Wednesday, October 27, 2010

address correction

Greg Boros
INOVA Fairfax Hospital
CTU - Room 314
3300 Gallows Road
Falls Church, VA 22042

Tuesday, October 26, 2010

In hospital and moving up the list

Hello everyone,

We found out yesterday that Greg is officially a 1A on the heart transplant list.  This means that he's at the top - not necessarily #1, but in the highest category.  This also means that he's too sick to leave the hospital.  None of the diuretics are working on him - his heart simply isn't functioning well enough to pump the blood to his kidneys so the diuretics are working on dry kidneys while he's holding lots of fluid in his heart.  They also are unable to keep his potassium levels high enough, or even steady, despite the massive amounts of potassium he's getting in his IV and by mouth each day.  The doctors are trying a new medication to see if it will help his cardiac output but again they aren't hopeful it'll make a significant difference.  At this point it looks like Greg will be staying in the hospital until he receives his new heart. 

Two weeks from yesterday they will reevaluate Greg (if he hasn't been transplanted yet) to see if he still qualifies as a 1A.  They will continue doing this every two weeks until he gets his new heart.  We are at the point where they don't have any other things to try to keep his heart functioning- only a new heart will do.  We are hoping and praying that he gets his new heart before he starts feeling even worse and before his heart starts functioning even less.

Please Pray:
For a new heart!!
That the new medication will increase Greg's heart function.
For Greg's fluid level to decrease and his potassium level to increase.
For both of us emotionally.  Greg has been in the hospital for over 1 week already and he could be there for a significant amount of time.  Its a tough place to be and we are trying to stay upbeat and really get him "settled in" but he misses being home (and fresh air and freedom... etc.) and I miss him being home!
That I would stay healthy.  I felt pretty sick over the weekend but thankfully Greg's parents were here to be with Greg so I could get some rest.  Now that they are home I'm trying to balance getting enough rest, spending time with Greg, being at the hospital for when the doctors are there, and taking care of stuff at home (including our super lonely kitty!).  Its exhausting and I need to stay healthy so that I can take care of Greg before and after the transplant.

Greg is sleeping better at night!
I am adjusting better to being home with him in the hospital.  Its hard to sleep because I'm anxiously awaiting any call from the hospital, but I'm doing much better at this than I had been.
Greg had a good weekend with his parents and even dropped a little water weight (he's back up again now) over the weekend so he felt a little better.

I'll keep you updated as things progress over the next two weeks. 

Greg has been so encouraged by the cards we've received in the mail this week!  They are a bright spot in his pretty dull and difficult days.  If you'd like to send a card to Greg, you can send it to or home address or directly to his hospital room:

Greg Boros
INOVA Fairfax Hospital
CTU - Room 314
300 Gallows Road
Falls Church, VA 22042


P.S. Just a quick note about flowers/plants: Greg can't be around any flowers or plants post- transplant because of risk of infection from bacteria in the water and soil.  If you are interested in sending flowers or plants, please keep this in mind!

Friday, October 22, 2010

Things are not improving

Another quick update:

Things have not gone well since Greg came to the hospital on Monday.  He's actually put on more fluid and they can't seem to get it off of him.  The doctors explained that the diuretics squeeze fluid out at the kidneys - but his kidneys are dry as a bone.  The problem is that his heart is not able to pump enough blood to the kidneys for the diuretics to work.  Between not being able to get fluid off of him, having trouble finding an ant-iarrhythmic medication that will work and not cause a dangerous reaction, and the recent heart catherization results, and everything else that has happened in the last 2 months, it is clear that Greg's heart is degenerating faster and faster. 

As of last night they have decided to bump Greg up to a 1A status on the transplant list.  The regional transplant board will have to approve the new status, but the doctors think that'll happen very easily.  They are all really concerned about Greg and don't want to be in a "too late" situation.  Once he's officially a 1A he should be getting heart offers and if a good one comes his way, they will take it.  We could be looking at a transplant within a couple weeks - or months- even days really is possible.  There are risks of getting a transplant but at this point the risk of Greg's own heart in his chest is so much greater than a transplanted heart.

We just heard this news this morning and it is tough.  We are very scared.  We know that a transplant is a blessing and a miracle, yet it is terrifying at the same time. 

At this point we don't know when Greg will be leaving the hospital, or if he'll be able to before the transplant.  They just added a PICC line this morning to better control his potassium and he needs to lose 20 lbs of water weight before he can go home.  He wants to go home so badly, and I miss having him home so much!  But we are trying to be patient, to trust the doctors, and ultimately and most importantly to trust that Jesus is taking care of us - even when it doesn't look that way on the surface.

