So first thing is today I got my Perma-Cath out (port that I needed for the plasmapheresis) I was told I would be sedated for it due to severe anxiety so I was already very anxious waiting to be taken down but thankfully I got dad to come and enjoy our bacon-date while we wait for me to go down. (I was NPO but he still enjoyed the bacon ????) 

So these two ladies come in with no wheelchair just a bag full of stuff and i was like hmm.. this doesn’t seem right.. Well, it in fact was not right. The ladies were like “oh yeah we saw the order for sedation but we thought it was a mis-type” I was like um. no.. it was definitely a need. But they talked me through step by step, cut my stitches out, made sure I was comfy and had a hand to hold and BOOM. it was out. I had held my breath to wait for it to come out and it just felt like they had ripped off a scar so they said “we’re done!” and i was still holding my breath and closing my eyes ???? They’re like “you can breathe now..” Oh well so we got that out and didn’t even have to leave my bed! 

So now I just have my central line in and getting Iron through my IV every night. It’s kind of hard on me and makes me a little sick but I am very very anemic right now so I cannot go home yet. I have two more nights of iron then we see if it moves up cause the numbers have only gotten worse even after all the iron so have to figure that out before we send me home. 

Shouldn’t be later than Friday but as of right now we just sit and wait. Today at managed to take an entire shower! I don’t wash my chest due to my tubes but everything else? Squeaky clean ???? 

So todays things to be proud about are 

1: I got my perma-cath out with NO sedation 

2: Took a shower! 

So y’all can be praying for my numbers to start raising (hemoglobin and all blood numbers) cause it is so exhausting and hard to just live. The other thing is we’ve been learning a lot on my ATTP and think I need to try a new treatment that not a lot of people have tried due to it being such a rare blood disease. So pray God knows who to put into my care to help me get the treatment I need next. In the meantime, keep praying!