5/2/18 - How am I?
Friends and family ask frequently, "How is Heath overall?". So I'll tell you a little about me today. I am well, not good, but well. Although I look quite good right now and feel good, I am a very very sick little man. I am still in critical condition, but I am stable for the most part. I look good right now, thanks to medicines that keep my heart going. I get two "big deal" medicines in my IV...the first is something called Epinephrine. Epinephrine is used to stimulate my heart to beat faster and work harder. The other is called Milrinone; that works to increase my heart's contractability and decrease pulmonary vascular resistance (relaxes my vessels, etc...) so my heart can move the blood thru my body easier. I also take many other medicines every day that help me survive with a poor heart, grow and keep calm. Something else (that indirectly helps my heart) that I get thru my IV, is called Bumex; it helps my body get rid of excess fluid. I am in what is called, Heart Failure. Heart failure does not mean that my heart doesn't work...it means it isn't pumping strong enough. My body can't move blood through my body very fast and that increases the pressure in my heart. So, that means by body can't pump enough blood [that supplies nutrients and oxygen], fast enough to my body when it needs it. The chambers of the heart my respond by stretching out to try to hold more blood to pump through my body; eventually the muscles can't take it and they will get stiff and thickened. This helps to keep the blood moving, but my heart's muscles eventually weaken and can't pump efficiently. As a result, my kidneys respond by causing my body to retain fluid (water) and salt. If fluid builds up in my arms, legs, ankles, feet, lungs or other organs that is a bad thing. So i get that Bumex constantly to help keep fluid down, so my organs can function (two stickers, one on my side by my kidneys and one on my forehead, have cords attached that plug into a monitor and they track my kidneys by following my renal numbers). So, all-in-all, my broken little heart is not doing much work, but it is doing enough [with help] to keep me alive. I still need a heart transplant and am waiting for that day. I am not strong enough to be off the ventilator and breathing on my own. The ventilator is taking stress off my heart by changing the pressure in my chest cavity...to be very general: imagine if you're breathing you're pulling the air in...with the ventilator, it pushes the air in. That helps my heart not have to do as much work to help my lungs function. I also, would likely die without my medicines. Medicines and continuous monitoring and changes to my care keep my alive everyday. I take lots of medicines and am very cautious with everything everyday, trying to avoid crashing. I don't ever want to go back onto life support (ie. ECMO or VAD or ?). Bad things will inevitably happen if I have to wait too long, so we pray every single day that I will get my gift sooner than later and that surgery is still an option at that point, too.
Please keep me, my family and my someday donor's family in your prayers tonight. Pray my heart gift comes soon. Thank you guys for all the kind words in your prayers and letters. They make me smile every day; honestly.