Tuesday, February 16, 2010

Post from Greg - 2 Corinthians 6:10

Now that I'm finally able and ready to talk to you, I can't figure out what to say first.

Actually, yes I can – I've started crying just thinking about you all. I miss you. Family, friends, ministry team, prayer warriors, Mason family – I wish I was on every last one of your doorsteps ringing the bell and waiting to give you a hug. I love you all so much – "thank you" just doesn't seem to say it anymore, but it's all we can say. The prayers, love, and encouragement you've given us have saved our hearts. The money you've sent has literally saved my physical life. The cards you've sent are taped up to the walls of our apartment next to the bibles verses we've written out and hung up so we can't forget them. Our thanks run deeper than you can imagine – our lives, ministry, and well-being are yours to have, and you have been gentle and kind beyond anything I could have hoped or asked for.

I feel like I'm gonna burst there so many things I want to tell you (this could end up being a very long post – please feel free to read in shifts if I get boring!) There's just so many things that have been running through my mind and heart, and I feel like I need to do a download with you all.

The first thing is that in 2 Corinthians 6:10, Paul says that he's "sorrowful, yet always rejoicing". I feel like that's an accurate summation of where Lisey and I are at. Our faith has perhaps never been deeper, more clear, or faster growing – but at the same time, being alive often feels like a punishment. Earlier in 2 Corinthians, Paul refers to his circumstances as "a light and momentary affliction"; I say that life does not feel light, it feels very momentary, and it certainly is an affliction. In the course of trying to comfort us, a few people have hurt us very deeply, exhorting (chastening) us to "stop doubting", reminding us that since God is on the throne, we need to "believe more" and "have deeper faith". While these people love us, they have no idea what they're talking about. Elise and I are more sure of God's sovereignty that we are that the sky is blue – we believe more deeply in the fact that He directs and controls everything than anything else we believe. If I didn't, I promise you I would have killed myself by now. But I want to echo something R.C. Sproul wrote in his monthly publication that Elise pointed out to me: "I know enough about what the Bible teaches of God's providence and of His sovereignty to know that sometimes God's sovereign providence involves suffering and affliction for His people. That we are in the care of a sovereign God whose providence is benevolent does not exclude the possibility that He may send us into periods of trial and tribulations that can be excruciatingly painful. Though I trust God's Word that in the middle of such experiences He will give me the comfort of His presence and the certainty of my final deliverance into glory, in the meantime I know that the way of affliction and pain may be difficult to bear."

Objectively, empirically, without trying to be dramatic or say something that sounds like it came out of a movie, the simple truth is that my life is either going to be short or miraculous. I do believe that God can and does heal miraculously, and I think its wise to pray for such things. But I also think that the voice of scripture teaches that God more often has us walk the path that He's laid before us, rather than turning that path 180 degrees on the head of a pin. For that reason, I think its wise to pray for miraculous healing, but not necessarily to expect it. As Elise would say, "hope for it, but not in it". If we place our hope in anything except the fact that God has a plan and that His plan is best, odds (literally) are that I'll die young, and my wife and many of you will end up bitter. Know that God doesn't promise me health, comfort, or victory in this life – he promises me Himself. And that is enough.

That's a good starting point for beginning to explain mine and Elise's emotional landscape right now. Its been awful – I'm not afraid of being dead, but I am afraid of dieing. I'm afraid of pain. In the hospital, for the first two days I watched two chest tubes the size of garden hoses drain my blood and guts out of my abdominal cavity and into a bucket beside my bed. Which was nothing, nothing, compared to the terror of being conscious but still on a respirator – the air tube bypasses your vocal chords, so you cant scream, you can ask for help. Its not like having your mouth covered, so that you can grunt but just not form word – the air literally doesn't flow through your throat, it flows through the air tube. So there's nothing to vibrate over your vocal folds. Your mind tells your body to scream, and you lay there silent as new-fallen snow. They restrain you so that you won't rip it out – my wrists were strapped to the bedsides and I couldn't move a muscle - so the only thing I could do was use the last two joints of my left index finger to try to hook people's lab coats as they walked by. It was horrifying.

Someday, the last step before they give me a new heart will be for me to spend up to 6 months on a bi-VAD, a ventricular assistance device. I'll have another open-heart surgery, and they'll put a motor in my belly the size of a softball that will pump my blood instead of my heart. There will be a hose (much like the two chest tubes) and a wire that will come out of a hole in my stomach and be hooked up to a roller-suitcase that I'll have to wheel around. And once the motor goes in, I loose the ability to bend at the waist – so I'll either need to stand or lie at all times, and have people splint me to get in and out of bed. There's a 50/50 chance I don't get to leave the hospital for those 6 months.

