Cardiology Appointment

Today we received some not so great news.  Hudson had a scheduled cardiology follow up this morning.  He got an EKG and echocardiogram done as usual.  As I was looking at the echo being done, I just knew, and the dr. confirmed my suspicions.  When Hudson had his heart surgery done last August, the surgeon repaired his atrial septal defect and also his mitral valve prolapse, which had been causing mitral valve regurgitation.  At the time of his surgery Hudson's mv regurgitation was classified as moderate, he was taking a beta-blocker, and yet was still very symptomatic.  After his surgery the regurgitation was almost gone, it was classified as trivial, which is almost nothing.  This finding has been consistent up until January, which is when Hudson's last echo was at Stanford.

Today the echo showed the regurgitation has increased to be classified as the upper level of mild.  In a completely healthy person this honestly wouldn't be a big deal.  For Hudson, it's different, for one because it means that he is experiencing progression, and two, because it confirms to us that mito does indeed affect his heart.  Before his surgery Hudson progressed from mild regurgitation to moderate in just a couple of months, and we are terrified this could happen again, and ultimately progress to a more severe situation.  This time, there's no surgery to fix it.  His doctor today seemed discouraged, she reiterated that the surgery was done in the hope that the defects in his heart were "only" structural and would be fixed for good, and in the hope that they were not a product of mito, but that there were no guarantees mito wouldn't cause further progression.  I think today we realized that his heart is probably most definitely affected by defective cells because of mitochondrial disease, and the extent of what we'll be able to do to slow down progression will be uncertain.  For now we were instructed to keep a close eye on his energy level and overall behavior, last time when his mv regurgitation worsened he had minimal energy and his oxygen saturations were often bad.  Overall, a disheartening appointment, but I'll keep the faith that things won't get worse.