Team Barnes

Team Barnes
"My mom becoming a travel nurse isn't what changed our lives. God allowing my Daddy to get heart disease changed it. And we're loving every minute of it!" -Zachary, age 9
Wednesday, May 7, 2014

Cardiac Amloyidosis, What?


Dear Friends and Family,

As most of you are aware, Nathan has been undergoing a lot of tests and procedures recently due to his seizure a couple of weeks ago. The latest of these tests was on Wednesday when he underwent an angiogram which revealed that there were not any blockages in his heart. (Praise God).

After a few hours in recovery, Nathan's cardiologist came back to the bedside and stated
 that he needed to talk with us. With every test that Nathan has undergone, there hasn't been one "sure-fire" or "big" thing that is wrong. Instead, we have come across multiple red flags in his cardiac workup that have led us to continue testing. While when looking at one of these red flags might not be alarming, the complete view of what he has going on is...think of it as the "perfect storm."

The cardiologist wanted us to prepare ourselves for the fact that Nathan might have a disease called "Primary/AL Cardiac Amyloidosis." This is a rare disease, also known as "Stiffening Heart Syndrome" in which an abnormal protein is created by the liver and can build up in various organs, including the heart. As of this point, through everything, it has been discovered that Nathan has the following:

  • Consistently high Troponin levels (indicating continuous cardiac damage)
  • Inverted T Wave on EKG (indicating cardiac damage)
  • 2 Heart Murmurs: VSD and PFO
  • Multiple infiltrates in his cardiac muscle -- of what we still aren't' sure.
  • Left Ventricular Hypertrophy -- "Thickened Wall" d/t the infiltrates in his heart causing his heart to overwork.
  • Light-Chain proteins found in his cardiac muscle -- indicative of AL Cardiac Amyloid.

His diagnosis up to this point are:
  • Restrictive Cardiomyopathy with Left Ventricular Hypertrophy
  • Cardiac Infiltrative Disease

So, what does all this mean? The answer to this is simple -- Nathan's heart is sick. And all of these issues named above go along with the suspected diagnosis. We are scheduled to have a cardiac MRI performed on October 1st in order to confirm this disease. Unfortunately, this is a very severe disease. It is not a cancer, though it is treated as such. The only forms of treatment up to this point include steroids, chemo, possible stem-cell transplant and most of these patients end up needing a heart transplant as well. The other unfortunate thing about this disease is that it carries a rapid progression and the end result is most often fatal. Most of these patients end up dying in a very short period of time after diagnosis due to congestive heart failure or sudden cardiac death. Of what we have researched, it seems as though the length of survival time while depending on the severity of each case, is said to be less than six months from the time of diagnosis. This time frame can be shortened by three different situations which include: Tropnin levels high at the time of diagnosis, ventricular hypertrophy and/or one syncopal episode (passing out). Unfortunately, Nathan has experienced all three of these already.

We are aware at this point that we still don't know for a fact that this is what is wrong with Nathan, but the doctor's have made it pretty clear that this is what they believe to be the case. So we are asking desperately for your prayers. We want to pray away the official diagnosis before they even get the chance to say it. We believe that God is the ultimate healer and that miracles still do happen. We believe that God still moves rocks even when we can't get them to budge. We believe that if the faith of a mustard seed can move a mountain, then the power of numerous people praying can remove these ailments from Nathan's body. We beg of each of you to take a moment and send a prayer up on behalf of Nathan, our three beautiful boys and our families.

I will update the results of this test as soon as I get them. And if this is a trial we must go through, we know we can do it and we will not be alone through it. I thank you all from the bottom of my heart.

~ LindseyB

Find rest, O my soul, in God alone; my hope comes from Him.



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