Going Home Soon!

Hi Friends,

It is amazing how much better Greg is doing in just 2 weeks.  I feel a little shocked by his turn-around and how much better he feels.  This situation has truly become a best-case scenario when compared to all of the really scary possibilities we were facing.

At this point, Greg has lost nearly 30lbs of fluid which the doctors believe just slowly accumulated over time.  As you can imagine, he feel so much better physically (even though he is still a little weak from being so sick and spending so much time in bed at the hospital)! 

They've determined that Greg has chronic diastolic heart failure.  His heart muscle doesn't relax as much as it should, which means that it can't properly pump blood through it, making Greg suscepitble to having extra fluid in his body (which then causes heart failure and in Greg's case, kidney failure).  Over the past few days, the doctors have been trying to figure out the right balance between heart function, kidney function, diuretics vs. extra water in his body, and how he feels.  Its not possible for all of these things to be 100% and they are prepared to let the kidneys not function as well (due to the effects of the diuretics he needs) in order to allow his heart to get rid of the fluid it needs to to pump properly.  Obviously, this is all in laymans terms and I barely understand it!  But I do understand that there are a bunch of factors that they are trying to balance to give Greg the best quality of life and heart/kidney function that he can have.

Hopefully, he will be having a right heart catherization tomorrow morning which will tell the doctors how much extra fluid he still has in his body and how it is effecting his heart.  Once we have that information, they can decide what doses of different medications he needs and if he's ready to go home or not.  This will also help them (and us) monitor his health in the future so that we don't get in another situation where he is suddenly in heart and kidney failure and we didn't see it coming.    

We are REALLY hoping that we can go home tomorrow!  But more than that, we just want to make sure that Greg is healthy enough and they have everything figured out (especially since we live 4 hours away from the hospital and can't just pop-in to recallibrate things!).  At the same time, I feel a little nervous about going home and monitoring things on our own, so please pray for us as we learn to watch Greg more carefully for signs that the heart failure is worsening.

Thank you for all of your support, encouragement and prayers!  We are so thankful to be sharing good news - your prayers for Greg have been answered!

Love,

Elise

Quick Update

Hi Friends,

Over the past two days, Greg's kidney function has started declining again.  The doctors think that this is probably the side effect of his transplant medications being at a much too-high level in his body (now that the extra water is coming off they are being absorbed much better and the levels of one medication is triple what it should be).  Although they made drastic changes to his medications yesterday, his kidneys continued to get worse today.

The doctors have explained that there are so many factors in Greg's treatment that can be causing the kidney issue and it might take some time to isolate the cause.  Greg's heart catherization may be moved up to tomorrow afternoon if his kidneys don't improve overnight, in order for the doctors to have more information to work with.

Please pray that the doctors can figure this out quickly and that Greg's kidney function improves.  We are so eager to get home and really hope that this doesn't add more days onto his hospital stay.

A surprise source of "adventure" today was finding a tick on Paul while he was visiting Greg!  Greg's nurse Nour, who is awesome, was so sweet and gathered a bunch of other nurses to help us figure out what to do.  We ended up taking Paul to an urgent care clinic to have the tick removed and he handled it like a champ.  Now we just need to watch for any signs of Lymes Disease over the next month since this area has really high rates of Lymes.  

Thank you for your continued prayers!

Answers!

We are finally getting some answers!

In the past two days he has lost over 16lbs of fluid, and in all he has lost over 20lbs of fluid!  With this excess fluid out of his body, his kidney function continues to improve daily, and all of the symptoms of heart failure that he was initially hospitalized for are lessening considerably.  There is still too much excess fluid in his body and much of the focus right now is continuing to get the fluid off.

We had a very helpful conversation with a couple of doctors today and while we don't have all of the answers, we have much more information than we did earlier.

At this point, the doctors are strongly leaning away from a diagnosis of rejection, even though we are still waiting on the 2nd and 3rd AMR test results to come back.  It is still possible that either test will be positive, or that the plasmapheresis will find an antibody that they cannot test for, but the doctors do not feel like this is likely.

The most likely cause of all of this is Cardiorenal Syndrome, which essentially means that dysfuntion in his heart is what caused his kidneys to fail.  Due to a lot of factors that the doctor explained about Greg's transplanted heart, and the condition that caused his old heart to fail, Greg's heart has trouble maintaining a proper fluid balance in his body.  What likely happened was that over time, fluid accumulated around his heart, effecting its ability to pump blood to other organs, including the kidney and for whatever reason, last week it got to the tipping point and he went into heart and kidney failure.

Before Greg leaves the hospital, the doctors' goal is to remove all the excess fluid so that they can get baseline information to use to keep this fluid accumulation problem in check in the future, preventing a scenario like this one from happening again.  They anticipate that we will be here at least until Monday as they work on getting the fluid off, weaning Greg off IV diuretics and other IV medications, finishing plasmapheresis, and doing another right heart catherization to measure his heart function when he is "dry".  

