30-days post transplant update

It's hard for me to figure out where to start when it comes to these updates because SO MANY things happen during the week.

The last post I wrote was on Saturday after my first thymoglobulin infusion as an outpatient, and I was feeling miserable.  Luckily, by Sunday, I was back to feeling more like myself.  I had another horribly long day on Monday, with labs, plasmapheresis, doctor's visit, thymoglobulin infusion and IVIG infusion.  All of those procedures required us to spend the night in Rochester, but we stayed at a Fairfield Inn this time which was MUCH better.

I had prepared to feel absolutely awful on Tuesday like I had on Saturday, but I felt completely fine.  On Tuesday morning I just had labs and then we headed home.  Once home I went to visit my friend Julia just for some normalcy in my life, and I was lucky enough to get in with my stylist to update my 'do (sorely needed).  It was just a decent day.  But then I looked at my lab results and I just knew something wasn't right.  With the first dose of thymo, my protein had dropped from 2500 to 450.  Sunday's labs showed that it was at ~800, and Monday it was at ~1000.  By Tuesday it was ~1100.  I had expected it to plummet again on Tuesday after the thymo, but the fact that it went up just devastated me because it meant something wasn't working.

I went to Mayo yesterday expecting to do labs and plasmapheresis, but at the end of plasmapheresis, the nurse sent me up to the 10th floor because my PA wanted to see me, and at that moment I knew it wasn't good news.  Turns out my doctor had decided to do another dose of thymo that day, but couldn't get me in until 1:45pm.  I found out at 10:00am.   I was absolutely livid.  I mean, I have gone along with EVERYTHING they have thrown at me, but this particular last minute decision really bothered me.  I mean, what would they have done if I had decided to drive down to Mayo by myself that day because the only thing that was scheduled was plasmapheresis?  Thymo infusions require benadryl for pre-meds, and I wouldn't have been able to drive home.  All of my meds for the next day were a home...I had no clothes with me or anything.  I kinda lost it on my PA and requested my doctor to come over during my infusion so we could talk.

I understand that nearly every decision that's being made right now is based off of a lab result, so it's nearly impossible to predict what's going to happen, but I believe they always planned on giving me  doses of thymo, and they just forgot to tell me in this case, and I find it completely unacceptable.  Hopefully, after our conversation, we've come to an understanding about how important it is to over-communicate right now.  We also talked about the need to come up with a long-term plan, as Annika is scheduled to fly home on Tuesday, and I'll need to find some volunteers if there are any plans for longer infusions in the future.  My doctor talked about finishing up the testing to get me discharged from the transplant center (just a formality) but it includes things like a bone density scan, and 24-hour urine for baseline and a couple of other things that will start happening next week.

Annika and I didn't get home until 10:30 last night.  That was a 17 hour day.  I'm pretty sure those aren't ideal conditions for me to heal, and I did feel pretty awful last night and this morning when I woke up.  I had a fever of 101.6 so I just stayed in bed until 12:30pm this afternoon.  I got up and snacked a little because my appetite is still pretty paltry, and took a walk around the neighborhood.  Since all I seem to do is lie down and have plasmapheresis and infusions, my bowels have slowed to a crawl so I need to force myself to go out and walk to get things moving.

I have no idea what tomorrow holds.  I know there are labs and plasmapheresis, and I think a visit with the team, but no idea what else.  Please keep your fingers crossed that it's a light day and that I make it home a decent time.  The plan is to have 2 whole days at home this weekend too. so that all be great if it happens!