Feeling good

I saw the doctor on Friday, and my numbers were actually slightly up from last month. I’ve also been feeling noticeably better and a little less short of breath recently. We usually do 2-3 weeks of IV antibiotics, but since this didn’t seem like a full-blown exacerbation and I was feeling decent, we decided to set me free. The nice thing about the port is that setting me free is a far less weighty decision, because if we decide I need more hydration or antibiotics we can easily re-access the port and resume treatment at any time. I am SO glad I decided to get it!

I’ve been feeling pretty good for me, and have been walking and tolerating activity better than I was a few weeks ago. The biggest issue right now is exhaustion. I’m still on prednisone, which has been making it difficult for me to stay asleep. And of course I didn’t sleep well while on IVs, because I had to run infusions every 8 hours. I recently realized that between hospitalizations, rounds of home infusion, and prednisone, I haven’t gotten a full night’s sleep on any sort of regular basis in 2 and a half months. I’ve also been having uncomfortable bloating due to the prednisone, which isn’t helped by the fact that prednisone is also giving me the munchies. So I’ve been exhausted and uncomfortable, which is super fun. Fortunately, we finally started tapering the prednisone down this week, and hopefully things will get better as I move to lower doses. Unfortunately, we have to taper very slowly; partially because I’ve been on it for so long, but also because I have a history of falling apart as soon as the prednisone is stopped. Here’s hoping it goes better this time around.

I survived my first day back at pulmonary rehab! More than survived, actually; my heart rate was significantly lower and more stable on Monday than it had been the previous weeks. We’re definitely easing me back into things, but I am feeling better and expect it to go well. And hopefully I won’t cause any more dramatic scenes any time soon!