It has been about a month since I have started drug treatment for chronic graft versus host disease on the liver and overall things seem to be working out slowly but surely. My liver enzymes have been going down and we are starting to taper off some of the high dose Prednisone from 120mg down to 80 mg daily. Since I have been on this drug I have had issues with sleep patterns, dry mouth (which could also be a symptom of GVHD), and overall skin puffiness. I am only averaging about 5 to 6 hours sleep a day, but at least I am sleeping through that time, just waking up early. For those of you interested in the nitty gritty numbers, don’t forget I am posting on my About Page all my lab results, usually once a week.
The last doctor visit went well. I am pretty much off any restrictions that I had previously. I just have to continue good hand washing and cleaning and just being aware of surroundings. But I am good to go for all activities now. I will be able to bike ride, hike, garden and mow lawn again and play softball. The extra cautions I do need to follow is to use a lot more sunscreen, wear a hat, and try not to stay in sun too long. Another bone marrow biopsy will be scheduled in the next month or two.
It has also been about a month since I have been back to work. Luckily, I am able to ease back into work by taking every Friday off, working from home one day a week, then working at work the other three days. And with the bad weather we had a couple days off anyway or I worked from home. I would like to thank everybody at work too for understanding my situation. I know some of you have been sick and kept a distance. Work has been good and with my fatigue issues I have basically turned into a early morning worker because I am dead tired by around 3pm. But I would rather be thinking about work things instead of whether the contestant overbid on the showcase on The Price Is Right 😉
The last thing that is working out is my work outs. I am still riding the exercise bike everyday and now I have incorporated those rubber band things. Since I am waking up so early, it’s a perfect time to stretch before breakfast. It’s amazing how quickly you can start working up habits once you put your mind to it. For example, I wash my hands 15 or 20 times a day, but it is so much of a habit now it is not even noticed. Even little things like not touching your eyes and face all the time or using your elbow to push open a door instead of wrapping hands around dirty door knob are now second nature to me. So hopefully as the sunny weather comes using sunscreen, wearing gloves more when I garden, and just being aware of outdoor dangers will also become a habit.
Next doctor visit March 18, look for a post soon after that.