Hi everyone,
I have been meaning to write an update for weeks now but to be honest I've enjoyed the "normal" feeling of not writing updates. In so many ways life feels more normal for us than it has in a very long time - we are both back doing ministry with students (including leading a Mason Cru summer Bible study which we love), we visited our families in Pennsylvania, and we even have been able to spend some time relaxing with dear friends. They are all such normal things and yet it had been such a long time since we'd been able to enjoy them! We also celebrated our 4th Anniversary on June 24th and we had a lot to celebrate! Just being able to be together for another anniversary is a miracle and we are so thankful to God for giving Greg a new heart.
Being busy with ministry and not finding the time to sit down to write a blog post has felt great - yet we appreciate your prayers and support so much and we do want to keep you more up to date on how Greg is doing than we have recently.
Overall Greg has been doing really well! Greg's last heart biopsy came back as a zero on the rejection scale - he's gone almost 8 months without any rejection! Praise God! Today was his best "performance" at rehab yet - he spent nearly 40 minutes on cardio machines- but there are still ups and downs. In fact Tuesday's rehab was his worst "performance" yet in rehab - only being able to spend around 15 minutes on cardio. He only has a few more sessions of cardiac rehab left and then he'll be transitioning to keeping up the same exercise routine on his own at home. Thankfully our apartment complex has a small workout facility with most of the machines he's accustomed to and some light weights. We plan to do the workouts together 3x a week so that he's not alone during them.
Greg has had some issues with medication side effects recently. A new medication that the doctors added (a blood pressure medication that they've found protects transplanted hearts from pre-mature arterial disease - which is a common problem) was making him extremely fatigued, causing a lot of back and shoulder pain, and giving him headaches. Thankfully he was able to stop the medication and has had some relief from the symptoms. He's still feeling very worn out though and has decided to scale back on his non-rehab activities for a while in order to give his body some much needed rest. In fact he's asleep right now as I type this which is very atypical for him these days.
Another issue is that he seems to be putting on a lot of extra fluid again. It has been a very frustrating process because the rehab facility and the transplant doctors are not in agreement about what desis causing the weight-gain. Throughout Greg's transplant journey doctors have misdiagnosed his fluid retention as regular weight gain due to the fact that Greg tends to retain water around his organs instead of in his ankles and feet like most doctors assume. We've had some pretty bad experiences with this misdiagnosis in the past so its been tough emotionally feeling like its happening again. Thankfully, Greg was allowed to take one diuretic pill early this week and he dropped 7lbs so it seems pretty clear that there is some water retention happening. Greg has an appointment at the clinic on Monday and we plan on discussing this at length with the doctor and coordinator. There is a possibility that they will be running some more extensive tests to look for fluid in places less obvious than his ankles - which we're really hoping they will do. We'd appreciate your prayers that they would be willing to look into the problem more carefully and that they'd find out what is causing the weight gain and not just make some guesses based on what they think "should" be happening.
I think that about sums up what's been going on lately. I will try to do a better job keeping you up to date as we (hopefully) get some results!
Love,
Elise
Friday, July 22, 2011
Thursday, May 12, 2011
Rehab is going well!
Hi everyone!
Greg is in his third week of cardiac rehab and it's going very well. It's challenging but they are very cautious and have started him out slowly. Eventually, as he gets stronger and more accustomed to his heart, they hope to have him do 45 of cardio (on the treadmill and stationary bike) followed by some light weight training and stretching. That's a long way from where he's at now, but it's exciting to see him making progress each session and feeling good. He's also supposed to exercise on the days he isn't at rehab (he goes on Monday, Tuesday, and Friday) so we've been going on long walks outside on his off days.
On his way to rehab he visited the 3rd floor nurses that took care of him during the months before his transplant and for a week afterward, and they were so excited to see him. They said he was looking really good for being almost 6 months out.
