Thank you so much for all of your prayers and encouragement in light of Greg's recent rejection. We've been very blessed by all the support we've received!
This has been an interesting week for us. Greg finished his prednisone treatment yesterday but is still feeling the effects of it. The high doses gave him a lot of side effects and he's extremely worn out and feels pretty awful. However, he was able to participate in most of our ministry activities this week which was a blessing!
Yesterday we met with one of the heart transplant program doctors to discuss the results of Greg's 1 year anniversary tests. For the most part everything looks really good! There are some changes that Greg will be making to address the tests that had less desirable results, and we learned about some measurements Greg can take daily to help watch for signs of rejection in the future. All in all, the appointment was really positive and even with Greg's current rejection status the doctors are please with how he's doing. They reminded us again that everyone experiences rejection at some point and the important things is that we caught it early before damage to his heart could begin.
Greg will have a biopsy next Wednesday to determine if his body is still rejecting his heart. If everything is back to normal (from the prednisone treatments) they won't make any changes to his medications or biopsy schedule and we'll be able to visit his family for Christmas and attend the Radiate conference that he's teaching at! If he's still a level 2 or has increased to a level 3 rejection, he will spend 3 days receiving IV treatments and then will have a biopsy a week later to see if anything has improved. The great news is that the doctors will likely allow him to go to Radiate to teach (maybe just overnight depending on how he's doing) even if he's still rejecting since it's only an hour away and so close to Johns Hopkins (which has a transplant center)! This is a huge answer to prayer!!
On Saturday I will be traveling to see my grandma and Greg's dad (and possibly one of his brothers) will be coming to see Greg. I'll come back on Tuesday in time to get some sleep and go with Greg to his biopsy Monday morning. All of the details have worked out really well and it is so clear to me that God is directing everything related to this situation and answering many of our prayers.
I'll let you know when we find out the results of Greg's next biopsy. Thank you so much for your continued prayers!
Love,
Elise
Thursday, December 15, 2011
Friday, December 9, 2011
Rejection
We just found out that Greg's biopsy showed that he's having a level 2 rejection. Thankfully it was caught early enough that he doesn't have to be admitted to the hospital right away. Starting today he'll be on heavy doses of prednisone for 5 days and then they will repeat the biopsy on the 21st to see if things have improved. If not he will be admitted to the hospital for more intense treatment.
We feel a mix of emotions - the biggest one being surprise. Although in hindsight he was starting to have shortness of breath like he used to before he had his new heart and was dealing with massive heart failure.
Unfortunately the timing of this is really disruptive to our plans for the holidays. We were going to be in Pittsburgh with his family and I was going to fly to Illinois to see my grandmother during that time - now we're trying to figure out how I can still see her but be back in time to be with Greg for his biopsy. Another complication is that he is speaking at the Radiate conference in Baltimore from the 27th-1st but now might not be able to go.
Please pray that the prednisone would quickly stop the rejection, that his biopsy on the 21st would come back with 0 rejection, and that Greg will be able to speak at the conference. We're feeling pretty overwhelmed with all of this - scared, angry, sad... a whole bunch of emotions are flooding in. Please also pray that we'll be able to fix our minds on the truth that God is in control, that this is all a part of his plan, and that we can rest in Him instead of feeling panic.
Thanks so much,
Elise
We feel a mix of emotions - the biggest one being surprise. Although in hindsight he was starting to have shortness of breath like he used to before he had his new heart and was dealing with massive heart failure.
Unfortunately the timing of this is really disruptive to our plans for the holidays. We were going to be in Pittsburgh with his family and I was going to fly to Illinois to see my grandmother during that time - now we're trying to figure out how I can still see her but be back in time to be with Greg for his biopsy. Another complication is that he is speaking at the Radiate conference in Baltimore from the 27th-1st but now might not be able to go.
