We just heard from the transplant coordinator that Greg's biopsy on Friday came back with a level 1 rejection! We are so glad to have this good news because Greg was pretty sick over the past two weeks. Last Monday we went to the hospital for him to have multiple blood tests and an abdominal x-ray because the doctors were concerned that he may have developed an infection. Thankfully, all the tests came back negative and the doctors determined that he must have been dealing with one of the stomach bugs going around our area. Since he's immunosuppressed, any thing that he catches will make him sicker and keep him sicker longer than it would for most people.
He's feeling much better now though, and he's glad that Friday's biopsy results mean another decrease in the amount of prednisone he takes each day. The trouble he was having with seeing things and confusion at night has completely gone away - a huge answer to prayer! On Thursday we'll go back to the hospital for more blood work and for an echocardiogram and EKG (standard procedures that are done at 8 weeks past transplant).
We'll keep you posted as things develop, but for the most part no news is good news! We're at a point in his recovery where we'll be going to the hospital less and having less tests done, but he's not yet ready to start rehab, so it's mostly a waiting game - waiting on his strength to return and his immune system to build up so that its safe for him to spend time outside of our home (something that he is increasingly eager for!).
Thanks for continuing to pray for us during his recovery!
Love,
Elise
Monday, January 24, 2011
Tuesday, January 11, 2011
Biopsy result
Hi everyone,
We got good news on Greg's latest biopsy! He had level 1 rejection which doesn't require any additional treatment and the doctors were able to decrease his prednisone dose again. Thank you for praying for this!
Unfortunately, we've both been feeling pretty crummy and exhausted over the past few days. We think we might've caught some sort of stomach bug (or rather I must've caught it while grocery shopping and passed it to him). We're watching Greg carefully to make sure he doesn't develop a fever and so far so good. On Thursday he has a clinic appointment so they will be able to check him out thoroughly to make sure he doesn't need any treatment. In the meantime we're resting and staying hydrated as best as we can.
Greg will be having a stress test the last week of February, the results of which they'll use to determine if he's ready to begin cardiac rehab. Once he starts he'll have rehab a few times each week for 3 months. The physical therapy he had at home was just to get him to the point where he was able to be safe and independent at home - strengthening his legs so that he could climb stairs and get in and out of chairs on his own. Due to the fact that the nerves still need to grow back from his body to his new heart (which typically begins by 3 months post transplant), the doctors don't want him getting his heart rate elevated from exercise until he learns to work with his new heart in rehab.
In the meantime, the biggest concerns continue to be if he will develop rejection or an infection. The first year, but especially the first three months, is the most dangerous time for rejection. Its awesome that he hasn't had any significant rejection yet, we are praising God for that, but it doesn't necessarily mean he won't have any in the future. Almost every patient develops some rejection - some people have lots and some people only have a small amount. Even if he does have rejection, its not something to panic about. As long as it is treated promptly (and they do the biopsies to catch it early on) it should not damage the heart.
Would you please pray that our stomach-related symptoms would go away and that we'd have some energy? I (Elise) am trying to incorporate some normalcy into our lives again (For example, I went to the dentist today! It sounds silly but it was a big step towards normal life for me.) but feeling sick makes taking care of Greg more tiring and I don't feel like I have anything left over.
Thanks so much for your prayers and encouragement!
Love,
Elise
We got good news on Greg's latest biopsy! He had level 1 rejection which doesn't require any additional treatment and the doctors were able to decrease his prednisone dose again. Thank you for praying for this!
Unfortunately, we've both been feeling pretty crummy and exhausted over the past few days. We think we might've caught some sort of stomach bug (or rather I must've caught it while grocery shopping and passed it to him). We're watching Greg carefully to make sure he doesn't develop a fever and so far so good. On Thursday he has a clinic appointment so they will be able to check him out thoroughly to make sure he doesn't need any treatment. In the meantime we're resting and staying hydrated as best as we can.
