7/9/18 - Fighting My Demons

First of all, last night and into today, I have been having pretty rough bouts of Delerium and what we have decided are Opiod withdrawals. I “wake up” out of a nap and without opening my eyes, begin to thrash about and cry. It takes everything they can come up with to calm me down and keep my numbers within a safe range. Sometimes, they don’t...sometimes my blood pressure sky rockets. That is terrifying to my family because I am on blood thinner medications for my Berlin Heart LVAD. When my blood pressure gets up high for extended periods, I am at an even higher risk for a stroke or another major event. I’m also more swollen looking today. Like I have edema in my face, arms and legs. It’s worrisome. We pray this delerium passes with the decrease of the heavy medications they are trying to wean me down from now and that I can be more comfortable. Being “addicted” to opioids and other medicines is no joke, but it is in the normal day-to-day for heart failure patients like me. The staff here will help me get this figured out, but it’s hard for my family to watch. Hard for me to go thru. Hard for the care team to see, too. Every patients body reacts differently to situations like mine... I did have a nice period thru the day this afternoon. Mom and I played. I was looking into my mirror and hitting the little fishy that was dangling underneath. Mom and my girlfriends were very impressed. I’d never shown them that I could do that before...like, that I could really think about doing something and then repeat it. I would look at the fishy, raise my eyebrows and concentrate. Then, I’d lift my hand up and swing it out to hit the fishy and then do it again and again. It was really fun, actually! I think I hit it like ten times or more? I did something new and everyone was very proud of me. I was very “high” on medications all day today and as sad as that makes my Mom, at least I was “happy” enough to play like that. 


So, I’m not sure what tonight and tomorrow will bring. My family, caregivers and I, are all stressed out today. Ready for some good times, soon! In other news, I had another ECHO today and things initially look good. I’ll learn more tomorrow about what they saw from that. Do you want to see my heart? It’s kind of neat. There are four chambers. The chamber that is not working for me, is the bottom right dark space in the picture. That is my left ventricle. My left ventricle is all stretched out and damaged. We don’t know how or why. I wasn’t getting the blood my body needed and I wasn’t doing so hot a week ago. So, they hooked me up to this a Berlin Heart. A Berlin Heart is just a name brand for something called an LVAD (Left Ventricular Assistance Device). That’s what I needed to be somewhat normal functioning...left ventricle support. So, now that I’m getting the support from my machine, I have pretty good blood flow and semi-“normal” heart function. It’s a lot more complicated than that, but that was a run down in layman’s terms. Anyhow, heres a picture from today: 


Anyhow, I am exhausted and haven’t slept well for 24hrs. I need rest and am going to try so hard to have a good night. One of my favorite girls is here for the night to help me, so we will get thru this. They will probably do some medication adjustments, make Changes to my Berlin Heart settings, and try other things...the care team is great and will figure me out soon. They care about my safety. Please pray for me, my family and my someday donor’s family, too. - Heath

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