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March 9, 2010 - ARVD Diagnosis & 1 Thessalonians 4:13-15

We live across from an elementary school and the playground is on the far side. The kids look tiny from this distance, but I just realized that I've been watching them play at recess for the last ten minutes. They’ve got a ball they keep kicking high in the air, and they run everywhere. Running, running, running. I doubt they have a care in the world right now – the air is warm, the sun is out, and spring is on the way. Life’s a funny, painful thing.

Yesterday was an awful day for two reasons. First off, my maternal grandfather, Joe G. (I’ve always called him “Pap”), died. I love him, and I miss him. My heart breaks for my mother, and I can’t even begin to imagine what Grandma is going through. Pappy was a good man, and more importantly, he knew Jesus Christ as his Lord and Savior. He knew that it's not good people who go to heaven, but rather, forgiven people. And because of that, I don’t “mourn like those who have no hope”. I’ll see him again. There’s nothing permanent about his death.

Two hours after I found out about Pap I had my weekly visit at the heart transplant clinic. I found out that this past week Dr. Desai (the director of the entire transplant clinic) had been talking to his colleagues all over the country about me. Turns out that after four years we finally have a diagnosis.

I have a really rare disease called arrhythmogenic right ventricular dysplasia (ARVD). The way it works is that there’s a program embedded in my genetics with a start button; I hit a certain age, the start button is activated, and my heart’s right ventricle begins genetically mutating into fat. Like, not that I get a fatty heart, like when you don’t eat healthily and need a bypass. My heart muscle literally turns into a lobe of fat – you let the disease run its course, and I eventually won’t have a right ventricle – just a heart shaped/sized ball of fat. And fat doesn’t conduct nerve electricity. And fat doesn’t pump blood.

Because ARVD screws up nerve conduction, it causes cardiac arrests. You let it go on long enough, and it causes electrical storms. An electrical storm is a random, unstoppable sequence of cardiac arrests, just like what happened to me in October 2006, and last January. Internal defibrillator implants like the one I have can’t always save you from an electrical storm – it's kind of a miracle that I’ve survived two already. All that to say, while ARVD will kill your heart from a pump standpoint in a really weird, almost science-fiction kind of way, the electrical problems will get you first – long before the conversion process is complete.

Because of all of that, the strategy for keeping me alive has changed. Usually, if someone has a year to live, you wait until one day short of a year and give them a transplant. That way, you’ve added a year to their life on the backend – if they were gonna live 13 years with a new heart, you just made it 14. The reason that strategy is possible is because heart failure is a gradual, predictable process – so you play the game of maximizing their pre-transplant days to lengthen their total lifespan.

In cases like mine, though, the risk with ARVD is too high. You play with all the chips in, everyday. So let’s say you decide to wait a year; you continue to get healthier and healthier on the outside, and then at ten months you have an electrical storm and die. You just added ten months, and lost 13 years. It’s not worth it.

So the strategy for me has changed; I’m being upgraded to a status 1B on the heart transplant waiting list, and I'm going to start getting offered hearts. Since my pharmacological regimen has me feeling a little better each day, Dr. Desai can pass on all the hearts that aren’t an exact match for me. Then, when the right one comes along, we pull the trigger before it’s too late. For those of you tracking with us and praying for us, this would count as a resounding “no” to our request that I stay a “2” for ten to fifteen years.

C. S. Lewis wrote about praying once, thinking about why some prayers are answered and others aren’t, wondering if our praying really does altar the plan God has laid out for us, observing that some people seem to have their prayers answered all the time while others seem to get only dramatic refusals. Here’s what he wrote:

“It would be worse to think of those who get what they pray for as some sort of “court favorites”, people who have influence with the throne. The refused prayer of Christ in Gethsemane is answer enough to that. And I dare not leave out the hard saying which I once heard from an experienced Christian: “I have seen many striking answers to prayer, and more than one that I thought miraculous. But they usually come at the beginning – before conversion, or soon after it. As the Christian life proceeds, they tend to be rarer. The refusals, too, are not only more frequent – they become more unmistakable, more emphatic.”

Does God then forsake just those who serve him best? Well, He who served him best of all, near the end of His tortured death, said “Why hast thou forsaken me?” When God becomes man, that Man, of all others, is least comforted by God, at His greatest need. There is a mystery here which, even if I had the power, I might not have the courage to explore. Meanwhile, little people like you and me, if our prayers are sometimes granted beyond all hope and probability had better not draw hasty conclusions to our own advantage. If we were stronger, we might be less tenderly treated. If we were braver, we might be sent, with far less help, to defend far more desperate posts in the great battle.”

So instead of trying to milk 10 years of pre-op life out of being a “2”, I’m looking at getting a transplant as soon as the right heart comes along. All the risks still apply - 10% die during the operation, another 10% in the first year. Then 50% get diabetes, kidney disease, and cancer. None of that’s changed.

