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 mailbox and dumpster for 3 days in a row now, and he gets stronger each time. It's 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 it's 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 without it, and in that sense it's a miracle. However, it brings a whole host of complications with it. You are on immunosuppressants 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 it's 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 it's 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 it's 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 (for example, you can't bend over with a biVAD inside of you). 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 the 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 affects 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- it's too big, it's too hard. Thank you for carrying our load with us. Thank you for loving us and praying so faithfully for us. Let’s 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, Elise