Appointment at Johns Hopkins

Hello everyone!

We wanted to update you on Greg's condition and tell you about the appointment that Greg had at Johns Hopkins.  Sometimes its difficult to communicate the changes in Greg's condition or the steps that the doctors are taking because, just like with most other diseases, the transplant "world" seems to have its own language and way of doing things.  Therefore, this post is going to be our best attempt at catching you up on Greg's health!

Yesterday we went to Johns Hopkins Hospital in Baltimore, MD for an appointment with Dr. Russell who is in charge of the transplant program.  The main purpose of this appointment was to get a second opinion and to have Dr. Russell help Greg's doctors decide on the next steps to take while awaiting the transplant.  This was our second time traveling to Johns Hopkins- we first went there in April to meet with Dr. Calkins who is the doctor who is in charge of the Arrhythmogenic Right Ventricular Dysplasia (ARVD) program.  As we mentioned in an earlier post, Greg's doctors at the INOVA hospital (our home hospital) had come to the conclusion that ARVD was the most likely cause for Greg's heart issues.  During our first appointment at Hopkins, we met with a genetic counselor and they took a sample of Greg's blood so they could perform genetic testing.

We've been anxiously awaiting the test results for the past few months and finally got them yesterday.  Greg's blood came back negative for ARVD.  However, this doesn't mean that Greg does not have ARVD.  Currently, geneticists have only isolated 5 genes that are linked to ARVD.  While Greg does not have a mutation of any of these 5 genes, there could be other genes with mutations that code for ARVD that have not been discovered yet.  In fact, the doctors have found that 50% of the patients who test negative for ARVD actually do have ARVD.  At the same time, everyone who tests positive for ARVD does in fact have the disease.  Getting a negative on the test doesn't give the doctors any new information to work with but getting a positive would.  If Greg had tested positive, his immediate family would also undergo genetic testing to determine if they had the same genetic mutations as Greg- but because he tested negative they will not be tested.  Greg will be giving a blood sample that will be used in research for the purpose of discovering more genes that are associated with ARVD. 

While the genetic counselor was not able to give us helpful information, Dr. Russell certainly was.  He is an expert at heart transplants and works closely with Dr. Calkins.  Johns Hopkins is world-renowned for their clinical and educational excellence, and the transplant program is no exception.  Because of the caliber of Johns Hopkins and Dr. Russell, we were extremely interested to hear his opinion on Greg's heart.   After examining Greg and going through the details of Greg's medical history, Dr. Russell confirmed that every decision the doctors at INOVA have made thus far regarding Greg's heart have been correct.  According to Dr. Russell, Greg's has all the symptoms that are typical of a patient with severe heart failure and Dr. Russell affirmed the excellence of the doctors at INOVA, the transplant program, the post-transplant care that INOVA provides.  We felt tremendously relieved after meeting with Dr. Russell.  Knowing that he, an expert in the transplant field, is in agreement with Greg's doctors and hearing him recommend that Greg continue to be treated at INOVA instead of switching to Hopkins was very comforting.  We are very grateful that we were able to meet with him!!

Moving forward, Dr. Russell suggested that Greg's doctors adjust his "dry weight" so that Greg is more comfortable.  This would require them to increase his diuretics.  They would continue to increase the diuretics until Greg's kidneys show signs of distress (one of the biggest risks of treating transplant patients is their other organs failing while waiting for the transplant).  If this doesn't cause drastic drops in Greg's blood pressure or damage to Greg's kidneys, they may be able to keep Greg more comfortable while waiting for his heart.  The doctors have been keeping some extra water on Greg to protect his kidneys and help his heart pump more effectively- but the trade off is that Greg's symptoms (abdominal pain and swelling, fatigue, decreased exercise tolerance, and increased shortness of breath) have increased.  At the same time, we know that Greg is fortunate to be doing as well as he is.  So many people are confined to the hospital while they await transplant and we have been so blessed that Greg has been stable enough to be home and return to work during this time. 

While at Hopkins a specialized echocardiogram was done on Greg's right ventricle.  This is part of the ARVD diagnosis process and will help the doctors determine if Greg's heart function is decreasing at an accelerating pace.  If so, it will put more emphasis on getting a heart quickly instead of waiting for the perfect heart.  We are hopeful that the input from Dr. Russell as well as the echocardiogram results will help Greg's doctors make the best decisions regarding his care, and we are so grateful for the chance to meet with Dr. Russell.  Not only was it obvious that he is an excellent physician, but he was extremely kind to and supportive of us.  What a blessing!

