Hi everyone,
It has been a really long time since I wrote an update because Greg has been doing really well! He had a biopsy on Monday to check his heart for rejection and they found a cellular rejection level of one (so they don't have to treat it). The best part is that his antibody mediated rejection, which they were trying to treat this summer, has decreased! It is still present, but to less of an extent than it was present this summer. We are praising God for this - he must be at work here because the medical treatments didn't work and now that they aren't treating the rejection, it is actually decreasing!
Next month will be Greg's 2 year anniversary of his transplant, which is crazy to think about. They will be doing a lot of testing just to see how his heart is doing overall in the next few months so we'll let you know as we get results from those tests.
Thanks so much for praying for Greg!
Elise
Friday, October 26, 2012
Monday, August 27, 2012
Update - doing pretty well!
Hey everyone,
Many people have been asking me for an update - so here we go!
Greg is actually doing really well. Despite some unpleasant side effects from his new medications, he's doing much better than he had all summer! That is a huge praise because he's doing better just in time for us to be back on campus with our students for the start of the fall semester!
We recently heard from his nurse coordinator that they had been in contact with some of those world-wide specialists. The specialists thought that everything the transplant team had done up to this point to try to stop the antibody mediation rejection was good. Based on the limited amount of research they have to go on and the dangers associated with further treatments, they recommended not doing any more treatments at this point. Greg is on the medication is supposed to protect his heart from the effects of AMR, so they want to keep him on that since he's tolerating it fairly well.
On September 4th, they will do an echocardiogram of his heart to see how it is functioning. After that, it probably won't be until October that any major treatments occur (or even biopsies) unless the echo shows a problem.
We are very grateful for this break from treatments. In God's wisdom, it has come at the perfect time in the year when we are most busy with our ministry. There are a lot of neat ministry opportunities in the next two months for Greg and we are praying that his health won't prevent them from happening!
Thank you for praying with us!
Elsie
Many people have been asking me for an update - so here we go!
Greg is actually doing really well. Despite some unpleasant side effects from his new medications, he's doing much better than he had all summer! That is a huge praise because he's doing better just in time for us to be back on campus with our students for the start of the fall semester!
We recently heard from his nurse coordinator that they had been in contact with some of those world-wide specialists. The specialists thought that everything the transplant team had done up to this point to try to stop the antibody mediation rejection was good. Based on the limited amount of research they have to go on and the dangers associated with further treatments, they recommended not doing any more treatments at this point. Greg is on the medication is supposed to protect his heart from the effects of AMR, so they want to keep him on that since he's tolerating it fairly well.
On September 4th, they will do an echocardiogram of his heart to see how it is functioning. After that, it probably won't be until October that any major treatments occur (or even biopsies) unless the echo shows a problem.
We are very grateful for this break from treatments. In God's wisdom, it has come at the perfect time in the year when we are most busy with our ministry. There are a lot of neat ministry opportunities in the next two months for Greg and we are praying that his health won't prevent them from happening!
Thank you for praying with us!
Elsie
Tuesday, August 7, 2012
AMR Update
Hi Everyone,
We've been anxiously awaiting news from the hospital - and finally got some information today. On Friday, some of the results came back from Monday's blood test for antibody mediated rejection (AMR) which showed that there was still no change. The clinic was still waiting on the full results and also needed to gather together as a team to discuss Greg's case. For the weekend, Greg's nurse coordinator increased one of his anti-rejection medication just to hopefully prevent the AMR from getting worse.
Finally this afternoon Greg spoke with his coordinator. I'm trying to understand this information which Greg shared with me after he got off the phone,so if it's confusing I apologize in advance!
At this point the transplant team has not come up with a plan for treating Greg's AMR. Since the condition he has is extremely rare, all other instances of patients being treated successfully are anecdotal - they can't ensure that the same treatment would have the same result for Greg. Apparently there are some world expert doctors that see more of these cases (an average of 10 per doctor total) and the clinic is going to contact them to learn about the treatments they've used and if they have been successful.
Thankfully, despite all of the rejection, Greg's heart is still doing really well. This gives the doctors time to formulate a plan instead of rushing into a treatment that they are unsure of.
The danger with the AMR is that it causes coronary artery disease (which can lead to heart attacks and other problems). Coronary artery disease is very common in heart transplant patients, though doctors aren't sure why. To protect Greg's new heart, they need to find a way to prevent or stop any coronary artery disease that the AMR is causing in Greg. Thankfully, there is no sign of Greg's coronary arteries being diseased at this point, though they may be inflamed right now due to the AMR.
For the next two weeks (at least) while the doctors come up with a solid plan, Greg will be on a new medication that halts damage to the coronary arteries. We keep hearing that this is a "miracle drug" and we need a miracle! There is a possibility that he'll be on it long term, depending on his treatment plan and how he tolerates it (10% of patients develop respiratory failure so we'll be watching him closely to make sure his breathing doesn't become labored). Once he's on it, he can decrease the anti-rejection medication that was just increased - which is good because it is really harsh on his stomach.
We are VERY thankful that Greg did not have to be admitted to the hospital this week. It'll probably be a few weeks until we know the next step of the plan, but for now we are praying that this new medication will protect him from coronary artery disease and that it won't have any negative side effects on his breathing.
Its hard to believe that the summer is nearly over and students will be back in a little over a week to help Mason Cru welcome freshmen to the university! This was not the summer we expected to have in any way, but the Lord has taught us both a lot through it. We're learning more about moving forward in the midst of hard circumstances. Although it seemed like Greg's transplant was becoming a distant memory this spring, we are now aware that it really isn't something we're going to be able to "put behind us". So we're trying to keep going and pursuing goals and dreams even when they seem impossible and life keeps getting in the way. We trust that somehow this is all part of God's plan for us - that this isn't chaos - and that Jesus will be with us every step of the way.
Thanks for praying for us - we need and appreciate you,
Elise
We've been anxiously awaiting news from the hospital - and finally got some information today. On Friday, some of the results came back from Monday's blood test for antibody mediated rejection (AMR) which showed that there was still no change. The clinic was still waiting on the full results and also needed to gather together as a team to discuss Greg's case. For the weekend, Greg's nurse coordinator increased one of his anti-rejection medication just to hopefully prevent the AMR from getting worse.
Finally this afternoon Greg spoke with his coordinator. I'm trying to understand this information which Greg shared with me after he got off the phone,so if it's confusing I apologize in advance!
At this point the transplant team has not come up with a plan for treating Greg's AMR. Since the condition he has is extremely rare, all other instances of patients being treated successfully are anecdotal - they can't ensure that the same treatment would have the same result for Greg. Apparently there are some world expert doctors that see more of these cases (an average of 10 per doctor total) and the clinic is going to contact them to learn about the treatments they've used and if they have been successful.
Thankfully, despite all of the rejection, Greg's heart is still doing really well. This gives the doctors time to formulate a plan instead of rushing into a treatment that they are unsure of.
The danger with the AMR is that it causes coronary artery disease (which can lead to heart attacks and other problems). Coronary artery disease is very common in heart transplant patients, though doctors aren't sure why. To protect Greg's new heart, they need to find a way to prevent or stop any coronary artery disease that the AMR is causing in Greg. Thankfully, there is no sign of Greg's coronary arteries being diseased at this point, though they may be inflamed right now due to the AMR.
For the next two weeks (at least) while the doctors come up with a solid plan, Greg will be on a new medication that halts damage to the coronary arteries. We keep hearing that this is a "miracle drug" and we need a miracle! There is a possibility that he'll be on it long term, depending on his treatment plan and how he tolerates it (10% of patients develop respiratory failure so we'll be watching him closely to make sure his breathing doesn't become labored). Once he's on it, he can decrease the anti-rejection medication that was just increased - which is good because it is really harsh on his stomach.
We are VERY thankful that Greg did not have to be admitted to the hospital this week. It'll probably be a few weeks until we know the next step of the plan, but for now we are praying that this new medication will protect him from coronary artery disease and that it won't have any negative side effects on his breathing.
Its hard to believe that the summer is nearly over and students will be back in a little over a week to help Mason Cru welcome freshmen to the university! This was not the summer we expected to have in any way, but the Lord has taught us both a lot through it. We're learning more about moving forward in the midst of hard circumstances. Although it seemed like Greg's transplant was becoming a distant memory this spring, we are now aware that it really isn't something we're going to be able to "put behind us". So we're trying to keep going and pursuing goals and dreams even when they seem impossible and life keeps getting in the way. We trust that somehow this is all part of God's plan for us - that this isn't chaos - and that Jesus will be with us every step of the way.
Thanks for praying for us - we need and appreciate you,
Elise
Tuesday, July 31, 2012
More good news!
Greg's cellular rejection is gone! We received the results late this afternoon and are so glad that his heart is safer! They are still waiting to get the results of yesterdays blood test for AMR to determine the next steps for treating it. But for today we're just thankful that the cellular rejection is gone!
Elise
Elise
Monday, July 30, 2012
More AMR
Hi Everyone,
Greg had his biopsy this morning. We won't know the results until tomorrow, but the good news is that his heart is functioning really well. We're hopeful that this means the cellular rejection is over, but we'll have to wait and see (last time his heart function looked good but he did have cellular rejection).
We did get the results of Tuesdays blood work - Greg still has AMR and the level of the rejection is unchanged since 7/11. He will definitely need to be treated for it, but they have to wait to see about the cellular rejection before moving ahead. There are a variety of options they can choose from for treating him for the AMR so we don't know what to expect at this point. Hopefully we'll know more tomorrow.
We've been anticipating that the AMR would still be there so it's not really a big disappointment or surprise. But we would appreciate your prayers that the doctors would find a treatment that would work well without a lot of negative side effects.
Thanks so much,
Elise
Greg had his biopsy this morning. We won't know the results until tomorrow, but the good news is that his heart is functioning really well. We're hopeful that this means the cellular rejection is over, but we'll have to wait and see (last time his heart function looked good but he did have cellular rejection).
We did get the results of Tuesdays blood work - Greg still has AMR and the level of the rejection is unchanged since 7/11. He will definitely need to be treated for it, but they have to wait to see about the cellular rejection before moving ahead. There are a variety of options they can choose from for treating him for the AMR so we don't know what to expect at this point. Hopefully we'll know more tomorrow.
We've been anticipating that the AMR would still be there so it's not really a big disappointment or surprise. But we would appreciate your prayers that the doctors would find a treatment that would work well without a lot of negative side effects.
Thanks so much,
Elise
Sunday, July 29, 2012
GOOD NEWS!!
We are SO excited to tell you that we just found out that United REFUNDED THE COST OF OUR CANCELED FLIGHTS!!!!! We only lost $130 total in fees through the refund process which is unheard of! It is such a huge relief to have this money back that we spent so long saving for. Hopefully some day we'll actually be able to use it to go to Hawaii, but at least now we have it back in our hands and can use it for whatever God brings into our lives. We just called our parents to share the good news and couldn't wait to put an update on this blog. Thank you to everyone for going to bat with us on this! What a RELIEF!!
We had a really wonderful couple of days away on the Chesapeake Bay this week thanks to friends and family. It was so great to get out of town and forget (we made a pact not to talk about any "real life" stuff) medical stuff, and biopsies, and medical expenses, and the refund we were waiting on (and now have!)... and to not check email or our phones.. It's amazing how much a couple days away can do for your perspective and mindset! We both feel so much more able to face whatever is coming at us next.
Greg had a biopsy on Monday to check for his cellular rejection and they will also take more blood to send to Hopkins to check for AMR. We still don't have any results from his blood test this past Tuesday, but they're probably waiting to tell us when they see us on Monday. As always, I'll let you know what's going on once we have some results!
Thank you again for being a part of this awesome, awesome blessing of our refund!
Love,
Elise
We had a really wonderful couple of days away on the Chesapeake Bay this week thanks to friends and family. It was so great to get out of town and forget (we made a pact not to talk about any "real life" stuff) medical stuff, and biopsies, and medical expenses, and the refund we were waiting on (and now have!)... and to not check email or our phones.. It's amazing how much a couple days away can do for your perspective and mindset! We both feel so much more able to face whatever is coming at us next.