We are praying that all of these procedures and tests go as smoothly as the doctor outlined them today, and that Greg will be able to go home next week!  We are hopeful that the information they have learned through this awful ordeal will lead to much better data-driven care of his heart in the future.

Please continue praying for us - we are all tired and very much want to be home!  And please pray for Greg as he continues to feel poorly from all of the procedures and medications he is on, as well as the effects of the excess fluid that is still causing problems in his kidneys.  Please pray that the diuretics would do their job and that he would feel better and better as the week goes on.

We are so grateful for how much better Greg is doing overall and the way that his kidneys have responded so positively to the diuretics!  It is a huge relief to see him doing so much better than he was last week!  Over the past two days he's been able to walk a short distance in the halls, and play with Paul a little bit during his visits.  It is so good to see him getting out of bed and breathing easier!

Thank you for your prayers!

Kidney function improving!

Today is the first time that we've felt like things are starting to go in a positive direction!

The big news is that his kidney function is improving, even though the diuretic he's on is known to hurt kidneys. He also lost 5lb of fluid overnight which is so important in improving his heart and kidney function.

There have been some difficult moments today, but there are other times when he's been much more alert and more himself than he has been in over a week. We are very thankful for this progress even though we know there is still a long way to go to before we have answers and he can go home. 

He had his first session of plasmapheresis today and he tolerated it well.  I'm looking forward to talking with the doctors tomorrow - especially the kidney doctor.

Please pray for:

- The diuretics to keep removing excess fluid from Greg's body.

- His kidney function to continue improving.

- His oxygen saturation to improve, along with his heart function.

- Answers to why he is experiencing heart failure symptoms - is it AMR or his kidneys that are causing it?

- For my sinus infection to clear up (I was able to be seen by a doctor today and am hoping my antibiotic does the trick!).

Thank you for your continued prayers! God is answering them! 

Pray for Kidneys

Hi Friends,

I've been sending email updates to some friends and family over the past week, but for those of you who don't know, Greg was transported to INOVA Fairfax Hospital (where he had his heart transplant in 2015) by ambulance on Tuesday because he was exhibiting symptoms of rejection or heart failure.

Its been a bit of a rollercoaster since then and instead of rehashing all the details, here are where things stand right now:

The biopsy performed on Wednesday morning was negative for cellular rejection, which is a huge praise!  Cellular rejection is very scary and very dangerous.

The first test for Antibody Mediated Rejection (AMR) came back negative.  The doctors are currently waiting on approval from insurance to do two more tests, which are rarely done and quite new.  We hope to have those results next Thursday.  Greg went through some very difficult treatments for AMR in the summer of 2012 and we hope he won't have to go through them again.

In case he ends up being positive for rejection of some sort, he went through 3 days of massive IV steroids to try to minimize the damage of the rejection, if it is there. 

Amazingly, Greg's echocardiogram showed normal heart function, which is inexplicable because he is showing all the symptoms you would expect from heart failure.  His heart pressures during his catherization were very high, which makes sense because he is retaining a ton of extra fluid.  And his kidney function is poor and is only getting worse.  He has been on massive amounts of IV diuretics to try to get some of the fluid off of him, but he isn't responding well to them and they seem to be taking a toll on his kidneys, which are already not functioning well.  

Because Greg's case doesn't fit anything that the doctors are used to seeing, they are divided on what to do next.  They've decided that it is best to move ahead with doing plasmapheresis on Greg in hopes that they can remove an antibody from his blood that is causing AMR even though it doesn't show up on any test that they've done so far.  He will receive 4-5 treatments, one every other day starting tomorrow, which means that we are going to be in Fairfax for a while.  They aren't sure that this will help but the possible benefits outweigh the risks so we're going ahead with it.

A big development today is that the doctors are now wondering if the cause of all of these symptoms of heart failure isn't actually a problem with the heart but a problem with the kidneys that is causing all the fluid to build up around the heart.  His kidneys are functioning very poorly and originally they thought this was caused by the heart.  They brought a kidney specialist on to Greg's case to help them figure out what is happening with his kidneys and how it is effecting his heart/ what we need to do.  There is talk of possible dialysis if the plasmapheresis and diuretics don't help the kidneys regain their ability to function well.

So we still don't have many answers, but we are feeling better knowing that the kidney doctor is part of Greg's medical team now.

Some prayer requests:

Greg's first plasmapheresis treatment is tomorrow morning.  Pray that he tolerates it well and that it cleans out any antibodies that shouldn't be in his blood!

He had a very large catheter inserted into his chest today for the plasmapheresis and it is causing him a great deal of pain and discomfort.  He's going to have it in for over a week so please pray for the pain to stop.

Greg is still having difficulty breathing and a lot of pain from all the excess fluid in his body.  Please pray for relief from these symptoms!