Please pray that the prednisone would quickly stop the rejection, that his biopsy on the 21st would come back with 0 rejection, and that Greg will be able to speak at the conference. We're feeling pretty overwhelmed with all of this - scared, angry, sad... a whole bunch of emotions are flooding in. Please also pray that we'll be able to fix our minds on the truth that God is in control, that this is all a part of his plan, and that we can rest in Him instead of feeling panic.
Thanks so much,
Elise
Friday, November 25, 2011
ONE YEAR ANNIVERSARY!!!
Today is Greg's One Year Anniversary with his new heart!! Hooray!!! We are so thankful to have made it to such an important landmark! And we are grateful for every one of you who has supported us this year (and many prior years) through prayers, cards, encouragement, hugs, financial help, supporting our families, etc. We certainly have not been on this journey alone, and I don't think we would've made it if we were. You have been a beautiful picture to us of the body of Christ - your kindness toward us has been his "hands and feet" in so many ways.
The month leading up to today has been difficult for us. We both (but Greg most of all) have been dealing with flashbacks of horrible things that happened in the months leading up to the transplant and right after. It's odd how memories can pop up when you least expect them. There were things that I just pushed to the back of my mind once Greg's new heart came because we were just SO overwhelmed by gratitude - and then fear when his condition worsened - and then we were just focused on getting him home and his recovery - and then on returning to ministry. But a lot of experiences that I'd pushed back have been coming back to me and now I'm realizing that I have a lot more to process.
So for a lot of reasons we've felt some dread of today - and some guilt for feeling that dread. It is a day of celebration for sure, but also a reminder of some very hard things. I pray that over the years November 25th becomes more and more associated with the gift of life and not the close call with death.
How are we doing, one year out? Well, it's a mix for sure. There are so many wonderful things to celebrate: we are back in full-time ministry, working with students and staff that we love; we have made new memories and spent holidays with family; Greg's heart is very healthy and he still hasn't experienced any rejection; we are able to have fun again, and to enjoy people and hobbies instead of being completely focused on health 100% of the time; Greg has not been readmitted to the hospital since his transplant; God has provided financially through many people not only for the transplant but also our other needs; we've seen God answer so many prayers, etc. And then there are some tough things: this experience has changed us deeply and we struggle to hope that we can experience good things in this life; we have lived through some horrible things that affect us daily; we are still not sure how to move forward from this experience; neither of us feels back to "normal" yet- but we're also wondering if there is a "normal" or if we have to make a new "normal"; we're living under the shadow of "life expectancy" and not sure how to do that yet unable to ignore it, etc. We have good days and bad days, much like anyone else, but our bad feels exacerbated by this experience.
I'm not sure what to write now that I've shared how we're doing - but I'd love to ask you to keep praying for us.
Most of all, I want to say that Jesus Christ is the only reason we have not been utterly crushed by this experience. If you've seen any good qualities is either of us through this whole experience, it is only by the grace of God. Apart from him we are weak, fickle, hopeless, scared, and completely unable to face tragedy. Yet somehow he gives us what he promised, grace to get through each day - sometimes moment by moment. I really hope that our story of Greg coming so close to death points you to the only One who ever overcame death. He alone is the reason we are able to get out of bed each day. And we cannot wait to be with him forever.
The month leading up to today has been difficult for us. We both (but Greg most of all) have been dealing with flashbacks of horrible things that happened in the months leading up to the transplant and right after. It's odd how memories can pop up when you least expect them. There were things that I just pushed to the back of my mind once Greg's new heart came because we were just SO overwhelmed by gratitude - and then fear when his condition worsened - and then we were just focused on getting him home and his recovery - and then on returning to ministry. But a lot of experiences that I'd pushed back have been coming back to me and now I'm realizing that I have a lot more to process.
So for a lot of reasons we've felt some dread of today - and some guilt for feeling that dread. It is a day of celebration for sure, but also a reminder of some very hard things. I pray that over the years November 25th becomes more and more associated with the gift of life and not the close call with death.