One in ten people die in the transplant procedure, and another one and ten die within the first year. The only way to keep a transplanted heart working is immunosuppressant drugs, which will zero my immune system, much like having AIDS would. At 3 years out from surgery, 98% of people are hypertensive, over 50% are diabetic, over 40% have kidney disease, and over 40% have cancer. Living more than 13 years is uncommon, and 20 is regarded as miraculous. As I'm sure Lise and my mom have been saying, I'm a "2" right now on the transplant list. My transplant coordinator, Carolyn, told me that by the end of two years, "2's" either get better and go off the list, or tank and move through bi-VAD to a new heart. Additionally, something like 95% of people who get heart transplants get one because the left side of their heart died – mine is the right side. Carolyn told me in no uncertain terms that whatever is wrong with my heart, its something that cant be fixed – I can't come off the list, and I will get a transplant eventually. So if you do the math and play the odds, if I can survive the operation and the first year, I'm dead before I'm 40.

I say this all not because I want to dwell here emotionally, and I don't want you to, either. I'm simply trying to give you the first taste of mine and Elise's emotional starting point for this past month.

Some of the conversations we've had are absolutely surreal – i.e. Elise's practical 3-year plan if I kick the bucket. Most of the conversations have been much too real – we have wept and cried out to God in ways I didn't know I ever would or could. I went into that surgery knowing that I had constrictive pericarditis, that it was going to be a simple smash and grab event, I would heal up, live to a ripe old age, happily ever after, amen. I woke up with this. Our faith hasn't wavered, but all of a sudden this life seems a very fragile thing. A temporary thing. I've never felt so untethered to this world. If you're a Christian, you might quickly say "Well isn't that a good thing?" – it partly is. Its more weird that good – a mix of joy and detachment, I cant really describe it. If you don't already know what I mean, you will someday.

One of the blessings we've experienced is emotional healing/treatment right along with the physical healing. We're both pursuing counseling, and we're both benefiting greatly from psych meds. We've both been diagnosed with anxiety disorders and clinical post-traumatic depression, and are being medicated for both. Some people tend to have a bit of a judgmental attitude about psychiatric medications – i.e. "If you're really a Christian, why do you need that stuff? Cant you find hope and joy in Christ that's sufficient to get you through?" The truth is that psych meds are a gift from a loving God who provides for us and blesses us with being born in this day and age. Taking Tylenol when I skin my knee doesn't mean that my faith is eroding – it means that I'm taking full advantage of the blessings of the time and civilization God placed me in. At any rate, the medication brings us up out of the abyss so that we can merely be hanging over the cliff's edge while we process, instead of being in free-fall.

One of the hardest things for me to adjust to has been the realization that there are so many things I hade nestled in the back of my mind that I was taking for granted – a million unexpressed and unarticulated desires that I assumed were bound up in the package deal of life. Growing old. Having kids. Watching those kids grow up. Moving back closer to home, deepening everyday-type ties to family. Helping my parents through old age and being with them when they pass away (Campus Crusade calls this "going home" – when someone dies, we call it a "homecoming" -isn't that neat?). Anyway, there are just a million things that I thought life would hold, or could hold. And it still might – but the odds are that it wont. I've just realized how much I've taken for granted, and while its been one of the bitterest pills to swallow, its made everything more precious. Being outside and having snow hit my face and breathing sharp night air made me cry. Take the time to look straight into the wind sometime when its snowing – we're all like those snowflakes, zooming along at a million miles and hour, and life dips and zigs and zags us as we could never predict, and then we're gone. I don't say that in a bitter tone – my life is sweet, and where I'm going is far sweeter. Looking at all those flakes, I think I realized for the first time that there's just so many people in the world. I don't really even know what I'm trying to say, but its important.