Greg will be having a stress test the last week of February, the results of which they'll use to determine if he's ready to begin cardiac rehab. Once he starts he'll have rehab a few times each week for 3 months. The physical therapy he had at home was just to get him to the point where he was able to be safe and independent at home - strengthening his legs so that he could climb stairs and get in and out of chairs on his own. Due to the fact that the nerves still need to grow back from his body to his new heart (which typically begins by 3 months post transplant), the doctors don't want him getting his heart rate elevated from exercise until he learns to work with his new heart in rehab.
In the meantime, the biggest concerns continue to be if he will develop rejection or an infection. The first year, but especially the first three months, is the most dangerous time for rejection. Its awesome that he hasn't had any significant rejection yet, we are praising God for that, but it doesn't necessarily mean he won't have any in the future. Almost every patient develops some rejection - some people have lots and some people only have a small amount. Even if he does have rejection, its not something to panic about. As long as it is treated promptly (and they do the biopsies to catch it early on) it should not damage the heart.
Would you please pray that our stomach-related symptoms would go away and that we'd have some energy? I (Elise) am trying to incorporate some normalcy into our lives again (For example, I went to the dentist today! It sounds silly but it was a big step towards normal life for me.) but feeling sick makes taking care of Greg more tiring and I don't feel like I have anything left over.
Thanks so much for your prayers and encouragement!
Love,
Elise
Friday, January 7, 2011
Progress!
Hi Everyone!
I'm excited to share with you that as of this week Greg has officially "graduated" from at-home nursing and physical therapy! He reached the goals that they had set for his recovery and did so much sooner than they expected! It is truly amazing to see how much stronger he is now than when he first came home - its like he is a totally different person.
This morning we went to the hospital for another biopsy. We don't know the results yet and won't hear from the doctor until Monday unless there is an emergency issue (such as severe rejection- level 3) that they need to treat immediately. However we would be surprised if that was the case because Greg is doing so well. His incisions have healed very nicely, his swelling is significantly less everywhere, his heart sounds great and his blood pressure and temperature continue to stay within the safe zone. All in all his recovery is going so well. Depending on his blood work and biopsy results they may decrease his steroid doses again which would be wonderful. He is still having the same mental side effects each night from the steroids so another decrease would be really helpful.
One of our favorite nurses, Bernadette, took care of Greg this morning and she couldn't believe how strong he is. It wasn't too long ago that she and 3 other nurses had to help Greg get from the wheelchair into our car - but today he walked right in and out of the hospital on his own power!
I'll let you know when we hear the results from today's hospital visit - but I wanted to share with you the exciting news of Greg's progress!
Happy New Year,
Elise
I'm excited to share with you that as of this week Greg has officially "graduated" from at-home nursing and physical therapy! He reached the goals that they had set for his recovery and did so much sooner than they expected! It is truly amazing to see how much stronger he is now than when he first came home - its like he is a totally different person.
This morning we went to the hospital for another biopsy. We don't know the results yet and won't hear from the doctor until Monday unless there is an emergency issue (such as severe rejection- level 3) that they need to treat immediately. However we would be surprised if that was the case because Greg is doing so well. His incisions have healed very nicely, his swelling is significantly less everywhere, his heart sounds great and his blood pressure and temperature continue to stay within the safe zone. All in all his recovery is going so well. Depending on his blood work and biopsy results they may decrease his steroid doses again which would be wonderful. He is still having the same mental side effects each night from the steroids so another decrease would be really helpful.
One of our favorite nurses, Bernadette, took care of Greg this morning and she couldn't believe how strong he is. It wasn't too long ago that she and 3 other nurses had to help Greg get from the wheelchair into our car - but today he walked right in and out of the hospital on his own power!
I'll let you know when we hear the results from today's hospital visit - but I wanted to share with you the exciting news of Greg's progress!
Happy New Year,
Elise
Monday, December 27, 2010
Biopsy result - low rejection!
