1/29/19 - Medicine Drama

I had a really good day today for the most part. The part that wasn’t good was the part when I urped up some of my breakfast this morning. It’s not like I totally barfed all over or anything. I always keep my food down. I’m doing good with food. Today, though, I was just really wild and crazy and got myself too worked up. In the mornings, I get my medicine at 8am and get tube fed after that. Later, after I have settle a little and we feel safe that my medicine has absorbed, I will eat food with a spoon, too. So, this morning when I urped up right after my tube feed, it was pretty scary because I might have urped my medicine up, too. Mom had left for work and Dad let her know what happened. I guess she was upset and scared about it, so she called my transplant team. They said not to re-dose my medicine, because it should have mostly absorbed after about a half hour. They said to be careful with my next dose at 8pm, too. So, Mom relaxed a little. It’s so scary though. I don’t think that people who don’t live our life really understand how important medicine is to a transplantee, like me. If my medicine, specifically the anti-rejection/immuno-suppression ones, gets messed up in any way…well, it could mean that my body attacks and kills my donor heart. that sounds dramatic, but it’s really that big of a deal. When ever I go to the doctor, I get my blood drawn so they can check my medicated levels and see if i’m getting too much or too little medicine to keep my immune system at bay. My immune system, the thing that is supposed to protect me, is my donor heart’s enemy. We have been really good about medicine since I came home, but its scary. One time, we changed my pharmacy and my one medicine got messed up…a couple weeks later, a cath lab to check up on my heart showed some rejection. That’s how quickly things can change. Well, anyhow, that is today’s short-lived drama. I’m good. I had so much energy and fun today. I think the new food is really doing the trick. -Heath

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