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Good Appointment

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Master and me got in to see my cardiologist for a checkup last week, and it went really well.  We’re decreasing my steroid so now I don’t need to take it at night, just in the morning.  It’s a small thing, but now my insomnia has cleared up and I feel better just being able to sleep!  It is amazing how much sleep makes you feel like a million bucks.  I have been somewhat lower energy, but I perk up after a few hours so I’m getting there.  Slowly snailing my way back to the way I used to be.

The doc is also getting me PICC line orders.  She doesn’t want me to have a port because with my Ehlers-Danlos syndrome, she says there’s too many complications.  The PICC line can stay in for up to a year though, so hopefully I will be better enough within that time that I don’t need it at all.  They always use the ultrasound machine on me when I’m at Infusion though, and there is still only one nurse who can get my veins.  If she isn’t there I get butchered.  So, while a PICC line is scary to me, at least it should help me in the long run.  Plus, unlike a port it isn’t surgery, so that’s a good thing.

I’m not sure when the PICC line is getting placed, but I know it will be soon.  The cardiologist talked it over with my GP who has to get back to me with my appointment and where to go for the PICC line.  I’m nervous about the insertion.  Like I said, it isn’t surgery (you are wide awake) and generally a nurse does it, so as a procedure, it isn’t high up on the OMG scale.  It is still a catheter going to my heart though.  I mean, that alone makes it a little scary.  It’s pretty invasive.  It’s the only way for me to get my IV fluids though because my veins are all but shot, so I gotta just suck it up.  Yuck.

Cardiologist has me drinking more Pedialyte than before, to make up for the fact that I’m taking less steroid.  It seems to be helping so far.  I really am improving in a lot of ways, but it’s still scary that I have to deal with more invasive stuff.