Greg is home, and what's coming next

Hello!

Greg was discharged from the hospital yesterday afternoon and we are thrilled that he's home!  Before leaving we had the opportunity to discuss his case with Dr. Desai (the head of the heart transplant team) and learned a lot of valuable information.  From Monday - Wednesday the doctors realized that it is not going to be possible to keep Greg at a consistently safe potassium level.  Since the only diuretic that is effective on him wastes a lot of potassium, they don't have many options.  Even with the picc line and the high doses he was receiving in the hospital, his potassium level wouldn't stay up.  They decided that it would be best to try to maintain him at home  with high doses of oral potassium pills since they weren't having much success in the hospital - and we heartily agreed!  So Greg actually came home with his potassium at the same level as it was when he went in to the hospital Monday.  He goes back tomorrow for a blood test to make sure his potassium hasn't continued dropping and then on Tuesday to reevaluate how he's doing.

We also learned that the doctors think Greg's atrial fibrillation has been going on for a while - that he's been having bursts of it (they've actually seen this on his device for months) that kept increasing to the point where he's been in a. fib. constantly since August 1st.  This explains why Greg's heart failure symptoms were so variable and hard to predict - and why it took so long for the docs to realize what the problem was.  It is not uncommon for someone to develop a. fib. later in life and most people can live an active life while dealing with it.  The problem in Greg's case is that his heart depends heavily on his atria to get his blood pumped to the rest of his body - this is because his right ventricle is so blown out that it is ineffective at pumping.  But instead of having a good squeeze in his right atrium that helps force blood to and through the right ventricle, his right atrium is quivering (the doc. said to picture of bag of wriggly worms) at an average of 300bpm and is not giving that big pump that his heart needs.  So this makes his heart failure symptoms worse, increases the rate of degeneration of his heart, and if left unchecked would result in his other organs failing.  Not a pretty picture.

Because it is so serious the first priority is to try to stop the a. fib.  We have to wait 1 month before they can do the cardioversion so that the blood thinners have time to get rid of any existing clots and prevent any more from developing (due to him being in a fib for so long).  Its too risky to do a cardioversion without waiting for the whole month.  Dr. Desai isn't incredibly hopefull that they'll be able to get Greg out of a. fib.  He actually said that Greg developing a. fib. is a landmark on the way to transplant - a sign that his condition is getting significantly worse.  There are many tactics that they can try to stop the a. fib. and we're hopeful (more so than Dr. Desai seems to be) that they will be effective and buy us more time to wait for the perfect heart.  However, if they can't stop the a. fib. we are going to start moving a lot quicker towards transplant and they will accept an o.k. heart instead of waiting for a perfect heart because the longer he's in a. fib. the shorter amount of time they have to transplant him before he's too sick and its too late. 

Greg and I are really hoping and praying that they will be able to stop the a. fib. and put off transplant.  Not only do we want to wait for the perfect heart but we also just want to wait as long as possible.  Actually getting the transplant and all of the factors that come with it are terrifying and we hope to put if off as long as we can.  The doctors agree with us, but are basically saying that we're getting closer to the point where the benefits of the transplant outweigh the risks of the transplant.  We know that eventually that's where we're headed - its just scary.  If you pray for us, please pray that we would trust that God has the perfect time chosen and that he is in control.  It feels like this thing keeps spiraling out of control but we know that its not true - the hard part is trusting.  Please pray also that we would trust in God's goodness - and for the a. fib. to stop!

Thank you so much for being there for us,
Elise

In the hospital

Hello Everyone,

Just as the doctors predicted Greg was admitted to the hospital Monday afternoon because his potassium level was too low.  They've been having problems getting his potassium up while keeping his heart failure under control.  He's also still in atrial fibrillation - averaging 300 bpm in his atria but they can't address that issue until his potassium and fluid are stabilized.  Its Wednesday morning right now and we're waiting for the doctor to do his rounds and hopefully let us know of a plan that will get Greg out of the hospital!  Thankfully we had the date wrong for when he's speaking at Cru - he's actually scheduled to speak NEXT Thursday (Oct. 7) so hopefully this hospital stay won't interfere!  We'll let you know if we find out any significant information today.

Thanks for praying,
Elise

Update on Greg

Hello everyone!

The last few weeks have been pretty eventful with Greg's health and we wanted to catch you up and ask you to pray for us. 

Over the past month and a half Greg's body has become increasingly less responsive to the diuretics that the doctors are using to control his heart failure.  As his weight has crept up due to the increased amount of water he's retaining, his symptoms have also increased.  There is a diuretic that is very effective at keeping the water off of Greg but the doctors have been very hesitant to use it because it causes him to lose potassium - which increases his risk of arrhythmias (and has resulted in him staying overnight in the hospital in the past).

