****Comments will be deleted. Today is rest after infusion day. ****

Second infusion was yesterday. Protocol has changed as to opening the port with heparin now to opening the port with saline. Saline doesn’t work with this MCAS body. When I asked for Heparin they said no. I understand that because protocol has changed and they can’t reverse it. What it turned out was though they have something they call a TPA where they put a little Heparin in the port and let it sit for half an hour and then see if they can get the blood draw that they desire that means the infusion is safe.

The downside was workers who wanted to prove they could get it with saline and didn’t tell me that there was another option until we were almost an hour in. That was exactly what I was trying to avoid on this round.

We had an anti-nausea and steroid infusion first while we were waiting for the TPA to work. These had to be done in the infusion area of course. We had to go get a blood draw with the 1 phlebotomist that knows me vessels and it’s a quick easy draw. She was quite busy so I had a wait.

Then I’d requested extra blood be drawn to name my bleeding disorder so that would be in my record instead a 5 minute verbal explanation each time. My doctor (who is on the Hillman team) is a hematologist and oncologist so she was very on board with getting a name. This required 5-6 extra tubes for total of I believe 10. Donna the phlebotomist was a little worried. I wasn’t. It was fine.

Results were a go for the infusion. Bleeding disorder results in about a week.

ETA: the infusions are only

1st 30 minutes

2nd 10 minutes

3rd 1 hour

Thus my frustration with unnecessary extra time foisted on us. We left later than 3 weeks ago.