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September 24, 2010 - Worsening Heart Failure Despite Treatments

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 are 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 aggressively 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

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