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

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 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

 

 

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

Greg is home and doing well

Hi Everyone,

Just a quick note to let you know that Greg did in fact get home late yesterday afternoon and is doing well! I just spoke to him and he just enjoyed his first FULL shower in a couple weeks and he said it was wonderful (although exhausting!) He said that he slept in late today - in his new lift chair which he said is incredible. He and Elise are enjoying some "down time" today and they are managing all the medications and medical needs well so far. He did not mention any of the home care services starting yet so I guess that will happen in the next couple days.

When we spoke with him last night, he said that it was awesome to be back home with Elise, where it was peaceful and quiet and he could enjoy "dimmed lighting"... and get to see Hope (their cat!)

Last evening, Smitty, his mom and I totally enjoyed attending a benefit concert that was held for him by the "Circle of Friends" vocal/ bell choir group held at English Lutheran Church in Zelienople. It was such a blessing to be there and be put totally in the Christmas spirit through absolutely beautiful music. We are so grateful for the effort that was made on behalf of Greg and Elise and the generosity of those attending was just amazing. When we called Greg after the concert and told him the amount of money that was raised on their behalf, he was stunned because it was almost precisely the amount that they had to spend to get the lift chair and pay for the ambulance service to take him home from the hospital. ANOTHER example of how God just continues to provide and meet needs over and over again. THANK YOU to anyone involved in last night for being the blessing that you were to him and Elise and to us... we are so grateful.

And last night was just the latest in an ongoing series of physical, emotional and spiritual blessings that you have provided over this year. For every way that you've ministered to ANY of us, please know how much we appreciate you. Last night felt like the final scene in "It's a Wonderful Life"... our little town surrounding us in a time of need. Although I don't wish trial or tragedy on any of you, I do hope that at some point in your life, you'll be blessed to feel such an outpouring of support and love.

I hope you have a great rest of the weekend!

Love,

Becky

Greg is going home!

Hello to all,

Greg just called and said that he is being discharged! The cardiac biopsy showed a level 1 rejection, which is permissable. I'm not certain, but from what I remember hearing back in January when they were doing the inital transplant teaching, I think I remember them saying that they want to see a low degree of rejection since they then know that they haven't completely wiped out his immune system. They seek to walk a fine line of keeping him immune suppressed and also allowing him to be able to have SOME degree of reaction to a foreign body in his system. So, perhaps this is it? Regardless, it is acceptable for him to go home and he does not have to undergo a biopsy next week since he has had two good biopsies. He will have an appt at the transplant clinic though and will have lab work done.

He sounded exhausted when he called. The day has been FULL thus far and he still needs to get home! The therapist came this morning and worked with him to successfully be able to stand up out of the chair, but, since the chair he has at home is even lower, Elise went this afternoon and bought a lift chair/ recliner which will be awesome for him. Some of the CRU staff are going to pick it up at deliver it to their apartment this afternoon - how wonderful!

He failed his step training, so he will be taken home by a professional wheelchair/ ambulance service who will carry him into the apartment. He sounded a bit breathless on the phone, so I hope his discharge at this time is a wise thing, but we can only depend on the wisdom of the doctors who have directed him so excellently all this time. He will receive services from visiting nurses, physical therapists, and occupational therapists, so hopefully all will go well and he will recover even faster in the quiet and peace of their home.

I asked Greg about his blood count and chest xray and he hurredly said that they were fine. He was just kind of exhausted and couldn't talk any more, so I hope that all is stable in those areas also and trust that they must be for him to be getting discharged.

As Elise mentioned in her blog post last night, although they are so looking forward to being home together after two months, there is a certain degree of anxiety associated with discharge from the hospital and the safety of having staff there any time they need help. Will you please pray for a smooth transition home today - that Greg would experience physical, emotional and mental peace through the whole thing and that Elise would also feel comfortable and confident in him being there? Also, please pray that the home health professionals assigned to them would be clinically excellent, kind, compassionate and efficient?

We continue to trust that this is God's perfect plan and timing for him to be released today and I pray that it is a sweet, wonderful homecoming for them both.

I'll let you know as I hear any more! As always, thank you for your prayers!