Greg had a biopsy on Monday to check for his cellular rejection and they will also take more blood to send to Hopkins to check for AMR. We still don't have any results from his blood test this past Tuesday, but they're probably waiting to tell us when they see us on Monday. As always, I'll let you know what's going on once we have some results!
Thank you again for being a part of this awesome, awesome blessing of our refund!
Love,
Elise
Saturday, July 28, 2012
GOOD NEWS!!
We are SO excited to tell you that we just found out that United REFUNDED THE COST OF OUR CANCELED FLIGHTS!!!!! We only lost $130 total in fees through the refund process which is unheard of! It is such a huge relief to have this money back that we spent so long saving for. Hopefully some day we'll actually be able to use it to go to Hawaii, but at least now we have it back in our hands and can use it for whatever God brings into our lives. We just called our parents to share the good news and couldn't wait to put an update on this blog. Thank you to everyone for going to bat with us on this! What a RELIEF!!
We had a really wonderful couple of days away on the Chesapeake Bay this week thanks to friends and family. It was so great to get out of town and forget (we made a pact not to talk about any "real life" stuff) medical stuff, and biopsies, and medical expenses, and the refund we were waiting on (and now have!)... and to not check email or our phones.. It's amazing how much a couple days away can do for your perspective and mindset! We both feel so much more able to face whatever is coming at us next.
Greg had a biopsy on Monday to check for his cellular rejection and they will also take more blood to send to Hopkins to check for AMR. We still don't have any results from his blood test this past Tuesday, but they're probably waiting to tell us when they see us on Monday. As always, I'll let you know what's going on once we have some results!
Thank you again for being a part of this awesome, awesome blessing of our refund!
Love,
Elise
We had a really wonderful couple of days away on the Chesapeake Bay this week thanks to friends and family. It was so great to get out of town and forget (we made a pact not to talk about any "real life" stuff) medical stuff, and biopsies, and medical expenses, and the refund we were waiting on (and now have!)... and to not check email or our phones.. It's amazing how much a couple days away can do for your perspective and mindset! We both feel so much more able to face whatever is coming at us next.
Greg had a biopsy on Monday to check for his cellular rejection and they will also take more blood to send to Hopkins to check for AMR. We still don't have any results from his blood test this past Tuesday, but they're probably waiting to tell us when they see us on Monday. As always, I'll let you know what's going on once we have some results!
Thank you again for being a part of this awesome, awesome blessing of our refund!
Love,
Elise
Monday, July 23, 2012
Thanks and an update
Hey everyone,
First of all, thank you SO much to everyone who has signed the petition my mom started at Change.org. It has been AMAZING to see so many people sign it and leave comments. Wow is this the most encouraging thing that has happened in a long time for us! We are blown away by so many of you caring for us and fighting for us to get that refund. Right now, all the paper work has been faxed to United and we're waiting on their response. Honestly, if not for the petition we probably wouldn't have a chance of getting a refund since the definition of terminal is 6 months or less to live - with no chance of treatment. Praise God that is not our situation! But that's the requirement for them to consider a refund request. You are adding so much weight to our case by signing the petition and we are so grateful. And even if we don't get the refund, we will not forget this outpouring of love for us.
Greg had an appointment at the hospital today - just to get his meds checked on and other details like that. We didn't realize they were going to do this, but they took blood today to send to Hopkins to test for AMR (antibody mediated rejection). We should have the results by the end of the week. But since his biopsy is on Monday (checking for the cellular rejection and again taking a blood sample to send to Hopkins), they won't treat him unless the AMR is significantly worse until after they get the results of the biopsy and second blood test.
Overall, he's feeling pretty crummy, but a lot better than he was feeling when he got out of the hospital last week. He seems to be adjusting to being on the prednisone again, and though he still aches in his joints he isn't as shaky and weak. His stomach has been pretty upset the whole week, but they tweaked some of his meds a bit to hopefully make things easier on his stomach.
Emotionally, this has been a tough week for both of us. I actually drove to church Saturday night and then turned around in the parking lot because I was so overwhelmed by the thought of seeing people. Our church is so loving and cares so much about Greg - but showing up without him and just verbalizing what things have been like was too much - I just couldn't do it. Maybe that sounds melodramatic, but right now we're processing a lot of emotions that are hard to talk about. We've been in similar places before and I'm just trusting that the Lord is going to walk us through this as he's done in the past - one step and one day at a time.
Thanks to some family and dear friends, Greg and I have been given the opportunity to go away for a couple nights. We're allowed to be a couple hours away from the hospital (we made sure to have permission) and we're really looking forward to getting away from Fairfax for a few days before the next biopsy. We leave tomorrow and we can't wait!
Thanks again for showing us so much support and love once again. You are a blessing from God.
Love,
Elise
First of all, thank you SO much to everyone who has signed the petition my mom started at Change.org. It has been AMAZING to see so many people sign it and leave comments. Wow is this the most encouraging thing that has happened in a long time for us! We are blown away by so many of you caring for us and fighting for us to get that refund. Right now, all the paper work has been faxed to United and we're waiting on their response. Honestly, if not for the petition we probably wouldn't have a chance of getting a refund since the definition of terminal is 6 months or less to live - with no chance of treatment. Praise God that is not our situation! But that's the requirement for them to consider a refund request. You are adding so much weight to our case by signing the petition and we are so grateful. And even if we don't get the refund, we will not forget this outpouring of love for us.
Greg had an appointment at the hospital today - just to get his meds checked on and other details like that. We didn't realize they were going to do this, but they took blood today to send to Hopkins to test for AMR (antibody mediated rejection). We should have the results by the end of the week. But since his biopsy is on Monday (checking for the cellular rejection and again taking a blood sample to send to Hopkins), they won't treat him unless the AMR is significantly worse until after they get the results of the biopsy and second blood test.
Overall, he's feeling pretty crummy, but a lot better than he was feeling when he got out of the hospital last week. He seems to be adjusting to being on the prednisone again, and though he still aches in his joints he isn't as shaky and weak. His stomach has been pretty upset the whole week, but they tweaked some of his meds a bit to hopefully make things easier on his stomach.
Emotionally, this has been a tough week for both of us. I actually drove to church Saturday night and then turned around in the parking lot because I was so overwhelmed by the thought of seeing people. Our church is so loving and cares so much about Greg - but showing up without him and just verbalizing what things have been like was too much - I just couldn't do it. Maybe that sounds melodramatic, but right now we're processing a lot of emotions that are hard to talk about. We've been in similar places before and I'm just trusting that the Lord is going to walk us through this as he's done in the past - one step and one day at a time.
Thanks to some family and dear friends, Greg and I have been given the opportunity to go away for a couple nights. We're allowed to be a couple hours away from the hospital (we made sure to have permission) and we're really looking forward to getting away from Fairfax for a few days before the next biopsy. We leave tomorrow and we can't wait!
Thanks again for showing us so much support and love once again. You are a blessing from God.
Love,
Elise
Monday, July 16, 2012
we're home
Hey Everyone,
Thanks for keeping up with what's been going on this week and praying for us and encouraging us along the way. We are so sick of all of this stuff - ugh.
We got home from the hospital around 4pm today. Greg's feeling really wiped out physically and we're both emotionally exhausted. A lot was thrown at us over the past few days and we're just trying to deal with everything without succumbing to despair.
They doctors have increased both of Greg's immunosuppressent transplant meds and they've also put him back on prednisone. And since he's on prednisone, he's also on a couple other things to prevent him from an infection common with prednisoe and to protect his stomach from ulcers from all of these meds.
Next Monday we have an appointment with the transplant clinic to discuss Greg's situation and for blood work to make sure his medication levels are okay. At that appointment they will schedule his next biopsy.
We finally got to see one of the coordinators (Carolyn - our favorite from before his transplant) and she gave us a lot more information about what's been going on - what possible causes are, etc. - than we got from the doctor who pretty much wouldn't commit to giving us any specific details about what to expect moving forward. We still don't really understand the different types of rejections and how they are treating them.
What we do know is:
Some sort of infection must have caused the antibody mediated rejection. They've tested him for and ruled out any major infections and it could have been something as simple as a cold (he's had a sore throat a couple times but really hasn't had any major cold at all this year but apparently it could be something very minor that could cause this)
The treatments in June did have a positive affect on the AMR, but it wasn't enough. He may have had a minor amount of cellular rejection beginning around that same time that wasn't detected in the biopsy - and even though he was receiving some steroids in June the dose was too low to stop the rejection from getting worse.
This hospital stay and the mega-doses of steroids he received were primarily targeting the cellular rejection. The hope is that between the steroids, the increase in his anti-rejection drugs, and going on prednisone again, the AMR will also be affected (and prayerfully stopped).
Greg had been at a pretty low level of immunosuppressents so there is a lot of room to increase his doses before running out of treatment options.
Greg is going to be seriously immunosuppressed for awhile - no crowds and he'll be wearing a mask a lot again.
The treatments he had in June were major treatments and if he needs more treatments for the AMR after his next biopsy, they will have to pull out "bigger guns". There seem to be a few options for treating him - but none of this is set-in-stone. Again, it's a new area of medical understanding so there's no clear path in this scenario.
Now, if you can make sense of all of that.. give me a call and explain it to me! We are in so far over our heads and while we want so much to understand every detail it's just not a possibility, which is very frustrating (for me at least).
How are we doing personally? Not well. But neither of us feel like we can "go there" emotionally right now. We're just trying to keep moving forward - and bit by bit working through how this is impacting us inside.
We are so grateful for your prayers.
Elise
Thanks for keeping up with what's been going on this week and praying for us and encouraging us along the way. We are so sick of all of this stuff - ugh.
We got home from the hospital around 4pm today. Greg's feeling really wiped out physically and we're both emotionally exhausted. A lot was thrown at us over the past few days and we're just trying to deal with everything without succumbing to despair.
They doctors have increased both of Greg's immunosuppressent transplant meds and they've also put him back on prednisone. And since he's on prednisone, he's also on a couple other things to prevent him from an infection common with prednisoe and to protect his stomach from ulcers from all of these meds.
Next Monday we have an appointment with the transplant clinic to discuss Greg's situation and for blood work to make sure his medication levels are okay. At that appointment they will schedule his next biopsy.
We finally got to see one of the coordinators (Carolyn - our favorite from before his transplant) and she gave us a lot more information about what's been going on - what possible causes are, etc. - than we got from the doctor who pretty much wouldn't commit to giving us any specific details about what to expect moving forward. We still don't really understand the different types of rejections and how they are treating them.
What we do know is:
Some sort of infection must have caused the antibody mediated rejection. They've tested him for and ruled out any major infections and it could have been something as simple as a cold (he's had a sore throat a couple times but really hasn't had any major cold at all this year but apparently it could be something very minor that could cause this)
The treatments in June did have a positive affect on the AMR, but it wasn't enough. He may have had a minor amount of cellular rejection beginning around that same time that wasn't detected in the biopsy - and even though he was receiving some steroids in June the dose was too low to stop the rejection from getting worse.
This hospital stay and the mega-doses of steroids he received were primarily targeting the cellular rejection. The hope is that between the steroids, the increase in his anti-rejection drugs, and going on prednisone again, the AMR will also be affected (and prayerfully stopped).
Greg had been at a pretty low level of immunosuppressents so there is a lot of room to increase his doses before running out of treatment options.
Greg is going to be seriously immunosuppressed for awhile - no crowds and he'll be wearing a mask a lot again.
The treatments he had in June were major treatments and if he needs more treatments for the AMR after his next biopsy, they will have to pull out "bigger guns". There seem to be a few options for treating him - but none of this is set-in-stone. Again, it's a new area of medical understanding so there's no clear path in this scenario.
Now, if you can make sense of all of that.. give me a call and explain it to me! We are in so far over our heads and while we want so much to understand every detail it's just not a possibility, which is very frustrating (for me at least).
