Hi Elaine. Congratulation on your transplant! Sounds like you’re doing really well and progressing nicely. I just returned from Mayo-Rochester 2 days ago after having a routine check in with the BMT-team. Always feels like we’re returning to the Mothership when we drive into the city. We can’t speak highly enough of the outstanding care and treatment I received while there...and it continues just as earnestly with follow up.
I’m at Day 476...about 15.5 months post transplant~late June 2019. DefiniteIy experienced the lovely and somewhat lingering side effects of the earlier chemo for AML and the conditioning for the transplant for the first few months after. All of that has completely disappeared and I am feeling 98% like my former self! Walking around 7 miles or more per day, energy has returned to normal, desire and ability to eat has made a welcome comeback! Yay!! Nausea was pretty routine initially; handled nicely with the meds. Looking back on the little journal I kept, the nausea lessened after the first month and was pretty much gone around day 60? But I had little appetite and food tasted like cardboard for several months. Anything spicy or too flavorful gave me heartburn and didn’t appeal until after day 100-ish. I remember asking my team if I’d ever be able to eat pizza or tacos again. They laughed and assured me I would but I remained doubtful at that time! LOL. They were right, as usual...😉 I had no other intestinal issues. Everyday I had a cup of yogurt mixed with ground flax throughout all of my AML chemo/transplant recovery. Seemed to really keep things calm in the ‘nether regions’. I’ve put some much needed weight back on and my hair is growing. I no longer look like a character on the streets of a Dicken’s novel. 😂 I also think daily walking/exercise is key to recovery.
Not wishing to go into great detail on this open forum as Gretchen and others are just coming up on transplants. Each of us have our own experience so I hesitate to be specific. Just as I told Gretchen, there were a couple of ‘less than peachy’ days but they were brief and quickly taken care of by the most empathetic care teams. But most of my post transplant was what my doctor referred to as, “unremarkable”. I was happy to be considered boring! LOL Experienced no GVH issues until late October last year when we dropped the tacro level. Then I had some tendonitis develop in both hands and wrists. A quick burst of steroids handled that situation. There have been a few other occasions but again handled quickly and are gone. We Chimeras are a hearty lot. Since there is little predictability how each of our bodies will react, it’s important to keep a sense of humor, sense of adventure, and a positive attitude!
Feel free to contact me with a private message through this forum. Then you and I can chat about whatever you’d like to know. Stay safe!