Here's a thought I wanted to share with you: God made us all differently, and I think he did it for a reason. I actually think this about everything on earth – that everything was created differently to show a different facet of His glory. Not just you, and me, and mountains, and sunrises – stuff like grass, and pebbles. And not just grass and pebbles, but each blade of grass, and each pebble. Psalm 8 talks about many of the aspects of creation that show God's glory – I think the voice of scripture teaches that literally all of creation does. Anyways, the reason I bring it up is that when I look at the church, at all of God's sons and daughters, I see that different people reflect different facets of God's glory and personality (its good to remember that if our personalities are complex and multifaceted, God's must certainly be even more so). So for example, part of God's glory is that He is victorious – He redeems creation, raises men from the dead, conquers the grave – He is always bursting through and over anything and everything in His way to reigning victoriously. And I think that some people reflect that – don't we all seem to know a couple of God's children who everything they touch turns to gold? They're healthy, happy, well provided for, have deep and inspiring faith, are married and faithful, have children who grew up to be Christians, etc. There's not many of them, probably even fewer than we think, but they are there – and when I see them, and watch them live, I am reminded that God is victorious, and in my heart I sing to Him of how great He is. There are other people who embody God's mercy, those people who simply glow with grace - they're gentle and kind, speak warmly, keep confidences well, dispense forgiveness liberally – I look at them and see that God's mercy trumpets through their lives. Just pick a trait, and I'm sure you can think of at least one person in God's family who seems to shine with it. Its as if God is trying to teach us about Himself through each other.

Now here's why I've been thinking along these lines: It says in Isaiah 53:3 that Jesus is "a man acquainted with sorrow". I've heard a bazillion sermons on this verse, or quoting this verse, and it seems that most of the time its only placed within the context of the last 24 hours of Jesus' life. As if to say that the sum total of Isaiah 53, the sum total of the sorrow in Christ's life (or at least the only sorrow that mattered), were the events of good Friday.

I don't think that's correct. Or rather, I don't think that's the whole picture. Of course the highlight and vast majority of Christ's ocean of suffering and sorrow had to be his betrayal, torture, death, and abandonment by the Father. But when the Bible says that someone is "acquainted with sorrow", I don't think its referring to just one day of a 33ish-year life. I think its much bigger than that.

It says in Hebrews 1:3 that Jesus is the exact representation of the Father's being – God the Father, God the Son, and God the Spirit, three-in-one, created this universe and everything in it. And He created it perfectly – without blemish, sickness, death, or tears. But here's the thing: if you really believe that God is sovereign, then you also believe that He created His world to break. To someday be redeemed in full, but in the meantime to be utterly broken – they sky fell in Genesis 3, and its been crushing us ever since. The Bible teaches that God created this world to necessitate his Son's being ripped to shreds – that He created, planning for His heart to be broken before final restoration could be complete. If Christ is a man acquainted with sorrow, it means the Father is acquainted with sorrow. Part of God's personality is not just the light that shines unhindered, but the light that breaks through the blackest of clouds. And if the Father is acquainted with sorrow, then the Son is acquainted with sorrow. Which means that for 30-some years, Jesus walked through the world He had created that was now rotting and dieing and going to hell. He was surrounded by people who would die in damnation – he traversed a reality where death is so thoroughly ingrained that we call it "a part of life". I think that every dead bumble bee Christ saw along the path broke his heart. I think that every donkey that laid down to die in a field was gut-wrenching. I think that every moaning mother, newborn's cry, and funeral procession was an agony to him. Because this world was never meant to be like this. This corrupted, sick, dieing place was originally made flawless, and we carry the promise that someday it will be so again. That someday the dwelling of God will be with men, and he will live with them. "They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away (Revelation 21: 3-4)." But for now, as we wait for Jesus to come again, this place is broken – and I'm all but sure that it daily broke His heart.

I say this all to point out that one of the facets of Christ's personality is being acquainted with sorrow, and that some of God's children embody it to teach something of His glories to the rest of His family. And I feel like I'm one of those people. Elise too.

Physically speaking, the past three years have been awful, and I'm terrified of what my future years might hold. Emotionally, I've ended up in a place I didn't know existed.

My worst fear, worse than chest tubes and respirators and cancer and dieing in my 30's and never having kids or dieing while they're young – all of it – my worst fear is leaving Elise. She is my heart's treasure, and she is more precious to me than there are words to describe. Except for Jesus, I love her more than everything else I love put together, and I would much rather go through anything than leave this place before her, make her live through my parting. See, that's what I'm talking about – this world feel like a "place" – like a room I happened into and will shortly walk through and out of. Untether. But Elise and I have talked about it, and we both prefer that she die first – we regularly ask God if, for the sake of His kindness, He would take her before me, even if that means she would go home young as well. Or, on the other hand, we both might live well into our 80's, shattering the statistics – who's to say. What I do know is that I want to be here longer than her, and once she's gone I don't want to stay anymore. I'll want my homecoming.