We both continue to meet with our counselors weekly and have really benefited from the chance to work through the issues that we are facing with someone who knows how to help people through traumatic situations.  While Greg and I are walking down the same road together, we carry different burdens and are facing different trials, and because of this we are very blessed to have individual counseling sessions.  Each day is still a struggle in many ways, but the Lord continues to be faithful and gives us enough grace to get us through each day (even when we think that we won't!).

Thank you for your continued prayers and support along this journey.  We love you and are incredibly grateful for your presence in our lives!

Love,
Elise

Fundraiser Thank you!

Hello!

We've been meaning to sit down and thank each of you who took part in the fundraiser for everything you did and are doing to help us- but we never seem to find the right words.  And how could we?  What you've done for us is beyond anything that we can even comprehend, and there are no words to adequately express our gratitude.  We were shocked, humbled, overjoyed, and brought to tears when we heard how much you had raised for us - currently the total is at an unbelievable $31,400!!  We never imagined that we would be the recipients of so much generosity- it is truly mind boggling.

So many of you spent hours making baskets, putting together auction items, cooking and serving food, counting money, making sure that the technology was working, etc., and we are so thankful for the sacrifices you made to help the fundraiser be a success.  Through you, we have seen Jesus at work - you have literally been his hands and feet.  Through you we have experienced God's love.  And because of you we have a fresh and expanded understanding of God's grace - that he has and does give us more than we could ever deserve, that his love for us is unending, that he is with us every step of the way, and that his grace doesn't demand that we perform in order to receive blessing.

As you can see, the fundraiser was not just a monetary blessing for us (though it definitely was that!) but it was also a spiritual blessing for us.  You have encouraged us to press forward, to keep going in the midst of this trial, and to remember that God is for us, with us, and knows all of our needs.

Your generosity has lifted a tremendous burden from our shoulders.  It is such a relief to know that our needs are provided for ahead of time!

Below  is an article that was published on the Pittsburgh Christian Living Examiner by a woman who attended the fundraiser.  We are grateful for her support of us and this chance to publicly thank so many of you.  We are truly blessed.  These words feel so insufficient- but please know how much you mean to us.

Love,
Greg and Elise

Follow up report on the Greg Boros fundraiser sponsored by his brother Nathan Boros' senior project

April 16, 10:17 AMPittsburgh Christian Living ExaminerCarol Hamilton

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Nathan Boros by the display he made about his brother, Greg Boros

Photo by Tim Boros, Nate's twin brother

Nathan Boros is indeed his brother's keeper. For his Seneca Valley High School senior project, Nate chose to help his elder brother, Greg Boros. Greg, who turned twenty-five on April 12th, needs a heart transplant.

Nate organized a spaghetti dinner and silent auction on April 11, 2010 at the Harmony-Zelienople Methodist Church. Over 540 people attended the event. Nate is thrilled to report today that thirty thousand dollars have been raised so far.

Nate wrote, "The community support and love has been made so tangible in how they have given to me and my family. The emotional and spiritual boost that comes from an event like last Sunday may prove to be more valuable than the actual money itself. God has been so so good to my family and I and it has been through the people of this community that are being His hands and feet."

At the dinner, volunteers bustled, serving salad, home made bread and rolls, beverages, spaghetti with meatballs, and dessert to the guests. The church hall overflowed with people and a line stretched up the steps from 4:30 to well after seven as people waited to be seated.

Sadly, Greg and Elise couldn't be physically feel the hugs and love that flowed from the guests. Greg had to have a right heart catheterization on April 8th. The catheterization showed that there isn't excess fluid accumulation around Greg's heart and the function has not decreased since his last catheterization on March 4th. However, Greg's doctors insisted he stay in the Virginia area and not travel to Pennsylvania for the weekend.

He and Elise did join in the fun via web cam. A large screen at the front of the room allowed the guests to see and hear Greg as he shared some of the lessons he's learned along the way, especially by reading about the trials the apostle Paul faced in his ministry. Greg thanked the crowd of well-wishers, telling them they were his anchor.

At least he and Elise could get a glimpse of the people in the jam-packed room from a web cam that scanned the many faces. Hopefully the couple in Virginia could see the expressions of love and care as it generated to them.

The web cam crew also showed Greg and Elise the tables full of gift baskets and prizes for the silent auction and people got a chance to chat personally via computer.