How are we doing, one year out? Well, it's a mix for sure. There are so many wonderful things to celebrate: we are back in full-time ministry, working with students and staff that we love; we have made new memories and spent holidays with family; Greg's heart is very healthy and he still hasn't experienced any rejection; we are able to have fun again, and to enjoy people and hobbies instead of being completely focused on health 100% of the time; Greg has not been readmitted to the hospital since his transplant; God has provided financially through many people not only for the transplant but also our other needs; we've seen God answer so many prayers, etc. And then there are some tough things: this experience has changed us deeply and we struggle to hope that we can experience good things in this life; we have lived through some horrible things that affect us daily; we are still not sure how to move forward from this experience; neither of us feels back to "normal" yet- but we're also wondering if there is a "normal" or if we have to make a new "normal"; we're living under the shadow of "life expectancy" and not sure how to do that yet unable to ignore it, etc. We have good days and bad days, much like anyone else, but our bad feels exacerbated by this experience.
I'm not sure what to write now that I've shared how we're doing - but I'd love to ask you to keep praying for us.
Most of all, I want to say that Jesus Christ is the only reason we have not been utterly crushed by this experience. If you've seen any good qualities is either of us through this whole experience, it is only by the grace of God. Apart from him we are weak, fickle, hopeless, scared, and completely unable to face tragedy. Yet somehow he gives us what he promised, grace to get through each day - sometimes moment by moment. I really hope that our story of Greg coming so close to death points you to the only One who ever overcame death. He alone is the reason we are able to get out of bed each day. And we cannot wait to be with him forever.
"Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, "Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away." Revelation 21:1-4
Sunday, October 30, 2011
Still No Rejection
Hi everyone!
Greg had a biopsy last week and the results showed that he still has not had any rejection of his new heart!!! We are completely blown away by this. The doctors and nurses told us over and over again that we should expect rejection because everyone has it at some point, especially during the first year. And now we are 1 month away from Greg's 1 year anniversary of his new heart and he still has not had any rejection! God is so good!
Next month he will have many different tests done - x-rays, echocardiograms, another biopsy, etc. so that the doctors can have a more in depth understanding of how his heart is doing after 1 whole year. And I am so pleased to say that we have no reason to believe that they will turn up anything that is not going well!
If everything checks out well next month, Greg won't have to have a biopsy for 3 months! They'll continue stretch out the length of time between biopsies and eventually he'll just get them once per year.
Thank you to everyone who has been praying that Greg would be protected from getting sick now that it's flu season. Although I've been dealing with lots of congestion and such off and on, God has clearly been protecting Greg because he hasn't had anything worse than an occasional sore throat!
Love,
Elise
Greg had a biopsy last week and the results showed that he still has not had any rejection of his new heart!!! We are completely blown away by this. The doctors and nurses told us over and over again that we should expect rejection because everyone has it at some point, especially during the first year. And now we are 1 month away from Greg's 1 year anniversary of his new heart and he still has not had any rejection! God is so good!
Next month he will have many different tests done - x-rays, echocardiograms, another biopsy, etc. so that the doctors can have a more in depth understanding of how his heart is doing after 1 whole year. And I am so pleased to say that we have no reason to believe that they will turn up anything that is not going well!
If everything checks out well next month, Greg won't have to have a biopsy for 3 months! They'll continue stretch out the length of time between biopsies and eventually he'll just get them once per year.
Thank you to everyone who has been praying that Greg would be protected from getting sick now that it's flu season. Although I've been dealing with lots of congestion and such off and on, God has clearly been protecting Greg because he hasn't had anything worse than an occasional sore throat!
Love,
Elise
Friday, September 9, 2011
Quick Update
Hey everyone!
