Day 17 Post Transplant

Today is day 17 post transplant. While I think I've had an easier time than most people, it hasn't been easy. I'm finally starting to feel a little better today. 

The worst part about the transplant so far was losing my vision for about 5 days. It turns out that I'm allergic to compazine (an anti-nausea drug). We're talking, pretty much total loss of vision (people's faces looked like blobs and there was nothing to watch or look at without getting really depressed. Once the doctors found out what was going on, it took about 48 hours for the meds to wear off and I've had my vision back ever since. 

I had one pretty terrible day of mucousitis that required pain meds, but I upped my game on the saline rinses to where it felt like my tongue and throat were just swollen and sore for a few days. I'm still getting used to not having as much saliva, an effect from the radiation they say should go away with time. On top of all of that stuff, I caught a cold which is probably kicking my butt a little more than it would my healthy self. 

The effects of radiation keep popping up here and there. On my skin, pretty much any scar I ever had has reappeared to some likeness. My ears and lips are constantly peeling, and then there are elevated liver and kidney function results. Everything should subside, but it's amazing to me how powerful the radiation is. Sadly, not too long ago, the dosage was much higher while they were trying to figure out the right amounts. I guess I can deal with looking like my hot mess self when I get out of the hospital- I've got a good enough excuse, right?

I started showing signs of engraftment syndrome about a week ago (not the same as graft vs. host disease). Most of my body broke out into a rash that wasn't painful or itchy, but definitely added to my latest look which includes mostly no eyebrows or eyelashes too. I'm on prednisone which has helped the rash to go away. The good news to come out of the engraftment syndrome- ENGRAFTMENT. As of today, I have 380 neutrophils (1000 neutrophils is a low but functioning immune system). I can be discharged around 500 neutrophils, so there is talk that I could be discharged Monday or Tuesday. I'm taking all of my pills by mouth and self reliant for hydration now, so we just need those neutrophils to jump in a little more so I can get out of this joint.

This doesn't mean I get to go home home yet. I'll have to stay within 30 min of the clinic while all the kinks get worked out with my new immune system. It does mean fresh air though, company, and more space to visit when the Rembot comes out. Hopefully starting to feel a little more like myself again. 

This whole process has been just as hard as I imagined it would be. Most of the time, I try to sleep through it, pass the time as quickly as I can. I miss my family. I miss my life. Don't get me wrong, I'm still hopeful for the future, but I can tell this transplant has taken a toll on my body, and it's a little scary to not know when I might feel really good again. There are still plenty of days to go and rest and recuperate, but when I'll really find my stride again, I'm not for sure. 

I wanted to take some time and provide a little update. Trying to keep my eyes on the prize of discharge next week and preparing for Remi's birthday coming up in a couple weeks. Disney on Ice is conveniently in town that week, and I'm hoping it'll be as great for her as it was for me back in the days of girl scouts. 

Until next time....