Hi everyone,
Merry Christmas! We hope that you had a wonderful time celebrating Christ's birth with family and friends. As you can imagine, Christmas was even more meaningful for us this year. We never thought that Greg would be home for Christmas this year- there were times when we even wondered if he'd be here at all. But God continues to pour out blessings upon us and Greg was home and feeling good on Christmas! What an incredible gift to be given a second chance at life!
Last Thursday Greg had another biopsy to check for rejection. We were worried that the biopsy would show level 2 or 3 rejection because then he would've been admitted to the hospital for treatment on Christmas Eve. However, the hospital didn't call us until today and we were told that the biopsy showed level 1 rejection! Level 1 is a safe level that does not require treatment and enables the doctors to decrease Greg's prednisone doses. Its amazing that after having his heart for a full month, Greg hasn't had any significant rejection!
We're grateful that his prednisone doses are decreasing because it has the worst side effects of all of his medications. Greg is still having a lot of confusion at night, waking up not knowing where he is or what's happening, and seeing things that aren't there. We are figuring out some ways to deal with the side effects better (such as making sure I stay in the same room with him as soon as the confusion begins) but it is very difficult for him. Please pray that the prednisone doses would continue to decrease and that the side effects would decrease even faster.
Greg continues to get stronger each day, though some days feel like set backs. Through his hard work at physical therapy, he is now able to walk up and down a flight of stairs without assistance (amazing!). He spends less time sleeping each day and is gaining more and more independence by being able to dress himself, make some of his own food, etc. He's also breathing easier because the diuretics he is on have taken off significant amounts of the extra fluid. He still has a lot of visible swelling but it is finally going down!
It'll still be 2 more months until Greg is allowed to leave the apartment for anything other than doctor's appointments or to have visitors other than the at-home nurse and physical therapist. Since his prednisone levels are still high he is very immunosuppressed and it is too risky to expose him to anyone or anything that is not absolutely necessary. His immediate family was going to visit us for Christmas but couldn't come because one of them ended up getting sick on Christmas morning. We're hoping that they'll be able to come down for New Years, but we have to make sure there is no chance that any of them are sick or have been around anyone who is sick! We'll push back our Christmas celebration with them as long as is necessary - this is a really special Christmas for his whole family and we want to celebrate... safely! Aside from their visit, we are under strict orders to keep all other visitors away for now.
As you can see, Greg's recovery is going better than we ever imagined it would. We know we have a long road ahead of us but it is so encouraging to see Greg getting stronger and stronger instead of sicker and sicker. His new heart is a precious miracle and a reminder to us that we have a good and loving Father in Heaven.
Love,
Elise
Merry Christmas! We hope that you had a wonderful time celebrating Christ's birth with family and friends. As you can imagine, Christmas was even more meaningful for us this year. We never thought that Greg would be home for Christmas this year- there were times when we even wondered if he'd be here at all. But God continues to pour out blessings upon us and Greg was home and feeling good on Christmas! What an incredible gift to be given a second chance at life!
Last Thursday Greg had another biopsy to check for rejection. We were worried that the biopsy would show level 2 or 3 rejection because then he would've been admitted to the hospital for treatment on Christmas Eve. However, the hospital didn't call us until today and we were told that the biopsy showed level 1 rejection! Level 1 is a safe level that does not require treatment and enables the doctors to decrease Greg's prednisone doses. Its amazing that after having his heart for a full month, Greg hasn't had any significant rejection!
We're grateful that his prednisone doses are decreasing because it has the worst side effects of all of his medications. Greg is still having a lot of confusion at night, waking up not knowing where he is or what's happening, and seeing things that aren't there. We are figuring out some ways to deal with the side effects better (such as making sure I stay in the same room with him as soon as the confusion begins) but it is very difficult for him. Please pray that the prednisone doses would continue to decrease and that the side effects would decrease even faster.
