Day +37 and +38

I was discharged on day +28, but I found myself back at 8NE on Saturday for a fever. I enjoyed 8 days at home with no major events, just getting back into the swing of things and trying to get settled into a routine. Tougher than I thought to fit in three good meals, strict medication times, visits to the clinic, and 4 hour IV-infusion for magnesium. The first days out of the hospital were a blur: I think I was just tired from not getting the best of sleep in the hospital and then being more active at home. You don't realize everything the hospital does for you until you get home and you're pretty tired already by 10 am from walking around, prepping breakfast, playing with Alpen, etc. Even though I walked a mile each day in the hospital, I am still surprised by how weak I have gotten in the legs and the upperbody. I know it would have been so much worse had I not been able to walk at all, but I thought it wasn't going to be so noticeable. It's also a good example of how training on flat just doesn't prepare ya for the Seattle hills. Goal for next week is to start-up my PT exercises at home.

This latest flare up of a fever is thought to be caused by GVHD but they can't rule out a line (blood) infection until the blood cultures come back--which takes 48 hours. So minimum I have to wait til then to get dicharged (Sunday afternoon). But many of the providers think this looks like GVHD and prednisone should be able to handle it. All my counts have dropped as well, which can happen when you have a fever, either caused by an infection or GVHD. My team mentioned, "this is the game we play now for the rest of transplant, figuring out whether issues are an infection or caused by GVH" It's a tough game: symptoms that look the same and GVHD seems to have to have no limit for potential issues it can cause. I've already had skin rash, fever, blood count decline, but it commonly hits the GI tract and the liver at this stage as well. Then there's a third villain, CMV, a virus that lives in 60% of american's stomachs, and remains in equilibrium in a normal immune system. I had it before transplant, so I still got the virus swimming around in my gut. But it's not as common in Europe, and my donor did not have CMV, and thus her immune system she passed me doesn't have any built in protection. This is a common issue with transplant and even when CMV immunity matches, the immune system is so weak in the beginning that the patient often needs to have their CMV levels monitored. My CMV levels have been rising, which could be adding to the drop of other blood counts. And unfortunately, the steroids used to treat the GVHD, suppress my young immune system, and make me more susceptible to the CMV. Can't really win. always something. I'm sure I'll be posting more about the CMV later on, as my CMV journey is just starting. Anyways, now it's Sunday and I'm getting out of the hospital! So ordering my last lunch and waiting for a bag of saline to drip in, then I'm free to go. So pumped to get home tonight and celebrate Christmas eve with Bree and AlPal, Mom, and Dad, and Jonathan. And I'll be able to fall asleep with the snow falling outside watching from in my own bed. (yes, for some Christmas miracle this year, Seattle is expected to receive snow starting this afternoon and continuing through the night). As a city that gets a handful of snowy nights each year, it feels incredibly well-timed for that to be this one night.  Doubt it will stick around much, but that's fine: keep the roads clear and the sidewalks safe. Unfortunately, I still have to go in for a blood draw and nurse review tomorrow morning to make sure all the systems are still doing alright. But much better than waking up in the hosp! Then we'll continue our journey north to my parents spot in Edmonds and spend the rest of the day up there with them. Merry Christmas everyone!