Love,

Becky

Prayers needed for Friday- possibly going home!

Hi everyone!

This is the first time I've written in a while and I want to start out by saying THANK YOU!   I still cannot believe that we are on the other side of Greg's transplant - what an amazing gift - and each of you have had a huge role in helping us to get to where we are.  Especially as we prepare to leave the hospital and all of the friends we've made there (you know you've been there too long when you're worried about missing the woman who cleans your husband's hospital room!) it is so comforting to know that you are rallying around us still.  We are over the big hurdle but we still have quite a journey ahead of us and we would appreciate your continued prayers.  Hasn't it been amazing watching God answer so many prayers this year and especially these past two months?  I have a lot to think about and process but I know that God has shown himself to me in ways I never expected.  One thing that has been so incredible is hearing Greg's phenomenally intelligent transplant doctor tell us over and over again that he has NO idea how or why the body can heal the way it does after a transplant.  And he has NO idea how Greg's electrical conduction didn't completely deteriorate while waiting for transplant based on the condition they found his heart in during the surgery.  It has become very apparent that medicine (even the most advanced medicine) cannot explain everything that happens.  God has been at work in Greg's body in an unmistakable way.  Incredible!

But it is late and I have some prayer requests I'd like to share with you before I go to sleep.  They are still hoping to discharge Greg from the hospital tomorrow but it'll depend on a few things:  1. We are waiting for the results of the heart biopsy Greg had today.  If he has a 0 or 1 on the rejection scale he can go home.  If he has a 2 or 3 on the rejection scale he'll need to stay in the hospital for 3 or more days to get IV steroids.  2. Greg's chest x-ray did not look very good today and his red blood cell count continues to fluctuate and not go up the way they'd like it to.  The surgeons are concerned that Greg may have some internal bleeding around his heart.  They will be doing a echocardiogram tomorrow to determine if he has internal bleeding.  I'm not sure what they'd need to do to fix it but it would mean more days in the hospital.  3.  Greg must be able to go up stairs and take a (sitting) shower before he can go home.  His physical therapy appointments kept getting rescheduled this week so he has not done either of these things yet.  PT will be working with Greg first thing in the morning to see if he's physically strong enough to go home.

As you can tell tomorrow is going to be a really strenuous day for Greg even if he doesn't end up going home.  Please pray:

• For a good result on the biopsy - a 0 or 1 on the rejection scale!
• That Greg's echo will look good and that he is not bleeding internally.
• That Greg will have the stamina and balance to go up stairs and shower and that PT would not drain him of all energy.
• That the doctors will make a wise decision and not send Greg home before he is strong enough to face the challenges of being home (climbing stairs to get inside, low chairs, a tub, etc.).  We would rather he stay in the hospital for an extra day or so than come home and realize that he wasn't ready to come home. 
  
• For us as we transition to Greg being home.  It may sound odd but since Greg has lived in the hospital for the last 2 months it is going to be a huge change for both of us when he comes home.  We are so excited for him to be home - but it's also hard to leave the safety and comfort of the hospital.  I find that I am nervous about taking care of him and he is concerned about adjusting to not having a nurse nearby in case any problem arises.  Thankfully we will be having a nurse come to our apartment (for a week or so) to check on Greg and also a physical therapist will be coming to make sure Greg is progressing physically.  We have a lot to process and we need to figure out a whole new way of life - new medicines, new routines, new concerns (immunosuppression), etc. 
  

I will do my best to keep you updated on his recovery - I'm not sure how often I'll be posting because there is a lot I need to do to take care of Greg - but I hope to be able to let you know how things are going.

Thank you so much,
Elise

Second Post Transplant Heart Cath/ Biopsy Done - waiting for results

Hi Everyone,

I'm writing this from home in PA - it's great to be back, but it's hard to know that Greg is still struggling in VA. We know that he is definitely on the road to recovery but it's hard leaving him while he's still not feeling too great. However, as he and I prayed last night - we need to remember that God is STILL completely aware of what's going on and not one single thing is going to happen that he's not in control of. It makes it so much easier to be at peace knowing that.

