Tuesday, March 9, 2010

A post from Greg - 1 Thessalonians 4:13-15a

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 Gartner (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 its not good people who go to heaven, but rather, forgivenpeople. 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 – its 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 alter 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 is Gethsemene 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 dieing. 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 its 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 – its 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 starting 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 that 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 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 dieing 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 dieing 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.



  1. Greg and Elise,
    Thanks so much for once again letting us into your life in a raw and honest way, and all the while pointing us to Jesus in the midst of unthinkable trial and fear. We love you so much and are praying hard and specifically for you. And if you need anything, even just an hour to cry or pray or laugh, we can be there. Your lives are influencing so many other lives in deep, significant ways. Even people you don't know. We admire you.
    Brianna and Jeremiah

  2. I'm sorry for your awful day Greg. I'm still praying for you both. I'm grateful for every post and scrap of information I can read about you and Elise. I really do want to be praying well. You two are amazing. I wish this could all go away. It's so hard to keep pressing on... but you're doing it-- and Jesus shows in you.


  3. I can't even imagine what you are going through but it is encouraging to see you process through this with God's will in mind. I have tons of respect for you Greg for being as strong as you are in this situation. Praying for you and your family.

    ~ Brad

  4. I wish I had words that could express how much we all love you and wish that you didn't have to be going through this. I don't, but may James 1:2-4, 12 provide you with some sort of comfort. I look forward to the day when we're all mature and complete and receive the crown of life we've been promised. Till then you're in my prayers and please don't hesitate to ask for anything.


  5. Greg and Elise,

    We can't pretend to understand or wrap our minds around what is going on day to day. As we have been in our moving process, I have on my playlist "Come to Jesus". I believe you sang it at Tyler and Jess' wedding. It makes me think of your life and makes me pray hard for you both. Sometimes God gives clear direction on how to pray and sometimes not. Your lives are such a blessing and you have impacted so many for Christ. It isnt over yet! If I have ever known a fighter its you. God will take care of you both.

    Life isnt fair, and it crushes my heart to even think about what you are going through. We love you and pray for you. God always comes through and he will do the same in this situation.

    Casey and Joe

  6. Greg,
    I don't know you but I and my smallgroup are praying for you. Craig emailed the group and I am checking out your blog. I work at a Cardiologist practice in Alexandria called Mount Vernon Cardiology. I am the pacemaker device specialist here so I know what you are talking about. A few years ago, a very close friend of mine, Cory who was 21 at the time, needed a transplant. He was very fortunate and got his transplant within a month of looking. He had been having serious heart problems for a couple years before that (at least). He is now 28 and doing very well. I know that it must be very difficult living with an ICD at your age and having these troubles. I would be happy to talk with you or have my friend talk to you since you both have a similar history. I will be keeping you in my prayers.
    God Bless,

  7. Jay Abernathy (jm_abernathy@yahoo.com)March 16, 2010 at 7:39 AM

    I am a transplant recepient. I received a heart-lung transplant on Dec 28, 2008 at Johns Hopkins. I'm a year out and have recently celebrated my first birthday, although I am really 38. I've been saved once by God's blood, been born once through God's gift to my parents, and been brought back to physical life again by God's wonderful and miraculous love. Each day is another day I get to worship him. The truth is God knows our days, and further, our days are to know Him.

    I can relate to the pre-tranplant life and the post transplant life. In 2000, my pediatric cardiologist told me the only way I would live is with a heart transplant. I was born with a congenital heart defect that essentially was wearing my heart out from the time I was born. Eight years later, lungs were added to the transplant list because of pulmonary hypertension. The morning I was told that a possible donor had been found, there was peace that passed all understanding that came over me. I knew I was going to be fine.

    Today, I know the stats too. I know that I may never live to walk my daughter down the aisle, but then I may. The transplant was my wake up call to stop being a "Sunday" Christian and live every day for God. In the hospital I met believers and non-believers. Every day in the hospital was hard but a time to live as Christ wants me to live.

    In the end, I can't relate exactly to your situation, but I can encourage you from a 1A listed tranplant case to a 1B transplant case, that in the end, it's all worth it just to live another day for God. Who knows what seeds you will plant. The harvest is plenty but the workers are few. Even transplant patients can be harvesters.

  8. I don't know you. My new friend Ross just shared your blog and story with me today. I'm weeping. i'm weeping because, you and Elise are so lucky. I know that sounds totally whack. I have never in my life been in love - the kind that is so selfless, so christlike, so real - the kind where a man would actually say, "i'd rather burn than her". ugh, that makes tears rush to my eyes. you are so lucky greg. i'm sorry but you are. even if your life is cut short by human stds, you have found on this earth, felt and experienced, what it is like to share and reciprocate god's true love, with a woman. And Elise too. i dont know what is worse - dying young when you have felt that - or living a long long life, when you havent. i just broke off an engagement 9 months ago and the pain of having thought i found that, when really i didnt, is still difficult sometimes. i hunger to know jesus first. after that, i really hope someday my heart is expanded by the feeling you have, and described, for one another. it is the most beautiful thing i have ever read. some people never find what you have. they never feel it. never know it. i'm so grateful to ross for fwding me your blog link. i will be praying for you two...for god's perfect will in your life and your strength, and his mercy, as he reveals it. (and thanks for saying the stuff about how you struggle with despair and darkness sometimes. i'm a newer christian, and i have so many doubts and lukewarm moments where i know i believe intellectually but in my heart, i feel there is a lacking or a blockage. your words have comforted me.)