Susan's Story

To share Susan's Health Care story I have to back up a bit and talk about her Dad for a bit.

Susan's Dad was diagnosed with IHSS when he was in his late 30's.  IHSS is Idiopathic Hypertrophic Subaortic Stenosis.  For those who are well versed in Cardiology; they know that is old terminology.  This is what is more commonly known today as Hypertrophic Obstructive Cardiomyopathy (HOCM).  At the time HOCM was considered extremely rare.  These were the days when MRI and some of our more advanced imaging technology didn't exist.  This condition was rare and often misdiagnosed.  As imaging technology advanced we learned more about it and realized that it was much more common than originally thought.  For more info on HOCM check out my previous blog post.

http://donaldlepp.blogspot.ca/2015/12/what-is-hypertrophic-obstructive.html

When Susan was diagnosed with HOCM in March of 2008, we had a reasonable understanding of the condition based on previous experience with Susan's Dad.  The meds and the day to day management were reasonably well understood.  What was not well understood was how HOCM would affect a pregnant woman.  Susan was 4 months pregnant with Russell at the time.

Thinking back at those months when Susan was pregnant bring up a lot of questions in my mind.  Were the Doctors totally honest with us about the risks related taking the pregnancy to term?  A 38 year old woman with HOCM is not something they would see everyday.  Did they even understand the risks?  Did we put Susan at serious risk to take this pregnancy to term?  I think so...not sure the cardiologists would have agreed but given that Susan's symptoms really only started the day after Susan gave birth I think is a very strong indicator that the pregnancy accelerated the damage to her heart.  That is just my uneducated speculation but I think there is significant evidence to support the argument.

Heart Defect x 2

3 weeks after Russell was born, he received his own diagnosis of cardiomyopathy.  This is where things got complicated and confusing.  We now had two people in our house with chronic congenital heart conditions.  Russell monopolized most of our conversations as he was the baby, and in significant distress.  Mom got forgotten about.  For the next 8 months our lives were totally monopolized by Russell, with his crash, transport to Edmonton, and subsequent heart transplant.  During that entire ordeal Susan soldiered on.  She carefully plodded along and tried to manage her own situation with medication.  Russell's 6 month stay did provide some respite for Susan.  For 6 months she did not have to tend to a newborn infant.  Her job that entire time consisted of walking two blocks from our hotel to his room at the Stollery Children's Hospital.  There was a phenomenal group of people who were looking after Russell's day to day needs.  While we were in Edmonton, she was referred to a cardiologist by one of Russell's Doctors.  She was under a Doctor's care the whole time we were in Edmonton.  There were days when Susan would arrive in Russell's room and would nearly pass out because of low blood pressure.  Something you shouldn't do on a cardiac ward with cardiologists present.  You tend to get a lot of attention.

Susan's more significant symptoms didn't start until after we arrived back home in Winnipeg.  Of course Susan attempted to become a Mom again.  The symptoms quickly become much more profound.  Tending to a newborn and a toddler lasted about a month.  A week after Easter Susan had her first stay in St Boniface Hospital in Winnipeg.  They gathered some info, monitored her, and discharged her after a few days.  The news was not encouraging.  Some intervention had to happen.  There were a couple of options but surgery was looking like the most likely option.

Back to Edmonton

The symptoms continued to get worse.  Susan was almost always in chest pain and was limited to moving from bed to her beloved recliner in the living room.  This was about all she could handle at this point. She was hospitalized a second time, where a new med was introduced.  It provided no relief.  Surgery was planned.  3 months after coming home from Edmonton we would be heading back to the same hospital for Susan to undergo a Septal Myectomy.

The trip for Susan's surgery to Edmonton was a quick trip.  10 days.  The Septal Myectomy was to remove some of the obstruction in her heart.   She experienced immediate relief.  She described it as having a huge weight lifted of her chest.  Finally, some good news.

The New Normal

We arrived home from Edmonton and attempted once again to hit the "Reset" button.  Susan recovered from her surgery and eventually headed back to work on a part time basis.  Working part time was a good deal for someone who wanted to spend some time with her kids as well.  Throw in our frequent visits to hospital for Russell and she had a very busy schedule once again.  Susan did cardiac rehab and was making some genuine progress.  She wasn't exactly "speedy" but she could do almost 60 minutes of exercise.  She joked how the 80 y/o grandpas would pass on her on the track but she was happy to be doing something and making progress.

At this time we had a complicated life but we were managing.  One child with a transplant and a parent managing a heart condition.  It was challenging but we were moving forward.  Things were mostly positive.  Until....

Setbacks

In December of 2009, Susan had a routine 24hr Holter Test to check on the her heart.  This is routine follow up following open heart surgery.  While on the Holter she had a significant arrhythmia.  She felt like she had been kicked in the chest.  This had never happened before and hasn't happened since.  Because she was on a monitor the "event" was recorded.  The timing was amazing.  When she returned the Holter, the monitor is interrogated and results interpreted.  The phone call came quickly.  "Uhm...Susan....you had 10 consecutive beats of V-Tac"...the words were a shock as we knew all to well what that meant.  Russell had gone into V-Tac in ICU.  We were acquainted with the concept.  Susan was quickly booked for an appointment with her  cardiologist who recommended and AICD (Implanted Defibrilator).