We are very busy with the start of the fall semester at GMU but wanted to stop in and let you know that Greg continues to do well. He recently had another heart biopsy which showed that he still hasn't had any rejection!!! It's really incredible for him to have gone over 9 months with his new heart without facing rejection and we are so grateful! We are both back doing ministry full-time and feel incredibly blessed to be back doing what we love. Greg spoke at our weekly Cru meeting last night. The last time he spoke was a little more than a year ago - shortly before he went into the hospital for 3 months. It's hard to believe that our future looks so hopeful now and looked so bleak then. We are so thankful for all that the Lord has done for us! And we are so incredibly grateful for your love, prayers, and support.
Thank you!
Elise
We are very busy with the start of the fall semester at GMU but wanted to stop in and let you know that Greg continues to do well. He recently had another heart biopsy which showed that he still hasn't had any rejection!!! It's really incredible for him to have gone over 9 months with his new heart without facing rejection and we are so grateful! We are both back doing ministry full-time and feel incredibly blessed to be back doing what we love. Greg spoke at our weekly Cru meeting last night. The last time he spoke was a little more than a year ago - shortly before he went into the hospital for 3 months. It's hard to believe that our future looks so hopeful now and looked so bleak then. We are so thankful for all that the Lord has done for us! And we are so incredibly grateful for your love, prayers, and support.
Thank you!
Elise
Tuesday, August 2, 2011
Post from Greg - Job 1:21b
Its been a wonderful and horrible 90 minutes.
An hour and a half ago I met a man in the cardiac rehab clinic who goes by the nickname "Lucky" - he's survived the Vietnam War (where he was wounded and received a prosthetic leg), two heart attacks, and was one office wall away from being incinerated when the plane hit the Pentagon on September 11th, 2001.
Ten minutes after that I met a middle school girls who has an LVAD and two other mechanized apparatuses wired and tubed into her body keeping her alive - all the machinery requires a two-sided backpack and a belt to carry around.
An hour after that, I ran into an old friend, Cindy, who is a middle-aged woman waiting for a heart. When Elise and I started going to the transplant support group, everyone shunned us because we were so much younger than anyone else in the program at that time. Maybe its not fair to say they shunned us, but they certainly didn't know what to make of us, and therefore ignored us. Cindy and her husband, Dave, were the only ones who reached out to us. Every time we saw them in support group or clinic, they would encourage us, pray for us, and ask us how we were doing - despite Cindy's own situation and obvious suffering. If you've never spent time with someone on a VAD, it would be hard to imagine what I'm talking about.
I was headed to the elevator in the parking garage when out popped Cindy, all smiles and hugs. She told me she'd actually been looking around the hospital for me for months - the last time we saw each other was at a support group where Elise and I were told that if we had children, I wouldn't be able to hold them or snuggle with them. Cindy spent a great deal of time looking for me to tell me what she finally vocalized this morning - "You and Elise can have babies, Greg - just don't take them to daycare. Don't take them to daycare, and you'll be just fine!"
She asked me if I had gotten a heart, and when I told her that I did this past Thanksgiving she literally squealed and jumped for joy. Such effort for someone on a VAD is almost impossible, and yet here she was clapping and hugging me and congratulating me, as if I had somehow accomplished something. She's an incredibly sweet woman, and has always cared deeply about the outlook on mine and Elise's life.
I asked her how she was doing. She told me she had just left Dr. Desai's office, and that he had sorrowfully informed her that her body has become too dependent on the VAD she has lived with for 5 years, that her antibodies where too screwed up, too depleted. Her prognosis and treatment have been altered accordingly - she will never be offered a heart, and she has at most 5 years to live.
I have no idea what to say. She hadn't even told her husband yet - she still might not have, depending on how long her drive home is. It was only then that I recognized the haunted glint in her eyes that she was trying to mask with a big false smile. I know the look, because I gave to many of you leading up to my surgery - its the look I had when I was convinced I was about to die.
She started crying, and after a wordless embrace I let her go - she needed to be with her loved ones more than anything, and alone if that wasn't possible. I remember.
