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.