political correctness.  This issue matters.  What is our government's response to legislation that may start a conversation on organ donation?  The Liberal government did not allow their members a free vote on this issue but instead "whipped" their vote to ensure the legislation would be defeated.

In a letter dated June 23, 2016 that I received from Mr Aboultiaf, I have been assured by the member that he will not be stopping his efforts to improve and promote the organ donor system in Canada.  I commend Mr Aboutaif for his efforts. For those who wish to support him in this very important issue I suggest you contact your Member of Parliament and voice your support for this kind of legislation and organ donation.

IWK Health Centre Makes Poor Food Choice

Freedom is something we all value.  We all cherish the ability to make choices even if they may not be the best things for us.  This is especially true of food.  Everyone has that guilty pleasure; be it a juicy hamburger or an ice cold slurpee on a hot day.  We all know that these things are not the healthiest of food choices.  We know they are loaded with fat, sugar, or salt...but every once in a while it feels so good to break a rule and have a small indulgence.  They just taste so good there is good reason we call some of these foods a "comfort food."

IWK Health Centre in Nova Scotia is trying to provide healthier menu items for their staff, visitors, and patients by eliminating several food items that they deem unhealthy.  A very commendable and well intentioned idea.  It is likely that all of us could eat a little better and as a health care institution they are trying to set an example.  I just have a few issues with this policy.

IWK Health Centre Stops Selling Pop and Juice - Jun 7/16

2nd from the left.  That is cucumber infused water.  Yum!

IWK Health Centre is , among other things, an acute care pediatric facility.  As such they will be treating some medically complex kids from all over the maritimes.  I feel very sorry for these kids and their parents.  If you show me a child who has a lot of medical history and has had significant interventions, it is not uncommon that you will find a child with an eating disorder of some kind.

In our own case, Russell was tube fed for nearly a year, as an infant.  After we came home from the hospital we made several attempts to get Russell eating orally and we did make some progress.  We were seen at a feeding clinic where we got some tips on how to transition.  In spite of our efforts, and the support we received, Russell was not gaining weight and earned that often feared title of "failure to thrive."  As a parent you feel like a failure.  An inability to feed your own child is a devastating indictment.  We would try anything just to get him to eat.  As we shared some of our experiences with other "hospital" parents we heard similar stories.  This wasn't uncommon.  One mom shared with us how her son's food sensitivity was so severe that he would projectile vomit foods with textures that he objected to.  In desperation, they would peel skins off of grapes and feed them to her son as this is the only way he would eat.  She would spend whole evenings peeling grapes and fighting tears of exasperation as she did what she had to do to get any kind of nutrition into her son.

We felt the same exasperation.  What kind of parents are we that our own son is malnourished.  As we tried desperately to feed our son, our doctors suggested a G-Tube.  A surgery would be booked and Russell would have a tube inserted into his stomach so that we could tube feed him on a long term basis.  This was a huge blow.  Not another surgery!  Not another device to have to deal with for months and possibly years.  We had a surgery date booked and we tried desperately to try to get Russell eating to try to avoid another surgery.  With coaching from the feeding clinic we tried every kind of food (and trick) imaginable.  Yes...some foods that were loaded with sugar.  Anything that Russell might like.  We dropped any pretence that we were going to feed him something healthy we just wanted calories in him.  If we could get him eating junk food, then maybe we could get him eating something else.  Quite literally breakfast cereal saved us.  Specifically, Froot Loops.  The boy loved them.  Don't get me wrong.  These things are pure sugar with chemically infused froot flavour.  These things are horrible...but it allowed us to get milk into him.  Milk which he refused to drink.  Our next issue was Russell's kidneys.  His kidneys have some damage and we need to pour the fluids to him. In addition he is on a Potassium reduced diet also because of his kidleys. Working with our nephrology dietician we introduced him to Peach Juice.  The cheapest & nastiest peach juice on the market. It also contains no Potassium (and not much else). For 7 years Russell has been happily drinking this stuff that

contains nothing but water and sugar and some peach-like flavouring.  This coloured sugary liquid has been keeping Russell's kidneys happily churning away.  Thanks to junk food Russell was able to avoid the G-Tube surgery.  This is not the end of the story.  As time progressed we were able to get healthier food into Russell.  Protein has been a huge challenge but slowly he is starting to embrace meat and that has been a huge success.  However, the progress has been painstakingly slow.  He still has significant eating issues to this day.  He is still very fussy about things with texture or foods that are mixed together.  We suspect this has a lot to do with "control."  Because of his complex medical past he has been forced to ingest medicines and numerous other things that are not exactly pleasant.  Being able to control what goes into his mouth is undoubtedly a huge issue for him.

