7/23/18 - A World Of Constant Fear

We do. We do try our darnedest to stay positive thru the adversities that challenge me; my family and I. Although that task, if you will, is never easy. Staying positive while God, or whomever, is trying to rip your life away? I suppose that is a harsh way to put it, but this IS all very harsh. My world is a world of constant fear right now. I worry if my heart will beat at all one day, if my lungs will breath for me the air that gives me life the next day and then the following day...that day is today. Today I fear that a rouge clot will give me a stroke, brain damage or kill me. It's very hard to keep faith or be positive at all. So, the little I have is getting me thru. Getting us thru.

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Today started out a as what we would consider a good day. I look better. The edema has went down. I had a peaceful night, my numbers improved, they stopped pacing my heart and we had big plans to move forward today. The first order of business was to test my strength. Let me explain: When I got onto ECMO this second time, it was under different circumstances. The team rigged me up with something a little different than what I experienced in Madison, at the children's hospital there. ECMO requires an IN tube and and OUT tube. The blood flowing in goes to the top of my heart and the blood flowing out comes from the bottom of my heart. They would usually just have the OUT tube come out of the one ventricle. For the ECMO circuit that I needed, I had two OUT tubes (one from each ventricle). They do this to help regulate heart function as well as help to prevent blood from pooling and forming clots. So, today the care team wanted to go in and clamp the one OUT tube and see if my heart was doing enough work to go without it. They watched my heart with the Echocardiogram machine while testing it. That test was a success. My heart was doing enough work to have the one OUT tube removed. The second order of business for the day was to try to get me completely off of ECMO. They would wean me down and watch my numbers; that was also a success. My family, my care team and I are all absolutely thrilled that I am off ECMO for now and hopefully forever! I'm not sure if you fully understand, this means that my new heart's function has improved! A miracle! My new heart is strengthening! Absolutely great news! News that would soon be spoiled...

A big nasty clot spoiled my happy news, of course. I can't win. It was a bad clot, not from ECMO, and the care team thought it necessary to ship my to OR immediately to have it removed. This involved another open heart surgery. Another time under anesthesia, onto and off of by-pass and putting my life at risk. They took me back to the OR, opened me up and couldn't find the clot. It had already moved. Originally, it was somewhere near my Aorta (Mom can't remember exactly what the surgeon said...but that's about the right location). It was a very concerning and surprising clot. The surgeon that did my heart surgery was the one to see it and he said that he's never had this happen in his entire career! We have no idea why it formed where it did, how it moved so fast or where it went to. The good news, since it moved, i didn't need to go thru the open heart surgery and just had an open chest, exploratory surgery. The bad, very bad, news...this clot is in my body somewhere and it's dangerous. Clots from that location can travel many routes. It could have traveled to my legs, liver, brain...if it goes to my brain, I could and will likely, have a bad stroke. I could come out of a stroke with brain damage. I could also die. This rouge clot is no joke and now my family, care team and I will live in fear until it rears its ugly head or time proves it has dissolved. I am on heavy blood thinners right now, which could help. Being anti-coagulated is a good thing in this case. I hope this clot will just disappear and we will have nothing more to say about it. Please pray very hard for that for me!

So, this is where I stand. A lot of good, even great things, happened today. I'm so thankful to be off of ECMO! Yay! Please pray very hard for the clot situation and that it doesn't become a "situation". Pray very hard for me! Please also pray for my family. My Mom is working thru some PTSD that came back from when I was born and seeing me on ECMO again, Dad is away for work and it eats him up that I am going thru all of this just Mom and I, and my family is all praying that I get to come home soon so they can finally meet me after thinking they had lost me just a few days ago. It's been a rough, rough few days. It's all nothing compared to what my donor family has endured, though. Please continue to pray for them and hope they find peace in all of their heartache. We are so thankful for my heart gift, regardless of the downfall after my transplant, and one day when things are better, my Mommy will help me come up with a very special blog to thank them. We may not ever know them, but they gave me the biggest gift. A selfless gift. -Heath

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