Greg continues to get stronger each day, though some days feel like set backs. Through his hard work at physical therapy, he is now able to walk up and down a flight of stairs without assistance (amazing!). He spends less time sleeping each day and is gaining more and more independence by being able to dress himself, make some of his own food, etc. He's also breathing easier because the diuretics he is on have taken off significant amounts of the extra fluid. He still has a lot of visible swelling but it is finally going down!
It'll still be 2 more months until Greg is allowed to leave the apartment for anything other than doctor's appointments or to have visitors other than the at-home nurse and physical therapist. Since his prednisone levels are still high he is very immunosuppressed and it is too risky to expose him to anyone or anything that is not absolutely necessary. His immediate family was going to visit us for Christmas but couldn't come because one of them ended up getting sick on Christmas morning. We're hoping that they'll be able to come down for New Years, but we have to make sure there is no chance that any of them are sick or have been around anyone who is sick! We'll push back our Christmas celebration with them as long as is necessary - this is a really special Christmas for his whole family and we want to celebrate... safely! Aside from their visit, we are under strict orders to keep all other visitors away for now.
As you can see, Greg's recovery is going better than we ever imagined it would. We know we have a long road ahead of us but it is so encouraging to see Greg getting stronger and stronger instead of sicker and sicker. His new heart is a precious miracle and a reminder to us that we have a good and loving Father in Heaven.
Love,
Elise
Friday, December 17, 2010
End of the week update
Hi Everyone,
I wanted to give you all an update at the end of Greg's first week home and 3 weeks (yesterday) of having a new heart. As you know from our message earlier this week and Elise's blog update, it's been a difficult week. She did a great job of explaining how things REALLY were early in the week and once again, you can view that at www.gregboros.blogspot.com (even if you don't want to write anything back to them.)
He had an "emergency" visit to the clinic on Tuesday due to increased swelling, difficulty breathing, uncontrolled pain, ? wound infection. Those concerns were all addressed and thankfully, he has been feeling much better since then. He was placed on Bumex (a diuretic) and he said that it felt as though some of the swelling in his abdomen had gone down, which allowed him to breathe more freely. Despite that, the swelling in his feet and legs has continued to increase, along with his weight. I was fearful that his kidneys were failing again, but he explained to us last night that his kidneys are functioning pretty well!
He was seen for his regularly scheduled appt. in the clinic yesterday and they did increase his diuretics a bit, but he believes that the swelling is from the steroids. The change in pain meds has resulted in much better pain control, allowing him to exercise more effectively and breathe more deeply, which was essential for his recovery. He still has some lung expansion issues, but he is definitely headed in the right direction in that department. The area at the top of his chest incision appears to be looking better, but there is an area midway down that is causing some real concern for infection right now. He said that it has grown from about a dime size to a half dollar size in the past couple of days. The doctors are aware of it have increased his antibiotics and keeping close tabs on him. If this area opens up, they may need to "clean it out" and it would have to be packed on a daily basis, allowing it to heal from the inside out. Another issue that has developed is something called a lymphocele in his right groin where he was punctured so many times between the heart/ lung bypass machine and dialysis catheters. If this does not go away, they might need to open it (allowing it to drain) and their plan would be to place something called a "wound vac" to it which is a sponge like application connected to a motor of sorts that draws the drainage out and allows it to heal.
Both of these things are of great concern and we would so much appreciate your prayers that both areas would heal completely without further intervention. Greg still remains anemic and the doctors feel that is related to his kidney function still not being what it should be. They've instructed him to eat a diet high in protein which will stimulate the kidney production of a hormone that will increase his red blood cell production. He said that Elise has been making DELICIOUS food for him to accomodate that "order" and that his appetite is returning! The PT/ OT have been working with him and he is now able to walk the steps, using phone books to decrease how high the step is.
We had a wonderful conversation with him last night and were delighted to hear that his voice is gaining strength again! He sounded stronger and more clear in thought than the last time we spoke and that is such an encouragement. He said that the days this week have been filled with medical appts at home and the hospital, but it seems that he is receiving great home care and that he and Elise are being SO supported by the Mason CRU staff with getting in and out of the apartment/ groceries/ prescriptions, etc. They and we are very grateful!