My concern about what IWK is trying to do is more about their patients and their parents.  Hospital is a terrible place for a child and this is coming from a parent that saw hospitals save his son's life. There are herculean efforts made by child life, social work, and many others to make a hospital stay much more pleasant but the bottom line is that it isn't a lot of fun.  For the patients or the parents.  Is allowing a child the "comfort" of a treat so terrible?  Is allowing Dad the luxury of going to the cafeteria and have a cherry danish (as I have been known to do) something that should be banished.  All the hospital is doing is off loading work onto patients and caregivers.  Parents will bring in food into the hospital that their kids or they themselves prefer.  The hospital just made this less accessible.  Keep in mind this is coming from someone who has smuggled salt packets into my wife's hospital room as they (the hospital) consistently put her on a low sodium diet in spite of the fact that sodium is helpful to her as it relates to her heart condition.  People just don't use any common sense.

I understand what IWK is trying to do.  It is a noble effort.  Yes, we all should eat better.  We get it.  However, this tactic, as well intentioned as it is; is misguided.  This can only serve to further add to the guilt many parents feel about how their children eat.  Children with significant food aversions and eating disorders.  IWK should be coaching parents and helping them and not shaming them because their children do not drink cucumber infused water.

I could imagine what a parent might say to their child if they were in palliative care.  If they wanted a can of Coke....they would get a can of Coke.  Hospitals should be about patients and providing care for them not making what feels more like a political statement.  It seems ironic to me that you would deny a child a glass of ginger ale but then give them a cytotoxic medication that suppresses their immune system.  Doesn't that seem a bit odd?

OK....now who is up for a Fat Boy and a Milkshake?

We Have a Date

What started out as an idle conversation in early December has now come to fruition.  Susan has been booked for open heart surgery in Edmonton at the Mazankowski Heart Institute.  Her big day is August 3rd.

For some background on her condition and what her surgery will entail, feel free to follow the link provided here:

What is Hypertrophic Obstructive Cardiomyopathy

As I have shared with several people this is both good and bad news.  Good in the sense that some action is taking place and our team seems to think it will help Susan out.  Bad news is that this is effectively still two months away.  That is a long time.

I am sure there will be considerable whining in the next few blog posts...so I will leave that for another time.

I found this the other day.  A Biblical reference for cardiac patients on wait lists...who knew?

I would have lost heart, unless I had believed that  I would see the goodness of the Lord in the land of the living; Be of good courage, and He shall strengthen your heart: Wait, I say, on the Lord

 - Psalm 27: 13,14 NKJV

My Life is a Reality TV Show

It was another fun-filled week of adventures this week.  My last post gave a brief rundown on what a typical week is like for us.  It's busy, but many people are busy.  Everyone is busy nowadays.  Our normal routine is just a little different than most in that our lives are just a little preoccupied on all matters health related.

We have a lot going on right now.  Susan is pretty much stuck at home waiting for surgery and Susan's Mom has just had major abdominal surgery and was just released from hospital this week.  We have a very full plate.

If that wasn't enough, we had a little medical detour this week.

At 5:00 AM on Wednesday, Russell woke us up as he was in significant pain.  The abdominal pain that he had encountered a week earlier was back.  He was in a lot of pain and was clutching his gut.  Tylenol and a little bit of time solved the problem the week before.  We gave him some Tylenol and tried to get him back to bed to rest.  Given that the pain had returned we figured a call to the pediatrician was in order.  Later in the morning, we were able to reach our pediatrician by phone and Susan had a quick discussion.  Because of the pain in the abdomen Russell's breathing was very shallow.  Recommendation from the Dr was to see if the Tylenol and a little rest would help.  If after a couple of hours the pain was still persisting....it would be a good idea to head to the ER and at least get a chest x-ray.

