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,


  1. Elise, thanks so much for this post. I know you have been overwhelmed and your head is spinning with all the details-- but you have spelled things out very clearly for us. It's so good to know how we can be praying alongside you guys. While I was initially disappointed that Greg didn't get a higher placement on the wait list-- I can honestly rejoice with you guys he landed at the level 2 placement. I will add my prayers to your own that he remains there a good long time. I'm so glad he is feeling stronger each day. I'm sure the changes in his diet will be a big learning curve but I'm praying you both adapt quickly and it won't feel like such a sacrifice. Thanks again Elise for the long update. We're all still cheering for you... and for the record-- I hope you guys will be able to travel farther than the 2-3 hr. hospital radius!

    Love, Kellie (Tim too)

  2. Thank you so much for the detailed update! We continue to pray for you and Greg. We love you.

    Carey, Dan, Hannah & Noah

  3. Elise, thanks so much for updating us. We know it's A LOT to take in, so we appreciate your willingess and ability to sit down and put it pretty clearly for us. We continue to be floored by both your's and Greg's strength and faithfulness. Thanks!
    In other news, the mail that Jer and I sent to Greg in the hospital just got returned to us today... huge bummer!!! Greg, we've been anticipating your reaction to it, and it pains us to know you haven't gotten it yet. I'll put it in the mail tomorrow and hopefully it will make it this time by Monday at the latest!
    Love you both!

  4. Elise & Greg,
    I am sitting here with tears streaming down my face. Your post has deeply touched me and I am assuming, all of us who read it. It brings us right back to where we all need to be every day, every moment....our eyes solely focused on Jesus. I would be presumptuous to suppose there are words I have that could offer the peace and healing Greg needs right now….yet in your simple words, you lead us straight to the peace and healing we all need every moment. From the depths of my heart, I thank-you for so openly allowing us to share this journey with you. Your lives are a gift to us all.
    We are praying for you both and cheering you on.

  5. Elise, thank you for the medical update and please know we are praying daily for you & Greg. I am so encouraged by your message of faith and that you continue to praise and honor God, not grumbling or complaining, faithfully standing. Just yesterday I told Scott that I wanted to memorize 2Cor 4:7-10 and now you have given me even more inspiration to do so. We love you!!! Thank you for your honesty and transparency it is more encouraging than you will ever know. Serving Him....Jody

  6. You both are an incredible example of a couple who lives by faith. I am astonished and encouraged at the way that you have pressed deeply into the heart of God during an unimaginably hard situation. I pray that God would continue to meet you in your moments of deepest despair, as well as rejoice with you in the hope we have in Christ. I will continue to pray for you as you put your hope and trust in Him. I love you guys!

  7. Greg & Elise
    Becky has been so good at keeping us up to date and now with the blog, we can walk a virtual path with you. You guys are continually in our prayers. I can't begin to put into words how your strength and courage have strengthened and encouraged us. You both are amazing wonders of our Creator. We love you!
    Pam & George

  8. Elise/Greg... Greg, your mom and I are 1st cousins... we are the one's living in Qatar. I just want you to know that you have daily prayers coming even from across the ocean, as Tricia and I lift you up in prayer each day.

    Elise, a very touching post that shows how deep your faith is and how it transcends into every aspect of your life.

    God's richest blessings to you both!

    Jim/Tricia Gartner

  9. Hey Sis, Just wanted to let you know that I Love You and that I admire you more than you know. Thank you for writing this letter- it is a masterpiece and so many people, even within my small circle of friends, are being touched by your story and this blog. Thank you for letting God share His light and love through you guys!

    Josh and I are rooting and praying for you and are so thankful that Greg's at Level 2 now! Praying in agreement with you that he'll be able to keep his heart for years and years to come, that the Lord would provide full healing for him, and for an amazing and incredible life ahead for you two.

    Love, love, love,
    Your admiring Sis

  10. Greg and Elise,

    You did a wonderful job explaining everything. You don't know me or Debbie (Mrs. Hill) but Greg does. I just wanted you to know that if I can understand your explanation than anyone can because I am a hunter and Mrs. Hill always told me that all hunters have low iq's:-) This is from her 5th grade teaching experience. So once again great job!

    Once again we are constantly bothering God on your behalf (remember the story in the old testament, I think it was Hannah). I'll check to make sure.

