Home

I arrived home yesterday.  Not just for a day-pass like they originally planned.

When I woke on Saturday, resigned to the fact that I would be a patient at St. Paul's for the entire weekend I popped out of my room for my morning walk-a-bout. I immediately bumped into Dr. Ramanathan, the "head of the department" who was on duty when I first arrived at the CCU at St. Paul's.  As I walked passed saying good morning he called my name, I turned around and he said "would you like to go home today?" I responded with "Do I have to come back tonight?" but his response was "Sorry, yes".  With a little chuckle and I said "yes, I would love to go home today" and he proceeded to promise to arrange for a day-pass.

A few hours later I was preparing for my day-pass only to have the nurse come in and say "don't get too far ahead of yourself, you may actually go home today for good".

So here I am, home around 2:00 pm yesterday, a quick stop at home to hug, cuddle and soak up the girls and then a quick trip to Sheena's (Blown Away Spa) to get my hair washed...another wash is scheduled for Monday.  I expect that I may be able to shower as early as Tuesday baring any wound complications.  Regardless, LOVE, LOVE having clean hair.  Outside of the girls and Dwayne, maybe the best thing with coming home.

Its been a wonderful weekend home.  I'm achy, I'm scared and I'm incredibly thankful of everything I have in my life.   This includes my girls, my husband, my family, my friends, neighbours, acquaintances and even strangers who have reached out.

We have been given wonderfully kind tokens of food, thought, generosity, gifts and most of all, support and empathy.

What happens next?  Well currently I wait to hear back from the blood tests they did last week to determine if I'm a carrier for TB.  The reason being, the prednisode I''ll be taking can re-activate a dormant TB and ideally I'll want to deal with that prior to starting any meds (or at least deal with it in tandem).  Outside of that its just a waiting game, fingers crossed that my heart doesn't jump to its own beat as I want to avoid the 1-2 punch as much as possible.

I'll also get an eye exam this week at a minimum.  It may not be the one the doctors booked but I'm moving forward on my own booked exam just for peace of mind.

In addition to that, my critical illness coverage provides me access to Best Doctors and I've got the team in St. Paul's compiling my files to send for a review, assessment and treatment recommendation in the hopes that it either matches, or possibly provides some insight into possible new alternatives that could tip the scale in my favour.

Outside of that I wait.  I feel good, I don't dwell too much on the "what ifs" right now (easy to do when I feel pretty good) and I plan.  Plan for the worst case scenario and plan for the best case scenario.  Either way, I'm committed to doing what I can to have all my bases covered.

Off Balance

I found out about Sarcoidosis on Wednesday, late in the day.  From my conversation with the medical team it sounded like a lot of "our team doesn't have a lot of information on this, we'll leave it to the other team to explain".

From there I pulled as much basic info as I could on Sarcoidosis.  I had a general idea that it was concentrated to issues with the heart but my first step was to understand the disease.  In a nut shell, 75% of Sarcoidosis patients see a remission with treatment.

Day 2 was spent working on homework before my noon surgery since I knew I'd be limited typing. 

A late day meeting with another cardiac team (the heart failure team?) discussed a strategy. The strategy seemed simple.  Start steroids a few days after the ICD has been allowed to heal a bit so to lower risk if there's infection (since the steroids will exasperate the infection), do the steroids for about 3 months and hope its in remission.  Sounds simple. Sounds promising.  I was told I should see some heart function improvement once the inflammation was gone. 

I asked about how we would tell if it when into remission.  Simple answer was "we'll continue to monitor it".  When the team left I was left with a sense of optimising.  Keen to continue my life as is (full time work, EMBA courses even if I was banned from driving for the next 6 months).

Day 3 (today) was a day to delve a little deeper...still, mostly one handed so its been slow going.

I didn't like what I was seeing.  The information was not reflecting the general long term outlook that had been indicated in my meeting last night.  I also asked repeatedly "when can I go home".  No good answers. In fact, yesterday it was suggested that all remaining tests could be done as an outpatient. None were life threatening.

Today, no one had a good reason why "home" wasn't on the agenda other than "I think they want you to see the respirologists" (opps....sp??).