Yesterday, after walking the two laps, he was EXTREMELY fatigued for the rest of the day - perhaps just too much at once? He did walk one lap twice more throughout the day, even though it was hard and he was exhausted. By bedtime last night, he was just feeling drained physically and emotionally. The toll of this two month hospital stay, the huge surgery and the extremely high dose steroids has all landed on him. He is desperate to be able to go home and yet concerned because he doesn't feel strong enough/ independent enough right at this moment. And due to repeated interruptions by every doctor, therapist, nurse, social worker and well meaning hospital personnel who have grown attached to him and have heard that he's going home soon, he's just not getting rest.

Today, he had his heart cath/ biopsy and Dr. DeSai said everything looked good. The biopsy results will be back tomorrow. They are graded on a scale of 0-3 - if he has a 0 or 1, he will be permitted to go home and if it's a 2 or 3, he will have to stay through the weekend and receive extra steroids. They also removed the dialysis catheter from his chest today. As a result of both of those procedures, he was "bedbound" for part of the day and wasn't able to participate in the physical/ occupational therapy that he needs in order to be ready to go home. The therapist plans to be there bright and early in the morning to work with him in anticipation of possible discharge.

There is a little bit of concern because his blood count dropped a little again today and is at a level where he could be feeling fatigued as well. Dr. DeSai didn't feel that there is danger of him bleeding anywhere and they're hoping that as his kidneys return to normal, their part in promoting red blood cell production will pick up again. Please pray that his blood count rises mightily and that he gets the energy that he so badly needs.

Another concern is the side effects of the steroids. I didn't realize until last night how much he is dealing with in that regard -- seeing things/ confusion, etc. It's so disconcerting and frightening, even if you KNOW that there is a logical reason for what you're experiencing. It's troubling him alot and so if you'd please pray that he would have sweet, amazing, God-filled "steroid experiences" instead, we'd be so grateful. There is nothing that any of us can do to make those effects go away and he will have to continute to endure them for about three months until he reaches his daily dose of about 10mg/ day for a life time maintenance dose. That gets adjusted any time there is rejection.

Elise's mom, Rosemary, will be leaving to go back to State College tomorrow, so Elise and Greg will be on their own again - fortunately with the CRU Staff "family" ready in the wings to help as needed. They are such a blessing and we are so grateful that they are there. We are so grateful to the Newman's who hosted all/ parts of our family during this two week stay - what a blessing!

Also, thanks to ALL of you who have helped us and them in so many ways during this time. You are an incredible, amazing group of people and we are SO blessed to know you. Thank you for caring and continuing to pray and encourage. I'll let you know tomorrow when we hear any more news about the biopsy/ discharge.

Love to you all,

Becky

Greg just walked TWO laps around the unit

Hi Everyone!

I'm on my way to get some lunch, but just wanted to stop and give the "daily update" that you all are so kind to care about :)

Just a little while ago, Greg walked TWO laps around the nursing unit with just a couple quick rests along the way! Yesterday, he walked one lap, two times! He is in pain and is fatigued but is so motivated to get up and get moving :) He still seems to be on track for discharge on Friday, as far as we know. Today, they are supposed to take the dialysis catheter out of his chest, but I'm not sure when they'll do that. He also needs to have the pacer wires removed. It was exciting to see that as he walked, his heart was able to respond to the activity and raised from 76 to 82! Isn't it amazing that less than two weeks after implant, it's getting in rhythm with his body? Just amazing! The rhythm remains steady and solid without any IV medication assistance! Tomorrow, he will have his second biopsy, so please pray or more good results. They've been backing off on his steroids, which is wonderful, and is allowing his blood sugars to remain in good control without alot of insulin.

Elise is excitedly preparing for his homecoming on Friday! They will be able to decorate a Christmas tree (has to be artificial this year, but that's OK!) and just enjoy being home together after him being in the hospital for 2 months!

I'm planning to head back to PA tomorrow morning, knowing that he is definitely on the right track! There will ups and downs for sure in the future, but the outlook is SO wonderful and he and Elise are SO ready to get on with life. THANK YOU for all the cards, packages, emails, texts and calls that continue to come in.... this has definitely been a season of miracles and blessings!