How are we doing personally? Not well. But neither of us feel like we can "go there" emotionally right now. We're just trying to keep moving forward - and bit by bit working through how this is impacting us inside.
We are so grateful for your prayers.
Elise
Sunday, July 15, 2012
Would you please pray for me?
Hey loved ones,
I don't have anything insightful to share right now, just a really serious need for prayer. Two days ago it was finding out that I'm rejecting at both the cellular and antibody levels. Earlier today, my doctor did give us a hard and fast "no" on our Hawaii trip. Just a little bit ago I found out that if this next biopsy doesn't go perfectly, I'm slated for a big hospital stay followed by more chemotherapy. The truth is that I try to be so strong, and really I'm just filled with despair. Lise too.
The Hawaii thing might seem like an ostentatious luxury, and maybe not a big deal that we're missing it - but we've been saving every month for 5 years to do this, and now it looks like the airline is going to keep our money. Actually, while the money is a huge blow, the real hurt comes from the fact that this trip had become our only enduring dream over the last several years. Lots of other dreams have had to be put on hold or let go of for good, but this trip was supposed to be the celebration of my surviving the transplant, combined with celebrating our 5th wedding anniversary (June 24th). It was also the last plan for our summer that hadn't been canceled. Overwhelming disappointment has become far to common an emotion for us.
I feel so sad, and angry, and impotent, and dead inside, so much of the time. I desperately need your prayers, and Elise does too. There seems to be little use in praying for a change of events, or a dramatic turn of health, or other versions of the "things will come out right" prayer - I don't know why, but Jesus has laid a rough path, and it seems the plan is for us to walk it. I think we need prayers for feeling his presence during the journey. Some may argue that there's no way Jesus can "abide" with us and not bring joy, but my experience tells me otherwise. And honestly, I don't think I can reach for joy right now - I just need him to remind me of his presence and provision, and the fact that He has not forgotten us. These are things I know in my head, and I know the verses that teach them. But in my experience, knowledge very seldom comforts, and never rescues.
Even as I write this, I'm aware that many of you who might read it are going through struggles equally or more challenging that what lies before Elise and me right now. I'm very sorry if I've made you feel disrespected or unregarded in your own suffering by writing frankly here. One thing I have learned is that a person's suffering is all their own, and one of the most unique aspects of their relationship with God - after all, no one really does or can completely understand what you're feeling except Him. That's why we need to pray for each other. Even as I ask for prayers, I want to offer to pray for you too. Please write me back if I can - we all walk through darkness at some point or another.
I love you all,
Greg
I don't have anything insightful to share right now, just a really serious need for prayer. Two days ago it was finding out that I'm rejecting at both the cellular and antibody levels. Earlier today, my doctor did give us a hard and fast "no" on our Hawaii trip. Just a little bit ago I found out that if this next biopsy doesn't go perfectly, I'm slated for a big hospital stay followed by more chemotherapy. The truth is that I try to be so strong, and really I'm just filled with despair. Lise too.
The Hawaii thing might seem like an ostentatious luxury, and maybe not a big deal that we're missing it - but we've been saving every month for 5 years to do this, and now it looks like the airline is going to keep our money. Actually, while the money is a huge blow, the real hurt comes from the fact that this trip had become our only enduring dream over the last several years. Lots of other dreams have had to be put on hold or let go of for good, but this trip was supposed to be the celebration of my surviving the transplant, combined with celebrating our 5th wedding anniversary (June 24th). It was also the last plan for our summer that hadn't been canceled. Overwhelming disappointment has become far to common an emotion for us.
I feel so sad, and angry, and impotent, and dead inside, so much of the time. I desperately need your prayers, and Elise does too. There seems to be little use in praying for a change of events, or a dramatic turn of health, or other versions of the "things will come out right" prayer - I don't know why, but Jesus has laid a rough path, and it seems the plan is for us to walk it. I think we need prayers for feeling his presence during the journey. Some may argue that there's no way Jesus can "abide" with us and not bring joy, but my experience tells me otherwise. And honestly, I don't think I can reach for joy right now - I just need him to remind me of his presence and provision, and the fact that He has not forgotten us. These are things I know in my head, and I know the verses that teach them. But in my experience, knowledge very seldom comforts, and never rescues.
Even as I write this, I'm aware that many of you who might read it are going through struggles equally or more challenging that what lies before Elise and me right now. I'm very sorry if I've made you feel disrespected or unregarded in your own suffering by writing frankly here. One thing I have learned is that a person's suffering is all their own, and one of the most unique aspects of their relationship with God - after all, no one really does or can completely understand what you're feeling except Him. That's why we need to pray for each other. Even as I ask for prayers, I want to offer to pray for you too. Please write me back if I can - we all walk through darkness at some point or another.
I love you all,
Greg
Saturday, July 14, 2012
Update
Hey everyone,
I just got back from the hospital (it's midnight) and I'm so exhausted - mentally and emotionally. I don't really have it in me to write an update right now, so I'm just going to copy part of an update Greg's mom sent out today to some friends and family today. Thanks for praying for us.
Here's the update:
Smitty and I arrived at the hospital last night around 12A and surprised Greg with a visit until 2A. We were amazed at how he was handling the devastating news of the day, MANY unsuccessful attempts to start an IV before someone from the ER finally got one in, late medications, beeping equipment with not enough staff around to quiet it, and finally receiving 1000mg of IV prednisone. That won't mean alot to those of you who aren't in the health care profession, but it's a HUGE dose. He will receive that same dose again tonight and tomorrow night. He didn't fall asleep until close to 7AM and then was bothered consistently through the morning for vitals/ medications/ cleaning people/ meals, etc. Despite it all, he has remained polite, grateful and gracious with the staff.... truly amazing. Elise remains his sweet and blessed anchor amidst this crazy chain of events.
Dr. May (one of the transplant doctors) saw him this morning and explained that he will receive these high dose steroids for three days and the hope is that it will not only stop the acute rejection, but also somehow stop the antibody mediated rejection. I truly don't understand all this and we will hopefully gain more information tomorrow. The heart biopsy will not be repeated for two weeks after the last steroid dose. If either type of rejection persists, more treatment will be ordered. The doctor said that he will likely remain on maintenance steroids since he has had repeated episodes of rejection. They are also increasing his regular anti-rejection meds.
Greg asked if it was realistic to think that they might still be able to leave for Hawaii a week from tomorrow and Dr. May said that traveling that far in his present condition, plus being in a plane with recirculated air for that long with his immune system again ravaged would probably not be a good idea. Greg and Elise discussed it and cancelled their trip this afternoon. Aside from losing almost $3000 (since UNITED would not sell him trip insurance due to his "pre-existing condition"), this is a huge loss since it was the last "summer dream" they had for this year. .... and everything else had fallen away as well. One truly sweet blessing is that the owner of the resort they were going to stay at is a Christian and when she heard their story this afternoon, has agreed to refund the $800 down payment they had made for their stay.
I just got back from the hospital (it's midnight) and I'm so exhausted - mentally and emotionally. I don't really have it in me to write an update right now, so I'm just going to copy part of an update Greg's mom sent out today to some friends and family today. Thanks for praying for us.
Here's the update:
Smitty and I arrived at the hospital last night around 12A and surprised Greg with a visit until 2A. We were amazed at how he was handling the devastating news of the day, MANY unsuccessful attempts to start an IV before someone from the ER finally got one in, late medications, beeping equipment with not enough staff around to quiet it, and finally receiving 1000mg of IV prednisone. That won't mean alot to those of you who aren't in the health care profession, but it's a HUGE dose. He will receive that same dose again tonight and tomorrow night. He didn't fall asleep until close to 7AM and then was bothered consistently through the morning for vitals/ medications/ cleaning people/ meals, etc. Despite it all, he has remained polite, grateful and gracious with the staff.... truly amazing. Elise remains his sweet and blessed anchor amidst this crazy chain of events.
Dr. May (one of the transplant doctors) saw him this morning and explained that he will receive these high dose steroids for three days and the hope is that it will not only stop the acute rejection, but also somehow stop the antibody mediated rejection. I truly don't understand all this and we will hopefully gain more information tomorrow. The heart biopsy will not be repeated for two weeks after the last steroid dose. If either type of rejection persists, more treatment will be ordered. The doctor said that he will likely remain on maintenance steroids since he has had repeated episodes of rejection. They are also increasing his regular anti-rejection meds.
Greg asked if it was realistic to think that they might still be able to leave for Hawaii a week from tomorrow and Dr. May said that traveling that far in his present condition, plus being in a plane with recirculated air for that long with his immune system again ravaged would probably not be a good idea. Greg and Elise discussed it and cancelled their trip this afternoon. Aside from losing almost $3000 (since UNITED would not sell him trip insurance due to his "pre-existing condition"), this is a huge loss since it was the last "summer dream" they had for this year. .... and everything else had fallen away as well. One truly sweet blessing is that the owner of the resort they were going to stay at is a Christian and when she heard their story this afternoon, has agreed to refund the $800 down payment they had made for their stay.
Friday, July 13, 2012
Bad News
We're about to go to the hospital so this is going to be brief - we just found out that Greg is having both types of rejection right now. He had a biopsy and blood test and his antibody mediated rejection is still present (though a bit less than last time) and he is a 2R with the other type of rejection.
He'll be in the hospital getting IV steroids for 3 days. Then they'll do a biopsy to see if that has helped either type of rejection. If the antibody mediated rejection is still present after that, he'll have to start again with plasmapheresis, iVIG and chemo.
We don't know if we'll be able to go on our trip at this point (we're supposed to leave on the 22nd) - it depends on how things go and what the doctors advise.
Not what we were hoping for at all and of course we're pretty bummed.
We'd appreciate your prayers,
Elise
He'll be in the hospital getting IV steroids for 3 days. Then they'll do a biopsy to see if that has helped either type of rejection. If the antibody mediated rejection is still present after that, he'll have to start again with plasmapheresis, iVIG and chemo.
We don't know if we'll be able to go on our trip at this point (we're supposed to leave on the 22nd) - it depends on how things go and what the doctors advise.
Not what we were hoping for at all and of course we're pretty bummed.
We'd appreciate your prayers,
Elise
Monday, June 25, 2012
Now we wait
Hey everyone,
This whole process has been kind of confusing for us - not knowing when tests need to be done, etc. But, Greg finally had a chance to talk to the transplant coordinator this morning and we have a solid plan. Unfortunately it means that we have to wait for 2 weeks to find out if his antibody mediated rejection is gone.
He won't have a blood test this week. According to the coordinator, it would be pointless to test his blood at this point because the Rituxan has not had enough time to take effect. They want it to kill off his b-cells and then they need to give it time for his body to produce more b-cells (that hopefully don't remember that they ever recognized his heart as something foreign). So his blood work will be done at the same time of his next biopsy which is Wednesday July 11th.
We're disappointed to have to wait to find out the results, but we're just going to move forward and hold our summer plans very loosely - hoping for, but not in, the best.
On July 22nd, we're hoping to go to Hawaii to celebrate our 5th Wedding Anniversary (which was yesterday!). We've been saving for 5 years to do be able to take a trip for our 5th Anniversary, and when Greg was in the hospital waiting for his transplant, some incredibly loving and generous friends, family, and even strangers, surprised us by helping to make this trip possible (the great part is that Hawaii has a transplant-capable hospital so if we had an emergency, we wouldn't be too far from medical assistance). We've known all along that it's possible we won't be able to go because of Greg's health, but it has given us something fun to look forward to and hope for in the midst of a lot of really bad days. We just really want to get away from Fairfax and hospitals for a while and spend some time having fun and making memories and celebrating that we made it to this anniversary (without Greg's new heart, we never would have)!
So we're praying for a good result on the 11th. We'd love it if you would pray for that too. But even more so, would you pray that we would keep holding Hawaii loosely? Please pray that we don't set our hope on a vacation but that it would remain in Christ who gives us hope beyond this life.
