60 days post transplant
Yesterday was Day +60 from my bone marrow transplant (BMT). We’ll retest my chimerisms to see how well the engraftment is going and hopefully see some improvement in my T-cell percentages. My platelets have dropped a bit so there has been some testing to see if there are any underlying viruses that might be attributing to it. Most of my other numbers are holding steady so the doctors aren’t worried enough to do a bone marrow biopsy an earlier than still Day +100.
One other thing we are monitoring are my liver enzymes. They are slightly elevated. It’s been difficult to tell if it’s because we stopped one of the meds that was specifically for that purpose (stopped it due to a potential side effect), or if it’s for another reason. With my liver enzymes rising and my platelets dropping, they’ve been running some additional blood work to see what might be the cause. Just one more thing in the long list of running issues.
Overall, I feel decent enough. I might even say that there’s moments when I can momentarily feel good but for the most part I feel ok. Nausea is always an issue. It’s greatly subsided from my time in the hospital but it can still leave me feeling uncomfortable and nervous. I will generally avoid taking some of the anti-nausea meds to see if it gets any worse but if I have a clinic appointment, I’ll definitely take something prior just because I don’t want to be stuck out and feeling awful.
I will walk almost everyday, sometimes twice a day. I get some exercise on most days as well. I call it “exercise” instead of working out or training because it’s about one fifth the weight and half the time of what I’m used to doing. I miss training with some regular intensity, but the doctors have multiple concerns before I’m fully permitted to lift heavy again. Between how I would or wouldn’t recover between sessions and what that lifting might do to the graft vs host disease and how that affects recovery are some questions we’re not really ready to test yet.
I am still under 24 hour care. I can’t drive myself anywhere and technically shouldn’t be without a caregiver within 6 feet of me at all times. The doctors are lenient with this one in the regards that my caregivers don’t have to be within 6 feet but I have to always have someone close by (within the house at least, I can’t be left alone), in the unlikely but still possible scenario that something could go wrong. Technically I won’t be cleared for any of that until at least Day +100. Even then I’m not sure what my quarantine situation will look like. I won’t be able to start getting any of my original vaccines until at least 6 months and that takes time to get all those. We really haven’t even considered what it’ll look like after Day +100. Hopefully, we’ll at least be able to go on a short trip because for now, I’m limited to a 30 minute drive (it’s mileage based but I don’t remember the exact miles) from the hospital.
I will say that I’m not depressed or angry. I do get quite anxious or nervous around clinic visits but I do enjoy being home more. I miss work though. I do miss being in the gym. There’s a lot of my old life that I do reminisce about. I do quite a bit of different things to help control my mental health. These changes I’ve gone through over the past year have not been easy to deal with and I still struggle with everything that’s going on. Everyday I write down three things I’m grateful for. This helps keep things in perspective and reminds me that I have a lot to be thankful for. I’ll also write down one thing that I’m looking forward to either for that same day or the next day. This reminds me that there’s something coming up that brings me hope, happiness, or excitement (or all three).