Early in the day I asked one of the cardio members to give me their info.  She did, the basic data on Sarcoidosis and mentioned that she would have to ask permission to give me more details.  I knew then that it wasn't good news. I felt like a terminally ill patient with 2 weeks to live being told I was fine...why wreck what time she has).

I told her I was going to be on the internet anyway so they may as well give me the information that was relevant and not risk the additional, sordid, details.

Second Team 1 meeting later in the day resulted in approval to give me all the information.  It confirmed what I read online.

Then one of the respirologist residents came by to see me.  Asked some questions, checked me over and asked if I had any questions.  I said yes, and proceeded to ask her about the information I had seen/read.

She mentioned she couldn't answer my questions but the team leader would come see me later.

He did.  An gave me some info (not new) before I asked my questions:

Is what I'm reading true? Cardiac Sarcoidosis has not been shown to go into remission?
Life expectancy with Cardiac Sarcoidosis is much worse than overall Sarcoidosis?
Why was I given a grave "likely" diagnosis, then a new diagnosis with a huge silver lining only to find out the diagnosis may be worse than the first?

In a nut shell, prednesoid steroids will likely be intermittent but continuous for the rest of my life.
They don't know how long the rest of my life will be. Some studies show 8 month medium survival rate following a symptomatic event (my VT event).  Some studies show 89% 5-year survival rate, some show 45% 5-year survival rate (in situations where Isolated Cardiac Sarcoid has good left ventricle output...so far they say I have this).

ISC is poorly understood...so they don't know what to tell me.  There are no other indicators (other than the left ventricle output...not the official medical term) that will dictate whether I live or die (in the next 5 years anyway...apparently there's not enough data to estimate beyond that period).  I could be a 70-year old "good left ventricle ISC" and outlife a 45 year old "good left ventricle ISC"

There are two great silver linings in all this. 
     - Its not genetic (or at least if it is it can be caught early and likely not impact like ARVC would have) and,
     - ISC patients make great heart transplant patients (1-year and 5-year survival is higher than average)

So in a nut shell, I have a lot of soul searching I need to do.  My bucket list is pretty small but I'm thinking the one thing on the list may not happen...have grandchildren (or at least hold them).

So I'll have to change that list...and the changes will have to start today.  I'm pretty sure it'll be stellar.

In the meantime, I've got to find a balance with this new information. 

Right now I'm off balance but I promise, it won't be for long...

The $19,000 Dollar Woman

The IDC insertion yesterday went well.  I'm sore, mostly though its my muscles, back and chest, that are screaming in misery.  They aren't used to this type of punishment.  The incision itself feels just fine. 

For anyone else that may have gone through this, or may in their future, I have been experiencing a weird sensation in my heart that doesn't have a clear cut explanation.  Apparently my ICD has a pacer in it that doesn't allow my heart rate to go below 60 beats a minute.  That pacer is not what I'm feeling because the discomfort doesn't happen when I'm completely resting, rather it only happens when I'm sitting up, walking, etc.  They are monitoring my heart rate and say its good, so this may be part of my new normal.

The surgery went well. My surgeon is a cardiac surgeon who works on children so I figured he was possibly pretty competent. 

My request was either a nice neat tidy scar or, failing that, a really bad ass scar.  In the end he said its  possibly the smallest scar he's made for this type of surgery.   ;)

I'm not sure when I'll get to go home.  I'm pushing for today...they are now avoiding me in the hallways so they don't have to give me an answer. Unfortunately they are fast than me and more familiar with knowing the effective hiding places.

I suspect I will start my steroids tomorrow.  They will also be putting me on a TB medication. An interesting combination but the prednisone can re-activate dormant TB and so better safe than sorry.

I'll have to have some eye tests and another CT for my lungs. They've done bloodwork for my kidneys and liver because this disease rarely only affects a major organ like the heart.  In fact, the doctor said today that 13 in ~100,000 cases it affects the heart, the majority of these there are other organs impacted so the assumption is one of my other organs will likely see some impact. 