Late in the morning we decided to head to the ER.  I met Susan and Russell at Children's ER at about 12:30.  On the way, we ran into two of our cardiologists, and we also said a brief hello to the ER Patient Care Manager.  Yes, we are on a first name basis.  As we never wait in the waiting room, we quickly made our way to Treatment Room 11, and got ourselves settled.  With cell phones in hand, we notified our nurse clinician and our transplant cardiologist that we had arrived at the ER and gave them a brief rundown on the situation.  We had a response from both of them within 15 mins.  So, with our backup in place, we proceeded to concentrate on making Russell comfortable.  He wasn't in bad shape but he was still in discomfort.  He was mostly agitated about where he was.  He knows the ER far to well.  We had a quick visit from our nurse...did a blood pressure...she got us a pillow and she was gone.

I must apologize and maybe i'm a health care snob but I'm not a big fan of working with the "B" team.  Our next visitor was a pleasant young man who identified himself as a med student.  Yay, we get to educate Skippy on transplant cardiology.  I suspect that attending physicians send med students or inexperienced residents to see people like this us as a hazing ritual disguised as a "learning experience."  Skippy obviously came into our room a little unprepared and obviously hadn't read Russell's chart.  Keep in mind that when we present at Triage, the first thing was say is "This is Russell Lepp and he is 7 years post cardiac transplant."  On this day...this was written by the triage nurse at the top of the chart...IN BIG BOLD LETTERS.  Unfortunately, for Skippy he didn't get the memo.  He proceeded to ask us all the typical questions.  It was becoming obvious to Susan and I that from the questions he had no idea about the patient's history.  We just looked at each other with the collective eye roll.  This went on for about 10 mins and then he asked about his medical history.  "Had he had surgery?"  This is when we started to laugh.  I know it probably isn't the most constructive response but it is the kind of thing that happens to us fairly often.

Once we got Skippy organized, we got the process started again.  As Russell was a bit congested, and because of the shallow breathing we were sent for a chest X-ray.  Skippy was very helpful and showed us the way.  We had to explain that we have been there a few times and knew the way.  In fact Russell, could conduct tours of Health Sciences Centre.

Chest X-ray was done quickly and we headed back to Treatment Room 11.  A few minutes later our attending physician rolled in with his initial assessment and who had had a peek at the chest x-ray.  The chest x-ray indicated no pneumonia and likely just a bit of a cold.  No surprise.  He told us that he would have the radiologist have a look at the x-ray to get their opinion.  He was concerned that this issue had re-occurred and it seemed like our trip to the ER would end with no resolution...our Dr indicated that he wanted to pursue the matter and not let it go.  Russell was still a bit sore but it was obvious that he was steadily getting a bit better.  The ER Doc wanted to run blood work.  We suggested that we could run his order when we went for our regular blood work which was due.  Russell's regular blood work has to be run at 8:00 am.  We got an order set from the ER Dr and we agreed we were going to come back in the morning and run the blood work.  We needed to ensure that the results of the blood tests would go to both Doctors, so we had a little bit of coordinating there.  This was solved by a quick text message from our ER Doc to our transplant Doc.  We left the ER at 2:30.  We were there a grand total of 2 hours.  Probably one of our quickest trips to the ER.

Later in the afternoon, we received an email from our transplant cardiologist stating that she had talked to the ER Doc, and that she had been briefed on the entire ER visit.  She stated that if the blood work showed nothing unusual, that she would order an ultrasound for Russell, to be done as an outpatient test.  Even though we had left the ER, care was still happening.

I share this experience because I wanted to have people understand how much coordination has to happen even for the simplest of things.  The reason this episode was well orchestrated was because we were dealing with three cooperative Docs.  Our Pediatrician, ER Doc, and our Cardiologist.  Many times you hear about silos in health care.  That the right hand doesn't know what the left hand is doing.  This is all true.  What made this trip more coordinated.  The consistent player in this short trip to he ER, was us as the parents.  We were able to transfer info from one silo to the next.  Our pediatrician gave us info and some questions to ask when we arrived at the ER.  We eliminated having to poke Russell twice by waiting until the following morning when we could run Russell's standard tests.  When we conveyed to the ER Doc that our cardiologist was aware of what was going on and that we were in Emerg, that changes our conversation.  He knew that he was not obliged to treat anything, he knew that he could hand us off to cardiology where they could spend more time and do a proper investigation.  During this whole process we were keeping all parties informed as to what was going on and in turn we had a much better experience because we knew what was going on at all times.  We were never left guessing.