So that's my worst fear. I have others. I fear the path God has placed before me like you wouldn't believe. I've descended further into the darkness than I ever thought possible.

I think the really startling thing is that I'm down here… and I find my Father, waiting for me. He still loves me, still moves me to love Him, still wants me to walk alongside Him. Its like being in a basement where there's absolutely no light, and yet I can still feel His arms around me, stronger than ever before, actually. And a calm, clear, compassionate question: "If I am all you have, is it enough?"

I just started crying again – bare with me. The big take-away so far has been 2 Corinthians 4:6-5:11a. God looks on us with compassion and breathes life into our hearts, opening our eyes to Him and calling us to Him. That's the Gospel, and its worth living for and dieing for. We carry the Gospel around inside us, a radiant treasure of infinite worth, while we are like chipped, sun-dried, fragile, temporal clay pots. We endure the affliction of being alive in a fallen world because its nothing when compared with the weight of glory that the Gospel contains. And one of the main ways that the Gospel shines through us is in our weakness – we carry the death of Christ around in us, so that the life of Christ shines more brightly. We may long to flee our earthly bodies, to get free of this place and go home – but being persuaded of the surpassing value of the Gospel, and knowing Who exactly it is who has saved us, we seek to spend our lives telling others about the grace we've found.

Absolutely nowhere in the Bible does God promise us a long life or a good life – Hebrews 11 makes that perfectly clear. Some of the greatest saints of all time reflected God in victory – they conquered in battle, stopped the mouths of lions, saw their children raised from the dead. But others reflected God's glory in a life of agony – run through with swords, sawn in two, wandering the caves and deserts of the earth as destitute and hated men. The Bible doesn't teach that becoming a Christian makes life easier or fixes your problems – quite the contrary, it teaches that some of us will glorify God by hurting, and dieing. For every Isaiah, there's a Jeremiah. The point is that while life may be neither long nor good, it will be with Him, and that is enough.

And for that reason I say this: Life is a gift. Even in the bleakest and darkest of times, life is a gift, for many reasons. Firstly, I had to be born to be saved – how's that for a seldom-thought-of blessing? Secondly, even if life scalds me to the bones, my weakness provides an opportunity for others to see and value Christ. Thirdly, no matter how short my life will be, God led me to Elise during my time here, and now I will share a special bond with her for all of eternity. Fourthly, I bet I think about heaven more often, and anticipate it more anxiously, and will glory in it more deeply, than a lot of people. I cant tell you how many times I've just sat alone and cried at the words of Revelation 21 that I quoted above – that there will be no more death, or crying, or mourning, or pain. I cant wait for those days. I literally can not wait for those days to come.

Take a second right now – seriously, do this for me - and while you're reading, place your hand to your throat and feel your pulse for 30 seconds. That's probably a good 40 beats for most of you – do you realize that every single one is a gift? That God didn't have to give you that heartbeat, but he did?

Sometimes I'm astounded at the arrogance of people who indict God with the world's troubles – my own current situation included. Where does anyone get off blaming God for what goes wrong? And furthermore, when was the last time we thanked Him for what goes right? Those heartbeats you just felt – He didn't have to give you those, but He did. Do you live in a house? He didn't have to give you that life, but He did. He didn't have to make sunsets and tropical beaches beautiful, but He did. He didn't have to make food tasty, or flowers pretty, or hugs comforting, or music moving – but He did. I died when I was 22 years old – do you remember? My senior year at Penn State – I had a cardiac arrest and died, and laid there dead on the sidewalk for 7 minutes. I didn't have to come back, shouldn't have come back, there's no medical explanation for my coming back – but I did. I was dead, and now I live – in both senses. He didn't have to do that, but He did.

So I want you to know that we're OK. We're not good – in fact, life is awful. But that's OK. Because Jesus loves us. Because we belong to him. Because someday we'll go home, and we'll be with him forever. This world feels like a "place" to me now, but I'm acutely aware of the fact that I do have a home.

If you love us, you could do us no greater honor than honestly considering the gospel – taking the time to think on the fact that God is real, and He is who He says He is and did what He said He did. Elise and I are not your Jesus-freak friends/family members – we're sinners. Awful, terrible people who have wronged you and countless others, who asked God to forgive us and be the treasure of our lives. That's what being a Christian is – giving up the right to being self-determining. Deliberately saying "Jesus, I give up being who I want to be, doing what I want to do, going where I want to go, becoming who I want to become. I'm moving down a rung on the ladder, and I'm letting you be first. I'm letting you determine who and what I am and will become, instead of trying to do that myself." I would do anything to see you explore that truth and, hopefully, believe it. If the cost of you embracing that truth was spending 6 months on a bi-VAD, I'd do it. In fact, that very well might be the plan.

