1/5/19 - 1R
Today was a very hard day…the hardest since my hospital stay. Last night, before bed, my doctor from transplant called to talk to Mom about my cath lab results. She went on to tell her that my biopsy had come back and that there was some rejection. The “R” word.
I don’t think there is a thing to hear after everything that we have been thru; that I have been thru. It was also very confusing. One thing that I think the hospital team is poor at is being forward with my parents. It’s too bad that everyone is so worried about liability, to be frank in their conversations. So, it makes it difficult and confusing sometimes, when thing like the “R” word happen. It’s confusing when you can’t get a strait forward answer, reason, description, “what to do now” or “what does this mean” answer. Very frustrating, scary as heck and hard on the heart (in the figurative sense). Anyways, Mom was absolutely a mess and it was really hard on Mom and Dad last night.
We waited to calm down and think clearly thru this. Mom called the hospital this morning and got more information and this is what is going on. I have a good functioning heart. The “numbers” from my cath lab looked good and showed that my heart is doing it’s job. The small piece of tissue that they took from my heart, though, showed some “Cellular” rejection signs when they looked at it under the microscope. This can mean a million things. So, to start, I have 1R level rejection right now. Mild rejection (1R). The cellular rejection levels, in laments terms, are such: (0R) is no signs of rejection and essentially means that your body doesn’t recognize the new heart is there; (1R) is mild rejection and means that my body now recognizes a threat and is just thinking about what to do; (2R) is when your body begins attacking the threat, the new heart; (3R) just plain bad news. So, as far as my rejection (1R), some hospitals treat 1R, some don’t. Some hospitals think 1R is better than 0R because it means that you’re not being over immune suppressed. In my case, my hospital does treat 1R. I will be doing three days of heavy Prednisolone doses. This is to essentially wipe clean my immune system and stop things from progressing. Apparently, 1R is something that will happen to me more than once and we are supposed to relax. It’s very scary regardless. -Heath