There's A Healer In The House!!!

Words cannot express the emotions that I was experiencing tonight when I answered the call from our cardiologist.  I could hear the tears in his voice as he started the conversation, but it only took me moments to figure out that they were tears of joy!  Nathan’s MRI confirmed that he DOES NOT have the dreaded diagnosis of Cardiac Amyloidosis.  I cannot express the feeling of joy, relief and overwhelming peace that came with that statement.

While we are still flying high after receiving this information, we do realize that there are things still to come in our future.  Nathan has been officially diagnosed with Hypertrophic Obstructive Cardiomyopathy.  Here is a quick rundown:

Hypertrophic cardiomyopathy (HCM) is a complex but relatively common form of genetic heart muscle disease that occurs in 1 out of 500 people, but often goes undiagnosed in the community.  HCM is the most common cause of heart-related sudden death in people under 30 years of age.  Although HCM is a chronic disease without a known cure, a number of treatments are now available to alter its course.

This is still a very serious condition.  It is the condition where you hear of athletes “dropping dead” during a game for an unknown cardiac cause.  The thinking now is that Nathan went into an abnormal rhythm at work that day (namely Ventricular Tachycardia, VTACH) which caused his syncopal episode and seizure.  The most important thing right now is to make sure that he doesn’t go into that rhythm again before the treatment takes effect.  The “infiltrates” found in his heart were not proteins, but rather abnormal muscles that are causing his heart to pump in an improper way.  Now the damage that has occurred to his heart (heart wall thickening, infiltrates, scar tissues) are irreversible, but are said not to get any worse because his heart is no longer growing.

So what does this mean for us next?

·         Nathan starts medicinal treatment tomorrow to control abnormal rhythms.  Pray that his blood pressure tolerates the meds as they tend to decrease your BP and his is already low anyway.  And also pray that he does not have any abnormal rhythms until the treatment is effective.

·         We will continue to do the epilepsy monitoring at Vanderbilt this week.  Pray that these four days go smoothly and cause the least amount of stress for him as possible.

·         We will meet with his cardiologist after we get out of Vanderbilt to talk about implanting a defibrillator in his heart to reduce the risk of an abnormal rhythm again and prevent any sudden cardiac event that could lead to death.

·         Since this is mostly a genetic disease, our three boys will need to be tested soon, along with Nathan’s twin brother and sister.

Now I know that this still sounds bad – but I am so thankful for these results!!  And I know that this whole day is because of the Lord and because of all of the prayers that have gone up on his behalf.  He was the one who got Nathan’s MRI date moved to today.  And He is the one who intervened in a way that only He could.  Our cardiologist said it perfectly when he told me, “Mrs. Barnes, I think that we have all witnessed a true miracle here.”  Praise Him!

I am so thankful for all of you and your comforting words during this time.  While we couldn’t respond to every post, text, message, etc – Nathan and I read every single one of them and found comfort in them.  We don’t know why it seems that healing is provided to certain people and not for others, but we are so thankful that He did this for us. 

I’ll end this post with the words to a song that Nathan and I have listened to over and over this week and have found much comfort in the words. 

“We pray for blessings.  We pray for peace.  Comfort for family, protection while we sleep.
We pray for healing, for prosperity.  We pray for Your mighty hand to ease our suffering.
And all the while, You hear each spoken need, Yet love is way too much to give us lesser things.

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise?

We pray for wisdom; Your voice to hear.  We cry in anger when we cannot feel You near.
We doubt your goodness, we doubt Your love.  As if every promise from Your Word is not enough.
And all the while, You hear each desperate plea, And long that we'd have faith to believe.

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise?

When friends betray us.  When darkness seems to win we know, that pain reminds this heart
That this is not, this is not our home.

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise?

What if my greatest disappointments, Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy?
What if trials of this life, The rain, the storms, the hardest nights,
Are your mercies in disguise?”

It Still Seems Unreal To Post This...

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.

Vacation: Fun In The Sun

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Vacation: 2012

Yes, I am well aware of the fact that I take a lot of pictures!!!  But hey, I make no apologies.  I love my family and want to savor every moment that we get to spend together – life is too short to even forget the small stuff.  So, with that said, this year I made a slide show/video of our vacation since there were so many pictures.  But it turns out that the video was too large!!  Haha…  Oh well, we will just break these up into sections again.  So here we go…

We had a great trip – and we were determined to after our Virginia Beach fiasco!!  It started off a little rough though…and as Nate says, you can’t make this stuff up!!!

When we started to leave TN, Nathan got stung by a wasp which detoured u,/s to our doctor’s office for a shot (he is crazy allergic) and this delayed our trip by about five hours.  Apparently, they couldn’t decide if this was a wasp sting or a brown recluse spider bite….long story.  Well, it turned out to be a wasp sting!  When we finally left, it was after 5pm TN time and we had to get to Fort Wayne, Indiana because our hotel reservations were there.  And, they couldn’t change hotels for us because we had already missed the deadline.  Anyway, we got to the hotel at around 2am and slept for about five hours.  Then, when it was time to leave for the second leg of the trip up, I got a stomach virus and ended up throwing up five times before we even got on the interstate!  It was hilarious and awful at the same time.  I decided to drug up on Dramamine, slept for four hours straight and felt tons better.  Finally!!  After this we decided that everyone was allowed ONE crisis on this trip, and we headed north.

We made it to Mackinaw later that day and decided on pizza before going to get groceries.  Well, Tyler decided to push the Emergency Call button on the elevator at the restaurant and after laughing so hard we were crying, I took the three boys off the elevator and left Nathan to deal with the 911 dispatcher on the other end of the line.

The week picked up from there – we only had one other mishap where Tyler decided to bust his head open on the bed frame which ended with five hours in the local ER to get his head stitched up.  Hey, what can you do except laugh, right??

With all of that, this did end up being one of the best trips that we have had up there.  We didn’t get to go with my immediate family since everyone’s schedules were different this year, but we were super excited to hang out with my extended family while we were there.  My cousins loved the boys and my boys couldn’t get enough of them…or their popcorn!!  We had such a good trip that we even decided at the very last minute (literally) that we were going to stay another night!  Which was a blessing too because we got to have dinner with my parents and grandparents and then got to have another camp fire with the rest of the family.  This particular night, we were around about 25 of my family members – way cool.

Everyone has joked lately about the “black cloud” around the Barnes crew due to all of our bad luck lately.  But I’ll tell you, black cloud or not, I wouldn’t trade this week with my family for anything!  We wanted a week of fun, laughter and family time – and that is exactly what the Lord blessed us with!