It was a race today for discharge. The APN told me yesterday I would be good to go for today, but I needed to get labs checked and have my line removed before my appointment with Dr. B at 3. I knew I needed platelets too since you have to be over 50 to get the line removed and I was only 22 yesterday (<20 is normally when you get them). This is why it was a race, because they have to order them from the blood bank once you arrive, the infusion takes 20 minutes, then they have to recheck your platelet count afterwards. My appointment was set for 11 to start all this and they wouldn't move it earlier because they were booked solid. Then of course the blood bank was slammed and they were "out" of platelets...meaning they didn't have any that were logged in, so we had to wait 45 minutes for them to catch up logging in the new inventory. Things went pretty smoothly after that though and I ended up heading to get the line out around 2. No one was waiting and they took me right away, so we ended up at the Myeloma Clinic at 2:45...perfect timing, right? Wrong. They were so backed up and we waited FOREVER. We got a room pretty fast though, but when the nurse came in she seemed very skeptical that Dr. B would discharge me. Wait, what? She said my platelets had been too low and weren't "self sustained". Um, okay...CRAP. I was like, "but I haven't needed platelets in 5 days, other than for the line removal, and my number increased from yesterday to today". She kind of shrugged and said it could go either way, but the boss would decide. Boo. I looked up my labs from discharge after transplant 1, and my platelets were 27 that day and had actually fallen over the previous 3 days when I had been a blood transfusion....that didn't seem like "self sustained" either! Hmph. Today before my platelet infusion I had been at 24, up from yesterday, so it seemed I was in better shape this time around to go! But, alas, I'm not the boss, so we waited, and waited, and waited, and waited...then finally at 5:30 it was our turn. Dr. B said he would feel better if I stayed until Monday to check my platelets and CRP. Gah! I said we were disappointed we would have to change our Sunday flights, but that he was the boss. Thankfully he then offered a compromise and said he wanted me to get labs Sat and Sun, and if everything looked good the APN could let us go Sunday, so for now we are keeping our Sunday evening flights. YAY! So fingers crossed everything holds up for the next two days. I'm due to come back in about 4 weeks for consolidation, which will be the last long stay before I move on to maintenance!
The only good part about all the waiting was all the people we talked to in the clinic…so many nice people! Another person recognized me from the blog too, I'm glad so many people are finding it and reading! We also got to see the first patient who was given the experimental enhanced natural killer cell transplant. He was released from inpatient yesterday and so far things are looking good, only time will tell how it turns out but it's very exciting. They are lining up more patients to do it too. Sadly I also finally saw a patient who was younger than me in the waiting room, he looked like he was in his late teens. At first I thought he must just be someone's son, but then the nurse came out and went over his testing schedule. I really hope he kicks some myeloma ass!
Sent from my iPad