Last week he had another biopsy and it came back with a level 1 rejection, so they didn't need to adjust any of his medications! The best part is that next month he will be able to do the blood test (called Allomap) that checks for rejection instead of going through another biopsy! He also had an echocardiogram, EKG, and chest x-ray last week, and everything came back looking great. His heart is doing really, really well, praise God! While I was in the waiting room during these tests, many different nurses and staff people that know Greg told me that he looks so much better than they've ever seen him - they were so encouraged at the improvement and we were too! It's comforting to hear the people who know what to expect post-transplant say that he's doing well and he's right on schedule with his recovery.
He still has some good days and bad days - and there've been bumps along the road these past few weeks, but all in all he is doing so well and we are so thankful! Thank you for all of your prayers and encouragement - they help a lot, especially on the bad days.
Love,
Elise
Greg is in his third week of cardiac rehab and it's going very well. It's challenging but they are very cautious and have started him out slowly. Eventually, as he gets stronger and more accustomed to his heart, they hope to have him do 45 of cardio (on the treadmill and stationary bike) followed by some light weight training and stretching. That's a long way from where he's at now, but it's exciting to see him making progress each session and feeling good. He's also supposed to exercise on the days he isn't at rehab (he goes on Monday, Tuesday, and Friday) so we've been going on long walks outside on his off days.
On his way to rehab he visited the 3rd floor nurses that took care of him during the months before his transplant and for a week afterward, and they were so excited to see him. They said he was looking really good for being almost 6 months out.
Last week he had another biopsy and it came back with a level 1 rejection, so they didn't need to adjust any of his medications! The best part is that next month he will be able to do the blood test (called Allomap) that checks for rejection instead of going through another biopsy! He also had an echocardiogram, EKG, and chest x-ray last week, and everything came back looking great. His heart is doing really, really well, praise God! While I was in the waiting room during these tests, many different nurses and staff people that know Greg told me that he looks so much better than they've ever seen him - they were so encouraged at the improvement and we were too! It's comforting to hear the people who know what to expect post-transplant say that he's doing well and he's right on schedule with his recovery.
He still has some good days and bad days - and there've been bumps along the road these past few weeks, but all in all he is doing so well and we are so thankful! Thank you for all of your prayers and encouragement - they help a lot, especially on the bad days.
Love,
Elise
Wednesday, April 27, 2011
First day of Cardiac Rehab - please pray
Hi everyone!
Today is Greg's first day of cardiac rehab! It's an exciting benchmark but it's also pretty intimidating for Greg and we'd really appreciate your prayers for him today. We'll be there from 2- 5:30pm - getting a tour, and learning about the plan they have for his rehab. After today's initial session he will be going to rehab three times each week for twelve weeks. Not only will they be working on his strength and getting him used to the way his new heart works, they'll also be helping him work through fears he has of getting his heart rate up. For years he wasn't allowed to or able to exercise because of the risk of having a cardiac arrest, so this is a big change and will take some time to get used to.
The last few weeks have been a roller coaster for us. Greg went off of four of his medications (sleep aids and pain pills) that he's been on for a long time. After he stopped them, his body went through withdrawl which made him really sick and almost landed him in the ER twice. He's still dealing with some lingering withdrawl symptoms but he's feeling much better than he initially did. The exciting part is that he's thinking much clearer and has a lot more energy now that he's off the medications! It's almost like he was in a fog mentally for a long time (his psychiatrist thinks he was being over-medicated) and he's coming out of it! The difficult part is that the sleep aids had some anti-depressant functions and he's having a tough time emotionally - really having to constantly fight to not slip into depression. Last week he saw his therapist for the first time since the transplant and he'll be seeing him weekly from now on, so that has really helped him with the difficult transition off the medications. Would you pray for this? The sudden medication changes have left him emotionally fragile, and we are so reliant on the Lord to give him strength and hope.