Hoping its not the liver. :D

As for my title of today's blog, just before my surgery the surgeon (and team) managed to destroy an ICD.  The price tag? + $19,000. 

Thank you tax payers. ;)

Better than the Alternative

Its official - Scarcoidosis is my diagnosis.  Despite the team approaching it with some trepidation they have confidently settled on a diagnosis and treatment. 

Essentially it’s an autoimmune disease, likely caused by an environmental factor.  What that was, we don’t know and we may never know. I get the sense that the medical team doesn’t really care about the “why’s” behind the cause.  Identifying that may be another chapter in my life.

Essentially it’s an inflammation disease that damages organs in the body.  For many people the damage is associated with no major organs (the skin for example) and often the body can eventually fight off the inflammation.   For others, the inflammation damages some of the main organs, most commonly the lungs. 

I’m told its not an uncommon condition, and having damage to the heart isn’t too uncommon either.  The team has treated patients with heart damage caused by scarcoidosis.  What is rare is when the heart is the ONLY organ affected.  Hence why the team sat on my results for the day and cross checking the data to ensure there were no conflicts.

It’s rare for the heart to be the only organ affected that they are keen to do a number of other tests in my near future to rule out other issues.  It may be that I have damage to my eyes, or some damage to the lungs that I haven’t presented symptoms with yet (though they have said they sound clear).  There are other tests/checks that they will be doing but for today, none of these are life threatening and thus they don’t severely impact any immediate treatment to deal with the life threatening symptoms I do currently have.   

Even better, with a course of steroids they expect that they can supress/stop the inflammation and regain some of my heart function.  The damage will still be there but they also believe I function pretty good with the heart operating only at 2/3 where it should be so they are hopeful that even just a small improvement will be enough for me to return to the same quality of life I had before.

So in a nutshell, here are the benefits that this prognosis gives me:

-          It’s not genetic.  So my children are essentially safe from it (small risk that its hereditary) and other family members are as well.

-          There is a potential  for my heart to get a little bit better with the removal of the inflammation

-          There is the potential that the heart won’t continue to degenerate.

There are still some risks looming in my future but the odds of many of the major ones occurring are much lower than what the alternative (AVRC) was:

-          I still need an ICD (insertion scheduled for tomorrow at 11am)

-          Steroid treatment for several months = weight gain, risk of type 2 diabetes, depression and other potential side effects

-          Life-long heart medication to help my damaged heart, so far minimal side effects

-          The immune suppression could cause other issues while on the steroids (initially infection with my ICD is the foremost concern so they won’t start the steroids till a few days after the surgery)

-          The steroid treatment may not be effective with treating the scarcoidosis.  If that’s the case, continued inflammation could continue to damage the heart or impact other organs (again, it’s a risk but much lower than the alternative).

-          I may still be a heart transplant candidate but again, the risk of this is much lower than the alternative.

-          There is one study showing that scarcoidosis doesn’t have any impact on being a transplant recipient while another study shows that scarcoidosis suffers may not be candidates for heart transplants.  This is far in the future so I’m shelving it until after I cross the first few dozen hurdles.

I will be sure to update on my ICD insertion tomorrow.

I Swear to God I'm Not Making this Stuff Up

If I wasn't the one who actually spoke with the medical team every day I would not believe for a second that this stuff was actually happening.

What's really bad luck??  Having a bad heart?  Yup, I agree.  Having a bad heart at age 40??  Yup, that's pretty crappy.  Worse was having a bad heart with a 50% chance of those around you also potentially affected. 

How about having a bad heart caused by a disease that doesn't normally materialize in the heart?  Imagine having a disease that the heart doctors look at and say "ahem... soooo, we're not really sure what's going on, this is not common".  Back to describing it as "impressive" but for all the wrong reasons.

So the new "theory" stems from the results of the heart biopsy.  The cells taken ruled out myocarditis (recall, damage to the heart due to infection).  There is no confirmation on AVRC.  The reason they could rule out myocarditis is that this type of damage, inflammation, tends to be pervasive, thus a they don't expect a biopsy sample to "miss" an area affected by potential myocarditis. 