Thanks so much,
Elise
This whole process has been kind of confusing for us - not knowing when tests need to be done, etc. But, Greg finally had a chance to talk to the transplant coordinator this morning and we have a solid plan. Unfortunately it means that we have to wait for 2 weeks to find out if his antibody mediated rejection is gone.
He won't have a blood test this week. According to the coordinator, it would be pointless to test his blood at this point because the Rituxan has not had enough time to take effect. They want it to kill off his b-cells and then they need to give it time for his body to produce more b-cells (that hopefully don't remember that they ever recognized his heart as something foreign). So his blood work will be done at the same time of his next biopsy which is Wednesday July 11th.
We're disappointed to have to wait to find out the results, but we're just going to move forward and hold our summer plans very loosely - hoping for, but not in, the best.
On July 22nd, we're hoping to go to Hawaii to celebrate our 5th Wedding Anniversary (which was yesterday!). We've been saving for 5 years to do be able to take a trip for our 5th Anniversary, and when Greg was in the hospital waiting for his transplant, some incredibly loving and generous friends, family, and even strangers, surprised us by helping to make this trip possible (the great part is that Hawaii has a transplant-capable hospital so if we had an emergency, we wouldn't be too far from medical assistance). We've known all along that it's possible we won't be able to go because of Greg's health, but it has given us something fun to look forward to and hope for in the midst of a lot of really bad days. We just really want to get away from Fairfax and hospitals for a while and spend some time having fun and making memories and celebrating that we made it to this anniversary (without Greg's new heart, we never would have)!
So we're praying for a good result on the 11th. We'd love it if you would pray for that too. But even more so, would you pray that we would keep holding Hawaii loosely? Please pray that we don't set our hope on a vacation but that it would remain in Christ who gives us hope beyond this life.
Thanks so much,
Elise
Saturday, June 23, 2012
Another good treatment!
Hey everyone!
Greg had what we hope was his last chemo treatment yesterday, and it went really well. He didn't develop any headache, and other than being really tired and a little nauseous off and on he's been feeling okay. We're so glad to be done with those treatments and even more thankful that he had two weekends without having to be hospitalized!
The next step in all of this is getting blood work again to see how effective the treatments have been at fixing the rejection. We're waiting to get an appointment, but it seems like he'll be getting the blood work drawn sometime this week. They need to give the Rituxan time to take affect before testing him. He'll also be getting a biopsy in a couple weeks - it depends on when the doctor thinks it would be the right time (with the Rituxan fully in effect).
Greg had been developing really awful insomnia and some nights wasn't even able to fall asleep at all, so he's back on a sleep medication. It has helped SO much for him to get a few nights of good sleep!! He doesn't want to be on it long term, but we are just really glad that he has it right now when he really needs it.
We might not have any updates for a little while, but I'll let you know when we find out how the rejection's going.
Greg is so encouraged to know that he is being prayed for by you - we are grateful for each one of you.
Love,
Elise
Greg had what we hope was his last chemo treatment yesterday, and it went really well. He didn't develop any headache, and other than being really tired and a little nauseous off and on he's been feeling okay. We're so glad to be done with those treatments and even more thankful that he had two weekends without having to be hospitalized!
The next step in all of this is getting blood work again to see how effective the treatments have been at fixing the rejection. We're waiting to get an appointment, but it seems like he'll be getting the blood work drawn sometime this week. They need to give the Rituxan time to take affect before testing him. He'll also be getting a biopsy in a couple weeks - it depends on when the doctor thinks it would be the right time (with the Rituxan fully in effect).
Greg had been developing really awful insomnia and some nights wasn't even able to fall asleep at all, so he's back on a sleep medication. It has helped SO much for him to get a few nights of good sleep!! He doesn't want to be on it long term, but we are just really glad that he has it right now when he really needs it.
We might not have any updates for a little while, but I'll let you know when we find out how the rejection's going.
Greg is so encouraged to know that he is being prayed for by you - we are grateful for each one of you.
Love,
Elise
Saturday, June 16, 2012
No Headache!!
Hey everyone!
I have great news to share! With the three doses of steroid in him, Greg didn't have any headaches from his chemo this week!! It's been well over 24 hours, so we feel confident that he's passed the point of possibly developing a headache. This is a huge relief and makes his next chemo infusion (next Friday at 7:30am) a lot less scary!
Thank you for praying!
Elise
I have great news to share! With the three doses of steroid in him, Greg didn't have any headaches from his chemo this week!! It's been well over 24 hours, so we feel confident that he's passed the point of possibly developing a headache. This is a huge relief and makes his next chemo infusion (next Friday at 7:30am) a lot less scary!
Thank you for praying!
Elise
Wednesday, June 13, 2012
mid-week update
Hi everyone,
We are very much in need of your prayers. Greg is doing well all in all (so much better than over the weekend!) but honestly, he feels pretty awful. He is experiencing a lot of discomfort and just feels like his body is overloaded with chemicals and medicine. Obviously he needs all of those medicines to protect his heart from rejection - but they have a huge impact on how he's feeling. I don't know from personal experience how he's feeling at all, but he describes it as feeling "poisoned" or like he's just being squeezed all over his body. He's felt this before when he's been on huge doses of various medicine so it's not a completely new experience - just a bad one. I'm sure many of you who have undergone serious medical treatments understand what Greg is going through.
He is also understandably worried about his upcoming Rituxan infusion on Friday. Would you please pray that the steroid (he takes it tomorrow, Friday, and Saturday) would be effective at completely eliminating the headaches? Greg said he'd be content with dealing with headaches if they were minor and didn't require him to be hospitalized - he is so so tired of being in the hospital. Each time he's there over night takes a toll on him.
And overall, we're just both feeling very disappointed still about this summer. We have been working so hard for months to move forward and set goals and believe that it is possible for us to make plans and be able to go through with them. This summer represented a fresh start to us in our minds, so the impact of being stuck at home due to rejection and being hospitalized over and over again is pretty big.
And of course, being honest, this just brings up a lot of fears that we have about the future. How will this impact his heart long-term? Will he keep rejecting like this? Will we ever get more than 6 months without a major medical problem? I am working really hard to discipline my mind and not dwell on these worries, and God has certainly taught me a lot about only focusing on today - because today is all I can handle. So I hesitated to share those worries here, but I need to be honest that this is not a cake-walk and we are struggling.
We would really appreciate your prayers for the remainder of the week. I'll let you know how things go on Friday.
Thanks so much,
Elise
We are very much in need of your prayers. Greg is doing well all in all (so much better than over the weekend!) but honestly, he feels pretty awful. He is experiencing a lot of discomfort and just feels like his body is overloaded with chemicals and medicine. Obviously he needs all of those medicines to protect his heart from rejection - but they have a huge impact on how he's feeling. I don't know from personal experience how he's feeling at all, but he describes it as feeling "poisoned" or like he's just being squeezed all over his body. He's felt this before when he's been on huge doses of various medicine so it's not a completely new experience - just a bad one. I'm sure many of you who have undergone serious medical treatments understand what Greg is going through.
He is also understandably worried about his upcoming Rituxan infusion on Friday. Would you please pray that the steroid (he takes it tomorrow, Friday, and Saturday) would be effective at completely eliminating the headaches? Greg said he'd be content with dealing with headaches if they were minor and didn't require him to be hospitalized - he is so so tired of being in the hospital. Each time he's there over night takes a toll on him.
And overall, we're just both feeling very disappointed still about this summer. We have been working so hard for months to move forward and set goals and believe that it is possible for us to make plans and be able to go through with them. This summer represented a fresh start to us in our minds, so the impact of being stuck at home due to rejection and being hospitalized over and over again is pretty big.
And of course, being honest, this just brings up a lot of fears that we have about the future. How will this impact his heart long-term? Will he keep rejecting like this? Will we ever get more than 6 months without a major medical problem? I am working really hard to discipline my mind and not dwell on these worries, and God has certainly taught me a lot about only focusing on today - because today is all I can handle. So I hesitated to share those worries here, but I need to be honest that this is not a cake-walk and we are struggling.
We would really appreciate your prayers for the remainder of the week. I'll let you know how things go on Friday.
Thanks so much,
Elise
Tuesday, June 12, 2012
Home and doing well
I just realized that I never sent you an update on how Greg's been since Saturday!
Greg was able to come home on Sunday evening and he's been doing really well since. He's sleeping a lot because he's so worn out from the whole ordeal he's been through, but he's also more alert and feeling better than he was last week in between treatments.
The doctors have determined that it was the Rituxan (the chemo med) that is causing his awful headaches. They wrote him a prescription for the steroid that has helped stopped the headache both times he was in the hospital - and he'll take it the day before, the day of, and the day after his next two Rituxan treatments. We are really thankful that they have a plan going into this week's treatment, and we're hoping that he'll get through it without having to be admitted to the hospital!
His treatment is at 6:30am Friday, and I know that he would appreciate your prayers that day. The key time seems to be 10-12 hours after the treatment ends, because that is when the headaches developed after the last two treatments. I will let you know how things go this weekend.
Thanks for walking through this with us!
Elise
Greg was able to come home on Sunday evening and he's been doing really well since. He's sleeping a lot because he's so worn out from the whole ordeal he's been through, but he's also more alert and feeling better than he was last week in between treatments.
The doctors have determined that it was the Rituxan (the chemo med) that is causing his awful headaches. They wrote him a prescription for the steroid that has helped stopped the headache both times he was in the hospital - and he'll take it the day before, the day of, and the day after his next two Rituxan treatments. We are really thankful that they have a plan going into this week's treatment, and we're hoping that he'll get through it without having to be admitted to the hospital!
His treatment is at 6:30am Friday, and I know that he would appreciate your prayers that day. The key time seems to be 10-12 hours after the treatment ends, because that is when the headaches developed after the last two treatments. I will let you know how things go this weekend.
Thanks for walking through this with us!
Elise
Saturday, June 9, 2012
Back in the hospital but doing OK
Hi everyone!
Some of you have already heard that Greg is back in the hospital. His chemo treatment went really well yesterday and he was doing great until around 11pm. By 7:30 this morning, he was calling his parents (who were staying at a hotel down the street) and asking them to drive him to the hospital because the pain was so bad. If you know Greg well, you know that he hates going to the hospital (who can blame him) and the fact that he asked to go says a lot about how much he was hurting.
I was in State College and missed a few of Becky and Smitty's phone calls, but by 9:30am I knew what was going on and was on my way back to Fairfax. It took a few hours to get the emergency room doctors/nurses to understand everything that had happened with Greg last week and he almost ended up going in for a spinal tap, but thankfully the neurologist showed up in time and decided that based on his history, it wasn't wise.
By 4pm, Greg had the steroid in him again that was effective last week in the hospital, and after a short nap (lots of meds!) he was already feeling much better! He's now up in the Heart Institute, and has eaten and feels pretty good (no headache!)! They have stopped the anti-seizure medication and started him on some new anti-headache meds in addition to the steroid that has helped so much.
I'm at home right now getting him some stuff for his overnight hospital stay real quick, and soon I'll be heading back to the hospital. I wanted to thank everyone for praying today and I also wanted to assure you that Greg is doing well. It seems like they doctors have decided that these headaches are definitely from the Rituxan (chemo) and now we're just hoping they'll come up with a good plan that will keep him headache free and out of the ER next weekend!
Thanks so much - and for all of the State College people who came to the celebration last night - it was so wonderful to see you and pray with you. Thank you!
Love,
Elise
Some of you have already heard that Greg is back in the hospital. His chemo treatment went really well yesterday and he was doing great until around 11pm. By 7:30 this morning, he was calling his parents (who were staying at a hotel down the street) and asking them to drive him to the hospital because the pain was so bad. If you know Greg well, you know that he hates going to the hospital (who can blame him) and the fact that he asked to go says a lot about how much he was hurting.
I was in State College and missed a few of Becky and Smitty's phone calls, but by 9:30am I knew what was going on and was on my way back to Fairfax. It took a few hours to get the emergency room doctors/nurses to understand everything that had happened with Greg last week and he almost ended up going in for a spinal tap, but thankfully the neurologist showed up in time and decided that based on his history, it wasn't wise.
