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.
Sunday, November 23, 2014
Friday, November 21, 2014
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...
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. ;)
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. ;)
Wednesday, November 19, 2014
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.
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.
Subscribe to:
Posts (Atom)