He was delighted to tell us that they had finally decorated their Christmas tree on Wednesday night and that it was just wonderful to sit and look at how beautifully it turned out despite the fact that they hadn't "labored" over the light, tinsel and ornament placement as they usually would. Another example of Christmas "magic"! He has made it a goal to take a shower and accomplish two "goals" each day - along with the breathing and exercises that he is required to do. He sounded so motivated and proud of the progress they are making, despite total exhaustion for both of them.
His next "outing" will be to see the surgeon for a follow-up visit on Monday, which is extremely well timed, due to the concern about wound infection. They went and had another chest xray done yesterday in preparation for that visit so it will be great to hear what Dr. Spear has to say.
That's all I know for now, but will update you as I hear anything more. Thank you so much for continuing to care and pray - God's attention and answers to your prayers is so amazing to us all. Have a blessed pre-Christmas weekend! I know how busy this time of year is, but remember to take a break and marvel at how God knew our need and provided a Savior for us 2010 years ago and continues to be with us each and every day in all of our needs.
We love and appreciate you all so much!
Becky
End of week update
Hey Everyone!
I've been meaning to write an update of how things went this week and was just sitting down to write one when I received this update from Greg's mom (included below). She does a great job explaining how this week went and I'm very grateful because I'm feeling pretty worn out right now and didn't really feel up to writing. As you'll see in her update Greg has improved so much this week - its been really encouraging to see him getting stronger each day now that his pain is under control. There are some prayer concerns below but all in all we feel so blessed and encouraged by how things are going. It amazes me that he has had a new heart for 3 weeks already - in some ways the last few months seem completely surreal. Though he has a long way to go physically, most of the time (when he's not dealing with the steroid side effects) he is able to think more clearly than he has in over a year - its awesome to see his brain working with adequate oxygen!! Thank you for continuing to pray for us. We appreciate you a lot.
Love,
Elise
Hi Everyone,
I've been meaning to write an update of how things went this week and was just sitting down to write one when I received this update from Greg's mom (included below). She does a great job explaining how this week went and I'm very grateful because I'm feeling pretty worn out right now and didn't really feel up to writing. As you'll see in her update Greg has improved so much this week - its been really encouraging to see him getting stronger each day now that his pain is under control. There are some prayer concerns below but all in all we feel so blessed and encouraged by how things are going. It amazes me that he has had a new heart for 3 weeks already - in some ways the last few months seem completely surreal. Though he has a long way to go physically, most of the time (when he's not dealing with the steroid side effects) he is able to think more clearly than he has in over a year - its awesome to see his brain working with adequate oxygen!! Thank you for continuing to pray for us. We appreciate you a lot.
Love,
Elise
Hi Everyone,
I wanted to give you all an update at the end of Greg's first week home and 3 weeks (yesterday) of having a new heart. As you know from our message earlier this week and Elise's blog update, it's been a difficult week. She did a great job of explaining how things REALLY were early in the week and once again, you can view that at www.gregboros.blogspot.com.
He had an "emergency" visit to the clinic on Tuesday due to increased swelling, difficulty breathing, uncontrolled pain, ? wound infection. Those concerns were all addressed and thankfully, he has been feeling much better since then. He was placed on Bumex (a diuretic) and he said that it felt as though some of the swelling in his abdomen had gone down, which allowed him to breathe more freely. Despite that, the swelling in his feet and legs has continued to increase, along with his weight. I was fearful that his kidneys were failing again, but he explained to us last night that his kidneys are functioning pretty well!