I won't be sending emails as frequently since I won't be here, but will keep you updated on big things as they happen. Elise usually posts updates on the blog, so don't forget to sign up for the automatic emails that come from that when she posts. Again, that address is www.gregboros.blogspot.com

I hope you're having a great "over the hump day".... I feel like we are REALLY over the hump!

Love and thanks to all,

Becky

Hopefully going home Friday!

Good Morning!

It's about 1:15pm on Tuesday, and I just left Greg's room after getting to sit in on extensive discharge teaching from MaryBeth, who is the post-transplant coordinator. It sounds like they are planning to discharge Greg on Friday, if everything continues to go well. Isn't that amazing? :) He has been in the hospital for almost 2 solid months and now he will finally return home WITH A NEW, STRONG, HEALTHY HEART in his chest- in time to celebrate Christmas! It feels like the "play" button on their lives is finally going to get pushed again, rather than the "pause" that has controlled 2010 -- just waiting for a heart. What a liberating feeling! He brought tears to my eyes last night when he told me that he is starting to feel "curious" about things again and anxious to learn about new things. He said that for so long, he just couldn't focus and didn't want to learn anything new-- how exciting to have his mind starting to wake up again as a result of increased blood flow to his brain!

Elise and I didn't really get a chance to talk to him for too long before MaryBeth came in, but we did find out that he had a relatively good night and feels a little more rested this morning. The kidney specialist also came in and said that his kidney function is continuing to improve and that he will not need further dialysis!! The dialysis catheter in his chest will be removed! YEAH!!!

They did an EKG this morning which will probably determine if they can remove the external pacemaker wires that are still in his chest - that is looking good too! His next cardiac biopsy will be on Thursday and if it shows no/ extremely minimal rejection again, they won't do one for two weeks, but otherwise he will have a repeat in one week. His medications/ steroids will be adjusted according to the results of those biopsies.

And more good news is that so far, his blood sugars have been pretty much under control and since they are in the process of decreasing his steroids, it's possible that he won't even have to be checking his blood sugars at home, as he had initially been told that he would.

They are ordering visiting nurses to come and see him a few times a week for a week or two, to monitor his incisions and his overall condition. If needed, they can also order home physical therapy. After three months, they will do a stress test, and he will then start cardiac rehab. Until then, he is encouraged to continue to move and walk as tolerated at home. Cardiac rehab will bring more intense, monitored exercise and weight lifting to strengthen his muscles.

It sounds like alot more things become possible after that three month mark - of course all dependent on his status at that point. It's just exciting to hear how many things he WILL be able to do and so much to look forward to. SO AMAZING!!

That's it for now! Just wanted to give you today's update - as always, thank you for your prayers - know that they are being answered!

Love to you all,

Becky

Prayer needed for pain relief and increased blood count- otherwise doing well

Hi,

It's 4PM Monday as I write this from the hospital library. Greg is doing well, but is extremely fatigued and having alot of pain today.

As you know, prayers were again answered and the Steelers won last night ! He thoroughly enjoyed the game and joined in cheering and trying to wave his Terrible Towel and definitely raised his heart rate! Maybe a little too much cheering?? After we left, he used the bathroom and while doing so heard a "pop", followed by a ton of bleeding from one of his chest tube sites. He had bled quite a bit before the bleeding was controlled and today, his blood count is down alot. For those of you who are my medical friends, his hemoglobin is down around 7.5. It has been low as a result of his renal failure, but it did get even lower. At this point, they are not transfusing him, but will instead give him some other medications to help increase his blood count. The whole experience was quite frightening to him and exhausting, so by the time he got to bed, he was pretty spent and in alot of pain.