A week and a half ago during Greg's visit to the heart transplant clinic, the doctors realized that Greg has been in constant atrial fibrillation since the beginning of August (they detected this by downloading information off of his ICD/pacemaker).  Atrial fibrillation is an arrhythmia problem in which the atria and beating so fast that they are not effective at pumping blood into the ventricles.  This can cause blood to pool in the heart and eventually lead to blood clots, putting the patient at risk of stroke.  With Greg's atrial fibrillation going undetected for so long and his heart failure being severe, Greg is at a high risk of having a stroke.  The doctors immediately decided to schedule a heart catheterization for today so that they could gather more information on Greg's current heart function and determine how to proceed.  At this point the doctors are unsure if Greg developed atrial fibrillation (much like he had developed atrial flutter in March 2009) due to ARVD and the progressive nature of the disease which then caused him to retain fluid or if Greg was retaining more fluid which caused the atrial fibrillation.  These processes are very complicated and Greg's heart has so many different issues that there could be a variety of factors involved.

During today's heart catheterization, the doctors found that Greg's heart failure is very severe at this point - almost identical to what it was last November-December when he was first diagnosed and before they began to treat him.  Again, this is evidence that his ARVD is progressing because Greg is being extensively treated for heart failure and it is becoming increasingly ineffective.  His heart is in such bad shape that they decided they cannot allow him to continue to carry so much fluid and are going to aggresively diurese him again to remove the 17 or so pounds of fluid that he is currently carrying.  Greg is really looking forward to getting the extra fluid off - he has been having a lot of trouble breathing (especially at night and hasn't been able to sleep in bed because its so flat that he ends up gasping for breath), his exercise tolerance has decreased dramatically, his appetite nearly disappeared, and his energy really bottomed out.  The past two weeks have been almost identical to last fall and they have been awful for him.  The doctors will be using the diuretic that is effective at removing water but also removes potassium because it is the only diuretic that he can take from home that will work on him.  Unfortunately this probably means he will spend at least one night in the hospital this or next week so that his potassium levels can be brought back into a safe zone - though we are praying that he will be able to stay at home!  Staying in the hospital is always a bummer, but it would be worth it to get the water off and prevent more arrhythmias!

Greg started a blood thinner tonight that will hopefully prevent blood clots from forming.  It is a tricky drug to administer and Greg will have to frequently have blood drawn to make sure he's at a safe level where he won't develop clots but also won't be at risk of complications from bleeding.  Once Greg is back down to a "dry weight" at which his heart can function properly (and hopefully his symptoms are significantly lessened), the doctors will address the atrial fibrillation.  First they will perform a special echocardiogram to make sure that there are no blood clots sitting in his heart.  Then they will use his defibrillator to attempt to shock his heart back into a safe rhythm.  If this isn't successful they will begin to explore different medications that can help with atrial arrhythmias.  The doctors told us that even if the atrial fibrillation is fixed it could only be temporary and they will be constantly looking for any signs that it has returned.  Unfortunately this is something that one would expect to see as a heart degenerates.  It isn't what we hoped for, but it is one of the complications that can happen in a situation like Greg's.

This next week will be pretty full with blood tests and appointments to make sure Greg is safe and doesn't need to be admitted to the hospital for potassium or IV diuretics, and it looks like we'll be spending more time at the hospital than we have in a while.  This is disappointing (the semester is in full swing now and we are so glad to be on campus doing ministry) but we are grateful that they finally understand why Greg's symptoms have gotten so much worse over the past month and we are hopeful that they will be able to use the information gained today to get things under control. 

At this point Greg will continue to be a 1B exception on the heart transplant list.  He is still not at the top of the list and may not be for quite a few months.  There is such a huge need for organ transplants throughout the country and there are never enough for all of the people who need them.  So we're still waiting, and we're praying that we'll be able to put off the transplant for a long time (transplant is a huge ordeal to go through and is a very scary thing) - though with Greg's condition worsening it feels unlikely sometimes.

 
Greg is scheduled to speak at the large-group Cru meeting this coming Thursday and he is really looking forward to the opportunity.  The doctors were wonderful about scheduling appointments to make it less likely that Greg would be admitted to the hospital on Thursday but that is a possibility depending on how the week goes.  Please pray with us that Greg will be healthy enough to not be admitted and that he'll be able to speak at Cru - it is something that he is very passionate about (and gifted in!) and it would be really encouraging to him.  He's actually planning to share his story and what he's learned this year about Jesus being with us when we suffer. 

On a more personal note, we continue to grow in our ability to handle everything that's being thrown at us.  This year has been so overwhelming and so difficult, yet somehow Jesus has sustained us day-by-day and minute-by-minute.  We constantly fight depression and despair and the lack of hope caused by disappointment after disappointment.  Yet looking back to when the heart transplant "chapter" began, we can see how we've grown emotionally and spiritually over the past 8 months - though there is so far to go and each new issue with Greg's health brings new struggles.  We would really appreciate your prayers for us - that we would have strength and hope, and that we would really know and believe deep, deep down that Jesus will never leave us or forsake us (Hebrews 13:5).  Thank you so much for your continued prayers and support on our behalf.

Love,
Elise