Greg's parents are coming down for the weekend - and we are especially grateful to have family coming after this emotional morning. 

- for the diuretics to work
- for Greg to be able to come home
- for us both to get sleep
- for me at night - I'm really having a hard time emotionally when I get home late leaving Greg in the hospital
- for a successful transplant
- for us to be able to live life again!  I looked through some pictures from last fall this morning and it seems like a different lifetime ago that we could do things as simple as carve a pumpkin or go to the Natural History Museum.  Greg has been sick for so long and we really want to make sweet memories with each other, our friends, and our families again.
- that we would feel Jesus' presence with us at every moment and know that we are never outside of his care.


Wednesday, October 20, 2010

Still in Hospital

Just a quick update:

Greg is still in the hospital.  The diuretics don't seem to be working well, in fact they've only been able to get 1/2 lb off of him since Monday.  They're also having some difficulty finding an anti-arrhythmic that will work for him.  The one that they initially tried seemed to be having a negative effect on their ability to get fluid off of him.  Tomorrow they will start another drug, one that is very commonly used post-transplant.  This one has very bad side effects when used long-term.  The hope is that they will be able to take him off of it before the side effects begin to cause problems.  He will be very closely monitored while on this medication.  At this point it looks like Greg will be in the hospital until Friday at the earliest.  We're hoping and praying that he'll be able to come home soon, but the doctors really want to try to get the fluid under control or at the very least figure out why it isn't responding and what the next steps are.  Please pray for good sleep for both of us.  Its been a difficult week.


Monday, October 18, 2010

Back to the Hospital


Greg had an appointment this morning and the doctors decided to admit him to the hospital.  His weight has spiked over the past week and the excess water is effecting him to the point where he can barely think straight, he is utterly exhausted, and he's having trouble breathing.  He will be in the hospital until at least Wednesday so that they can use IV diuretics to take off the excess water and so that they can start him on the new medication I mentioned in my last post.  It does appear that his heart is going in and out of atrial flutter - hopefully the new medication will fix that.

Greg is actually really glad to be going to the hospital this time - which shows how truly miserable he feels!  We're at home right now waiting for the call from the hospital that there is a bed open for him.  Greg fell asleep immediately after we got home from the appointment this morning and I'm hoping he'll continue getting good rest at the hospital too.  Hopefully by the end of the week he'll be able to come home with a lot less water on board and feeling much better!  Please pray that this medication would be really effective at preventing arrhythmias in Greg's heart.  If the doctors cannot get his arrhythmias controlled they are going to need to put Greg on the "fast track" to transplant - and they, and we, don't want that.  Also please pray that Greg and I would have a supernatural level of peace that is above our circumstances.  To start the new medication they must take Greg off of one that has really been our safety blanket for nearly 2 years and his heart seems to be so dependent on it to be safe.  We trust that the doctors know what they are doing but its difficult to have that sense of security taken away.

When we got home from the appointment this morning I checked the mail and we had a flood of cards from so many of you reminding us of God's love and that you care for and are praying for us.  I can't even begin to express how much of a boost that was for us!  We were feeling really down about having to go back to the hospital again and hearing more difficult news, and then to get such encouragement in the mail was awesome.  Thank you so much.  Every card we receive feels like a much-needed hug!


Friday, October 15, 2010

End of week update

Hello everyone!

Well, after Monday's cardioversion going so well we were expecting Greg to feel great, but unfortunately that didn't happen.  On Tuesday he slept for 16 hours straight and then felt completely exhausted when he woke up and again on Wednesday.  He also gained nearly 5lbs of water weight in two days so we were concerned that he might've gone back into atrial fibrillation.  However, we did get great news Wednesday that Greg's heart is still in a normal rhythm and that his potassium level was higher than when he'd left the hospital Monday!  The doctors thought that Greg might've caught one of the many stomach bugs going around and that it was probably wiping him out.

This morning he had an appointment with the arrhythmia doctors.  During the appointment we found out the Greg had some atrial flutter on Tuesday which is probably a more accurate explanation for why he was so exhausted.  Atrial flutter is a less serious atrial arrhythmia than atrial fibrillation, though it can also cause blood clots and strokes.  Greg already developed atrial flutter once last spring and they performed an atrial ablation (where they cauterize the neural pathway that is causing the arrhythmia) that fixed it.  This atrial flutter could be caused by the same pathway or it could be caused from something else.  If he continues to experience atrial flutter they will do another atrial ablation on him to stop it.  We also learned that once someone develops atrial fibrillation they are extremely likely to go back into it, even after a successful cardioversion because it isn't a permanent fix.  It is one more symptom of Greg's heart getting so stretched out with fluid.  The doctors are going to be watching Greg very carefully for any signs (increased weight gain, fatigue, shortness of breath) that he is bath in atrial fib.  This is kind of difficult because those are the symptoms he has from heart failure in general so its not easy to distinguish between them.  But the doctors will be seeing him very often (including this Monday) to watch for any changes.  If he does go back into atrial fib they will perform another cardioversion.  The doctor explained that they will treat any atrial arrhythmias very aggressively because Greg's heart depends on his right atrium for the majority of its function since his right ventricle is in such bad shape.