This morning, Ruth, the physical therapist came to see him and since she is very "motivated" on behalf of her patients, she had him get up and walk 75 feet down the hall, stopping at each nurses charting station where there was a stool - getting up and down- and then returning to his room where she put him through the litany of other exercises that she has him do. He said he was trembling inside from pain and exhaustion by the time she was done with him, but that she announced in her Brittish accent that he had done "BRILLIANTLY"! You have to hear him say it, to appreciate her tone :)

He finally had fallen asleep after all this and was awakend by the surgical physician's assistant and since he didn't wake up in a completely alert state, she feared that his blood gasses were bad and ordered that his pain meds be stopped. Needless to say, that made him feel really upset, understandably. He questioned it and so she ordered that they draw blood gasses on him, which is quite painful. Fortunately, they were OK, except for his oxygen level being a little low. This also is understandable because he was not breathing deeply since he had unresolved pain! In the end, Dr. DeSai came in and offered a plan for pain relief that should work and when I left his room a little while ago, he was anxiously waiting for his first dose.

He had been told earlier in the day that he was going to receive dialysis today, but it had not been started yet when I left the room. His weight is up a bit, but he is not short of breath! His kidneys are working, but just not quite good enough yet. He said that he feels bloated in his abdomen and legs, but it's not overly evident.

He is continuing to be a true "Braveheart" and I told him today that I'm so proud of him for trying so hard to get better and for being so courageous. He said that he doesn't feel brave inside but I am continually amazed at how he takes so much in stride (politely and gratefully) - I don't think I'd be such a good patient.

That's about all I know for now -- if you'd please pray for good pain management that would allow for maximum deep breathing/ coughing and for an increased blood count that would provide more energy, we would be grateful.

Hope you're all having a good Monday! Please know how much you are appreciated!

Love,

Becky

Biopsy showed no rejection! Praise God!

Hello Again!

I'm SO happy to write this note! It seems that we've been your doorsteps so many times when there is a crisis, but today, I'm here to share a definite answer to your prayers! NO REJECTION on heart biopsy! Isn't that amazing, after all the setbacks of this past week? And that's not all... they almost have the Isuprel IV drip taken down and his heart rate has been in the high 80's/ low 90 beats per minute. Dr. DeSai had explained to us that they're not sure how/ why but that Greg's nerves (that had been severed from his old heart) would "find their way" into his new heart and eventually innervate it to allow his heart rate to be normal. That seems to be happening very quickly and even without therapeutic levels of some of the medications on board that should help that to happen. This whole week has been an amazing testimony of answered prayers for his preservation and restoration in so many ways. We are in awe of it all.

More good news... this morning, there was some concern about his lung status and so he was taken to the XRAY department for full front/ back/ side chest xrays and those results showed that there is not a problem! He still needs to continue to do the breathing exercises that they want him to do (that hurt and make him cough!), but he is not needing to wear any supplemental oxygen right now!

And MORE good news... his kidneys appear to still be 'waking up" with his renal lab values heading in the right direction. The renal doctor came in today and ordered some diuretics for him, but they are not going to do dialysis on him today. The hope is that he will continue to improve in that department and that he would not need any further dialysis.

The doctor said that if a bed was available, he would be transferred to the step-down unit today. Then, if he remains stable, kidneys progress, and he gets on with his physical therapy, he should be headed home fairly soon!! YEAH!!!! He will be in the hospital 7 weeks tomorrow, so you can only imagine how anxious he and Elise are to have him back at home :)

He had a wonderful visit with his Aunt Ellen and the twins this weekend and now is looking forward to watching the Steeler game with Smitty tonight! Do you think they could win just for him??? That would be the perfect end to the perfect weekend! :)

He didn't mention anything about "Greg Radio" today, so I'm not sure how bad that is right now, but the blessing is that since he showed no rejection, they can back off on the steroids a little I think!

That's it for now - I hope you can sense a wave of encouragement and relief coming from Fairfax, VA when you read this. Thanks for helping us to get through this week! We hope that you're all well and enjoying these special days and weeks before Christmas! Know that we love and appreciate you all!

Becky

Smitty will be headed back to Zelie for the week and will return here next

An awesome evening last night. Kidneys starting to work

Good Morning!

And I can say that after a wonderful late evening visit with Greg last night. Ellen got to town with the boys and we enjoyed a brief late evening visit, during which Greg looked better than I've seen him all week. We continue to marvel at the fact that there is color in his cheeks and last night we saw his usual smile, along with his eyes looking alot more "normal" than I've seen them all week. He is extremely exhausted and has so much discomforthat especially in his chest from coughing intentionally and unintentionally. I can only imagine how much he hurts. But we are so proud of him because he realizes what he has to do in order to get better and is SO ready to do the hard work.