By 4pm, Greg had the steroid in him again that was effective last week in the hospital, and after a short nap (lots of meds!) he was already feeling much better! He's now up in the Heart Institute, and has eaten and feels pretty good (no headache!)! They have stopped the anti-seizure medication and started him on some new anti-headache meds in addition to the steroid that has helped so much.
I'm at home right now getting him some stuff for his overnight hospital stay real quick, and soon I'll be heading back to the hospital. I wanted to thank everyone for praying today and I also wanted to assure you that Greg is doing well. It seems like they doctors have decided that these headaches are definitely from the Rituxan (chemo) and now we're just hoping they'll come up with a good plan that will keep him headache free and out of the ER next weekend!
Thanks so much - and for all of the State College people who came to the celebration last night - it was so wonderful to see you and pray with you. Thank you!
Love,
Elise
Wednesday, June 6, 2012
State College Ministry Team Party is on!
Hi everyone!
For a while it was looking like I might have to cancel the State College Ministry Team party but now that Greg is home and doing so much better, we are still having it! Unfortunately, Greg won't be able to come, but I would love to see you there! Greg's parents are visiting him for a few days at the end of this week and will be able to take him to the hospital on Friday for his second chemo infusion and will be there in case he needs someone to care for him afterward.
We are so thankful for your support of our ministry and I look forward to thanking you in person!
Elise
For a while it was looking like I might have to cancel the State College Ministry Team party but now that Greg is home and doing so much better, we are still having it! Unfortunately, Greg won't be able to come, but I would love to see you there! Greg's parents are visiting him for a few days at the end of this week and will be able to take him to the hospital on Friday for his second chemo infusion and will be there in case he needs someone to care for him afterward.
We are so thankful for your support of our ministry and I look forward to thanking you in person!
Elise
Tuesday, June 5, 2012
Tuesday
It's so nice to have Greg home! He isn't feeling very well, but the headaches haven't returned which we are very thankful of! He is mostly just worn out - sleeping a lot, feeling hot and cold at the same time, dealing with some stomach-related issues, etc. Thankfully he hasn't had a fever, and all of the symptoms he has now are explained by the medications he is on and the huge ordeal he went through this week!
I had shared some wrong information due to confusion on my part: Greg's 2nd round of Rituxan (the chemo medication) is this Friday at 6am. Greg's parents will be visiting for a couple days and will be with him for that procedure. It should take around 6 hours for the infusion to complete. If the doctors were right and the headaches were a reaction to the IVIG, Greg should have no problems. However, there is a chance that he was reacting to the Rituxan, and if so it will become really obvious this time around. Thankfully he's on the steroid and anti-seizure drug to prevent headaches from forming and to decrease any inflammation in his head so even if he does have the headaches they should be able to keep them under control.
The other thing that I misunderstood is that they will send Greg's blood to Johns Hopkins after all 4 of his Rituxan treatments are complete to determine if they have been effective. So we won't know for another month if this is working. It would be so much easier to know right away but we'll just have to take this a day at a time and trust that God is in control and that he knows exactly what is going on inside of Greg's body.
We probably won't have much news this week, but I will let you know how his infusion goes on Friday.
Thanks!
Elise
I had shared some wrong information due to confusion on my part: Greg's 2nd round of Rituxan (the chemo medication) is this Friday at 6am. Greg's parents will be visiting for a couple days and will be with him for that procedure. It should take around 6 hours for the infusion to complete. If the doctors were right and the headaches were a reaction to the IVIG, Greg should have no problems. However, there is a chance that he was reacting to the Rituxan, and if so it will become really obvious this time around. Thankfully he's on the steroid and anti-seizure drug to prevent headaches from forming and to decrease any inflammation in his head so even if he does have the headaches they should be able to keep them under control.
The other thing that I misunderstood is that they will send Greg's blood to Johns Hopkins after all 4 of his Rituxan treatments are complete to determine if they have been effective. So we won't know for another month if this is working. It would be so much easier to know right away but we'll just have to take this a day at a time and trust that God is in control and that he knows exactly what is going on inside of Greg's body.
We probably won't have much news this week, but I will let you know how his infusion goes on Friday.
Thanks!
Elise
Monday, June 4, 2012
HOME!
Greg is home!!!
He was discharged from the hospital this evening after a headache-free day! The steroid and seizure drug have worked wonders! He'll be on them for a while still, but since they were changed from IV to pill form, he is fine to be on them at home.
He's scheduled to go back to the hospital for his second infusion of the chemo on Sat. morning and we are supposed to follow-up with the transplant team and neurology department within the week.
Mostly, we are just so grateful that he is home and doing so much better! Thank you everyone who prayed for him this week! We definitely needed your prayers, and they were answered with a big "yes"!
Love,
Elise
He was discharged from the hospital this evening after a headache-free day! The steroid and seizure drug have worked wonders! He'll be on them for a while still, but since they were changed from IV to pill form, he is fine to be on them at home.
He's scheduled to go back to the hospital for his second infusion of the chemo on Sat. morning and we are supposed to follow-up with the transplant team and neurology department within the week.
Mostly, we are just so grateful that he is home and doing so much better! Thank you everyone who prayed for him this week! We definitely needed your prayers, and they were answered with a big "yes"!
Love,
Elise
late night progress
Around 10pm last night (Sun), Greg woke up from a long
benedryl-induced nap and was a little hungry! He ate a roll, drank
some gingerale, and we had the most normal, lucid, conversation we've
had in days! He also walked around his room a bit and even sent his
parents a short email before the screen bothered his eyes too much. I
was so encouraged to see him feeling so much more normal! It seems
like God is working through some of these new pain medications!!
I just got back to the hospital and he's in a pretty deep sleep - he
woke up for a minute when I came in but is holding his head and didn't
seem to want to talk out loud - just mouthed some words to me. I'm
not sure how his night went but hopefully things continued to go well.
I'm looking forward to talking with the doctors later today. I'll
keep you posted.
Thanks for praying,
Elise
benedryl-induced nap and was a little hungry! He ate a roll, drank
some gingerale, and we had the most normal, lucid, conversation we've
had in days! He also walked around his room a bit and even sent his
parents a short email before the screen bothered his eyes too much. I
was so encouraged to see him feeling so much more normal! It seems
like God is working through some of these new pain medications!!
I just got back to the hospital and he's in a pretty deep sleep - he
woke up for a minute when I came in but is holding his head and didn't
seem to want to talk out loud - just mouthed some words to me. I'm
not sure how his night went but hopefully things continued to go well.
I'm looking forward to talking with the doctors later today. I'll
keep you posted.
Thanks for praying,
Elise
Sunday, June 3, 2012
Sunday
Hey everyone,
Today went better than yesterday. Greg got some sleep last night, and though he did wake up with a bad headache and also vomit at one point, in general the pain medications are keeping things better under control. Since it is the weekend, not a lot happened today but his doctors did stop by. Dr. May thinks that this is probably aseptic meningitis from the IVIG but he doesn't want to do a spinal tap to diagnose it since they can't treat it even if they do get a positive diagnosis (and there are lots of risks involved with a spinal tap). The neurologist on the other hand thinks a spinal tap could be a good idea, though he doesn't think that this is bacterial meningitis and acknowledges that they couldn't treat it if they did have a positive diagnosis - but he is looking for answers. I'm sure Dr. May, being on the transplant team, will have much more sway than the neurologist.
The neurologist's nurse practitioner told us that it is probably not a migraine, based on the fact that Greg hasn't had migraines in the past and it would be odd for him to start having them in this manner.
The doctors are continuing the steroid that they put him on yesterday and have also added another medication that is typically used for seizures, but can have good results for any brain-related issues. He'll be on the steroid and the new medication (by IV) for a few days). They also started him on IV lasix to pull some of the water off of him because he is swelling and retaining water.
Tomorrow, he will probably get a chest x-ray because they are concerned about his low blood-oxygen levels (though it was 89% tonight, which is the highest it's been so far). Hopefully we'll start seeing the effect of some of these medications tomorrow and his headaches will lessen in severity.
I did find out that they are trying to wean him off of the Dilauded (which is the only thing that has controlled his headaches so far) because it is very strong and highly addictive. Please pray that they would be wise in deciding how to balance weaning him off it it with controlling his pain. The hope is that the steroid and IV med will begin to kick in and control the pain instead.
He has slept a lot today (which is great!) thanks in part to the bendaryl knocking him out. He did get a shower today which was great! He felt pretty awful during it, but was really glad to be clean. He tried eating a bite of a grilled cheese sandwich earlier, but it made him nauseous. Before I go home tonight I'm hoping to at least get a cracker in him, but we'll see. He has no interest in food and gets nauseous easily.
So.. that's a lot of details, but I know that many of you like to pray for specifics, and I appreciate that!
I'm pretty exhausted, but I'm hanging in there - and trying to nap when he naps.
I spent most of today finishing reading "When God Weeps" by Joni Eareckson Tada and Steven Estes, and I just have to take a moment to recommend it to you. It is by far THE BEST book on suffering I've read (closely followed by Affliction by Edith Schaeffer) and I can't recommend it more highly. You may be familiar with Joni Eareckson Tada's story - she became a quadriplegic as a teenager due to a diving accident and has experienced immense suffering since then. She has asked God the hard questions and walked through dark times - and this books is full of incredible truth that she has learned the hard way. There's something about learning about suffering from someone who has really suffered that makes it all so much easier to swallow.
Anyway... enough of my book recommendation. I'll let you know how tomorrow goes. Thank you for praying for Greg. He was really encouraged when I told him how many people are rallying around him in prayer.
Love,
Elise
Today went better than yesterday. Greg got some sleep last night, and though he did wake up with a bad headache and also vomit at one point, in general the pain medications are keeping things better under control. Since it is the weekend, not a lot happened today but his doctors did stop by. Dr. May thinks that this is probably aseptic meningitis from the IVIG but he doesn't want to do a spinal tap to diagnose it since they can't treat it even if they do get a positive diagnosis (and there are lots of risks involved with a spinal tap). The neurologist on the other hand thinks a spinal tap could be a good idea, though he doesn't think that this is bacterial meningitis and acknowledges that they couldn't treat it if they did have a positive diagnosis - but he is looking for answers. I'm sure Dr. May, being on the transplant team, will have much more sway than the neurologist.
The neurologist's nurse practitioner told us that it is probably not a migraine, based on the fact that Greg hasn't had migraines in the past and it would be odd for him to start having them in this manner.
The doctors are continuing the steroid that they put him on yesterday and have also added another medication that is typically used for seizures, but can have good results for any brain-related issues. He'll be on the steroid and the new medication (by IV) for a few days). They also started him on IV lasix to pull some of the water off of him because he is swelling and retaining water.
Tomorrow, he will probably get a chest x-ray because they are concerned about his low blood-oxygen levels (though it was 89% tonight, which is the highest it's been so far). Hopefully we'll start seeing the effect of some of these medications tomorrow and his headaches will lessen in severity.
I did find out that they are trying to wean him off of the Dilauded (which is the only thing that has controlled his headaches so far) because it is very strong and highly addictive. Please pray that they would be wise in deciding how to balance weaning him off it it with controlling his pain. The hope is that the steroid and IV med will begin to kick in and control the pain instead.
He has slept a lot today (which is great!) thanks in part to the bendaryl knocking him out. He did get a shower today which was great! He felt pretty awful during it, but was really glad to be clean. He tried eating a bite of a grilled cheese sandwich earlier, but it made him nauseous. Before I go home tonight I'm hoping to at least get a cracker in him, but we'll see. He has no interest in food and gets nauseous easily.
So.. that's a lot of details, but I know that many of you like to pray for specifics, and I appreciate that!
I'm pretty exhausted, but I'm hanging in there - and trying to nap when he naps.
