Thursday, July 18, 2019

July 18

So I know it's been a while. Hope everyone is enjoying their summer! 
I didn't want to say anything until things were set in stone. 
So... my cardiologist spoke with my neurosurgeon & helped him understand why I needed a port. Now that they are both in agreement, which I never thought would be possible, I've just met with a general surgeon & have it scheduled to be placed next thurs.

I want to help others understand what a port is & why I need it. A port is a catheter that has direct access to one of the main veins to your heart. They surgically insert it while I'm sedated & it is meant to stay under my skin. Then, it can be accessed any time with one stick. Blood can be drawn & fluids & ivs can be run. 
Now because of ehlers-danlos, this past year my veins have started to go. During my hospital stays it was a constant fight of collapsing the veins, blowing the veins, & infiltrating them. I came out with bruises in places I didn't even think a needle could go. But people always insisted on trying because my skin is more translucent so the veins look healthy.
So am I planning on hospital visits? Not really. But as I mentioned earlier, I am unable to eat due to pain from the shunt. So I will be having iv fluids & benadryl given through the port in hopes that it settles the inflammation & allows me to eat. 
I am very happy to be having this. Don't get me wrong, every surgery I have is scary & comes with a lot of risks, but I believe this is worth it.

As always prayers & happy thoughts are appreciated. I'm always open to questions, but I want everyone to understand that: until you're in my situation, you have no idea what choices you'll make.



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