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The truth about Isaiah

It has been three years since Isaiah first had Kawasaki disease and I have told his story more times than I can remember.  His Kawasaki disease story has been told to friends, to family, to acquaintances and to people I have just met and it has been told in various forms: detailed, long version, short, clinical version and many variations in between.  As hard as I try to make the details clear, I think many people still do not fully understand Isaiah's condition.  In an effort to clear up any misconceptions, I have put together this list of FAQs to reveal the truth about Isaiah.

Does Isaiah still have Kawasaki disease?
No.  Kawasaki disease is a self-limited form of vasculitis.  According to Dr. Jane Burns, a KD specialist (as posted by the Kawasaki Disease Foundation): "The inflammation and host immune response is intense but short-lived. Recovery from the acute illness is complete and symptoms and signs resolve completely."  Isaiah had Kawasaki disease twice, but both times he recovered from it and it is not an ongoing illness that he is living with.

If he no longer has Kawasaki disease, why does he still have issues with his heart?
Isaiah's condition is referred to as acquired heart disease. While Kawasaki disease and its symptoms may be temporary, it can result in lifelong damage.  Kawasaki disease causes inflammation of the blood vessels throughout the body, including the coronary arteries, which supply blood to the muscles of the heart. Due to this  temporary inflammation, Isaiah's coronary arteries developed permanent aneurysms, which are areas where the artery wall balloons or bulges out.  This ballooning of the artery causes the blood to swirl in those areas and increases the risk of formation of blood clots.  If a blood clot develops it can result in blockage of the artery and a heart attack.  Isaiah takes multiple blood thinning medications to reduce his risk of developing a blood clot. Even with these medications, one of Isaiah's arteries still developed a clot and is no longer delivering blood to his heart.  Fortunately, some arteries referred to as collateral arteries, have developed to compensate for the blockage.  Past tests also indicate that some of Isaiah's heart muscle cells have died due to the lack of blood caused by the clot, which has resulted in reduced heart function.

[Here is the link to a video the Kawasaki Disease Foundation created that clearly explains the effects of KD on the heart: http://youtu.be/L9FmxwNC5S0.]

Is this something he will grow out of?
Unfortunately, this is not likely.  Some children have been known to "grow into" their aneurysms as they become older, but Isaiah's aneurysms are classified as "giant" and this is an unlikely possibility for him.  Scar tissue can develop which would fill in some the space of the aneurysm, but the blood vessel will never be completely normal.  However, in some cases scar tissue will continue to form and can result in a narrowing of the vessel, which poses a risk as it may also cause a blockage.  Isaiah's arteries have already developed this scarring, which resulted in a blockage of 90% in one artery and prompted his double bypass surgery last year.

Can Isaiah do the same physical activities as other kids his age?
Despite his multiple aneurysms, one completely clotted artery and narrowing in his other arteries, Isaiah continues to have fairly good heart function.  He is able to run, swim, dance, jump and do any other cardiovascular activity that may raise his heart rate.  Fortunately, his heart is able to handle the stress of these activities.  In fact, our cardiologist constantly encourages Isaiah to get lots of exercise and stay active in order to keep his heart healthy and encourage further growth of his collateral arteries.  The real issue lies not with his heart function, but with his anticoagulation (blood thinning) therapy.  As the name implies, blood thinning medications cause blood to be thinner and reduces the blood's ability to clot.  While this is important in preventing a clot from forming in Isaiah's coronary arteries, it can be dangerous in cases of accidental injury.  Any head or internal injury can be potentially fatal, as Isaiah would be at greater risk of bleeding in his brain and organs.  This means that Isaiah should not be playing any contact sports, such as hockey or football, or participating in activities with a high risk of head or internal injuries, such as downhill skiing.  So far, these restrictions have not been an issue and we try to let Isaiah just be a "regular kid" as much as possible and he has the bruises to prove it!

Since he had his double bypass, does that mean everything is fine now?
I would love to say that the answer to this is "yes," but sadly that would not be completely true.  Since his bypass in April 2013, Isaiah's health has been excellent.  His echocardiograms have shown good heart function and this recent cardiac catheterization and MRI showed no changes since last year.  All in all, this is fantastic news, but we have learned over the last three years that the heart is unpredictable.  Our hope is that Isaiah's heart function continues to be good and that no new issues arise for a long, long time.  However, we know that there is always the possibility of a clot developing, or narrowing to occur because of additional scar tissue or even the possibility of his bypass graft closing off.  We do not know what the future holds for Isaiah's health or if he will require additional surgical intervention one day.  What we do know, is that right now he is a happy child who wants to experience all that life has to offer and approaches each day with enthusiasm.  So perhaps the true answer is that right now everything is fine after all.

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