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...