Many times the coordination that I refer to above happens without the family being aware.  The family is left guessing and making assumptions.  That is not a good feeling.  Many times we, as families, are assuming this coordination is going on and many times it is not.  The silos don't communicate well and messages routinely get missed.  We have seen this more times than I want to remember.  It is not only the job of health care professionals to engage patients and families like this but it is also incumbent on the families to interject and ask questions.  The problem is the vast majority of the population has no idea how to do this.  After 8 years we are still learning.  This is a constant challenge.  Patients/caregivers need to be educated; and they need to be involved.  It is the only way I see anything improving in health care.  The problem is that there is very little training and supports for families to become effective advocates.  Most of the learning is done at a bedside and mostly by trial and error.

A Note about Skippy:

I refer to our med student in this story by the name of "Skippy" and I'm not very nice to him.  HSC is a learning hospital and med students are all over the hospital.  I hope that this young med student becomes an excellent physician someday.  To get where he is today I have no doubt he is a smart guy, probably a lot smarter than me.  In our years of experience and having gotten to know many Doctors at a more personal level.  I am struck at how human they are.  We (general public) get some strange ideas of what Doctors should be.  Some kind of caped super hero.  We have to realize that at one point they were all struggling med students just like this young man we encountered.  I hope we weren't too rude in our encounter but in reality all Doctors will deal with some challenging families.  I hope some lessons were learned on Wednesday and if I was a little obnoxious or a little overly sarcastic...my apologies.

Our Week in Health Care

I read an intriguing article this week about a study that was done to understand the what caregivers go through on a day to day basis.  There has been more information coming out lately about the strain that caregivers are put under when caring for a loved one.  I thought this was an interesting read.

Forbes: Using Big Data to help understand the lives of Family Caregivers

This was of particular interest to me as I have tracked our various activities in health care through this blog and previously on our care page.  Although I think writing is a great outlet it wasn't until I "live-tweeted" a trip to the emergency room that I saw the emotional roller coaster we were on.  Reading my tweets later I saw a minute by minute narrative of a fairly straight forward 5 hour trip to the Emergency Room.  The range of emotions was eye opening.

In the spirit of understanding what complex care is like, I thought I would share a little bit of what our week looked like this week.

Monday - Victoria Day

A quiet day just the normal medication routine.

Russell

• 8:00 AM - 4 Meds (All Liquid) - one which needs to be blended with water and must be followed by 4 oz of juice (to prevent mouth sores).
• 8:00 PM - Same 4 meds are given as in the morning.  One additional med is given in the evening in the form of a sub-cutaneous injection.

Susan

• Her med routine is straight forward but she has to take meds 4 times a day.  

Tuesday

• Normal Med Routine - Same as above - 7:15 AM and 7:30 PM - We give them earlier because it's a workday. 
•  Call to the Mazankowski.  As we are waiting for a date for Susan's surgery, we had not heard from them for a couple of weeks.  Was able to talk to the surgeon's office.  Our surgeon had been out of the office the previous week and I was told they may discuss Susan Wednesday or Thursday.
• 7:00 PM - Skype Meeting - Stollery Family Centred Care Council Meeting - Heard a patient story from a Mom who chronicled her story of losing her infant son.  Great discussion following this presentation.  Some of the points she shared could make great topics for several blog posts.  Rest of the meeting was normal council business.  Finished up around 9:15
• Because I had a meeting I did a lot of getting the kids ready for bed routine ahead of time.  Susan cannot go upstairs and put the kids to bed.  I took a short break from my meeting to ensure the kids get into bed and weren't behaving like total maniacs.
• Work

Wednesday 

• Normal Med Routine  7:15 AM and 7:30 PM
• Work
• No Call back from Susan's Surgeon

Thursday

• Normal Med Routine  7:15 AM and 7:30 PM
• Russell had some significant abdominal pain.  We saw something like this before (previously we had taken him to Emerg).  We decided to keep him at him (from school) and gave him Tylenol for the pain.  If the pain continued we would take him to hospital.  Fortunately, the Tylenol did the trick and he seemed fine after lunch.  Experience noted in case this happens again.
• Susan's Mom heads to Health Sciences Centre for surgery.  In early May they found a mass in the area of her Gall Bladder and Liver.  Surgery was done successfully.  Gall Bladder was removed, Liver was fine.  Mass was removed and cancer not indicated.  This was a huge worry.  The news couldn't have been better.
• Work
• No Call back from Susan's Surgeon