Alternatively, ARVC tends to sporadically damage areas of the heart and as such, a biopsy may miss an area affected by ARVC damage.  I knew this going in, that the biopsy results may come back inconclusive. 

However, they did identify "something".  I'm going to assume its damaged cell tissue.  This damaged tissue indicates something called Sarcoidosis.

Now, for the record, I have no idea whether this is good or bad. Depending on what website you read (love Dr. Google) this could be amazing!!  Treatment for sarcoidosis can completely stop any further damage, issue or symptoms.  This could be bad.  Typically sarcoidosis affects the lungs or other parts of the body.  Rarely does it impact the heart.  Rarely does it cause significant damage in vital organs and the literature does not favour these situations.

In so far as how the news was delivered, my favourite resident (recall the "we hope to extend your life expectancy" comment) made me feel like that word, "sarcoidosis" was possibly worse than ARVC and I can't say I had much confidence in the general sentiment.  Admittedly she did say that they were reviewing all the information simply because the pathologist (the guy who looks at the heart biopsy) only had limited information in his diagnosis and they want to ensure if they rely on this information that it conforms to all the other information that has been compiled.

So now I wait, starving, waiting for a response as to whether the ICD will occur today and/or whether the sarcoidosis will have an impact on the ICD.

De-Fibrillation Day....NOT.

They got me excited this morning...don't eat anything, your on the schedule for your ICD implant today!!  Whoohoo, maybe I could start thinking about home.  Reminds me when we heard that word for the first time with Payton.  Perhaps I should post a blue bird on my dry erase board :).

Alas, it was a tease. I spent the day navigating visitors, turning other visitors away (especially the ones that I hope to maybe see once I got home that night...sigh.  I should have known.   One step forward, two steps back.

Still, today wasn't a total wash.  My old OB came up for a brief visit and put a bug in my ear about speaking with the surgeons about placing the ICD under my breast muscles rather than up near the collar bone.  I was now on a mission to minimize the visibility of my ICD and fight for my right to let my vanity dictate some of my medical decisions...decisions I had very little control over.  So this was right up my alley of being a worth cause. 

Also, some of the heart literature I had been reading talked about how its well known that men get preferred treatment over men for heart related issues.  So this 'new idea' (new to me, not so new I'm sure to others familiar with ICD implants) was going to be me playing my part in paving the path for women to have higher expectations in their treatment.

Alas, when I finally sat down with the resident and asked my question about the placement of the ICD, his response was that it was a slightly higher risk.  I balked...I don't need more risks in life.  Still, he said its definitely something we can review for my procedure, brushed off the increased risk making me feel like this was a valid and worth request, and as such it will be discussed with the surgeon as an option.

Did I mention there was no ICD surgery that day?  Oh yes I did, the Argentine shuffle...

Anyway, the day in the hospital wasn't a total wash.  I also met one of the team members from the BC Inherited Arrhythmia Program in regards to the possibility that my condition is caused by ARVC.  Despite the fact that the biopsy results are not yet back she wanted to initiate the discussion and get the ball rolling on some of the things since there is such a lag time.  If the results show no sign of ARVC she can easily cancel any request without issue but this way we are expediting the process ASAP.  I won't delve too much on what we discussed simply because its a lot of information that may have absolutely no bearing on me depending on the biopsy results.

Today I also finally got my signal-average ECG.  No surprising results there, rather it simply confirmed what they were already looking at. 

As for tomorrow, I have been given a 90% chance that my ICD surgery will take place. I have been given a small chance that this will result in me going home tomorrow...more likely, if the surgery takes place tomorrow, I'll be home on Thursday barring no complications and my ICD isn't a lemon.

PS - I'm still feeling well.

Still Alive!!

Did you know that most deaths in hospitals occur on holidays or the weekend? 

Well, happy to say that by Monday I had survived 2 weekends and 1 holiday.  Still Alive!!