Elise and I love you more than we could ever, ever express. You are precious and special to us, and we love you, and long to be with you and talk with you and visit and tell stories. Unfortunately, another part of being on the heart-transplant list is not leaving a 3-hour radius around the hospital without special need or occasion. So like so much else in life, a visit with you doesn't seem to be in the cards. Instead, I place my joy in the fact that we'll spend forever with you. Billions of years from now, we can all get together for a party and talk about the new and amazing things we saw learned about God that day. I can hope in that, and find some joy in it, too.

I'm also thankful for this blog - its made it possible for me to speak to so many of you so quickly. Truth be told, if it weren't for this medium of communication, it would be months and months before I could talk with even a fraction of you. Whether its my daily exercise for recovery or the emotional processing I'm trying to work through, I have so little emotional energy by the end of the day that I usually feel like a wrung-out rag. So this blog makes it possible for us to be together at a time when it would be impossible otherwise.

Finally, I want everyone to know that there won't be any posts on the blog in the near future. Elise and my mom have done a beautiful job keeping everyone updated, but we've talked about it and we think that its best to revert to the original purpose of this blog – for major and important updates. The next time you hear from us through this medium, I'll either be dieing, dead, or miraculously healed. If you'd like more frequent updates, we would love to send you our monthly email update/prayer letter. Please just shoot us a quick email at greg.boros@uscm.org to let us know – you can even just make the subject line "send me the monthly update" and leave it blank. Elise will typically use this list to send out our emergency prayer updates as well.

With that I think I'm finally done, at least for now. My life and everything I care about boils down to the simple truth that Jesus Christ is the son of God, who died for the sins of the world, rose again, and reigns over all of creation. I love you so much.

2 Corinthians 4:6, Greg

Monday, February 15, 2010

A GREAT report today!

Greg was seen in the heart transplant clinic today by Dr. May and got a WONDERFUL report!  He is doing SO well that they are not going to do the heart catheterization that they were planning to do in the near future!  He said that they will wait 1-2 months to do it, depending on how Greg is doing, but as of right now, he is doing GREAT!  Isn't that amazing?  Your prayers are all being answered -- thank you so much!  His new lowest "dry weight" is 185.2, his heart rhythms are under control, he is having no more pain from fluid accumulation in his abdomen, and he is walking between 1.5 and 1.8 miles per day around their apartment complex!  That totally amazes me when I think that in months past, it would take him sometimes 10 minutes to walk up the six steps to their apartment. 
As Elise reminded us in her post last week, there is no guarantee that it will be God's plan to totally heal Greg, but, He might :)  And even if He doesn't, He is being so kind to allow this period of encouragement.  We are so very grateful!
Other good news is that Greg was granted permission to go to Cook Forest with Smitty this spring for their annual trip.  Smitty has had the tradition of a weekend alone with each of the boys to Cook Forest (usually the same cabin!) since Greg was 3 years old.  It's a very special place and time and it's such an encouragement for them both to know that they'll be back there this year together again!
He had a chest XRAY today to check on the status of his sternum and will be seeing the surgeon tomorrow.  Hopefully, he'll get another good report there.
Thank you again for your prayers!  I hope that you're all safe, warm and healthy in the midst of another snow storm... spring will come SOME day!

Sunday, February 14, 2010

Hearts and Love -- Happy Valentine's Day!