I spent most of today finishing reading "When God Weeps" by Joni Eareckson Tada and Steven Estes, and I just have to take a moment to recommend it to you. It is by far THE BEST book on suffering I've read (closely followed by Affliction by Edith Schaeffer) and I can't recommend it more highly. You may be familiar with Joni Eareckson Tada's story - she became a quadriplegic as a teenager due to a diving accident and has experienced immense suffering since then. She has asked God the hard questions and walked through dark times - and this books is full of incredible truth that she has learned the hard way. There's something about learning about suffering from someone who has really suffered that makes it all so much easier to swallow.
Anyway... enough of my book recommendation. I'll let you know how tomorrow goes. Thank you for praying for Greg. He was really encouraged when I told him how many people are rallying around him in prayer.
Love,
Elise
Sunday AM
Greg's still having bad headaches this morning. They aren't escalating the way they were Fri and Sat, but the pain meds only seem to be keeping them at bay instead of getting rid of them (his pain is staying around a level 5-6, not peaking to a 10, but not going down to a 2-3 either). They are going to start him on 6 days of steroids to see if that will help.
Saturday, June 2, 2012
hard 2 days
Thank you so much to everyone who's been praying for Greg over the past two days. I didn't have a chance to write an update, but I know some people kept up to date via some emails and Becky's facebook. I'll try to fill you in a bit here.
Things seemed to be going great Thursday and Greg had a really good night with his brother Tim and everything was on track for leaving the hospital Friday. But, Greg woke up around 5am vomiting and suffering from a horrendous headache. That started a whole day of Greg having run-away headaches that were indescribably awful, with chills, vomiting, and a short-term fever. Despite trying a variety of pain killers (including morphine), the doctors couldn't get Greg's pain under control. They ended up doing a CT scan to check his brain and sinuses to make sure that there wasn't anything going on that they weren't aware of in his head. Thankfully, the CT scan was completely clear. But Greg had a horrible 24 hours dealing with the pain.
This morning (Sat) they finally realized that the vomiting was caused by one of the pain killers, so he won't be getting that anymore. After a terrible headache around noon, Greg's nurse and doctors found a combination of medications that are keeping his head-ache at bay.
A neurologist stopped by to examine Greg and give the doctors some ideas on how to manage his headaches. They may try some steroids tomorrow and there are a few tests that they might run on Greg, dependent upon his transplant doctors' permission, to try to determine the cause of these headaches.
At this point, they think that they are likely a side-effect from the IVIG. At first, it seemed like it was from the chemo, but for a variety of reasons they now think it might be from the IVIG. The difficulty is that they can't seem to get ride of them and are only managing the pain on incredibly high levels of pain medicine.
There is also a possibility that Greg has aseptic meningitis (not bacterial) but if that's the case, they can't do anything but keep him comfortable as he deals with the pain. There is also a possibility of inflammation between his brain and head (it's too dark in the room right now for me to see the notes that Tim wrote about that) - they think that based on the location of his headache.
Greg ate 4 saltines and a few bites of chicken noodle soup tonight - his first food in 2 days. I was encouraged to see him do fairly well and actually take a nap for about 2 hours this afternoon when his pain was under control. Right now we're waiting for his medication to kick in and stop a headache that was developing.
It seems unlikely that he'll be going home tomorrow (Sunday) because they still need to figure out why his headaches are so severe and how to keep them under control. I'll keep you posted as I'm able to.
Last night we had a ministry team party in Greg's hometown and I was so encouraged by the love and support that so many people gave us. It was a true blessing to be surrounded by the body of Christ and to pray for Greg together. Words can't describe how grateful we are to every single person who prays for us.
Thanks so much,
Elise
Things seemed to be going great Thursday and Greg had a really good night with his brother Tim and everything was on track for leaving the hospital Friday. But, Greg woke up around 5am vomiting and suffering from a horrendous headache. That started a whole day of Greg having run-away headaches that were indescribably awful, with chills, vomiting, and a short-term fever. Despite trying a variety of pain killers (including morphine), the doctors couldn't get Greg's pain under control. They ended up doing a CT scan to check his brain and sinuses to make sure that there wasn't anything going on that they weren't aware of in his head. Thankfully, the CT scan was completely clear. But Greg had a horrible 24 hours dealing with the pain.
This morning (Sat) they finally realized that the vomiting was caused by one of the pain killers, so he won't be getting that anymore. After a terrible headache around noon, Greg's nurse and doctors found a combination of medications that are keeping his head-ache at bay.
A neurologist stopped by to examine Greg and give the doctors some ideas on how to manage his headaches. They may try some steroids tomorrow and there are a few tests that they might run on Greg, dependent upon his transplant doctors' permission, to try to determine the cause of these headaches.
At this point, they think that they are likely a side-effect from the IVIG. At first, it seemed like it was from the chemo, but for a variety of reasons they now think it might be from the IVIG. The difficulty is that they can't seem to get ride of them and are only managing the pain on incredibly high levels of pain medicine.
There is also a possibility that Greg has aseptic meningitis (not bacterial) but if that's the case, they can't do anything but keep him comfortable as he deals with the pain. There is also a possibility of inflammation between his brain and head (it's too dark in the room right now for me to see the notes that Tim wrote about that) - they think that based on the location of his headache.
Greg ate 4 saltines and a few bites of chicken noodle soup tonight - his first food in 2 days. I was encouraged to see him do fairly well and actually take a nap for about 2 hours this afternoon when his pain was under control. Right now we're waiting for his medication to kick in and stop a headache that was developing.
It seems unlikely that he'll be going home tomorrow (Sunday) because they still need to figure out why his headaches are so severe and how to keep them under control. I'll keep you posted as I'm able to.
Last night we had a ministry team party in Greg's hometown and I was so encouraged by the love and support that so many people gave us. It was a true blessing to be surrounded by the body of Christ and to pray for Greg together. Words can't describe how grateful we are to every single person who prays for us.
Thanks so much,
Elise
Thursday, May 31, 2012
A good day!
Hey everyone,
Today was really good for Greg! They finished up his IVIGs mid-morning and by mid-afternoon he was receiving his chemo. He actually tolerated it really well and aside from feeling a little "flu-ish" when they started administering it, he didn't have any negative symptoms! He is really relieved that it went so well! There's a chance that he'll be going home tomorrow, which would be amazing. His brother Tim is staying with him through Friday night so he'll have some company until I get home Sat mid-day.
The next step is to wait for Inova to send his blood up to Johns Hopkins to see if this treatment was effective. If so, he'll be returning weekly for more chemo. It not, they'll need to do more plasmapheresis too.
Thank you so much for praying for him all of this week! God has been so gracious in getting him through this hospital stay without many problems.
Love,
Elise
Wednesday, May 30, 2012
Wednesday
Hey everyone,
I wanted to give you an update on how today went for Greg.
When I arrived at the hospital around 10am, Greg was already getting his second plasmapheresis treatment. He slept through the whole thing - so exhausted from being up until nearly 5am Tues. night - it's not easy to sleep in a hospital! They ran the procedure slowly to prevent his blood pressure from dropping or him feeling nauseous and everything went well.
Next he had an EKG and ultrasound of his heart - just to make sure everything looked okay. They aren't expecting any problems to show up on either of them, but just wanted to make sure they weren't missing anything.
He slept for a good portion of the early afternoon and then his brother Tim arrived from PA. Tim was definitely the highlight of the day and he kept us both laughing and really helped pass the time.
Around 5pm they started Greg's IVIG (immunoglobulin) drip, but after about 15 minutes he started having a burning and tingling sensation across his chest and arm, along with nausea that ended in him vomiting. They stopped the IVIG treatment, gave him an injection to get rid of his nausea, and called the transplant doctor in. After a lot of discussion, they decided to give Greg a few hours break from the IVIG and then to try again, but this time to administer the IVIG at a slower rate and to give him some benadryl and anti-nausea medication to help him handle the treatment.
Apparently IVIG can cause nausea in 25% of people, though vomiting is not typical. However the doctors don't think it was an allergic reaction to the treatment, which is good because he really needs to be able to have it in order to protect his heart. The doctor explained IVIG as a wide-spread attack on his immune system to knock out anything that is causing problems with his heart.
When I left the hospital tonight, Greg had already been back on the IVIG treatment for around 45 minutes and he wasn't having any problems with it. Hopefully it'll continue that way all night! He'll be on the drip for around 12 hours, and then the only thing left for this hospital stay is the chemo drug that attacks B cells.
Originally they thought he'd go home sometime on Friday, but because of the IVIG treatment having to be stopped and then administered more slowly, he might end up being in the hospital for an extra day.
We found out that by the time he leaves the hospital he will be as immunosuppressed as he was immediately following his transplant and he'll have to go back to the precautions he had at that time (no crowded places, mask out in public, etc.). He'll be that way for at least 4 weeks afterward while he goes in for continued treatments with the chemo drug.
Hopefully all of that makes sense - I'm nearly falling asleep as I type so I might not be writing very clearly.
Please pray for Greg as he continues to get the IVIG treatment and especially for when he begins the chemo drug (which might be Thursday). I leave for Pittsburgh tomorrow morning and Greg's brother, Tim, will be keeping him company in the hospital. We're really grateful that there's someone here to be with him while I'm away for 2 nights.
Thanks for your prayers,
Elise
I wanted to give you an update on how today went for Greg.
When I arrived at the hospital around 10am, Greg was already getting his second plasmapheresis treatment. He slept through the whole thing - so exhausted from being up until nearly 5am Tues. night - it's not easy to sleep in a hospital! They ran the procedure slowly to prevent his blood pressure from dropping or him feeling nauseous and everything went well.
Next he had an EKG and ultrasound of his heart - just to make sure everything looked okay. They aren't expecting any problems to show up on either of them, but just wanted to make sure they weren't missing anything.
He slept for a good portion of the early afternoon and then his brother Tim arrived from PA. Tim was definitely the highlight of the day and he kept us both laughing and really helped pass the time.
Around 5pm they started Greg's IVIG (immunoglobulin) drip, but after about 15 minutes he started having a burning and tingling sensation across his chest and arm, along with nausea that ended in him vomiting. They stopped the IVIG treatment, gave him an injection to get rid of his nausea, and called the transplant doctor in. After a lot of discussion, they decided to give Greg a few hours break from the IVIG and then to try again, but this time to administer the IVIG at a slower rate and to give him some benadryl and anti-nausea medication to help him handle the treatment.
Apparently IVIG can cause nausea in 25% of people, though vomiting is not typical. However the doctors don't think it was an allergic reaction to the treatment, which is good because he really needs to be able to have it in order to protect his heart. The doctor explained IVIG as a wide-spread attack on his immune system to knock out anything that is causing problems with his heart.
When I left the hospital tonight, Greg had already been back on the IVIG treatment for around 45 minutes and he wasn't having any problems with it. Hopefully it'll continue that way all night! He'll be on the drip for around 12 hours, and then the only thing left for this hospital stay is the chemo drug that attacks B cells.
Originally they thought he'd go home sometime on Friday, but because of the IVIG treatment having to be stopped and then administered more slowly, he might end up being in the hospital for an extra day.
We found out that by the time he leaves the hospital he will be as immunosuppressed as he was immediately following his transplant and he'll have to go back to the precautions he had at that time (no crowded places, mask out in public, etc.). He'll be that way for at least 4 weeks afterward while he goes in for continued treatments with the chemo drug.
Hopefully all of that makes sense - I'm nearly falling asleep as I type so I might not be writing very clearly.
Please pray for Greg as he continues to get the IVIG treatment and especially for when he begins the chemo drug (which might be Thursday). I leave for Pittsburgh tomorrow morning and Greg's brother, Tim, will be keeping him company in the hospital. We're really grateful that there's someone here to be with him while I'm away for 2 nights.
Thanks for your prayers,
Elise
Tuesday, May 29, 2012
First treatment done
Today has gone pretty well over all! Greg had his Quinton catheter put in his neck this morning about an hour after we arrived at the hospital. The Quinton catheter is put in the same site that they use for his heart catherizations, but this catheter also sticks up all the way to his ear (with two different tubes coming out). The anesthesia wasn't effective at making him sleepy during the procedure (he's built up quite a tolerance over the past few years) so he was very aware of everything they were doing - and that darn catheter has been giving him lots of pain ever since. He had plasmapheresis done this afternoon for a few hours (they send his blood through a machine that cleans out the antibodies before sending his blood back into his body. It wasn't a great experience, but he got through it okay and they handled the symptoms he felt during the procedure really quickly.
