The last time I was discharged from the hospital was May 27. This is the first time I’ve gone a month without being in the hospital since before I was diagnosed. My electrolytes have finally balanced out and I don’t have to do IV infusions every night anymore. I also got to stop 2 of my regular meds – one for nausea and one that was addressing the “sludge” that built up in my gallbladder from all of the nasty drugs I was on. I’m now down to 50 mg of steroids every other day (started on 40 mg every day) and weaning by 10 mg every other week. If nothing goes wrong I will be off of them Sept. 1.
In other news, my 8th central line failed me and came out of place only a few weeks after surgery. I had to get another new one last week 😦 I am still doing photopheresis but should be able to stop once I am off of the steroids, which means I can get my line out. I am still waiting for my immune system to reconstitute fully but being off of the steroids will be a huge step in the right direction.
I have nothing else interesting to say but it has truly been a joy to start to see the light at the end of this treatment plan. There was a long time where I felt like these days would never come.