From Becky --
I just read the post that Elise made yesterday and feel compelled to make a post of my own to share a couple of things.
First, I'd like to echo Elise's thanks to all of you who are reading this.  Some of you leave us comments, some send emails, some send cards, some call, some hug us all at work or school or church or in the street.  But all of you care enough to continue to walk this journey with us and the vast majority of you pray and you need to know that your prayers and love are carrying Greg and Elise - and all their families through this time.  Although it's hard to open up to people during hard times, we learn more each day how important it is to do so.  I so much appreciate Elise's (and Greg's) transparency during this time about what they're struggling with and feel like it's another way that God is using this situation - teaching us to be open and honest and not hide what we think might be considered "weakness".  The older I get and the more life Smitty and I live, the more we realize that EVERYBODY has something going on that's hard or embarrassing in their lives.  You only need to scratch the surface to find it! We'd encourage you all to be open and vulnerable and allow those around you to love you and give you a chance to love them back.
Today is Valentine's Day and everyone everywhere is saying "I love you" and buying cards and gifts that have those sentiments written on them.  I just got done writing similar messages to my sweet husband and family members, but I'm reminded what God said about love in 1Corinthians 13:4-7  " Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices in truth. It always protects, always trusts, always hopes, always perseveres."
When Greg proposed to Elise, these words were part of the proposal.  That was before his cardiac arrest in 2007 .... when life seemed "normal"... when they expected to have a newlywed path just like everyone else's - sweetened by the fact that they were going to be serving in ministry and that life would have real meaning for them because they would be serving God each day in their daily work.  As they read this post, they might feel embarrassed that I'm saying this, but since I'm a "mom", I can get away with it :)
I need to tell you that the last part of verse 7 above "it always protects, always trusts, always hopes, always perseveres", has been modelled in their relationship since the beginning and has now reached a point deeper than most of us can imagine.  Their love, at the tender age of 24, is an inspiration and we are grateful to be witnesses to it.  Although I'm tempted to pray that their lives might be a little more "normal", I guess I need to ask you to pray with me that the Lord would just continue to  use them for His purposes and give them His protection, peace and gentle love along the way. 
So... Happy Valentine's Day!  I hope that we are all able to show love the way it is supposed to be shown and that the same kind of love returns to us-- not just today, but always.

Saturday, February 13, 2010

ICD/Pacemaker working well!

Hello everyone!

Because of the snow over the last week, not much has been happening on the medical front and I haven't had a lot of news to share.  However, the roads are clear now and things are happening again.  Greg's appointment at the Heart Failure/Transplant clinic last week was postponed until this Monday due to the snow.  However, he was able to go to his appointment at the electrophysiologist office (Arrhythmia Associates) on Friday.  They checked out his new ICD/Pacemaker and incision and said that they are both looking great!  He's still being paced 100% of the time at 75bpm.  It's amazing how much better he feels now that his heart rate isn't hovering in the low 50s and dropping to the upper 30s when he sleeps! 

Greg has continued dropping weight and is now down to 185 lb.  This means that before he was put on diuretics, he had 41 lbs of water backed up around his heart and organs!  He feels SO much better without the extra water-weight.  Once Greg's weight loss plateaus, the doctor's will be able to determine what Greg's "dry weight" is.  This is how much he weighs without having excess fluid accumulation and it will be the weight that Greg needs to defend.  If Greg gains 2 lb. in one day or 4 lbs. total (from his dry weight) over any period of time it is a sign that his medication isn't enough to prevent him from backing up with fluid and that we need to see the doctor's asap.  Greg weighs himself every morning so that we can watch for any sign of fluid accumulation.

On Thursday night, Greg attempted to sleep in bed for the first time since coming home from the hospital (he's been sleeping in the recliner that one of our wonderful ministry partner families very generously gave us).  Unfortunately, he rolled onto his stomach while he was sleeping and woke up in horrible pain.  We've been able to manage the pain somewhat, but Greg feels like he's regressed back a whole week in his recovery.  He has more energy than he had when he first came home, but his level of pain is back to what it was on his first few days out of the hospital.

We called the surgeon's office Friday morning to see how worried we should be about him sleeping on his stomach (that is one of the DO NOT DO THIS things on his post-op. instructions.  He's not even supposed to lay on his side for 5 weeks after surgery- the nurses said that it is just as bad as sleeping on his stomach).  When Greg talked to the nurse, we found out that they were supposed to contact us 10 days ago to set up a post-op appointment and schedule an x-ray to see how his sternum is healing.  The mix-up happened because of Greg being put on the Heart Transplant list and having the second surgery - he wasn't discharged from the hospital in the way that open-heart surgery patients are discharged.  Thankfully, we were able to schedule an appointment for him on Tuesday at the surgeon's office and they are faxing the x-ray order to the right place so we can get it done on Monday after his appointment at the Heart Transplant Clinic.

We learned that it will be 3 months until Greg's sternum is actually knit back together.  Right now, the nerves and muscles are working to repair themselves- the actual bone isn't doing much at this point, that takes MUCH longer. 