Greg finally (a couple minutes ago) got some pain medication to help with that some hopefully it'll kick in pretty soon.
Tomorrow he'll go through another treatment of plasmapheresis, and then he'll be started on the chemotherapy medication that will knock out his B-Cells. Then he'll have a treatment of the immunoglobulins before he can go home (which they're saying will be Friday at the earliest). After all of these treatments, they will send blood back up to Johns Hopkins to see if the treatments were effective, and that will determine what they do next. He'll definitely be going back weekly for the chemo medication, but he might need additional plasmapheresis if this wasn't completely effective.
Aside from being in a lot of pain, Greg is handling this really well. Please pray that he would be able to get good sleep tonight and that he would not experience a lot of bad side-effects tomorrow.
Thanks,
Elise
Greg finally (a couple minutes ago) got some pain medication to help with that some hopefully it'll kick in pretty soon.
Tomorrow he'll go through another treatment of plasmapheresis, and then he'll be started on the chemotherapy medication that will knock out his B-Cells. Then he'll have a treatment of the immunoglobulins before he can go home (which they're saying will be Friday at the earliest). After all of these treatments, they will send blood back up to Johns Hopkins to see if the treatments were effective, and that will determine what they do next. He'll definitely be going back weekly for the chemo medication, but he might need additional plasmapheresis if this wasn't completely effective.
Aside from being in a lot of pain, Greg is handling this really well. Please pray that he would be able to get good sleep tonight and that he would not experience a lot of bad side-effects tomorrow.
Thanks,
Elise
Saturday, May 26, 2012
Procedures start on Tuesday
Hey everyone,
Thank you for all of the encouraging phone calls and emails. We are so blessed by your prayers and love. We're adjusting to this news a bit better each day - please keep praying for us in the midst of the disappointment.
I wanted you to know that Greg's procedures start at 10:30 Tuesday morning. I'm sure he'd appreciate prayers during that time as he gets some testing, and they put the port in and begin to get rid of those B cells.
We are really grateful for your love and support this week!
Elise
Thank you for all of the encouraging phone calls and emails. We are so blessed by your prayers and love. We're adjusting to this news a bit better each day - please keep praying for us in the midst of the disappointment.
I wanted you to know that Greg's procedures start at 10:30 Tuesday morning. I'm sure he'd appreciate prayers during that time as he gets some testing, and they put the port in and begin to get rid of those B cells.
We are really grateful for your love and support this week!
Elise
Friday, May 25, 2012
The upcoming Ministry Partner Team parties are still on!
Hi everyone,
This is Greg writing - Lise usually handles the blog these days, and its really good to be communicating directly with you after such along break. I think we recently shared some particularly defeating news: I've developed something called antibody-mediated rejection, and I've got some unpleasant medical stuff coming up.
Part of the reason that this news is so wearying is that it really felt like we were moving on from all of this over the last couple months. We were so excited to be heading up to Pennsylvania for visits to our hometowns, and then moving on to Florida for our summer placement of taking seminary classes.
Because of the hospital stay I have coming up (I'll be getting something called a "port" in my chest so they can do some special plasma treatments and B-cell removal), I won't be able to come to PA. I really, really was looking forward to giving many of you a hug and hearing about your lives and thanking you for everything you've done in ours - you are all like precious family to us, and it would have been so good to see you face to face.
After the port treatments, I start 4 weeks of a special type of chemotherapy that targets B-cells instead of T-cells. For that reason, both Lise and I can't attend our classes in Florida. Its a little bewildering how much a 5-minute phone call can screw things up.
A huge part of what I've been learning and growing in this spring is seeing Jesus and His plan and mercy even in troubled times - and I have to say that even though Elise and I feel like we got knocked down again right now, there are a lot of really precious mercies wound up in this circumstance. First and foremost, there's no immediate threat on my life - they found it and are treating it quickly enough that I should be able to avoid any terminal fears involved. Its not going to be fun, but fortunately its one of those things where you just grin and bare it and then, in all likelihood, get up and get back on track again.
Secondly, we are still very much going ahead with the Ministry Partner Team parties. I won't be able to attend (I'll physically be in the hospital during both the Zelienople and State College gatherings), but Elise will still be there, and we would still love and be blessed by your company. So if you were planning on coming, do still please know that you're welcome at Harmony-Zelienople United Methodist Church, and/or Dan and Rosemary's family ranch in State College.
In addition to food and spending time together, we would also like to add an element of a prayer gathering to each celebration. There will be some centerpieces out to help you know what to pray for, and it would mean the world to us if you would consider joining with some fellow team members to pray that God would either fix this quickly or give us the faith to get back up again. This may be a familiar prayer by now, but it continues to be a much-needed one ; )
Finally, Elise and I are putting together some really nice packets that we'll have at the dinner, and we would ask you to pray over whether God is leading you to take one as you go (they'll just be sitting out, so please don't feel compelled to take them if you don't want to). The packets will have a bunch of information in them regarding our ministry - we want to ask you if you would be willing to refer us and our ministry to a friend or loved one who might be interested in joining with us as a Ministry Partner. Many of you will recall us needing to build a team of ministry partners before we were allowed to report to assignment here at Mason - this would be the same process, and we promise to exercise the same respect and care as we always do when asking someone to consider joining our team.
The reason we find ourselves needing to raise support at this time revolves around the government's new healthcare legislation, which dictates that the members of our organization can now only reimburse $10,000 of medical expenses/year. While this works for most families, it doesn't even come close for me. In the past, through your extraordinary generosity, Elise and I have been able to remain on staff and able to afford the medical care I need. We now find ourselves in a situation where we need to raise $2,000/month in new monthly ministry partner donations (which we can then arrange to access as "additional salary" for specific medical expenses - it's heavily taxed, but we can still access it, which is the key). The parties in Zelienople and State College are NOT about our financial needs - rather, they are a celebration of all that God has done through you here in Northern Virginia. I just wanted to ask if you would grab a packet or two and pray over them - and I wouldn't ask unless the need to get started on reaching this goal wasn't great. Both Elise and I love you so much and don't want to presume upon you - please know and believe that.
All that aside, please come and eat delicious food, talk with my lovely wife, and see some of the slides and displays Elise is making to showcase what Jesus has done through you here at George Mason University. You all truly are God's hands and feet.
All my love, Greg
This is Greg writing - Lise usually handles the blog these days, and its really good to be communicating directly with you after such along break. I think we recently shared some particularly defeating news: I've developed something called antibody-mediated rejection, and I've got some unpleasant medical stuff coming up.
Part of the reason that this news is so wearying is that it really felt like we were moving on from all of this over the last couple months. We were so excited to be heading up to Pennsylvania for visits to our hometowns, and then moving on to Florida for our summer placement of taking seminary classes.
Because of the hospital stay I have coming up (I'll be getting something called a "port" in my chest so they can do some special plasma treatments and B-cell removal), I won't be able to come to PA. I really, really was looking forward to giving many of you a hug and hearing about your lives and thanking you for everything you've done in ours - you are all like precious family to us, and it would have been so good to see you face to face.
After the port treatments, I start 4 weeks of a special type of chemotherapy that targets B-cells instead of T-cells. For that reason, both Lise and I can't attend our classes in Florida. Its a little bewildering how much a 5-minute phone call can screw things up.
A huge part of what I've been learning and growing in this spring is seeing Jesus and His plan and mercy even in troubled times - and I have to say that even though Elise and I feel like we got knocked down again right now, there are a lot of really precious mercies wound up in this circumstance. First and foremost, there's no immediate threat on my life - they found it and are treating it quickly enough that I should be able to avoid any terminal fears involved. Its not going to be fun, but fortunately its one of those things where you just grin and bare it and then, in all likelihood, get up and get back on track again.
Secondly, we are still very much going ahead with the Ministry Partner Team parties. I won't be able to attend (I'll physically be in the hospital during both the Zelienople and State College gatherings), but Elise will still be there, and we would still love and be blessed by your company. So if you were planning on coming, do still please know that you're welcome at Harmony-Zelienople United Methodist Church, and/or Dan and Rosemary's family ranch in State College.
In addition to food and spending time together, we would also like to add an element of a prayer gathering to each celebration. There will be some centerpieces out to help you know what to pray for, and it would mean the world to us if you would consider joining with some fellow team members to pray that God would either fix this quickly or give us the faith to get back up again. This may be a familiar prayer by now, but it continues to be a much-needed one ; )
Finally, Elise and I are putting together some really nice packets that we'll have at the dinner, and we would ask you to pray over whether God is leading you to take one as you go (they'll just be sitting out, so please don't feel compelled to take them if you don't want to). The packets will have a bunch of information in them regarding our ministry - we want to ask you if you would be willing to refer us and our ministry to a friend or loved one who might be interested in joining with us as a Ministry Partner. Many of you will recall us needing to build a team of ministry partners before we were allowed to report to assignment here at Mason - this would be the same process, and we promise to exercise the same respect and care as we always do when asking someone to consider joining our team.
The reason we find ourselves needing to raise support at this time revolves around the government's new healthcare legislation, which dictates that the members of our organization can now only reimburse $10,000 of medical expenses/year. While this works for most families, it doesn't even come close for me. In the past, through your extraordinary generosity, Elise and I have been able to remain on staff and able to afford the medical care I need. We now find ourselves in a situation where we need to raise $2,000/month in new monthly ministry partner donations (which we can then arrange to access as "additional salary" for specific medical expenses - it's heavily taxed, but we can still access it, which is the key). The parties in Zelienople and State College are NOT about our financial needs - rather, they are a celebration of all that God has done through you here in Northern Virginia. I just wanted to ask if you would grab a packet or two and pray over them - and I wouldn't ask unless the need to get started on reaching this goal wasn't great. Both Elise and I love you so much and don't want to presume upon you - please know and believe that.
All that aside, please come and eat delicious food, talk with my lovely wife, and see some of the slides and displays Elise is making to showcase what Jesus has done through you here at George Mason University. You all truly are God's hands and feet.
All my love, Greg
Thursday, May 24, 2012
Big Disappointment
Well, we got the results from Greg's blood work this evening. He has
Asymptomatic Antibody Mediated Rejection, which means that his body is
producing antibodies against his donor heart. This is a different
type of rejection than the acute rejection he had in December where
white blood cells were attacking his heart as a foreign object. The
good news is that they caught it early enough that his heart hasn't
been damaged at all (his biopsy results were fantastic aside from
this) and it isn't something that is life threatening. But, if it
goes unchecked it can cause coronary artery disease- and that's not
something that we want to deal with.
Greg will be in the hospital for 5 days next week being treated -
they'll use a dialysis-like machine to remove the B-cells and then
they'll administer a B-cell attacking medicine - all of which will
hopefully stop the rejection. After he leaves the hospital from his
first treatment, he'll be going back every 7 days for at least 4 weeks
for additional treatments of the medication. Since this is a medicine
that is used in chemotherapy, he might be feeling pretty bad and stay
overnight during the additional treatments, but he also might react to
it well and be able to go home the same day.
It's a pretty complicated ordeal, but only within the last few years
have they really understood the implications of antibody production in
heart transplant recipients and so we are very blessed that they know
what to do and that they are able to prevent long-term problems from
this type of rejection.
The biggest disappointment is that we've had to cancel taking our
seminary courses for Cru in Florida this summer. We were really
looking forward to it and after months of not getting our hopes up
that we'd really be able to go, were finally getting excited. This is
also impacting the trips we were taking to PA at the end of this month
to see family and our ministry team. We are re-working some plans so
that I can hopefully go for a couple days, though Greg won't be able
to go. Of course this is another big disappointment for both of us.
Right now we're just both feeling extremely disappointed. We'd
appreciate prayers for us as we emotionally process this and try to
rearrange our summer arrangements, and also prayers for Greg as he
begins his treatments. We don't know exactly when he'll be at the
hospital next week yet, but I'll keep you updated on how he's doing
when things get started.