One thing I realize I haven't noted through this whole experience is how I have felt.  Aside from the really shitty feeling of being told "we are just looking to extend your life expectancy" and hearing the words "heart transplant candidate" I have felt great even before I stepped into the hospital.  In fact, the only time I have felt crappy is when the medical staff have been at me, medication to try to reset my heart rate, poking me to place more than 8 IV's, daily blood draws, beta and ace inhibitor medication. 

But still, I feel healthy, I feel strong and I feel like I should be any place but here.   So for anyone who's hoping I "feel better soon", its worth noting that I feel great.

Monday was one of the more memorable days of my life...the day I got my heart biopsy.  For anyone who ever has to have one of these unpleasant experiences, I have only one recommendation...get the sedative!!!!

I was told it was a very non-evasive procedure but I have to say that I have never felt so violated in my life.  They went where no person should ever go!!  And the memory of that experience is not even slightly dulled much to my chagrin.

When I heard the doctor (surgeon? are they considered surgeons?) say "no, not that one, that's the artery, that ones the vein" I saw my life flash before my eyes.  At that point, scalpel at the throat, I was too afraid of any unexpected movement to say "perhaps he shouldn't be practicing on a patient that has barely lived half their lifetime!!"

Thankfully, I survived and ironically the entry hole isn't quite as big as I thought it was going to be when the not-so-experienced-surgeon said "I need more scalpel".

Now we just wait.

MRI Day

"There is a lot of damage to your heart" are the words that I remember from the doctor as they explained the MRI results.  These words stand out in my mind. 

There are a few other phrases that also stand out during this conversation "continuing deterioration", "heart transplant candidate", and "likely genetic"...the last being the one that has resulted in more tears than any of the others.

In a nut shell they explained that the MRI showed a lot of scarring on my right ventricle and to their surprise, it also showed scarring on the left ventricle.

Alas, there is one obvious reason for the right ventricle damage, and an obvious reason for the left scaring. 

Right damage: AVRC (a genetic disorder that causes scarring on the heart, typically seen in the right ventricle).

Left damage: Myocarditis, caused by virus.

No obvious reason for damage to both ventricles.

Next step, CT scan...this was completed within two hours of them delivering the results. 

From there, they wanted a heart biopsy.

Also talked about on Friday, MRI day, was the plan to place a de-fibrillator or ICD before I left the hospital.  That no matter the reason for the damage, the ICD was needed to fix or correct when another episode occurred as they don't know whether another episode could be the one that results in sudden death.  Nuff said.

Friday was a long day.

The First Few Days of the Rest of My Life

My first day at St. Paul's Hospital in Vancouver was a strange day.  I was given a few tidbits of information, information which didn't mean much to me.  Mostly though, there were a lot of questions asked to me...a one-way communication channel for the most part. 

I did have a name for what I had just experienced.  VT was the only way I could remember what it was.  No phone, no computer for that day I was at the mercy of what little bit of information was given to me and even less of that information made any sense to me.

I still thought that my event was closely tied to my dad's Atrial Fibrillation issues.  It took another day till I realized that our issues (different result in a different part of the heart) were not related at all.

One of the questions that was asked repeatedly was "is there anyone in your family who has suddenly died?".  This question was asked in about 6 different ways (if you can imagine this question being asked in different ways, "anyone in your family who has just died mid conversation?", "anyone in your family who may have drown?" or "anyone who was in a car accident?".  Apparently sudden death in various circumstances can have unfortunate results depending on what your doing at the time.

Alas, it took till Tuesday for me to understand to a very basic degree what was happening.  I had experienced ventricular tachycardia. The tachycardia was coming from the bottom of my heart at the apex between the right and left ventricles.  The ECHO (a fancy ultrasound) showed a heart that wasn't working as it should.  A few metrics were given, 2/3's of how it should be working or 40% (which sounds scary but apparently the average heart works around 50-60%?? if my source can be relied upon).  At this point I had had several ECG's (one while the VT event was occurring) and an ECHO.  From what I understood, the ECG was abnormal and the biggest worry from the ECHO was that my right ventricle wasn't squeezing properly and it was enlarged. 