You have to understand Susan's frame of mind at this point.  She was done with Doctors, she was done with hospitals, and she wasn't subjecting herself to any more of this medical insanity that had monopolized our lives for two years.  She was done.  I wasn't part of the conversation but Susan described the conversation in vivid detail.  Our Doctor explained the seriousness of the arrhythmia.  Susan's response was probably a little unusual. Instead of being paralyzed by fear she resisted the recommendation.  Her Doctor got blunt...."You went in V-Tac Susan!"...which she responded "yeah and I came out of it too!".  Wow...this is one conversation I should never have missed.

Susan is as stubborn as they come and she certainly passed that on to her son.  Without that stubborn streak it's possible that neither one would still be with us today.  Susan needed time to process this setback.  Susan may be stubborn but she is also smart, she understood what was going on and after she had time to process what happened she agreed to get the AICD.  Our little insurance policy.  To this day she will gladly tell you that it has never gone off and that she thinks it was a compete waste of time.


I Can't Make this Stuff Up

After the AICD was implanted things got back to normal....or whatever we were calling "normal" at that time.  Life with little kids is always busy...add in the transplant kid, and the heart mom and we kept ourselves well occupied.  One wrinkle that came up was Susan's little altercation with a truck that cut her off as she was driving home from work.  Jan 12, 2012.  She phoned me at home and the conversation started with my favourite phrase..."I'm OK.  That's always reassuring.  She explained the situation and that she thought she had broken her foot.  Paramedics were on scene and they were going to transport her to hospital.  Our journey through the Emerg at Seven Oaks General Hospital was a bit of a train wreck (that is a whole story on its own) but we soon learned that she could not just have an ordinary broken foot but she had a unique break known as a Lisfranc fracture.  Apparently we can't do anything normal.  This required a surgical repair and a couple of screws to be put in her foot.  As the orthopedic surgeon described the foot as not being "broken" but "mashed."   The unfortunate part of this little detour in our story is that the foot is still causing Susan significant issues.  Extensive physio and rehab has helped but the foot will always be an issue for her.  As a result I have become quite skilled in the art of massaging feet.  I am a man of many talents.

Going Backwards

At this point in the story most people think to themselves...what next?  Surely there must be a reprieve in here somewhere.  Unfortunately, that has not been and will not be the case.

Susan's health has been declining for some time now.  In spite of the reprieve that her open heart surgery has given her she has slowly and steadily been degrading.  In April of 2013, while she was home alone she contacted me at work via text.  She said she wasn't feeling well (worse than usual).  Usually when she gets short of breath and has chest pain she would typically lie down and rest.  This usually allows the symptoms subside,  On this day, they did not.  Being by herself, she texted me.  The last text i received from her was that she was dialing 911.  That was the right thing to do as she was alone and given her health conditions she needs to take every precaution.  This was a bit of a wake up call that she needed to start insisting on some action from her cardiologists.

Unfortunately, action from her Doctors has been slow.  They have had trouble pin pointing physiological reasons for her symptoms.  Was stress and anxiety playing a role?  The months of back and forth have now extended to years.  The whole time things have been getting worse.  We have even enlisted the services of Russell's cardiologist to advocate for Susan.  We are pushing every button we can think of.

In December (2015), we finally started making some headway.  Our initial conversation was that we may be referred to the Toronto General Hospital for surgery but this plan was changed.  As we already have significant experience with Edmonton, we were referred back to the Mazankowski Heart Institute in Edmonton.  Susan was referred to the same surgeon, Dr David Ross, who performed her Septal Myectomy in 2009.  We were going "home."

As nothing moves quickly in health care.  A formal referral was sent to Dr Ross in February of 2016.  Communication with our Docs here is Winnipeg was not the best.  We patiently waited for information but days and weeks went by with no information.  We were only told of the referral to Edmonton in mid March (in spite of the fact the referral had been sent in early February).  No one seemed real interested in pushing the issue.  Through some digging on our own, we were able to get a hold of Dr Ross's office directly and get some information.

The Issue with the Valve

Dr Ross sent us an email and he immediately honed in on an issue that none of our other Docs were discussing.  Susan's mitral valve.  Dr Ross had mentioned this issue after the surgery in 2009.  He always described Susan's heart as having some unique physiology.  In addition to Susan having obstruction in her left ventricle due to a thickening of the septum she also had additional tissue attached to her mitral valve that didn't need to be there.  Dr Ross raised this concern in 2009, but he was very concerned about damaging the mitral valve and cause Susan more issues.  He now was thinking this tissue may be the culprit of Susan issues.  Now we would be dealing with the mitral valve in addition to any obstruction on the ventricle.

Surgery Part 2

After months of waiting, we were finally scheduled for surgery on Aug 3 (2016).  The plan was to remove obstruction and to finally deal with this issue with the mitral valve.  Dr Ross was unsure what effect removing this tissue would do to the valve.  As a Plan B, we were prepared for a valve replacement if necessary.  Fortunately, the valve replacement was unnecessary.  The problematic tissue was removed from the valve without any issue.  The results out of the surgery were very encouraging.  Her pressure gradient was even better than her surgery in 2009.  The next challenge was to recover and see what the long term benefits of the surgery will be.

....to be continued