    Debbie and Greg Hill

  11. Greg and Elise,

    Although Hannah is a good example of persistent praying (I Sam.1) the example I was thinking of is the Parable of the Persistent Widow found in Luke 18:1-8. I just wanted to clarify this. So Debbie and I will be the "Persistent Widows" on your behalf.

    Have a great evening because our God is Great!

    Greg and Debbie

  12. Greg and Elise,
    Thank you for the updates.
    I pray for you and your family
    Love Valerie McMahon

  13. Greg and Elise,
    I continue to pray and keep you in my hearts and prayers. You two are so encouraging and I love you two soooo much! Thanks for the updates, and if there's ANYTHING you need, please please let me know. Stay warm with this winter weather!
    In Him by Grace,

  14. Dearest Gregor,

    It's your beloved college roommate from freshman year. Last Tuesday, I ran to the top of the Empire State building. I started to think it perhaps was not the best idea when I dragged myself up to the 60th floor, but then I tried to compare it to what you're currently enduring and realized there was no contest. From then on the remainder of the 86 flights and 1,576 became a cake walk - a deliecious, frosted covered cake walk. If you ever want to see one of the best views of the city, do yourself a favor and take the elevator.

    So when I got to the top, I realized that I had forgotten my jetpack (dammit!) and simply snapped a photo instead. I then took the elevator to the bottom which took less than a minute (take that tower of tower!) I was a bit sore as I limped to work, but nothing compared to the Saturday afternoons freshman year when we got back from devouring a disgustingly delicious brunch and prayed to be put out of our misery. I remember struggling to turn on my side, but when I mustered up the strength to do so, I would laugh because I would see you faceplanted in your pillow and moaning. Well, you got over that so I see no reason why this current setback will keep ya down for long.

    Seriously, how did you lose 50 pounds in one school year AND put up with me stuffing my face with candy and other assorted awesomeness? You are truly gifted, Greg. If you have any doubt about it, look in the mirror. That should resolve any issues in a big hurry.

    So a bit of time has gone by, we have learned a few things and grown much sexier--well atleast you and your beard have. Tell it I said 'hello' please. We've moved out, moved forward and been successful. I feel truly priviliged to have kept in tough and remained good friends. We've had our battles (although never with each other--high five!) but have always overcome. This will surely not be your last hurdle, but it appears with the more obstacles that you face, comes a stronger and larger army by your side, in which I will always by a loyal member (we need a name by the way, get going on that).

    I truly value the bond of our friendship and how it has extended far beyond a tiny room during the first year of the rest of our lives. Cliched, yes, but true. So fight the good fight and when I'm not working 6-7 days/week I'll come down and cheer you up. And even if you don't want to see me, I'm coming anyway with atleast 20 I <3 NY tee shirts. You do love New York City, don't you? DON'T YOU PUNK?

    Anyways, I'll be in Rio de Janeiro for the next 10 days tackling the globe with Dhani. If there's anything you want me to bring back let me know--besides a picture of me high-fiving the Christ the Redeemer statue (I'm not forgetting the jet pack this time). I love you dude!

    Your most successful friend in the entertainment industry now and forever,


  15. Hey Elise,
    Thanks for your post on Gregs condition. I am so glad that he is back home. I was very surprised to hear about his condition at first, since I saw you both on Christmas Eve and he seemed just fine to me. It has been rather stressful for me to hear about what you and Greg have been going through with all of this and I know it has been a roller coaster of emotions for all of us who are here praying for you both. I know that God has blessed both of you and has been with you both through all of this. I dont know why God has chosen this way in which to reveal himself and his glory and at times I have been frustrated with him especially since I so often want a quick fix. But I know he is good and he has a plan for all that happens in our lives to lead us in paths for his names sake.

    I'm not crazy about this whole idea of a transplant, it sounds like a lot of trouble to deal with. So because of that I am glad he is stable and the Meds and his Diet are working out for him and I hope that things remain that way for Greg as long as possible.

    I have missed you guys and I would love to see you both sometime. I will keep you both in my prayers.

    I love you guys.

    Love, Your Brother in Christ,

    John Lyver

  16. Greg and Elise, Thanks for the update post. I am praying for you both and am encouraged by your progress, Greg. Stay strong. Deb Endler