Friday

• Normal Med Routine  7:15 AM and 7:30 PM
• Work:  Had "The Talk" with my New Boss.  I have a new Director at work.  She had been given some vague information about the health situation in our family.  She called me to discuss.  Awkward conversation as I am not asking for a leave of absence when Susan goes for surgery; I was telling her.  I didn't have time to give her the full history.  It was a good conversation...I have never had any issues discussing how our health situation effects work (and it does),  Work has always been very supportive.  I have also gone to great lengths to ensure my employer is well informed.
• Susan went to the hospital to see her Mom.  Major activity for a person who can't walk more than a few hundred feet without being winded and having chest pain.  Fortunately, things went OK
• No Call back from Susan's Surgeon - Getting frustrated

This past week was a short week and in reality was fairly quiet from a health care point of view. Also, many people ask what is going on with us. So this short diary gives a little glimpse into what is going on in our house.  With Susan's upcoming surgery we have a dark cloud hanging over us right now.  It's a worry.  As much as we try to keep moving on with our lives that is always in the background.

The other point that I wanted to make is that dealing with health issues is not uncommon.  There are literally thousands of caregivers out there who are dealing with situations like ours and many of them are much more complicated and time consuming.  The situations are also very diverse.  Someone who is caring for a parent suffering from dementia or a parent who is caring for an adult child who is a quadriplegic.  The situations people find themselves are diverse and complicated to manage.  I am well aware that our family is not the only family dealing with these kinds of issues.  These people are everywhere and they need our support.

High Maintenance Friends

Those of us who are managing or caring for people with medically complex conditions often gravitate toward each other. It seems like a natural progression. You make connections with others who are dealing with similar challenges. It is very therapeutic to share the war stories and inevitably you learn from each other. We become our own defacto support group.I think these connections are vitally important but like any relationship they do not come without risks.

While we were in hospital with Russell waiting for his transplant. One of our cardiologists would
relentlessly drag us into a stranger’s hospital room and with unbridled enthusiasm tell us “you have to
meet these people.” He was trying to show us other families who had been through our situation and
had survived the transplant process. We still keep in contact with several of these families; even if it just through Facebook. 

Shortly before Christmas (2008) we were introduced to a family. Their daughter had
been through two heart transplants. It was a bit shocking to hear their story as we thought it was
tumultuous to go through this process once but to do it twice was unthinkable.
Their daughter was in hospital for a routine check-up and was the picture of health. A vivacious young teenager. Every indication was that her cardiac issues were behind her. In spite of the challenges this family had gone through they seemed to have survived the process well and it was great to meet another transplant family. 

Through some of my volunteer work with the Stollery I re-connected with this Dad several months later. There were some issues going on in the transplant program, at the time, and we began exchanging emails and sharing some of our thoughts and experiences. It was a good experience for me to connect with another Dad. So often, when I volunteer I am the only father in the room, it is usually me and the Moms.

Our email exchanges took a decidedly negative turn when this family once again encountered health
issues. Their daughter was admitted to the Stollery once again, with Coronary Artery Disease and
indication of organ rejection. Some of our worst fears. I was on an email list of family and friends who would receive email updates, almost daily, from this family. Day after day and week after week I was a distant spectator of this young lady’s slow decline.

This was a very surreal experience for me. A year earlier I was the one writing messages like this,
documenting Russell’s experiences in hospital. Now I was the one receiving these cryptic emails and
wondering how this journey would progress. I then realized how important my own updates were and
what I had put people through only a few short months ago. It was not a pleasant experience to be on
the receiving end of these emails and being helpless to do much more than to hope and pray.
The weeks turned to months and things got progressively worse for this brave young lady. Then it
happened. I got to work, and checked my email. There was an update, but it was not from the Dad that I had be-friended. It was from his brother. He very calmly and carefully explained that the young lady who had been afflicted with years of illness had passed away the previous evening surrounded by her family. This was devastating news. This was not just a sad story of a young person who had passed to soon. This was one of “our” people. This was a transplant kid…just like Russell. We had lost one of our own.

