Adam’s Story

Site created on May 10, 2020

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Newest Update

Journal entry by Heidi Clary

Hi everyone!  It has been a while since I have written an update, but this seems like a good time.  Our journey has been long, and it is still far from over.  Overall, Adam has been doing well, but we have had a lot of hurdles to overcome.  Our weeks are filled with numerous doctor appointments and therapies, as well as trying to balance work (Adam works from home and I go into work), the kids school work (the girls are virtual and Easton attends school), celebrating big events in the family (The twins turned 8!!!), and making sure to find activities to spend time as a family (the pumpkin patch was our most recent adventure!).  It often feels like we have so many appointments, meetings, activities conflicting that I am sometimes surprised that we are able to balance it all!

Adam had an appointment for an ECHO, where they would be able to update us on how his heart was doing, and what is Ejection Fraction was.  A normal person has an EF of 55-70%, and anything under 40 is considered heart failure.  We thought he was getting better, so his EF would be higher than the last ECHO (the last echo was 25-30%).  Unfortunately, the news we got was not what we hoped.  His EF was 27%.  This just means that his heart is not pumping as much as it needs to be.  
They showed us the ECHO and we got to see the part of the heart that was moving the way it should, and the part of the heart that wasn't moving.  Because it is muscle in the heart, it can not be repaired.  Based on this information, they recommended that he get a defibrillator.  We went for the consult for this, and they told us that they wanted to do an MRI first, to see where the damage was in the heart.  This would help them recommend the right device.  When they got the results, they recommended that he get a traditional defibrillator with a pace maker.  The first two lines would be the defib (so if his heart stops, it would shock him and restart it), and the third line would be the pace maker CRT, which would be able to put his heart back into rhythm.  They were very honest with us at the consult, and told us that there was a good chance that the third line (pace maker) would not work because of the extensive damage to his heart, but they wanted to at least try.  We remained hopeful that the pace maker would work.  If it worked, he would feel better almost immediately,  and it would make his heart stronger.  
On our way from leaving that appointment, they stopped him to tell him that they saw something else on his MRI.  He has fluid sacs on his lungs.  Over the past weeks, he has had a lot of difficulty breathing, and has woken up during the night gasping for air.  This, of course, has led to mostly sleepless nights.  His oxygen was always still good though, so we could not figure out what was going on.  This explains all of that.  His lungs aren't able to fully expand.  So, they scheduled an appointment on October 6 to drain that fluid.  When they do that, he will almost instantly feel better!  
We were waiting to hear from the doctor about scheduling the defib.  On Wednesday afternoon, they called Adam, and asked him to come in the next day!!!!!  We spent the evening getting everything together, and arranging everything for the next day.  He got the surgery done yesterday.  As much as we had hoped that the pacemaker would work, when they called me after the surgery, they had to give me the news that it had not, in fact, worked.  They got the third line in, but it was not going to work with where the damage is in his heart.  This news, although kind of expected, was devastating.  I once again found out that ugly crying into a mask is gross (ha).  
Adam did well during the surgery though, and was in recovery within an hour of the surgery ending.  I was able to stay with him for a couple of hours, which was nice. He was doing well, although he was in a lot of pain at the incision site.  He stayed over night in the hospital last night, and was able to come home this morning.  
Since he has gotten home, he has been sleeping.  The incision is causing a lot of pain, and he is exhausted from the surgery.  
So, what are our next steps?  We will continue working with the cardiologist on taking medications and doing anything possible to help strengthen the heart.  He is taking some medications that have the possibility of increasing EF, but they often don't help increase that until they have been taken for 3-6 months.  He is pretty much right at the 3 month mark, so we still have hope that some of those medications will work.  We will also keep an eye on any new research and new information about heart failure that comes out, in hopes that there will be something that can help Adam more!  Adam also goes to cardiac rehab 3 days a week, and will continue this until the end of November.  
Also, one of the "big dates" we had been looking forward to, is coming up soon.  They had told us that for a lot of things (physically), that he would need 2 days for every 1 day in ICU.  Based on that, we still have another month ahead of us before we even reach that point.  This puts it into perspective.  We want things to be better now, but it takes time.  Patience isn't what we have a lot of sometimes though :)  
Please continue to pray for our family and to pray for Adam.  Although I often think the kids are resilient, I have seen a lot of things that make me realize that they have been through a lot as well.  We are working through this with them though, but I know it has been really hard on them.  We are trying to realize that this is a marathon, not a sprint.  We DO know that, but it is hard to remember when you feel like you are not even half way through the marathon!!!!  So, please continue the prayers for Adam.  We are not done with our journey yet.  Some days I feel like we are killin it over here, and other days I feel like we are going to be lucky if we keep our heads above water.  Regardless, I know that we are extremely blessed that we are home together as a family.  Last night was the first night since the end of June that Adam has been away from us, and we did not like it at all!  
Thank you to everyone who has reached out to us to offer help in any way, to offer to pray for us, put us on prayer lists, or just to check on it.  We truly appreciate everyone!!!!
Hopefully the next update will be a really good one where we can celebrate a stronger heart, better EF, and great results on an ECHO!

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