On the way home, I passed a house where a pile of garbage out front was on fire. Apparently it had spontaneously combusted in this heat, and had spread to the landscaping. I stopped to warn the people in the house, and it turns out they had no idea that the fire had started and was spreading. They were able to use a garden hose to put out the blaze. We couldn't even really communicate - there was a language barrier.
Its two o'clock now. This email started with events 90 minutes ago. And I don't know what to think and feel - I'm still in shock over Cindy. I don't even know why I'm writing this, except that I felt God calling me to write it down and share two verses with you. The first is Job 1:21b - "The Lord gave, and the Lord has taken away - blessed be the name of the Lord". And the second is Acts 17:28a - "In Him (Jesus) we live and move and have our being".
Driving home in the silence of the car today after seeing Cindy, I was struck by how small and petty many of the things we worry about in this life are. The truth is that we are incalculably blessed with the very gift of life itself. Our lives may be filled with trials, or difficulties, or things that leave us feeling exhausted and depleted. But we are alive. We have eyes to see the sun. Lungs that fill with oxygen. The opportunity to love people and be happy in their company. The ability to ascertain that their are greater things in than world than ourselves - that a true God exists, and we have the ability to know Him. To be known by Him. To breathe Him.
Many of you have probably heard of read Dylan Thomas' famous poem in which, regarding death, he advises his readers "Do not go gentle into that good night / Rage, rage against the dieing of the light". But for those found in Christ Jesus, we are ushered into this world in peace, and drift out of it in peace. In thinking about Cindy on the drive home, I put on a song called "Sweet Afton" by Nickel Creek. I felt it reflected Cindy well - in her there is no raging against the storm this life can be. Rather, it seems to me that Cindy regards life like the stream in the song - "Flow gently, sweet river."
God is sovereign over all of our lives, down to the tiniest detail. There is peace to be had in that fact, if peace is indeed what we search for when visiting it.
An hour and a half ago I met a man in the cardiac rehab clinic who goes by the nickname "Lucky" - he's survived the Vietnam War (where he was wounded and received a prosthetic leg), two heart attacks, and was one office wall away from being incinerated when the plane hit the Pentagon on September 11th, 2001.
Ten minutes after that I met a middle school girls who has an LVAD and two other mechanized apparatuses wired and tubed into her body keeping her alive - all the machinery requires a two-sided backpack and a belt to carry around.
An hour after that, I ran into an old friend, Cindy, who is a middle-aged woman waiting for a heart. When Elise and I started going to the transplant support group, everyone shunned us because we were so much younger than anyone else in the program at that time. Maybe its not fair to say they shunned us, but they certainly didn't know what to make of us, and therefore ignored us. Cindy and her husband, Dave, were the only ones who reached out to us. Every time we saw them in support group or clinic, they would encourage us, pray for us, and ask us how we were doing - despite Cindy's own situation and obvious suffering. If you've never spent time with someone on a VAD, it would be hard to imagine what I'm talking about.
I was headed to the elevator in the parking garage when out popped Cindy, all smiles and hugs. She told me she'd actually been looking around the hospital for me for months - the last time we saw each other was at a support group where Elise and I were told that if we had children, I wouldn't be able to hold them or snuggle with them. Cindy spent a great deal of time looking for me to tell me what she finally vocalized this morning - "You and Elise can have babies, Greg - just don't take them to daycare. Don't take them to daycare, and you'll be just fine!"
She asked me if I had gotten a heart, and when I told her that I did this past Thanksgiving she literally squealed and jumped for joy. Such effort for someone on a VAD is almost impossible, and yet here she was clapping and hugging me and congratulating me, as if I had somehow accomplished something. She's an incredibly sweet woman, and has always cared deeply about the outlook on mine and Elise's life.