Unfortunately, this is not the only child that we have gotten to know over the years, whose story ended to soon. Obviously, getting attached to these kids is an emotionally risky proposition. Some of these children are not only at risk of losing their lives but so many have other challenges they have to deal with on a day to day basis. It is good to know that we are not alone with these challenges but it is also very difficult to see children struggle.

Very early on in our medical journey one of our nurses cautioned us. “Don’t get emotionally involved
with what is going on in the next bed.” In other words, you have your hands full with your own child you don’t need the added stress of worrying about a child who is in the next bed who my be struggling just as much as your own. I understand the intent of what the nurse was saying and I think it was well intentioned but it is pure unadulterated baloney. Getting to know and to empathize with other people and having the ability to consider life beyond your own circumstances is an essential skill that has kept us grounded. You CANNOT isolate yourself. You can’t do this all on your own.

If I have learned anything in this process I firmly believe that human beings are capable of showing an infinite amount of compassion and empathy. When we have seen other families suffering it has been very difficult to deal with but by supporting others and engaging with other families it is taught us thankfulness and gratitude. It has also shown us that no two children are alike. One family’s experience will be different from another. We are unique and our experience will be unique. Our life is very challenging at times but the fact remains that our family is whole and intact. Caring for someone else is always the right thing to do.

We are very fortunate, that when we go for Russell’s checkups at transplant clinic, we see many familiar faces. Because they schedule all of the transplant kids on the same day; we get to see all of our fellow transplant families. Some we don’t know and some we know very well. It is so encouraging to see how these kids have progressed and have grown. If you ever want to be encouraged, this would be a great place to go. A room full of smiling faces; each with an amazing (and compelling) story. A story with many pages yet to be written.

Could Someone Explain the Rules?

 When you earn the dubious distinction of being medically complex, you get to learn lots of things about health care that you really hoped you would never have to.  The last month has been severely excruciating as it just seems that everywhere we have turned lately we have experienced some kind of lunacy.  Let me explain….

You have to be on Drugs!

Our first series of adventures involves our drug coverage.  Both Susan and I have private drug plans through our benefits at work.  We are well insured…or so we think.  In addition, we have a provincial pharmacare plan…YAY US!  The plans don’t exactly mesh real well.  Each insurance company and our provincial government are equally irritating to deal with.  Let’s just be honest; government operates like a badly run - politically motivated insurance company.  The only two entities that still use fax machines (government and insurance companies).  April 1^st marks the start of our pharmacare year.  Not a coincidence that it falls on April Fool’s Day.  On this day our drugs are charged to our private insurers.  These amounts accumulate as part of our pharmacare deductible.  Once we hit our pharmacare deductible then our private insurers are off the hook; for the balance of the year our drug charges go to pharmacare.  I am guessing that it will take us until June or July to hit our pharmacare deductible.  So far; this is fairly standard insurance stuff.  Now remember we are special.  We don’t do anything normal.  There are 3 meds that we get that require an Exceptional Drug Status (EDS) authorization.  These tend to be our pricier meds.  The EDS is filled out by our Doctors and sent to pharmacare.   This is done, behind the scenes, without any involvement from us.  If it gets missed; we have no idea.  This has happened.  Imagine going to pick up a med and being told that pharmacare won’t cover it because your EDS expired.  What do you do?  One would assume that you would pay out of pocket because you can’t go without the med.  You could just get the paperwork completed and get reimbursed later.  That would make sense... right?  Not with pharmacare.  Once you pay out of pocket…you are done.  You can’t get reimbursed.  Yes…this is insane.  The patient is punished because a Doctor forgot to submit the correct paperwork on time.  Remember this all goes on without your knowledge.  You only find out when you order and pick up your prescription.  A point in time when you NEED the med…..not optional for you to leave the med at the pharmacy.  This is our government plan in action. 

The insurance companies are equally insane.  Specifically, Great West Life does not recognize the EDS form from the government.  You have to fill out a “Special” Great West Life form for a specific med.  Make an appointment with your Doctor and have them complete the “special” form.  Again…the exceptional meds have to be re-approved on an annual basis.  This is why we prepare for our 6 month appointments with our Doctors and have a litany of forms and paperwork in hand.  We have to review with our nurse clinicians and Doctors.  We have to make sure all of the paperwork is up to date.  Folks, we are turning valuable health care resources (Doctors and Nurses) into data entry clerks.  I am also not considering the amount of hassle we go through on an ongoing basis to manage all of the “drug” issues.   There is more…much more.  We have had transcription errors and compounds mixed incorrectly.  A regular three ring circus.