If you would like to make a tax-deductible donation to help with Greg's medical bills, please send a check payable to "HZUMC MISSIONS" with Greg Boros in the memo line to: Harmony-Zelienople Methodist Church, 285 Evans Road, Zelienople, Pa 16063. The church will administrator these funds to Greg and Elise.

In closing, Nate writes, "If you have caught a glimpse of Greg and Elise's heart for sharing their faith please consider becoming a part of their ministry support team as they serve at George Mason University through Campus Crusade for Christ (CRU). I encourage you to research CRU and what it is that Greg and Elise do everyday in helping young people come to know Jesus. To become monthly supporters of Greg and Elise, please see their profile through CRU's website. You can learn more about the mission of CRU at www.ccri.org. Greg an be contacted directly with questions at greg.boros@uscm.org."

Greg's blog details his medical journey:
http://gregboros.blogspot.com

For information about the dinner and the silent auction:
http://gregborosbenefit.weebly.com

Home from the hospital!

Hello!

Thank you so much for keeping us in your prayers over the last few days!  The Lord really took care of us and we have good news, however it was a frustrating and drawn-out time for us.  We arrived at home around 3:30 this afternoon, exhausted and glad to be out of the hospital!

The doctors did decide to perform a right heart catheterization on Greg, which took place yesterday around 2pm (after a 3 hour wait in the prep area!).  The catheterization went well, and it showed that Greg's heart function has not decreased since his last catheterization on March 4th.  It also showed that there isn't excess fluid accumulation around the heart.  This was unexpected considering the 10lbs Greg had gained in 1 week.  Looking for fluid, the doctors decided to also perform an ultrasound of his abdomen (to look for fluid) and legs, to look for blood clots.  Both of the ultrasounds came back negative- which is wonderful, but perplexing.  The doctor's only explanation for why Greg would have gained the weight so quickly is that they had made him too dry with diuretics since coming home from the hospital, and for whatever reason, his body decided to retain more water to get back to a good balance over the last two weeks.  Since nothing has changed about Greg's diet or fluid-intake, this is strange- it can't possibly be fat tissue or lean muscle weight, but they can't find excess fluid on him (at least with the tests they performed yesterday).  It also doesn't explain the increase in his symptoms, but since the numbers they look for are OK the doctors aren't changing his treatment for now.  We are to call them first thing on Monday with his weight, and we'll be going in Wednesday for our usual clinic appointment, if they don't decide to see him beforehand.  Since Greg's condition hasn't deteriorated, he'll stay a 1B on the transplant list, which is a blessing because it gives them more time to wait for the "perfect" heart instead of rushing to get any heart that will match.

Overnight, Greg did have a long stretch of ventricular tachycardia (the dangerous rhythm of his ventricles that can cause cardiac arrests).  It didn't progress to him needing to be shocked by his ICD, but the doctors were concerned about it.  This morning they reprogrammed his device so that it will record more v-tach events than it has been (his ICD didn't record this one because his heart rate didn't get high enough, but the heart monitor he was wearing notified the nurses).  This will enable them to get a better sense of the amount of vtach Greg's having, and if its increasing the way that his atrial arrhythmias are increasing.

All in all, we feel relieved to know that Greg isn't in serious danger from the increased weight.  We are frustrated by the lack of information that was gained, but as they keep telling us, that's just a part of the transplant process.  Every patient is different, and Greg's right heart failure is rare and therefore much harder to anticipate, plan for, or treat.  The medical staff keeps reminding us that we can trust the doctors- and we do- but even more so we trust that these past few days were part of God's sovereign plan for getting Greg the perfect heart at the perfect time... or for whatever it is that the Lord has planned for us along this journey.  As excellent as our doctors are (truly, they are fantastic), its nice to know the God of the universe is the one who is ultimately in control and that He knows precisely what's going on with Greg's heart, because He planned it.

Please pray that we will continue to trust the Lord, that He would give us the grace we need to get through each day, and that He would guide the doctors every step along the way.  We are so grateful that you are with us in prayer.

Love,
Elise

In the hospital

Hello everyone,

Yesterday afternoon, Greg was admitted to the hospital by his heart-transplant doctors.  Over the past two weeks Greg had been gaining water-weight very quickly, despite his doctors doubling his doses of diuretics.  Along with the water-weight has come increased symptoms (fatigue, bloating, loss of appetite, soreness throughout his body, etc.) and he's felt worse and worse as the week has progressed.  We went to the heart transplant clinic for an "emergency appointment" on Monday, after he gained 3 lbs over Saturday night.  At that time, the doctors said they couldn't do anything yet and to wait and see if he continued to put on more water weight as the week progressed.  He did, and by yesterday morning they deemed it necessary for him to be admitted to the hospital. 