He was seen for his regularly scheduled appt. in the clinic yesterday and they did increase his diuretics a bit, but he believes that the swelling is from the steroids. The change in pain meds has resulted in much better pain control, allowing him to exercise more effectively and breathe more deeply, which was essential for his recovery. He still has some lung expansion issues, but he is definitely headed in the right direction in that department. The area at the top of his chest incision appears to be looking better, but there is an area midway down that is causing some real concern for infection right now. He said that it has grown from about a dime size to a half dollar size in the past couple of days. The doctors are aware of it have increased his antibiotics and keeping close tabs on him. If this area opens up, they may need to "clean it out" and it would have to be packed on a daily basis, allowing it to heal from the inside out. Another issue that has developed is something called a lymphocele where he was punctured so many times between the heart/ lung bypass machine and dialysis catheters. If this does not go away, they might need to open it (allowing it to drain) and their plan would be to place something called a "wound vac" to it which is a sponge like application connected to a motor of sorts that draws the drainage out and allows it to heal. Both of these things are of great concern and we would so much appreciate your prayers that both areas would heal completely without further intervention. Greg still remains anemic and the doctors feel that is related to his kidney function still not being what it should be. They've instructed him to eat a diet high in protein which will stimulate the kidney production of a hormone that will increase his red blood cell production. He said that Elise has been making DELICIOUS food for him to accommodate that "order" and that his appetite is returning! The PT/ OT have been working with him and he is now able to walk the steps, using phone books to decrease how high the step is.
We had a wonderful conversation with him last night and were delighted to hear that his voice is gaining strength again! He sounded stronger and more clear in thought than the last time we spoke and that is such an encouragement. He said that the days this week have been filled with medical appointments at home and the hospital, but it seems that he is receiving great home care and that he and Elise are being SO supported by the Mason Cru staff with getting in and out of the apartment/ groceries/ prescriptions, etc. They and we are very grateful!
He was delighted to tell us that they had finally decorated their Christmas tree on Wednesday night and that it was just wonderful to sit and look at how beautifully it turned out. Another example of Christmas "magic"! He has made it a goal to take a shower and accomplish two "goals" each day - along with the breathing and exercises that he is required to do. He sounded so motivated and proud of the progress they are making, despite total exhaustion for both of them.
His next "outing" will be to see the surgeon for a follow-up visit on Monday, which is extremely well timed, due to the concern about wound infection. They went and had another chest xray done yesterday in preparation for that visit so it will be great to hear what Dr. Spear has to say.
That's all I know for now, but will update you as I hear anything more. Thank you so much for continuing to care and pray - God's attention and answers to your prayers is so amazing to us all. Have a blessed pre-Christmas weekend! I know how busy this time of year is, but remember to take a break and marvel at how God knew our need and provided a Savior for us 2010 years ago and continues to be with us each and every day in all of our needs.
We love and appreciate you all so much!
Becky
Tuesday, December 14, 2010
Ups and downs
Hey everyone,
I have been extremely busy taking care of Greg since he came home on Friday and this is my first chance to write an update! Greg is doing OK. He had a great first night and day home on Friday night and Saturday but pushed it too hard and ended up completely exhausted by Saturday evening. From Sunday through this morning Greg has experience increased swelling (concentrated in his legs and abdomen), difficulty breathing, pain, fatigue, and incision pain/redness/oozing. Last night was a really tough night for Greg and by this morning it was clear that we needed to call the transplant team and tell them what was going on. This whole experience has been such a steep learning curve for both of us - we were pretty accustomed to dealing with the heart failure related symptoms he had and monitoring them to make sure he didn't go down hill quickly without the doctors being aware. But this is completely different. Not only are we looking for very different symptoms but we're also adjusting to a new heart that has changed the way a lot of his body systems and other organs function. We're also having to keep track of all the signs of rejection and infection which require immediate medical attention- but can be subtle and hard to recognize. All in all we've both felt very confused this week at home and unsure of what we're doing and how he's doing.