On a different note, I will be calling a counselor that was recommended to me by a good friend to see if I can begin meeting with her.  She was a staff member with Campus Crusade for Christ years ago, and is a licensed counselor.  In addition to working at her practice, she also works at a women's center.  I'm hoping that I'll be able to go through the women's center to get a reduced counseling fee.  She does offer discounts to those who cannot afford her fees, so I'm hopeful that I may be able to see her at a reduced cost.  Please pray for this with me!  Although it's never easy to ask for counseling, I know that I need to have someone (a professional who knows what questions to ask and has walked people through similar crises before) to process the last few weeks with.  The weight of what has happened and waiting for Greg's heart transplant is not something that I can "handle" without help, and I'm trusting that the Lord is going to work through her (if I'm able to go) in a way that will be a blessing to both me and Greg.  Greg is meeting with Randy Newman (his mentor who is on the staff of Campus Crusade for Christ) weekly for this same purpose.  They met today and it was immensely helpful for Greg. 

While Randy was at our apartment with Greg, I was able to go out the the farm for some horse-time and came home feeling very refreshed.  I'm so grateful that the Lord has enabled me to have Ricki down in Virginia with us- what a blessing!  And I'm supremely grateful for Allison and Emma who lease Ricki.  They have been so helpful these past few weeks - taking care of him for me and making sure that I didn't need to worry about Ricki at all while Greg was in the hospital.  If you're reading this- thank you!

One fun thing:  Greg made me big collages of all the cards that we've received and we hung them up on our apartment walls a few days ago.  They are a constant reminder of all of you who are praying for us and supporting us through this, and we feel so encouraged when we see them!  They've really helped me to feel like we are not alone in this trial and to remember that the Lord is taking care of us through so many people who love us dearly.  Thank you for your love, prayers, support, and cards!

We'll let you know what we find out a Greg's appointments.

Gratefully yours,

Thursday, February 4, 2010

First Week Home


I've been meaning to write an update for a few days now, but every time I sit down to do it I feel so overwhelmed by everything that has happened- and I decide to put it off.  Well, today's the day!

Greg has been doing really well at home, I've been so proud of him!  He is so committed to being as healthy and strong as he is able to be that he's made the HUGE changes necessary in his diet without any complaint.  The fluid restriction (he can only have 1.5L per day) has been the hardest thing for him to get used to, but he's made a great schedule for spacing his fluids out throughout the day.  He's also been doing a great job walking.  We've walked to the mail box and dumpster for 3 days in a row now, and he gets stronger each time.  Its really incredible to see the improvement that has been made by the diuretics, new ICD pacemaker, and time in the hospital.  He's walking better than he has in months!

Because Greg's condition changed drastically each day we were in the hospital, I feel like there is some confusion about what's going on with his heart transplant and I'd like to attempt to clear it up (but its very complicated so I don't know how clear I'll be!).  When they opened him up for what they thought was going to be a pericardectomy, his heart was in awful shape.  For the first time they clearly saw that the problem wasn't his pericardium at all, but his right ventricle was "blown out" so to speak.  Instead of having a strong filling and emptying action, it was stretched out beyond its usual size and was barely pumping at all.  This was causing a backup of fluid around his heart and in his body- which explained why he gained what we now know was 37 LBS of fluid from his dry weight, felt so fatigued and had so much pain when moving around.  This backup of fluid was decreasing his cardiac output and starving his brain and other organs of some of the vital oxygen that he needed.  If this continued unchecked, Greg would most likely have died within the year.  When they explained this to us we were SHOCKED- not only at such devastating news but also at how Greg was able to be on campus, teach at Fall Retreats, lead his Bible study, mentor students, and a whole host of other things while his heart was literally dying.  I'm constantly amazed at his strength and how the Lord has used him in the midst of such pain.

At first the doctors thought that Greg would need an emergency heart transplant because his heart was in such bad shape and they weren't sure if he would respond to any treatments.  However, as the days continued in the hospital, Greg had a great response to the treatments and was eventually released to go home on a heavy dose of diuretics, fluid and sodium restriction, and a new diet plan to help him regain protein stores in his body (which his lack of appetite before being treated had caused to diminish).  This is truly incredible that someone could be on the "fast track" to a transplant, and now be home on such limited treatments.  We are so grateful that the Lord has taken care of us in this way!

