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
Monday, August 27, 2012
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
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