Last night Greg and I were discussing how different this experience is from his sternotomy last year (when they opened up his chest with the plan of removing the pericardium around his heart but closed him up instead, realizing he needed a transplant not the removal of his pericardium). Last year's recovery was hard - this is so much harder. He is significantly weaker, having MUCH more pain, unable to go from sitting to standing without help, having trouble breathing, etc. But on top of all that he's also dealing with the side effects of his medications - and is very confused, sees and hears things that aren't there, doesn't know where he is when he wakes up, and a bunch of other unpleasant, unsettling things. These are classic side effects of his medications, but knowing that doesn't make them any easier to deal with. Please pray for him as the mental confusion is in many ways even harder to deal with than the pain.
This morning the transplant doctors decided Greg needed to come to the hospital to be seen by them. Wow was that an ordeal. He had to tackle going down the stairs for the first time, go out into the cold which made it really hard to breathe, and then get into a wheelchair at the hospital - after which a volunteer promptly dropped him because she wasn't properly trained on helping to lift someone out of a wheelchair. Greg had terrible pain and a big scare during that ordeal but thankfully we were already in the transplant clinic and the wonderful women who work at the front desk came running over and helped us get him back in the wheelchair.
After a lot of blood work and a long exam and discussion with the doctors, we felt much better about everything. They changed his medications so that he's on diuretics to get rid of the 20+ lbs of fluid in his legs and abdomen, on a new pain-management schedule to help control the pain so that he's better able to move, cough, and breathe, and on additional doses of his transplant meds to help fight off an infection that he has. They checked his incision and don't think that it is infected - though it is possible that an infection is in the beginning stages. They did some blood work to check for infection - we don't have the results yet. They also did an xray to check his lungs and make sure they don't have too much fluid on them (we're waiting for results), and they examined his chest for instability in the sternum. The doctors considered checking Greg into a rehabilitation facility but Greg asked to be sent home instead and to see if the new medications will enable him to recuperate enough to stay out of rehab. Assuming his test results come back okay, tomorrow a nurse and the occupational therapist will be coming to check on him and then we'll be back at the hospital on Thursday morning for Greg's weekly transplant clinic appointment. The nurse will likely come back on Thursday and Friday as well, and on Friday Greg is getting another chest x-ray - this time for his follow-up appointment with the surgeon who did his transplant. With the home nursing, PT, and OT, Greg has very demanding days and the extra trip to the hospital and next Monday's surgeon visit are probably going to wear him out. Please pray for strength, healing, and any infections or complications to stay away.
In the midst of all of this, we have been so blessed by our wonderful Cru staff team - they have been helping out since our families both went back home last week. I would be totally stuck without them and am so grateful for their help! Greg is not at a point where I can leave him alone for more than a walk to the mailbox, so they are filling prescriptions, picking up groceries, etc. - what a blessing! It is comforting to know that I'm not alone and that there are many people around who are willing to help in any way possible. Getting Greg back home today would have been impossible without help - and I am grateful for friends who have servants hearts!! When we got back from the hospital this afternoon there was a large package at our door and it turned out to be a care package from a wonderful group of ladies in State College. This care package made Greg's day. After watching him experience so much pain, frustration, and disappointment over the past few days and especially this morning, it was great to see a little bit of a spark in his eyes. We both felt unbelievably loved and supported - and as I sit here typing this I'm once again struck by how much all of you care about us. Thank you for being a part of all of the ups and downs he's going through. There will surely be many more of them to come but we are blessed to have a new heart, great medical care, and your love and support.
Thanks so much for praying for us,
Elise
I have been extremely busy taking care of Greg since he came home on Friday and this is my first chance to write an update! Greg is doing OK. He had a great first night and day home on Friday night and Saturday but pushed it too hard and ended up completely exhausted by Saturday evening. From Sunday through this morning Greg has experience increased swelling (concentrated in his legs and abdomen), difficulty breathing, pain, fatigue, and incision pain/redness/oozing. Last night was a really tough night for Greg and by this morning it was clear that we needed to call the transplant team and tell them what was going on. This whole experience has been such a steep learning curve for both of us - we were pretty accustomed to dealing with the heart failure related symptoms he had and monitoring them to make sure he didn't go down hill quickly without the doctors being aware. But this is completely different. Not only are we looking for very different symptoms but we're also adjusting to a new heart that has changed the way a lot of his body systems and other organs function. We're also having to keep track of all the signs of rejection and infection which require immediate medical attention- but can be subtle and hard to recognize. All in all we've both felt very confused this week at home and unsure of what we're doing and how he's doing.