He was seen by Dr. Desai (the head of the transplant program) who decided to give him a dose of IV diuretics last night and one this morning to see if the stronger dose would help.  If by this morning Greg lost all the excess fluid and all his symptoms disappeared, it would be a sign that he wasn't responding to the diuretics at home and they would give him an additional "booster" drug to help keep the water off, and send him home.  If the IV diuretics didn't work- they would do another right heart catheterization today to see what's actually going on in his heart.

We haven't seen the doctors yet this morning, but so far Greg has gained another ounce of weight, instead of losing the amount necessary.  We're still waiting to see if the second IV diuretic has been effective, but it seems unlikely at this point.  Most likely, Greg will be getting a right heart catheterization and remaining in the hospital for another night as they try to determine what's causing the increased water-retention.

The doctors tell us that this is a normal part of waiting for a heart- any time there's a drastic change in how a patient is doing, they are admitted to the hospital so that the doctors can do everything possible to keep them as comfortable and strong as they can be while waiting for their new heart.  We'll probably be back here again many times before Greg receives his heart- and its a blessing that we live so close to the hospital!

While in some ways it feels like a relief for me to be here (it takes the pressure off of me trying to determine when to call the doctor, and watching him to make sure his symptoms aren't changing, etc.), Greg is very anxious to go home. 

Please pray for wisdom and insight for the doctors as they try to figure out what's happening in Greg's body, and for peace and patience for us as we "hit" this new bump in the road.  Our prayer is that Greg will just need a different medication and that his heart failure isn't getting worse.  Yet, we know that God is in control of every detail in Greg's body and in the process of waiting for and getting a heart, and that above all we need to pray for His will to be done (even when that's hard to do).

We'll keep you updated as we get more information.

Thank you for walking this road with us,
Elise

Post from Greg - Matthew 11:1-6

Each month Elise and I send a prayer letter/update to a special group of people who have partnered with us financially in the ministry here at Mason, in the effort of seeing the gospel spread to every GMU student. As I was writing this month's letter, I realized that there were portions of it that I really wanted to share here on the blog. Below are those portions - please know how much Elise and I love you and appreciate your tenderness, care, and prayers. There are many times we'd feel lost if it weren't for you and what God does through you...

...The first thing I wanted to share is that Elise and I are OK. I know that there have been some people who have been worried lately, especially by our blog posts. I want you to know that part of the plan for the blog is for us to be completely transparent with anyone who cares to read it – even in dark moments. This is really intentional on our part, because we want people to know that it's OK to be a Christian and for life to be awful – it's possible to lose all your faith in life while keeping all your faith in Jesus. Many of our days, thoughts, and emotions are dark, hopeless, and confusing (and as one person recently pointed out to me, Elise and I aren't suffering perfectly - no one ever has or will since Jesus). But what we want is for people to know that it is OK to not be OK - you can be a Christian and still be adrift in the darkness. It doesn't make you a bad Christian, doesn't mean God loves you any less, doesn't mean that you're a bad or weak person, or that you don't believe deeply enough, or that you need to have more faith. The truth of the matter is that some people are called to suffer in this life (which is one of the many dramatic lessons of Hebrews 11 - some people are called to glorify God with the life they live, while others are called to glorify Him with the death they die).

 

One of the simple truths of being a Christian is that God demands we be perfect, but He doesn't expect us to be perfect, because He knows we're not perfect, which is why He gave and gave up His perfect Son. The apostle Peter backslid into sin by capitulating to Jewish dietary law, and had to be called out on it in front of everyone by Paul (Galatians 2:11). John the Baptist, the greatest mere man to ever live (Jesus declared John "the greatest of those born of women"  in Matthew 11:11) – anyway, that John the Baptist spent his last days rotting in prison, and finally had his head cut off and served to a dancing girl on a silver platter. And before he met his end, he sent a messenger to Jesus, his cousin, whose coming he'd spent years proclaiming, asking "Are you the Messiah, or do we wait for another?"