The big news is that after his dialysis yesterday (I think I heard that they took 3 liters of fluid off him), he stood up and passed almost 3/4 liter of urine ON HIS OWN!!! Isn't that incredible!!! It would seem that his kidney are waking up, just as we have been praying.... God is so good to answer our/ your prayers over and over again!

More big news... as of 10PM, that were weaning off his Isuprel IV drip which has helped with the connectivity of his heart and helped with the conduction/ rhythm of his heart. Even though they were at a level of medication very close to being completely off, he was maintaining a heart rate of about 80 beats/ minute. NO PACEMAKER! Please pray that his new heart would continue to get grafted into his body and function like it had always been there! Obviously, no news on the biopsy yet, but we'll let you know when there is.

The high dose steroids that he is receiving are causing him some difficulty sleeping, some vivid disturbing dreams and constant music playing in his head!

He told us that "Greg Radio Station" has been playing continually since yesterday afternoon and was attempting to sing along with Mercy Me song that was playing as we were visitionng. He made us laugh because he said that you'd think if you were going have your own radio station, it would only play music you like, but he was disappointed with some of the selections!! We smiled but obviously, this is difficult for him so please pray that it goes away quickly. The Post Transplant Nurse Practioner, Mary Ann, said that it would as the steroids get tapered down. He has alot of side effects of steroids yet to endure like tremendous bloating, weight gain, mood swings, etc. so please be praying in advance that these would be as gentle as possible.

Mary Ann did some teaching with them yesterday and made him VERY happy when she told him that he could be camping in 3-6 months and that although he would have to wear a mask while chopping/ collecting wood because of possible molds, that he could take the mask off while sitting at a camp fire.... he was ELATED!!! They also discussed the second honeymoon plans and she said that they can't leave the country for a year and even then they prefer they avoid the Caribean as was planned because if he had a problem, he would wind up in a Mexican hospital which wouldn't be good. He asked about Hawaii and she said that would be GREAT since they have a transplant program there... so I think that is the dream destination!!!

He is eating some solid food and just to obvserve swallowing precautions (clearing his throat/ coughing after each swallow). They said that his vocal folds are not closing properly (hence the voice disruption) which is also making him more prone to aspiration pneumonia, which would NOT be a good thing with his immune system suppressed. His voice seems a little bit stronger and so our prayer is that this would "right itself" also.

By the end of the day, we're hoping that he will be moved to the 3rd floor "presidential suite" again! :) The nurses have been faithfully coming to visit him and can't wait to have him back! That makes him feel really good :) And speaking of visits, Bill, the OR nurse whol prayed with us in the preop area and also in the OR during surgery, has come each day to visit Greg and pray with us and him. Another angel that we've encountered through this saga.

I hope your day is a good one! Happy Weekend!!

I'll let you know later how today goes.

With a happy heart,

Becky

Heart Biopsy/Cath Done Today

Hi Everyone,

I am actually writing from Smitty's computer and therefore am able to send this message to everyone on our "updated list". In case this doesn't happen again soon, please know that each time I write, it is posted on the blog at gregboros.blogspot.com On that website, you can sign up to receive all the email updates sent to you automatically, and you can leave comments if you care to. Or, you can always respond back to sboros@zoominternet.net and we'll get your messages on Smitty's Blackberry.

SO... the important news is the Greg was taken to the cath lab late this morning for his first heart biopsy/ cath, which seems to have gone well. We won't know the results of the biopsy possibly til Monday, but please keep praying for NO REJECTION! It is likely that there will be some rejection since that's a common occurrence in the beginning, so we need to not get discouraged if it is in fact there. The doctor said that the pressures are a little high in his heart still, which indicates that he will need dialysis today again. He said that the heart looks good and that the cardiac output is 2 1/2 times what his old heart was. He also said that with time, the nerves to the heart that regulate the rate/ response to exercise, etc just kind of "find their way" to the new heart and make it regulate appropriately. Isn't the human body an amazing testimony of God's ability?