Last night Greg and I were discussing how different this experience is from his sternotomy last year (when they opened up his chest with the plan of removing the pericardium around his heart but closed him up instead, realizing he needed a transplant not the removal of his pericardium). Last year's recovery was hard - this is so much harder. He is significantly weaker, having MUCH more pain, unable to go from sitting to standing without help, having trouble breathing, etc. But on top of all that he's also dealing with the side effects of his medications - and is very confused, sees and hears things that aren't there, doesn't know where he is when he wakes up, and a bunch of other unpleasant, unsettling things. These are classic side effects of his medications, but knowing that doesn't make them any easier to deal with. Please pray for him as the mental confusion is in many ways even harder to deal with than the pain.
This morning the transplant doctors decided Greg needed to come to the hospital to be seen by them. Wow was that an ordeal. He had to tackle going down the stairs for the first time, go out into the cold which made it really hard to breathe, and then get into a wheelchair at the hospital - after which a volunteer promptly dropped him because she wasn't properly trained on helping to lift someone out of a wheelchair. Greg had terrible pain and a big scare during that ordeal but thankfully we were already in the transplant clinic and the wonderful women who work at the front desk came running over and helped us get him back in the wheelchair.
After a lot of blood work and a long exam and discussion with the doctors, we felt much better about everything. They changed his medications so that he's on diuretics to get rid of the 20+ lbs of fluid in his legs and abdomen, on a new pain-management schedule to help control the pain so that he's better able to move, cough, and breathe, and on additional doses of his transplant meds to help fight off an infection that he has. They checked his incision and don't think that it is infected - though it is possible that an infection is in the beginning stages. They did some blood work to check for infection - we don't have the results yet. They also did an xray to check his lungs and make sure they don't have too much fluid on them (we're waiting for results), and they examined his chest for instability in the sternum. The doctors considered checking Greg into a rehabilitation facility but Greg asked to be sent home instead and to see if the new medications will enable him to recuperate enough to stay out of rehab. Assuming his test results come back okay, tomorrow a nurse and the occupational therapist will be coming to check on him and then we'll be back at the hospital on Thursday morning for Greg's weekly transplant clinic appointment. The nurse will likely come back on Thursday and Friday as well, and on Friday Greg is getting another chest x-ray - this time for his follow-up appointment with the surgeon who did his transplant. With the home nursing, PT, and OT, Greg has very demanding days and the extra trip to the hospital and next Monday's surgeon visit are probably going to wear him out. Please pray for strength, healing, and any infections or complications to stay away.
In the midst of all of this, we have been so blessed by our wonderful Cru staff team - they have been helping out since our families both went back home last week. I would be totally stuck without them and am so grateful for their help! Greg is not at a point where I can leave him alone for more than a walk to the mailbox, so they are filling prescriptions, picking up groceries, etc. - what a blessing! It is comforting to know that I'm not alone and that there are many people around who are willing to help in any way possible. Getting Greg back home today would have been impossible without help - and I am grateful for friends who have servants hearts!! When we got back from the hospital this afternoon there was a large package at our door and it turned out to be a care package from a wonderful group of ladies in State College. This care package made Greg's day. After watching him experience so much pain, frustration, and disappointment over the past few days and especially this morning, it was great to see a little bit of a spark in his eyes. We both felt unbelievably loved and supported - and as I sit here typing this I'm once again struck by how much all of you care about us. Thank you for being a part of all of the ups and downs he's going through. There will surely be many more of them to come but we are blessed to have a new heart, great medical care, and your love and support.
Thanks so much for praying for us,
Elise
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