 

Have you ever thought about the implications of John's question? The simple truth of it is that John's life had degenerated into a horrible mess, that mess didn't fit his picture of what life was supposed to look like, and in a weak moment he doubted the divinity and power of Christ. Because after all, if cousin Jesus is in fact the conquering, reclaiming messiah foretold by the entire Old Testament, then what the heck am I doing in a prison cell??

 

Now here's why I bring it up: Whatever measure Jesus was using for "greatness", he declared John the greatest of our species. And if the greatest mere man to ever live doubted Christ during a storm in life, and if God intentionally had that doubting recorded in His holy book, then I think its safe to say that there's a place in Jesus' kingdom for those who are adrift in darkness and can't find the way out. By the grace of God, neither Elise nor I have ever doubted Jesus for a second. But we have spent much time in the valley of despair – and that's OK. It's OK with God, and it needs to be OK with His children as well. Check out Psalm 23 – nowhere does it promise that God won't lead us into "the valley of the shadow of death" – it does, however, promise us that He will "be with us" in it. Elise and I want you to know He can and will use this season (or new reality) in our lives just like He did our old season when we were experiencing victory. I feel total freedom to share even our dark moments on the blog, simply because I feel totally free in the Gospel to be what I am. We're light-years from being perfect, we need God to be working on us constantly to make us holier and less sinful and more in love with Him – but it's OK to ask God to meet you where you're at. And in the meantime, He's using our defeat for His victory.

 

Here's an example of what I mean: One of the countless emails we've received in the wake of our blog posts was from a young woman in college who has suffered from clinical depression for years and has recently been thinking about killing herself. A friend referred her to one of the blog posts, and God used it to call her into an awareness of His love – she wrote us saying that what God said to her through that post has forever changed her life, she's no longer suicidal, and Christ is now her treasure. If that were the only good that came of the entirety of what God has planned for Elise and I to go through, we would do it in a heartbeat. It's an honor that Jesus would use our stupid little post in such a way, and it's an honor to be connected to that young woman's life...

 

... I'm running out of space to write, but I want to share one more story of victory that came about even in this season of defeat: The other day, Matt Bedker (one of my disciples) came to our apartment to visit. Matt is an original "Monday Thinger" - do you remember that? "The Monday Thing" was the group that Elise and I put together last year to explore matters of faith and spirituality with non-Christians. Anyway, last spring, The Monday Thing played a part in Matt coming to know Jesus, and on spring break last year he actually took the plunge and placed his faith in Christ. I love him so dearly, and it's been wonderful to watch his faith grow by leaps and bounds the past year. When he showed up here last week, he informed me that it was the one-year anniversary of his becoming a Christian.

 

In one year, Elise and I and you and all the rest of the team have gotten to watch Matt go from being in a very dark and very Christ-less place to being a man whose faith is incredibly deep and mature, and only becoming more so. And oh by the way, do you want to know why he was sitting in my living room during spring break, instead of down at Panama City Beach with the rest of the Cru movement? He didn't have the money to go to Florida, because he's currently raising support, because he applied and was accepted to Cru's East Asia Summer Project for this coming summer. One year after becoming a Christian, Matt's giving up spring break so he can spend six weeks sharing the gospel 24/7 in a country where Christianity is so repressed I can't even tell you which one it is. Can you believe that?

 

Matt is yet another story that could only be possible through Jesus. Life can be (and is) torture, but it's also mercy. And awe. And love. And those are realities that are OK experience at the same time.

-Greg

Post from Greg – Jeremiah 29:11

I felt like I was going crazy last night and went outside for some fresh air around midnight. Jesus brought a song to mind that I've really loved for a long time, and I wanted to share the lyrics with you:

 

I take my refuge in the palm of Your hand
I take my comfort in Your perfect plan
I take my sorrow and lay it down at Your feet
I take my refuge where I can be free
 
I take my shelter in the shade of Your wings
I take my pleasure in the hope that You bring
I take my weakness to the foot of the cross
I take my refuge where I can get lost

 

In You, Oh Lord, In You, my God
When there's no where to turn
And there's nothing that's true
I find my peace here in You

Right now I don't know if one bit of this song can be said truly about my spiritual walk. Its all stuff that I know is true in my head, but I have a really, really hard time knowing it's true in my heart.

 

When I posted yesterday, I was writing in desperation. Please forgive me for that desperation, and know that I've asked God to forgive me too.

Jeremiah 29:11 says, "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Sometimes I don't believe a word of it. But it's all true. And I need to believe it - I want to believe it.

 

-Greg

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.

-Greg