We heard earlier in the day that Greg has a little bit of "collapse" at the base of the left lung. This is NOT uncommon and can be resolved by increased coughing/ deep breathing/ sitting up in the chair/ moving around, etc. All these things have been almost impossible for him to do because of everything he has been dealing with since surgery, but he is ready and WANTS to get better! Dr. DeSai did say that the reintubation/ being put on the ventilator caused him a real set back and it sounded like he COULD possibly be in the hospital up to a couple weeks more, but as with everything, I'm sure he could get out sooner with some good days in a row. It sounds like he will definitely be out, but please be praying HOME FOR CHRISTMAS!!! That means an awful lot to both him and Elise.

I'm hoping that they will allow him to eat a little bit of food today since his procedure will be over and his intestinal tract is working!!

They also were making some changes to his pain medications today that will hopefully help him to be able to move a bit more freely, along with coughing and deep breathing more effectively. Despite the tremendous pain he has been in, he has been a CHAMPION at making himself do all the things that are necessary to help him recover. I told him that he has given a new definition to "BRAVEHEART" - one of his favorite movies!

There is a chance that he will be transferred back to the step down unit (hopefully the presidential suite - room 305) again today, but if not, then tomorrow. All the nurses from up there have been coming down regularly to see him and cheer him on and can't wait to have him back again. The VAST majority of the are an awesome group of caregivers.

Smitty's sister, Ellen, is bringing Tim and Nate down for a visit this weekend and they should get here this evening. Please pray for safe travel for them and for a wonderful visit for the boys. Greg is SO exhausted that the visit will have a different "tone" than usual when they are together, but it will just be good for Tim and Nate to see him!.. and also Ellen!

That's all I know for now - hope you're all well and enjoying your Friday!

As always, thanks for your prayers!

Love,

Becky

December 1. Kind of a tough day

Hi,

Today has been kind of tough. Although Greg is stable in terms of staying off the ventilator, and is gradually waking up, he is still in a state of "fog" and agitation - surely caused by the massive surgery he had, all the drugs he had, and having NO idea where two days of the week went. He looked at the calendar today and whispered "it can't POSSIBLY be December 1st". I tried to recount all of what has happened, like we all have many times, but he is just so restless and uncomfortable that it's just not sinking in.

We've had some issues today trying to get the staff to give at least a small dose of some kind of pain medication and he finally did get an Ultram at 5:30PM, but had had nothing all day. I completely understand the need for him to breathe properly, but it breaks my heart to see him SO uncomfortable from his incisions, tubes, catheters and just being in bed for five days. I'm praying that a "middle ground" solution to his discomfort will emerge tonight. He still has not had all of his specialized attachments removed, and so he can't get out of bed yet, although they did place his bed in a chair postion.

He is scheduled for a "short run" dialysis tomorrow - today they took off 2500cc in three hours and he had quite a bit of pain afterwards. the surgeon did talk to Elise tonight and told her to not be discouraged. He said that he has had patients that were on dialysis for six months after cardiac surgery and then all of a sudden, their kidneys started working! We're praying that his kidney function gets restored quickly!

He is also scheduled for his first cardiac biopsy for tomorrow, if he's able to hold still, which seems doubtful at this point but we'll pray that it happens since this is the test that shows if he is having any rejection of his new heart.

He does seem to be swallowing better tonight and actually was allowed to have some applesauce and a few bits of ice cream and did well with it. I am a little concerned about his voice - we're hearing nothing but whispers so far and I'm hopeful that it will quickly resolve and that no vocal chord injury occurred during the second intubation/ ventilator experience. Greg has a beautiful, strong voice that he uses ALOT and we're trusting that it will return to normal.

So, if you'd pray that he would have excellent, knowledgeable, kind nursing care tonight and that he would have relief of his discomfort and get some good, restorative sleep, we would be grateful for him and us!

I hope you all had a good day today and that you and yours sleep well tonight!