How Government Makes Health Care Cuts

A few years back some of our drug coverage and pharmacare rules changed.  Many so called “natural” items were removed from the drug formulary.  This means things like vitamins or natural remedies etc are not covered.  Doesn’t seem like a big deal.  The funny thing is that these include some very necessary items …such as sodium bicarbonate and sodium citrate.  Very common among the cardiac crowd.  You may say…wait a minute…sodium bicarbonate is just baking soda.  True.  However, to get it emulsified and mixed into a liquid from a pharmacy will cost you over $100 a bottle.  If you go through a bottle every couple of weeks that adds up.  Some resourceful parents obtained the recipe from the Children’s Hospital and shared it.  For a couple of years we happily mixed up our own brew at home.  It was easy and we got good results.  Then we got a new nephrologist who was horrified that we “parents” had setup drug labs in our kitchens and asked us to switch to sodium citrate.  In fairness...it is a better med.  Better for blood pressure etc.  Again this med is not covered because it is considered “natural.”  Our nephrologist thankfully did not leave us high and dry.  Through some bizarre manipulation of the “system” she orders the med and we get it at no charge.  No pharmacare…no insurance company.  I don’t have any idea how this happens but we get the med at no charge.  Just one of those bizarre anomalies where we don’t ask questions. I'm being intentionally vague here as I am not completely sure this process is kosher.

The rule change that I referred to above also involved making some commonly available meds that were only available via prescription available as an over the counter drug.  I must give the bean counters kudos here.  By making it over the counter and more accessible they also don’t cover it under pharmacare (you don't need a prescription remember).  You have to pay for it out of pocket.  I told you those bean counters were crafty.  If the general public only knew how they were getting less and less service from their public system.  The insurance companies are complicit in this as well.  As soon as the gov’t changes rules the insurance companies follow suit.  So if you thought you could get coverage through private insurance when the government stiffs you; you would be sadly mistaken.  The patient and the taxpayer get the short end of the stick…again.

Drug coverage isn’t the only issue.  It is the tip of the iceberg.  As I have shared many times we see great disparity between adult and pediatric cardiology.  Peds Cardiology is unique in Manitoba.  When our MB patients are sent out of province for surgery, the province picks up the tab for airfare and lodging.  This is a huge benefit.  In the adult program you get no such benefit.  No expenses are paid for.  Actually this is ageism and discriminatory....but i digress.

In 2009, when Susan had her surgery in Edmonton I had to pay my own expenses to go with her.  Fortunately, I was able to find an obscure clause in our benefits package and was able to get most of my expenses covered.  That was a huge find; but I bet most people have no idea what is in their benefit plans.  I certainly wasn’t aware of this provision until I looked, and I was the HR Manager.  

What is even more bizarre is that as we prepare for another trip to Edmonton for surgery we have now been turned down by both our insurance companies related to our non-medical expenses.  Keep in mind I am with a different employer and therefore a different benefit plan.  Yes…benefit packages can vary significantly.

Health Care is NOT Free!

Being sick is a very expensive business.  If you think health care in Canada is universal you are sadly mistaken.  There are so many rules and exceptions to rules that it is truly dizzying.  Many Canadians are under the illusion that they don't need to worry about health care costs they either don’t carry extended health insurance coverage or have no idea what their plans include and exclude.  If you are unfortunate enough to have a serious illness the expenses that are not covered by medicare can still devastate you financially.  This is why we are seeing more and more GoFund Me pages for people who need to raise money to support themselves as they face some of these very daunting and very real costs.

I am also exceedingly frustrated that I see so many inconsistencies in the system.  One program is funded and another one is not.  One type of cost is covered and another is not.  If someone would just explain the rules and not change them; I could prepare and be ready for life’s emergencies.  What we are faced with seems like anarchy.  It is amazing that 8 years later we are still encounter new issues to deal with.

There is another issue that is worth mentioning.  Imagine trying to do all this navigating through insurance companies and gov't programs while being sick or alone.  Another really important reason why patients need advocates and caregivers to help with all of the bureaucracy.  It is essential to have the emotional and technical support.  In my opinion this kind of support is not optional.