Love,
Elise
Today is Greg's first day of cardiac rehab! It's an exciting benchmark but it's also pretty intimidating for Greg and we'd really appreciate your prayers for him today. We'll be there from 2- 5:30pm - getting a tour, and learning about the plan they have for his rehab. After today's initial session he will be going to rehab three times each week for twelve weeks. Not only will they be working on his strength and getting him used to the way his new heart works, they'll also be helping him work through fears he has of getting his heart rate up. For years he wasn't allowed to or able to exercise because of the risk of having a cardiac arrest, so this is a big change and will take some time to get used to.
The last few weeks have been a roller coaster for us. Greg went off of four of his medications (sleep aids and pain pills) that he's been on for a long time. After he stopped them, his body went through withdrawl which made him really sick and almost landed him in the ER twice. He's still dealing with some lingering withdrawl symptoms but he's feeling much better than he initially did. The exciting part is that he's thinking much clearer and has a lot more energy now that he's off the medications! It's almost like he was in a fog mentally for a long time (his psychiatrist thinks he was being over-medicated) and he's coming out of it! The difficult part is that the sleep aids had some anti-depressant functions and he's having a tough time emotionally - really having to constantly fight to not slip into depression. Last week he saw his therapist for the first time since the transplant and he'll be seeing him weekly from now on, so that has really helped him with the difficult transition off the medications. Would you pray for this? The sudden medication changes have left him emotionally fragile, and we are so reliant on the Lord to give him strength and hope.
Love,
Elise
Tuesday, April 12, 2011
IT'S GREG'S BIRTHDAY!!
Hey Everyone!
Today is a really special day - Greg's 26th Birthday! We are so thankful that he is here and able to celebrate - there were many times that we didn't think he'd be alive today! The past for years have been filled with miraculous events that brought Greg to today - we are so blessed.
Thank you for all of your prayers, encouragement, support, and love - Jesus has used you in ways you can't imagine to keep Greg (and me!) going through dark times.
Love,
Elise
P.S. Quick update - Greg is doing well! His Prograf level has been fairly steady so far though we are waiting to hear results from this morning's blood test. He seems to be recuperating well from the difficulties of the last month and is regaining his strength and stamina. Hopefully cardiac rehab will begin next week!
Today is a really special day - Greg's 26th Birthday! We are so thankful that he is here and able to celebrate - there were many times that we didn't think he'd be alive today! The past for years have been filled with miraculous events that brought Greg to today - we are so blessed.
Thank you for all of your prayers, encouragement, support, and love - Jesus has used you in ways you can't imagine to keep Greg (and me!) going through dark times.
Love,
Elise
P.S. Quick update - Greg is doing well! His Prograf level has been fairly steady so far though we are waiting to hear results from this morning's blood test. He seems to be recuperating well from the difficulties of the last month and is regaining his strength and stamina. Hopefully cardiac rehab will begin next week!
Tuesday, April 5, 2011
Fantastic News
Hey Everyone,
Things keep getting better for Greg! He had another biopsy yesterday morning and it came back as a level 1 rejection!!! We are thrilled to hear this because we were a bit nervous with all the medication changes and problems he had this month. With the level 1 rejection he doesn't need any treatment and they are reducing his prednisone dose again, which is always a good thing!
He's continued to feel better and better since the weekend. He's still sleeping a lot, but it's more like 10 or 12 hours instead of 17-19 hours. And when he's awake he's much more alert and has better stamina - able to go up the stairs to our apartment without needing to take breaks. It seems like the incredibly high amount of Prograf in his blood was the culprit that was making him so horribly sick, weak, and exhausted. They've continued to decrease his Prograf because it was still a little too high in his blood work from yesterday - and they'll recheck it next Tuesday.
On Thursday he has an appointment with an Ear/Nose/Throat doctor to follow-up on the dizziness and ringing in his ears. The next goal is for him to start cardiac rehab (it was put on hold due to the Prograf issues but in a week or so his stamina should have improved enough for him to get started).