I asked her how she was doing. She told me she had just left Dr. Desai's office, and that he had sorrowfully informed her that her body has become too dependent on the VAD she has lived with for 5 years, that her antibodies where too screwed up, too depleted. Her prognosis and treatment have been altered accordingly - she will never be offered a heart, and she has at most 5 years to live.
I have no idea what to say. She hadn't even told her husband yet - she still might not have, depending on how long her drive home is. It was only then that I recognized the haunted glint in her eyes that she was trying to mask with a big false smile. I know the look, because I gave to many of you leading up to my surgery - its the look I had when I was convinced I was about to die.
She started crying, and after a wordless embrace I let her go - she needed to be with her loved ones more than anything, and alone if that wasn't possible. I remember.
On the way home, I passed a house where a pile of garbage out front was on fire. Apparently it had spontaneously combusted in this heat, and had spread to the landscaping. I stopped to warn the people in the house, and it turns out they had no idea that the fire had started and was spreading. They were able to use a garden hose to put out the blaze. We couldn't even really communicate - there was a language barrier.
Its two o'clock now. This email started with events 90 minutes ago. And I don't know what to think and feel - I'm still in shock over Cindy. I don't even know why I'm writing this, except that I felt God calling me to write it down and share two verses with you. The first is Job 1:21b - "The Lord gave, and the Lord has taken away - blessed be the name of the Lord". And the second is Acts 17:28a - "In Him (Jesus) we live and move and have our being".
Driving home in the silence of the car today after seeing Cindy, I was struck by how small and petty many of the things we worry about in this life are. The truth is that we are incalculably blessed with the very gift of life itself. Our lives may be filled with trials, or difficulties, or things that leave us feeling exhausted and depleted. But we are alive. We have eyes to see the sun. Lungs that fill with oxygen. The opportunity to love people and be happy in their company. The ability to ascertain that their are greater things in than world than ourselves - that a true God exists, and we have the ability to know Him. To be known by Him. To breathe Him.
Many of you have probably heard of read Dylan Thomas' famous poem in which, regarding death, he advises his readers "Do not go gentle into that good night / Rage, rage against the dieing of the light". But for those found in Christ Jesus, we are ushered into this world in peace, and drift out of it in peace. In thinking about Cindy on the drive home, I put on a song called "Sweet Afton" by Nickel Creek. I felt it reflected Cindy well - in her there is no raging against the storm this life can be. Rather, it seems to me that Cindy regards life like the stream in the song - "Flow gently, sweet river."
God is sovereign over all of our lives, down to the tiniest detail. There is peace to be had in that fact, if peace is indeed what we search for when visiting it.
Monday, August 1, 2011
Results
Hey everyone,
We got some good news at the clinic! Greg had a blood test to check for rejection (the Allomap test I've explained in previous posts) and it showed that he still hasn't had any rejection! Praise God! The really awesome part is that he is now completely off of Prednisone. Most transplant recipients never come completely off of it so this is really encouraging. And with all the bad side-effects that steroids can have on one's body over time it's a really great thing.
They did end up putting Greg on a low daily dose of diuretic because they think he is retaining some water. We're not sure why that would be the case but the doctors want to see how he does on the daily dose for a while before taking any other steps. For now we're just glad that they are addressing the problem and Greg's enjoying the benefit of having less excess water on him.
Thanks for praying for us!
Love,
Elise
We got some good news at the clinic! Greg had a blood test to check for rejection (the Allomap test I've explained in previous posts) and it showed that he still hasn't had any rejection! Praise God! The really awesome part is that he is now completely off of Prednisone. Most transplant recipients never come completely off of it so this is really encouraging. And with all the bad side-effects that steroids can have on one's body over time it's a really great thing.
They did end up putting Greg on a low daily dose of diuretic because they think he is retaining some water. We're not sure why that would be the case but the doctors want to see how he does on the daily dose for a while before taking any other steps. For now we're just glad that they are addressing the problem and Greg's enjoying the benefit of having less excess water on him.
Thanks for praying for us!
Love,
Elise
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