Finally, we learned that they are going to be adjusting Greg's medications.  He needs to be on a medication that helps prevent atrial arrhythmias as well as ventricular arrhythmias.  The medication they will use is really potent and Greg will need to be admitted to the hospital for a few days for monitoring when they put him on it.  At this point the plan is to wait until Greg is being admitted for other reasons (like low potassium, a heart catherization, or ablation) to minimize his trips to the hospital (which is so considerate of the doctors!) but again it'll depend on how things go.

So, this week didn't turn out as great as we had hoped, but we're learning a lot about atrial arrhythmias and we feel confident that Greg is getting really good care from his doctors.  We are so blessed to live close to a hospital that is able to care for him with such excellence!  God sure knew what he was doing when he brought us to Northern Virginia!

Thank you for continuing to pray for us, and for the many encouraging notes and cards we received this week!  We are both really exhausted, emotionally as well as physically, from this journey and its a boost the know that you all care so much for us.  I have been feeling particularly drained lately and appreciate the encouragement I've received more than I can express on this blog!  I'm hoping that nothing very exciting will happen next week and that you won't be hearing from me (no news is good news!), but I will keep you posted if anything major happens.


Monday, October 11, 2010

Cardioversion successful and Greg's talk available online!

Hey Everyone,

Greg's cardioversion was a huge success today!  The doctor didn't find any blood clots during the TEE so they proceeded directly to the cardioversion.  Greg's heart converted from atrial fibrillation to a normal (safe!) rhythm on the third attempt and it stayed that way!  This is a HUGE answer to prayer!!!  The doctors anticipate that Greg's heart failure symptoms will decrease, his body will respond better to the diuretics, and his heart function will degenerate slower! And if his heart stays in the normal rhythm (there is a possibility it will convert back to atrial fibrillation) they will have more time to wait for the perfect heart!  We are thrilled with the results!

Greg will go to the hospital on Wednesday for an EKG (so they can make sure his heart hasn't converted back to atrial fibrillation) and blood tests to check his potassium level and to monitor the amount of blood thinners he is taking.  His potassium level was really low today but they allowed him to come home anyway (yay!) and we are hoping that it will increase over the next two days (they have stopped the potassium-leaching diuretics for now) so that he can continue to stay out of the hospital.   Thank you so very much for praying for us today!  Our prayers were answered!

I also wanted to let you know that the message Greg gave at Cru this past Thursday is now posted on the Mason Cru website ( - click on the media link).  He spoke about suffering- told through the lens of what Greg has experienced and learned this year while waiting for his transplant.  You can also access it directly at    I just listened to it for the first time (I didn't go to Cru because I felt like it would be too emotional for me to hear him speak about the last year) and it was incredible.

Thank you again for keeping us in your prayers.  We'll let you know how things go this week.


Sunday, October 10, 2010

Cardioversion scheduled for Monday

Hi everyone!

Just a quick update asking for your prayers for tomorrow.  Greg's doctors decided that they need to do the cardioversion as soon as possible instead of waiting a couple of weeks.  Greg hasn't been responding to the diuretics and they think that the atrial fibrillation is making them less effective.  On Friday we were told that the cardioversion is scheduled for tomorrow (Monday) and Greg was put on an aggressive diuretic regimen over the weekend to try to get some of the fluid off.  The more excess fluid he is retaining the less likely the cardioversion will effectively get his heart out of atrial fibrillation and into a normal rhythm. 

Greg did lose over 6 lbs this weekend (a HUGE answer to prayer) and we're hopeful that he'll be below the 210lb cut off tomorrow morning.  If not, they'll admit him to the hospital so that he can get IV diuretics for a few days and then do the cardioversion once his weight is below 210lb.  At this point it looks like he will be below 210lb tomorrow.  If so, we are supposed to arrive at the hospital at 1pm.  I'm not sure what time they'll actually be doing the TEE (to check for blood clots in his heart before doing the cardioversion) and cardioversion but we would both appreciate your prayers tomorrow afternoon!

I'll try to keep you posted as things progress this week.  Thanks for praying!