We are so grateful that the Lord brought us through this bump in the road! Thank you for being there for us throughout it!
Love,
Elise
Things keep getting better for Greg! He had another biopsy yesterday morning and it came back as a level 1 rejection!!! We are thrilled to hear this because we were a bit nervous with all the medication changes and problems he had this month. With the level 1 rejection he doesn't need any treatment and they are reducing his prednisone dose again, which is always a good thing!
He's continued to feel better and better since the weekend. He's still sleeping a lot, but it's more like 10 or 12 hours instead of 17-19 hours. And when he's awake he's much more alert and has better stamina - able to go up the stairs to our apartment without needing to take breaks. It seems like the incredibly high amount of Prograf in his blood was the culprit that was making him so horribly sick, weak, and exhausted. They've continued to decrease his Prograf because it was still a little too high in his blood work from yesterday - and they'll recheck it next Tuesday.
On Thursday he has an appointment with an Ear/Nose/Throat doctor to follow-up on the dizziness and ringing in his ears. The next goal is for him to start cardiac rehab (it was put on hold due to the Prograf issues but in a week or so his stamina should have improved enough for him to get started).
We are so grateful that the Lord brought us through this bump in the road! Thank you for being there for us throughout it!
Love,
Elise
Friday, April 1, 2011
Prograf Level Update
Greg's coordinator just called to say that his Prograf level dropped from 36 (Wednesday morning) to 14 this morning! No wonder he was more alert yesterday! It's still too high but just slightly - they want it between 10-12. So he'll continue to hold off on taking Prograf until Saturday evening, at which point he'll start on a lower dose than he was previously taking. They will test his blood again Monday and make any necessary adjustments.
Thankfully Greg has a young, healthy, undamaged liver so his body was able to get rid of the excess Prograf quickly! He's wiped out today and has slept the whole day so far except for going in for the blood test, but I'm interested to see how he's feeling once he wakes up. We'll let you know how things go Monday. Hopefully things will continue to calm down and he'll keep doing better and better!
Love,
Elise
Thankfully Greg has a young, healthy, undamaged liver so his body was able to get rid of the excess Prograf quickly! He's wiped out today and has slept the whole day so far except for going in for the blood test, but I'm interested to see how he's feeling once he wakes up. We'll let you know how things go Monday. Hopefully things will continue to calm down and he'll keep doing better and better!
Love,
Elise
Thursday, March 31, 2011
Getting Better =)
Hey Everyone,
Good news tonight! Today was a much better day for Greg! He's been awake since 3pm and still has some energy left which is incredible - and he's in a lot less pain and hasn't had a headache! It is amazing the change that's taken place in 24 hrs. It definitely seems like the doctors were right about the Prograf level being a big player in him feeling so awful. Tomorrow morning he gets a blood test so they can check the level and determine what to do with his Prograf over the weekend. Then they'll check it again on Monday when he goes in for the biopsy. If his WBCs are too low tomorrow they are going to wait on the shot to give him a break from all these side effects - in that case they'll just give him the shot Monday as well.
Thank you so much for praying for Greg. It's so good to be able to write you with good news again!
Have a great night,
Elise
Good news tonight! Today was a much better day for Greg! He's been awake since 3pm and still has some energy left which is incredible - and he's in a lot less pain and hasn't had a headache! It is amazing the change that's taken place in 24 hrs. It definitely seems like the doctors were right about the Prograf level being a big player in him feeling so awful. Tomorrow morning he gets a blood test so they can check the level and determine what to do with his Prograf over the weekend. Then they'll check it again on Monday when he goes in for the biopsy. If his WBCs are too low tomorrow they are going to wait on the shot to give him a break from all these side effects - in that case they'll just give him the shot Monday as well.
Thank you so much for praying for Greg. It's so good to be able to write you with good news again!
Have a great night,
Elise
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