Cardiac Transplant - Heart Catheterization

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

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

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

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

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

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

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

From the American Heart Association

What is Cardiac Catheterization?

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


Quick facts

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

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


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

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

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

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

Life with an ICD

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

An AICD is an "Automatic Implanted Cardioverter Defibrillator".

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

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

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

How did this come about....

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

What is involved...

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

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

Life with an ICD

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

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

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

Information Reduces Fear

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

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

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


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

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

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

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

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

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

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

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

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

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

So What is my Point

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

Be a Help; Don't Provide More Work

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

Listen

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

Care for the "Whole" Family/Care Team

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

Lessons Learned:

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

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

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