I can’t feel anything right now. I can’t wrap it up and put a bow on it, no matter which way I try. I’ve got nothing – I’m coming up empty on life at the moment.

Unrelated thought, but important: in my last blog post, I told you that Elise and I are praying that god takes her before he takes me, so that she wouldn’t have to live without me. You have no idea of the panic and fear in her voice and eyes when we talk about her living without me – you really just don’t know. Fear becomes a compelling emotion for both of us when we talk about me dying. It’s not like when the first of an elderly couple passes away – that couple got to have their 50 years of marriage. They got to have their kids. People grow old, and then they die – that’s how life unfolds.

I have no idea how awful, how absolutely horrible it is to lose a spouse in old age. But likewise, unless someone’s 24 and wakes up every single day staring death in the face and dealing with the potentiality of becoming a widow or widower, they have no idea what we’re going through - the situations are not analogous. We’re 24. We’re 24. I’m not saying it's worse, and I assure you it’s not easier. It’s different.

All that to say that in my last post, I told you that Elise and I are praying that God takes her before he takes me – it's something we both desire, and we pray everyday that He brings it to pass in such a way. But what I didn’t take the time to explain in my last post is that it’s a sinful prayer to pray. Do you know why? Because it exhibits a lack of trust and a lack of faith in God, His plan, and the fact that He loves us more than we love each other and wants what’s best for us. Elise and I praying for her death to proceed mine is sinful, because in doing so we’re not placing our faith fully in God and the path He’s authored for our lives.

We knew that when we started praying that way, and I knew it when I asked you to pray that way for me. And that’s where I screwed up. Jesus said that it would be better for someone to tie a millstone around their neck and drown themselves than to lead one of his children astray, which is exactly what I’m doing when I ask you to pray with a lack of faith in God’s character. So I want to ask you to stop. Know that God has a plan, and that his way is best, and that whatever he has in store for Elise and I, it’s the right and best thing.

All that being said, Elise and I have asked God to change our hearts regarding that prayer, to make us more holy, give us more faith, and help us to stop praying it. But until He changes our hearts, we’re going to continue to pray it. My wife is married to a dying 24-year-old, and we’re both human. Which is to say that we’re both sinners - people who lack faith and trust, who place our hope and faith in things other than Jesus. Which is why we need a savior. And the beauty of the Gospel is that there is one.

When I look at my prayer life, I pray all the time that God would make me more holy. Sometimes I want to be holier because I love Jesus and want to honor and enjoy him. But there are other times when the only reason I want to be holier is so that I can do my job better, or feel less ashamed of my life. I pray for the right things with the wrong motivations.

And then there’s my prayer that I outlive Elise. I pray that because of my tremendous love for her, because it will be hell on earth for the one left behind, and I truly would rather be the one that burns instead of her. I pray with the right motivations, but for the wrong things.

I pray for the right things with the wrong motivations, and I pray for the wrong things with the right motivations. How about that. Has anyone ever been more screwed up, or needed Jesus, more than me? And I have him – I’ve placed my faith in him, I’ve stepped down a rung on the ladder and let him be first in my life, and because of that all of my sins are covered in his mercy. I’ll be with him, and Pappy, in heaven, forever.

I don’t have any insight to share this time, and I don’t have any peace. I’m 24 and, playing the numbers, I’m a handful of years closer to dying than I was a week ago. I have to go to a genetic research center at Johns Hopkins in Baltimore soon to get some tests run and talk to a genetic counselor. And I can’t go to Pap’s funeral because I can’t leave the 3-hour radius.

There’s one thing to cling to: When people place their faith in Jesus, they get grafted into His righteousness. Which means that God sees them as sinless, which means that they are fit for heaven, which means they endure forever with Christ and those they love who’ve also placed their faith in Christ. Because of that, I will see Pappy again – and soon. Whether it’s a week or fifty years, it’s soon – fifty years is such a short time. Such a short, short time – 18,250 days. They’ll tick away like seconds on a clock, and then this life ends and eternal life begins. There’s nothing permanent about my being separated from Pap. And when I die, you need to remember that there’s nothing permanent about you being separated from me. They’re just years – they’ll fly by, and we’ll be together again. Not even the main blessing and miracle of the Gospel, but a sweet one. A very sweet, very precious one.

Elise and I love you all, and we want to be with you a thousand years from now. Please talk to somebody about what it means to know and follow Jesus. And pray for my mom – that she would have peace. Grandma too. And pray for Elise and me – that we would shed our distrust and fear, and walk in deeper faith, and know Jesus more fully.

I may not even know you, but I love you with all my heart. You’ve gotta believe that. And of infinitely more importance, Jesus loves you more than I do.


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