It was then that I was given the talk about how serious my condition was.  I was lucky and that what was happening was 'very serious'.  Had I been 60 I wouldn't have even made it to the hospital...the fact that I was able to drive myself to the hospital was apparently somewhat of a feat.  For the record I felt fine, even when the VT episode was happening. To a point where, unless I was lying down, I couldn't tell it was happening and I almost turned around to come home thinking it had passed.  Ironically enough there's strong suspicion that I had an episode riding up Legacy Trail and thus I would have descended Angry Midget while having a VT episode...if I can ride a black diamond trail I can sure as hell drive a car...well, unless that pesky sudden death symptom occurs.

On Tuesday they estimated I would be in the hospital about a week and I was moved out of the CCU into the Heart Clinic, a much easier place to hang out and they set a game plan. They wanted an MRI and a signal average ECG.  It took till Friday for my MRI.  The results were available immediately and the results weren't what we wanted.

Hello Old Friend

Hello old friend.  It’s been a while since we came to visit here.  Since we last saw you many wonderful things have happened.  Olivia and Payton have grown and kept us on our toes, both girls have started school (Olivia in Kindergarten and Payton in pre-school), Renee has started on a different career path as an Advisor with a financial institution and Dwayne has continued doing some of the work he did years ago and also has assumed control of the household, staying home with the girls most days.

Renee, Olivia and Payton during our Dawson City, Yukon visit.

Life has been wonderful, full, perfect and best of all…boring.  But unfortunately our household dances to a different beat. Boring isn’t in our cards.  Perfect is for wimps and full and wonderful?? Overrated.

On October 9^th, 2014 Renee (I/me for the remainder of this post) after a long day on my feel laid down with Payton to put her to sleep.  Feeling restless, both Payton and I turned.  Perhaps she had an intuition?  Perhaps she just got used to late nights given how busy I’ve been with long days.

Regardless, we bed hopped, me trying to find her a place she would settle, her fighting sleep with all her being. In between all that I continued to feel restless.  Unable to lie in one spot for long, and if I laid on my back, every once in a while I would gasp for breath.  Also, I was cold.  Cold to my core.  So up I got, had a hot shower and then crawled between the sheets where Dwayne wrapped himself around me to keep me warm.  I finally slept.

For the next few hours I would wake momentarily grasping for breath.  Once I got up to get some water…unsure why I felt so restless.  Warm finally I was able to get back to sleep again.  Around 2 I woke up gasping again.  Sitting up in bed I debated going to the hospital. I felt wired. I felt jittery.  I checked my heart beat…it seemed light and fast.  Huh.  I have Atrial Fibrillation just like my father.   What did Dad say about it again?  Oh yeah, his doctor said 1/3 of people live with it…not immediately dangerous.  Go back to bed, I have a conference to attend to in the morning.  Wait, I’m only 40.  That can’t be good.  And plus, if it’s still going on in the morning I’ll likely have to go then and I’ll likely be late for the conference. Better to go now and be tired, then go in the morning and be late.

Attending the ER in Squamish the nurse met me with a slightly annoyed look.  I mentioned atrial fibrillation, the look turned just a tad more annoyed (or so I thought given it was 2:30 in the morning and quite frankly no one wanted to be up at that time). After some questions, my temperature and my blood pressure, the nurse took my pulse…185.  Impressive but for all the wrong reasons.

The night spiralled down from there.  A hook up to an IV, a quick ECG and positioning the de-fib paddles “just in case” the doctor proposed a game plan.  We’ll use medication to slow the heart…if it doesn’t work we’ll have to shock you.

I’m a bit light on details here but in a nut shell I remember the drugs NOT working, I remember dry heaving, I remember feeling woozy and I think I recall the mention of blood pressure dropping 60’ish /40’ish.  I heard them say they couldn’t wait for the anesthesiologist.   I thought “damn, this is going to hurt”.  Fortunately for me the anesthesiologist arrived like a white night, coming through the doing saying “I’m here!”.

When I woke my first thought was “well, I survived”.  The fun was short lived.  Next step was not a simple “you’re going home and call your doctor on Monday”.  Instead it was a trip to Vancouver via Ambulance and the statement from the medical team in Vancouver “you’re here for at least a few days”.