Like, WHOA!
I'm not one for dramatics, nor do I exaggerate, but something beyond explanation happened today. I do not like to complain or whine, but I have to 'go there' so you can appreciate said experience. Allow me to take a step back to last night when my body became my worst enemy. Everything hurt excruciatingly bad - my bones, muscles, lungs, veins, headache - you name it and it hurt. I was not in a good place to say the least, and the pain kept me awake all night. Then this morning I woke up feeling better than I've felt in days...I was even able to function ta'boot! Now it wasn't a miraculous healing and I'm far from cured - as the pain & exhaustion have already returned - but I had so much on my mind of things I wanted to get done before Monday, it felt like I was given a few hours of reprieve to accomplish some things. I don't know if it was a gift from the Universe or if it's all of the incredible positive energy/prayers you've all so graciously been sending me...but it felt truly magical and I am so grateful.
During my magical morning, I also finally heard back from the clot doc, who bluntly told me exactly what I did not want to hear: "There are no good solutions." [followed by a long, silent pause] not once, but twice. When I asked her if we could do some type of imaging to find the lesser of all the evils, she scheduled me for a neck CAT scan tomorrow afternoon to look at my jugulars. She also increased my lovenox (blood thinner) dose slightly and my prednisone taper is on hold until everything calms down.
Then this not-so-magical evening I received a call from the IR dept. calling to go over my PICC line placement. There was so much discrepancy about the plan I had gone over with the CF team and what the IR team had been told, that I could feel the anxiety brewing. And then....she told me that my favorite IR doc - the one I've been waiting for - is not even on the schedule next week. Whelp! Luckily the nurse was very kind and helpful; she pulled up my procedure notes from last time and realized this is going to be complicated. She's going to talk to the IR docs, I'm going to talk to the CF team, and we're hoping to have a plan worked out after my CAT scan tomorrow afternoon. Fingers crossed!
During my magical morning, I also finally heard back from the clot doc, who bluntly told me exactly what I did not want to hear: "There are no good solutions." [followed by a long, silent pause] not once, but twice. When I asked her if we could do some type of imaging to find the lesser of all the evils, she scheduled me for a neck CAT scan tomorrow afternoon to look at my jugulars. She also increased my lovenox (blood thinner) dose slightly and my prednisone taper is on hold until everything calms down.
Then this not-so-magical evening I received a call from the IR dept. calling to go over my PICC line placement. There was so much discrepancy about the plan I had gone over with the CF team and what the IR team had been told, that I could feel the anxiety brewing. And then....she told me that my favorite IR doc - the one I've been waiting for - is not even on the schedule next week. Whelp! Luckily the nurse was very kind and helpful; she pulled up my procedure notes from last time and realized this is going to be complicated. She's going to talk to the IR docs, I'm going to talk to the CF team, and we're hoping to have a plan worked out after my CAT scan tomorrow afternoon. Fingers crossed!
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