Blessings to you all,

Becky

Wed am update. Pray for comfort, clarity and deep breaths

Good Morning,

Well, yesterday was an extremely "sleepy" day. Greg had been so heavily medicated while he was on the ventilator again to keep him calm and comfortable that even after they turned the medications off yesterday, it took hours before he even began to wake up. The removed the breathing tube/ ventilator close to 2PM and in all honesty, I was afraid that he wasn't ready but I was wrong! He initially did so well, maintaining a high oxygen concentration on just minimal oxygen through his nose. After about three hours, his oxygen level dropped significantly and they had to put a face mask on him too,but through the night, they were able to remove that and currently he is again only on a low flow through his nose, It's very important that he gets awake and clear enough to breathe deeply and effectively in order to prevent pneumonia or any other lung complications.

Just as big an issue today is his mental status - the medications, procedures and ventilator for past two days has left him in a spot of confusion about what is going on. He knows very well how uncomfortable he is and that he feels awful, but is having a tough time putting it all together. He has minutes where he is very clear, like this morning when he was asking when he could take a shower, but earlier, he thought Elise was a gummy bear! Yes, he makes us smile even now! Please pray that the effects of the medications would clear his body/ mind so that he would not be frightened or confused about what is going on. It's difficult for the nurses to properly medicate him for his pain because his respirations get depressed by the pain meds and it also causes further confusion. I can only imagine how much he hurts as a result of everything and I pray that his medications can get properly organized as he clears mentally.

Another concern for today is swallowing - they have ordered a "swallow test" to make sure he is not going to aspirate what he takes by mouth into his lungs, since he has choked on a few mothfuls of watersince yesterday. His anti-rejection meds are due soon, so we just don't want there to be any delay to those.

They are changing his dialysis today from continuous to intermittent, and they have removed the Swan Ganz catheter into his heart. If they wind up taking out some other "lines", they will be able to get him up to the chair, which would be a good thing! So, If you'd pray along those lines as well, we'd be grateful.

Smitty arrived safely yesterday and it's such a blessing to have him here. Rosemary is still here too and her presence has been a real comfort to Elise. Elise and I are hanging in there -- pretty tired but glad that we have each other to provide Greg the support he needs while having a chance to catch a little nap here and there. We sort of feel like Tom Hanks in the move "The Terminal", where he lives in the airport -- the third floor lounge has become "home" for now!

That's it for now - I hope that you all have great days today and that you're supported by people who care with all the tough things in your lives, as we are. We know that God is in control of every detail of the day to come and we trust that it is all for good.

Love to you all,
Becky

Greg is off the ventilator Praise God

Thank you for your faithful prayers today and ALL the notes of encouragement! As usual, God has answered our prayers and as of 1:50PM, Greg is off the ventilator! He is still extremely sleepy and in all honesty, I was afraid that they were removing the breathing tube/ ventilator too soon, but, his nurse felt confident that it was the right time and I believe she was right :) Although he has not spoken to us yet, he did smile when he saw me and when he saw Elise -- such a sweet confirmation that our Greg was still with us! I would imagine that he's not speaking because he remains really sleepy, plus his throat is probably very sore. Smitty just got here a little bit ago and he definitely turned his head toward Smitty when he heard his voice.

Elise and I remarked that his color is really good - actually better than before surgery! We trust that he has in fact received the perfect heart!

His kidneys haven't changed much in terms of output, but as the kidney doctor just reminded us, they have taken SO much fluid off, that his kidneys haven't had to put very much out. They are now cutting back on the rate of fluid taken off and beginning tomorrow, he will be on intermittent, rather than continuous, dialysis which will allow him a little more freedom of movement.

We were told today that the autopsy on his own heart did in fact support the ARVD diagnosis, which is no real surprise, but comforting nonetheless that we know for sure what was wrong. We were told that when they actually removed his heart from his chest, it was in even worse shape than what they had imagined and that his life was truly in danger. We're SO grateful for God's provision at just the right time.

We are hoping for a quiet rest of the evening - with him gradually waking up more and having NO memory of this recent time on the ventilator. His nurse did a FANTASTIC job of caring for him and getting him through this experience in a non-traumatic way. We're very grateful!

That's it for now - we will update in the morning! THANK YOU FOR EVERY KINDNESS AND ENCOURAGEMENT THAT YOU HAVE PROVIDED FOR US... I can't imagine getting through this alone.

Love to you all,

Becky