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.

The Future of Nursing

This week I got to do one of the most gratifying things I do as a patient advocate.  I got to speak to a group of nursing students and share our experiences in health care.  For someone who wants changes in health care this is the place you have to go.  The schools where they are taught to be nurses.

Many times I will say that we are more than just a patient story.  Many patients and caregivers have some very clear ideas on the state of health care and what should be done at a policy level.  This is not that kind of discussion.  These classes are about learning from experience.  The patient experience.  We just relax and share our story.  It is about being a human being.  No hidden agendas.  No preconceived ideas.

The class we attend is part of the 2^nd year nursing program at Red River College.  Several other volunteers participate in story-telling and a panel discussion.  We have done this for several years now.  It is not an easy thing to do but it is well worth it.

For the students this is an opportunity to hear real-life examples of how they (as nurses) may impact or play a role in someone’s patient journey.  For us, as caregivers, it is an opportunity to share our experiences in health care and try to explain to these aspiring nurses what it’s like to be on the other end of the health care system.  It’s also good therapy.

The best part for me, in these sessions, are the questions the nursing students ask.  Their genuine concern and compassion for patients.  I have no idea what kind of nurses these students will become but I am confident that at one point in time their intentions to enter the nursing profession were noble and genuine.  The feedback we receive is very affirming of the future of nursing.

One of the difficulties I struggle with is what happens to these students once they graduate.  They enter the health care profession that is far from perfect.  They will be exposed to many of the failings of our health care system.  There is no doubt that the zeal they once showed in nursing school will be tempered by the harsh realities of the nursing profession.  Some will become complacent in their approach to nursing and caring for their patients.  I know that is a very pessimistic view but it is a real possibility.

It was pointed out to me that last week; on every day there was a news story in the local Winnipeg media that discussed a failure, in our health care system, to provide adequate care and compassion at a time when a patient needed it most.  These are failures of no one person but several people involved from various disciplines.  For me it is difficult to rationalize seeing very genuine and caring nursing students, like I spoke to earlier this week, eventually being in a position where they too could choose to ignore the needs of a patient.  This is the reason those of us who share our experiences volunteer our time and our emotions.

The patient experience is profoundly powerful not only on an emotional level but as a teaching tool.  I have shared and heard many patient stories.    I enjoy hearing how others approach being an advocate for a loved one. I always walk away having learned something.  This is also why I enjoy sharing our stories at Red River.  I get to meet and share with other caregivers who share their own experiences.  Such a unique and knowledgeable group. 

I know the nursing profession is an extremely challenging field.  It is difficult going to work day after day with the same level of commitment that you had as an idealistic student.  I am sure there are times when nurses question their choice of careers.  I certainly don’t want to minimize the many issues facing nurses but when you sit in one of these classes and hear, first-hand experiences, from patients and caregivers; the effect is profound.  I wish more nurses, the veterans of 15 and 20 years could hear more of these experiences.  It may just make another day of the “same old” seem a little more relevant.  Thanks nurses for all you do.