Getting a heart transplant is sort of a catch-22.  You only get it because you absolutely would die with out it, and in that sense its a miracle.  However, it brings a whole host of complications with it.  You are on immunosuppresents for life, you are more susceptible to cancer, diabetes, high blood pressure, infection, etc.  The average life span after transplant is 13 years with the best case scenario (at this point) being between 20-25 years.  Many people are able to have a "normal life" afterwards but its not really normal.  Essentially, you and I who are healthy would NOT want to live with the things post-transplant patients live with.  However, when you're given a year to live without it, even the risks are worth it.  The doctors keep talking about the cost/benefit ratio.  There are so many difficult things and risks, that they don't want to transplant someone until the risk of not transplanting them (death) FAR outweighs the benefit of them keeping their own heart longer.  As they say, once you have a new heart, the clock starts ticking.
This is why its a great thing that Greg has been bumped down to a status 2 on the transplant list.  Status 2 means that he will need a heart, but he's stable right now at home and on pill medications, and if they can keep him feeling as good as he is now (which, minus needing to heal from having his sternum operated on is much better than he's felt in months, if not years) they do not want him to get a new heart and start the "clock".  As long as things stay stable (and they'll be seeing him each week and running tests to track his heart) he'll be a 2 and we are praying that he'll be a 2 for YEARS if not FOREVER!  Please pray this with us!

However, if he starts to get worse (which could happen tomorrow, 2 months from now, or a year from now) he'll need new treatments.  The treatment options include more pill medications to control his fluids and help his heart pump, IV medications (which aren't a great option for Greg because they can induce arrhythmias) and a biVentricular Assist Device.  Any of these would require hospitalization for some time until he'd be stable again.

The biVAD is the "safety net" and its used to keep people alive long enough to get a new heart who would die beforehand without it.  Greg and I had the opportunity to see one yesterday and it was not comforting.  It's a big device that is implanted under your diaphragm (another open-heart surgery) and there's a tube extending from the device to outside of your body that connects to something that looks like a roller-suitcase.  This is the battery/control pack/everything you need to make it run.  It has a constant loud pumping noise and is heavy and limits movement a lot (you can't bend over with a biVAD inside of you for example).  Some people who have a biVAD are able to leave the hospital and go home with it, others must stay in the hospital (which is the same case as the IV drugs).  Obviously, this is not something that we want to happen, but it is the "safety net" that we have if Greg can't make it on his own.  Typically, patients wait for up to 6 months on a biVAD for a new heart.  Being on a biVAD bumps you towards the top of he list because it is not a good long-term solution.

I think that's all the technical information to help you understand where we are right now.  Emotionally, this has been a roller-coaster.  We go from hope to despair, from laughing to crying, and from OK to sheer exhaustion so quickly.  It is so much to process, and effects everything about planning for our future, hopes and dreams we had, and even when we'll get to see family and friends (I didn't get into it yet, but when you're on the list you need to stay within a 2-3 hour radius of the hospital at all times.  However, it is more flexible with a status 2 which is another reason we're praying he stays a 2 for a long time).  We are trying to balance the truth and the hope that God miraculously heals and he is able to completely heal Greg's heart, have him beat every statistic, and live a long and quality life, and the equal truth that miraculous healing isn't God's usual way.  As Greg said, God more often walks us down the path He's laid before us instead of turning everything on the head of a pin and changing the path.  We know he does both.  And we're hoping for the best, but we're not hoping IN the best.  Our hope HAS to be in God- in the truth that one day He will wipe away every tear and death and pain will be no more.  And that we will be in Heaven with Him for eternity.  If we put our hope in Greg's miraculous healing and he's not miraculously healed, I think a lot of bitterness and disappointment would grow.  But if we put our hope in God who said He'd never leave us or forsake us and in God who came and suffered FOR us, then even when life doesn't turn out how we hope (and it hasn't in case you're wondering!) we are not crushed.  I keep saying to myself over and over again, we are crushed but not abandoned, we are crushed but not abandoned.  I feel crushed by this.  Greg feels crushed by this.  But God has NOT abandoned us.

As I wrap this post up, I want to thank all of you.  You have encouraged us in ways that I can't even begin to express.  You have kept us from feeling so alone in this struggle.  Your cards, emails, comments, gifts, everything you've done have shown us that we have a support system behind us that most people could only dream of.  We feel so loved and supported, and we need each of you so much.  This is not something we can handle alone- its too big, its too hard.  Thank you for carrying our load with us.  Thank you for loving us and praying so faithfully for us.  Lets all keep our eyes fixed on Jesus, the author and perfecter of our faith, and the one who suffered so that our suffering might one day end!

With love and gratitude,