That the doctors would be able to figure out what is causing the heart-failure symptoms and that there would be solutions to the problems.

I have a severe cold, am having a hard time sleeping, and feel physically lousy on top of the stress of this situation.  Please pray for physical healling, rest, and a peace from the Lord that is not dependent on our circumstances.

Paul continues to be the sweetest, most flexible kid in the world.  Pray that we would be able to give him consistency, fun, and good moments with his daddy in the midst of all of this.  Please also pray that he would sleep past 4:45 am!  That would really help my lack of sleep!

Thank you for your prayers!

Love,

Elise

Paul Naaman Boros

Hi Friends!

It's been nearly a year since we posted anything on the blog and we wanted to give you a little update in case anyone is wondering how Greg has been since we moved to State College.

Greg's health has been really good this year!  We've driven back to Fairfax a few times throughout the year for his biopsies and annual testing and his heart it doing really well.  He hasn't had any rejection and as of his last biopsy in March, he only needs to have biopsies every 6 months since he's been doing so well.  God has been so good to us!

But the best thing that happened this year is the birth of our baby boy, Paul Naaman.  He was born April 5th and is growing and changing so much every day.  We absolutely adore him and he is one of the best gifts that the Lord has ever given us.

Because of Greg's heart transplant and the possibility that Paul could inherit ARVD from Greg, we already have taken him to see a pediatric cardiologist.  His heart is absolutely perfect but they will be tracking him every 6 months to watch for any changes that might be of concern (ARVD typically doesn't present itself until someone is in their teens, 20s, or even later).  We are not dwelling on the possibility of Paul inheriting ARVD but are trying to trust God with whatever he has planned for Paul's future.  And right now, we are just soaking up our little boy's precious smiles and snuggles!

We thought you might enjoy seeing a couple pictures of Paul!

Biopsy results and big changes ahead!

Hey everyone!

Last week, Greg had a biopsy to check his heart for rejection.  The doctors were really happy with his health in general and they didn't find any cellular rejection which is such a blessing!  They did however determine that the antibody mediated rejection (AMR) has returned.  You may remember that Greg went through many different types of treatment for AMR last summer, none of which were effective.  Over this past winter, the AMR mysteriously disappeared on its own (definitely an answer to prayer) but now it has returned.

The doctors have decided not to try to treat the AMR since they don't know of any effective treatments.  Unlike cellular rejection, AMR isn't immediately dangerous to Greg's heart but it does have long-term implications on his heart's health.  We would appreciate your prayers that the AMR would go away again without treatment.  Both of us feel at peace about the AMR returning.  God took it away in the past and we know that he is able to do so again if he so chooses, and we are just trusting the long-term health of Greg's heart to the Lord because we can't do anything to prevent the AMR from doing damage.  We are just really relieved that Greg won't have to go through the treatments that he had last summer - they were so awful and painful and we are glad to avoid the hospital as much as we can!

At the end of this month, we are moving to State College, PA where Greg will lead the Penn State Cru ministry!  We are really excited to be returning to Penn State, although it is sad for us to leave Mason too.  We've written a lot about this in prayer letters to our ministry partner team, so I'm not going to go into a lot of details about our new ministry, but I did want to let you know how this impacts Greg's health care.

The great news is that it doesn't!  Greg's heart transplant doctors were thrilled that Greg was being offered this opportunity and were 100% in support of us moving to State College - which we did not expect at all!  They said that Greg's health is very stable and they are comfortable with him being further from post-transplant capable care.  We had the choice of keeping INOVA for Greg's post-transplant care or transferring his case to Pittsburgh, and we decided to stay with INOVA.  Even though it will mean driving down to Fairfax every 3-6 months for biopsies and other tests, we are much more comfortable staying with the doctors who know us and who saved Greg's life!  In the future, we may transfer his case to Pittsburgh, but right now we are not ready to leave the INOVA transplant team and we feel much safer keeping Greg's care consistent. 

This move is really forcing us to trust that God is the one who protects Greg and keeps him alive.  It wasn't until we began considering leaving Fairfax that I realized how scared I was to live further from INOVA.  My sense of Greg being safe and secure was centered around our proximity to the hospital - and it hit me that I was trusting in INOVA, not God, to keep Greg safe.  But God reminded me that all 3 times that Greg had cardiac arrests that could have easily killed him happened in State College.  God has saved Greg's life multiple times when we were far from  a state-of-the-art cardiac hospital, and since "Jesus Christ is the same yesterday, today, and forever" (Hebrews 13:8) He can do so again.  This is something that I have to continually remind myself as we get closer and closer to our move date, and I would appreciate your prayers for both of us, especially me, that we would place our confidence in the Lord, not in our proximity to INOVA.

We are so grateful for all of you.  Thank you for continuing to pray for Greg's health even though the updates are fewer and farther in between these days.  God has used you in powerful ways in our lives!

Love,
Elise