Thank you for your prayers,
Elise
Asymptomatic Antibody Mediated Rejection, which means that his body is
producing antibodies against his donor heart. This is a different
type of rejection than the acute rejection he had in December where
white blood cells were attacking his heart as a foreign object. The
good news is that they caught it early enough that his heart hasn't
been damaged at all (his biopsy results were fantastic aside from
this) and it isn't something that is life threatening. But, if it
goes unchecked it can cause coronary artery disease- and that's not
something that we want to deal with.
Greg will be in the hospital for 5 days next week being treated -
they'll use a dialysis-like machine to remove the B-cells and then
they'll administer a B-cell attacking medicine - all of which will
hopefully stop the rejection. After he leaves the hospital from his
first treatment, he'll be going back every 7 days for at least 4 weeks
for additional treatments of the medication. Since this is a medicine
that is used in chemotherapy, he might be feeling pretty bad and stay
overnight during the additional treatments, but he also might react to
it well and be able to go home the same day.
It's a pretty complicated ordeal, but only within the last few years
have they really understood the implications of antibody production in
heart transplant recipients and so we are very blessed that they know
what to do and that they are able to prevent long-term problems from
this type of rejection.
The biggest disappointment is that we've had to cancel taking our
seminary courses for Cru in Florida this summer. We were really
looking forward to it and after months of not getting our hopes up
that we'd really be able to go, were finally getting excited. This is
also impacting the trips we were taking to PA at the end of this month
to see family and our ministry team. We are re-working some plans so
that I can hopefully go for a couple days, though Greg won't be able
to go. Of course this is another big disappointment for both of us.
Right now we're just both feeling extremely disappointed. We'd
appreciate prayers for us as we emotionally process this and try to
rearrange our summer arrangements, and also prayers for Greg as he
begins his treatments. We don't know exactly when he'll be at the
hospital next week yet, but I'll keep you updated on how he's doing
when things get started.
Thank you for your prayers,
Elise
Tuesday, May 22, 2012
No news yet
Hey everyone,
You haven't heard from me with any results from Greg's blood work yet,
because we haven't heard anything. They sent his blood to Johns
Hopkins because the test that they needed to perform can't be done at
INOVA Fairfax. We'll definitely let you know as soon as we hear any
news.
Thanks,
Elise
You haven't heard from me with any results from Greg's blood work yet,
because we haven't heard anything. They sent his blood to Johns
Hopkins because the test that they needed to perform can't be done at
INOVA Fairfax. We'll definitely let you know as soon as we hear any
news.
Thanks,
Elise
Friday, May 18, 2012
Pretty good news!
Greg's transplant coordinator just called to let us know his biopsy
was a 1 - which means he doesn't have to be treated for rejection and
they don't have to make any changes to his anti-rejection medications.
Something else did show up on his blood work that is concerning, so
he'll be going in on Monday to have more blood work done.
I only have a very vague understanding of the issue with the blood
work and I don't want to say anything that isn't true (or do research
on the internet because that always is full of worst-case scenarios!),
but the coordinator is not panicked at all, and she didn't tell Greg
to come back from his camping trip that he's on (his annual trip to
Cook Forest with his dad), so those are all good signs.
When we get some more answers, I'll let you know. In the meantime
please pray that God would give me a sense of peace throughout the
weekend and that I would be diligent in not letting my mind stray or
worry about things I don't understand and can't control. Also, please
pray that whatever is showing up on his blood work would miraculously
resolve or have a simple medical solution.
Greg is feeling great and he looks great - so those are great signs!
Thanks so much,
Elise
was a 1 - which means he doesn't have to be treated for rejection and
they don't have to make any changes to his anti-rejection medications.
Something else did show up on his blood work that is concerning, so
he'll be going in on Monday to have more blood work done.
I only have a very vague understanding of the issue with the blood
work and I don't want to say anything that isn't true (or do research
on the internet because that always is full of worst-case scenarios!),
but the coordinator is not panicked at all, and she didn't tell Greg
to come back from his camping trip that he's on (his annual trip to
Cook Forest with his dad), so those are all good signs.
When we get some more answers, I'll let you know. In the meantime
please pray that God would give me a sense of peace throughout the
weekend and that I would be diligent in not letting my mind stray or
worry about things I don't understand and can't control. Also, please
pray that whatever is showing up on his blood work would miraculously
resolve or have a simple medical solution.
Greg is feeling great and he looks great - so those are great signs!
Thanks so much,
Elise
Wednesday, May 16, 2012
Biopsy today - so far so good!
Hey everyone,
Wow, its been a while since I last wrote an update! Things have been
going very well lately. Greg has been doing great physically, and at
his appointment this morning the transplant team said he looked great!
His heart pressures were "perfect" according to Dr. Desai, and the
nurse coordinator was really pleased by everything else. We'll find
out if there's any rejection tomorrow when they get the biopsy
results, but with everything else looking so good it is unlikely.
We've been able to be focused on ministry and other life stuff lately
and have barely had to think about Greg's health at all (aside from
the normal post-biopsy stuff that is pretty routine for us at this
point). A few people have asked me lately if it seems like Greg's
transplant was a long time ago or just yesterday, and it made me
realize that it's not something that I think about that often now.
I'm sure it's very different for Greg, but for me it seems like a
really long time ago in some ways - almost like a surreal other
lifetime. And that blows me away, because there was a long time when
we couldn't picture there ever being a time in the future when we
weren't totally consumed by Greg's heart. I am so thankful for how
the Lord has carried us through all of this, and amazed at how he is a
healer of not just our physical hearts, but our spiritual hearts too.
I'll let you know what we find out tomorrow about the biopsy!
Elise
Wow, its been a while since I last wrote an update! Things have been
going very well lately. Greg has been doing great physically, and at
his appointment this morning the transplant team said he looked great!
His heart pressures were "perfect" according to Dr. Desai, and the
nurse coordinator was really pleased by everything else. We'll find
out if there's any rejection tomorrow when they get the biopsy
results, but with everything else looking so good it is unlikely.
We've been able to be focused on ministry and other life stuff lately
and have barely had to think about Greg's health at all (aside from
the normal post-biopsy stuff that is pretty routine for us at this
point). A few people have asked me lately if it seems like Greg's
transplant was a long time ago or just yesterday, and it made me
realize that it's not something that I think about that often now.
I'm sure it's very different for Greg, but for me it seems like a
really long time ago in some ways - almost like a surreal other
lifetime. And that blows me away, because there was a long time when
we couldn't picture there ever being a time in the future when we
weren't totally consumed by Greg's heart. I am so thankful for how
the Lord has carried us through all of this, and amazed at how he is a
healer of not just our physical hearts, but our spiritual hearts too.
I'll let you know what we find out tomorrow about the biopsy!
Elise
Monday, February 27, 2012
Opportunity to listen to Greg share his story
Hey everyone!
This weekend, Greg had the opportunity to share his medical story and
how it has affected his faith in God at our church during the Saturday
night and Sunday morning services. Despite being really sick with a
cold (this is his first time getting a "regular" sickness since his
transplant and it's strange to see how much worse something like a
cold is to someone on immunosuppressants), he was able to go ahead
with his messages. We are thankful for everyone who prayed for him to
have a strong voice and to be able to get through both services
without any coughing fits up front!
To be honest, I was dreading him speaking a bit. Not because I didn't
want him to, but because it is always scary to be vulnerable and to be
known. It feels safer sometimes to be anonymous - I like going places
where people don't know my struggles with depression and anxiety, and
don't wonder how I'm working through my doubts and fears. And the
idea of our story being out in the open to even more people scared me.
But, I know that God gave us this story for a purpose and that it
would be selfish to hide behind anonymity when He might be able to use
something from our story for His glory. Paul wrote in 2 Corinthians
12:8-10, "Three times I pleaded with the Lord to take it away from me.
But he said to me, "My grace is sufficient for you, for my power is
made perfect in weakness." Therefore I will boast all the more gladly
about my weaknesses, so that Christ's power may rest on me. That is
why, for Christ's sake, I delight in weaknesses, in insults, in
hardships, in persecutions, in difficulties. For when I am weak, then
I am strong". I can only guess what Paul was asking God to take away
from him, but I've certainly pleaded for Him to take all of this away
from us many times - and He keeps pointing me back to these verses and
reminding me to bring my weaknesses out into the open so that others
can see His strength.
All that being said, here is the link for Greg's message. It has some
descriptions of medical procedures that might be too graphic for
little ears, so please use discretion. I hope that you see God
shining through our weaknesses and our story.
http://www.barcroft.org/sermon-podcast (message title Adventures and
Wanderings)
Love,
Elise
Monday, February 20, 2012
Another Good Biopsy!
Hi everyone!
I haven't posted lately because Greg has been doing very well since the rejection scare around Christmas! He had another biopsy last week to check for rejection and it came back as a 1. This is great news because his immune system hasn't been completely wiped out, and it's not attacking his heart - so there is a good balance. The doctors have increased some of his medications however, to increase the protection that he does have (if it was a 0 they wouldn't have increased anything).
He also found out that he does not need to wear the mask as often anymore. He still needs to in certain especially dangerous situations but he's very thankful to have it off in the student union when talking to students!
Thank you for praying that his heart would continue to be protected from rejection. We are very grateful to have a team of people who are committed to praying for us!
Love,
Elise
I haven't posted lately because Greg has been doing very well since the rejection scare around Christmas! He had another biopsy last week to check for rejection and it came back as a 1. This is great news because his immune system hasn't been completely wiped out, and it's not attacking his heart - so there is a good balance. The doctors have increased some of his medications however, to increase the protection that he does have (if it was a 0 they wouldn't have increased anything).
He also found out that he does not need to wear the mask as often anymore. He still needs to in certain especially dangerous situations but he's very thankful to have it off in the student union when talking to students!
Thank you for praying that his heart would continue to be protected from rejection. We are very grateful to have a team of people who are committed to praying for us!
Love,
Elise
Tuesday, January 10, 2012
Rejection over!
We just found out that Greg's biopsy was a 1, which means that he's not rejecting anymore! The lab technician even took the time to write on the report that he looks "soo much better than last time"! Woohoo!! We are so thrilled and thankful!
He'll be on an increased dose of diuretics to help control his blood pressure and reduce some of the fluid he has on him right now, and then he'll be going back in 6 weeks for another biopsy. Since the last round of steroids worked he won't need to be on any long-term dose of steroids and they don't have to change his treatment plan.
Thank you for your prayers! And thank God for healing his heart!!
He'll be on an increased dose of diuretics to help control his blood pressure and reduce some of the fluid he has on him right now, and then he'll be going back in 6 weeks for another biopsy. Since the last round of steroids worked he won't need to be on any long-term dose of steroids and they don't have to change his treatment plan.
Thank you for your prayers! And thank God for healing his heart!!
Tuesday, January 3, 2012
Good news
We haven't heard from the transplant coordinator this week, so we're assuming that what she said is true: no news is good news. Which probably means that the rest of the blood tests came back with normal results, and that the scare over Greg's liver was caused by the steroids he was given and not some sort of liver damage or failure. We are VERY glad about this and so thankful to all of you who have been praying that his liver would be fine.
He's been feeling a little better and stronger each day since Saturday. We've done some walking outside and he's needed to stop less often for breaks, so his stamina is improving! Hopefully this is a good sign that he's not still having rejection and that the swelling of his heart from the rejection is going away. He has another biopsy on Monday, so by some time on Tuesday we should have the results. I'll let you know what we find out.
Thank you for your prayers!
Elise
He's been feeling a little better and stronger each day since Saturday. We've done some walking outside and he's needed to stop less often for breaks, so his stamina is improving! Hopefully this is a good sign that he's not still having rejection and that the swelling of his heart from the rejection is going away. He has another biopsy on Monday, so by some time on Tuesday we should have the results. I'll let you know what we find out.
Thank you for your prayers!
Elise
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