ECP

Going to the hospital in 12 hours. I’m having a treatment called Extracorporeal photopheresis, ECP for short. It’s used for various skin problems.

I’m taking it because… no one really knows why I need it, I just do. Story of my life? :p They think it’s either because my body reacted to some kind of medicine/treatment or the GvH after my bonemarrow transplant.

What happened to my in September/October in 2012 was that my skin turned red. Sunburnt-red. It basically looked like I had Red Man Syndrome. What it did, at its worst, was making my skin red and liquid-y (so my stomi basically fell off xD). The worst thing it did, though, was making my skin really, really hot. All the time. Which doesn’t sound THAT bad, but all the external heat made my internal heat very, very cold.

We have a heater in the basement (where I basically live) and if I had the heat on lower than 30*C/86*F I would freeze and shiver. I remember I sat outside in the 26*C/78.8*F with a jacket and beanie and froze. So I shivered for months. It took away my energy, because my body had to use it to try and get warm. It doesn’t sound that bad, but trust me, it was bad :p

Back to the ECP. It worked on my “redman syndrome”. Which was great. It took over half a year until it finally worked at max, but at least it worked. It’s a simple treatment. I basically sit 1.5-2 hours in a chair with both arms still because of the needles in my veins. Quick version of what happens: My blood is drawn and goes into a machine. The machine does it’s thing; takes my blood, centrifuges it and UV-light the white blood cells. Then I get the blood back. That’s pretty much what it is.

I started out doing it every 2 weeks for half a year+, then went to every 4 weeks. I did that for about a year and finally got up to every 6 weeks. Then I got some kind of stings or bite that they don’t know what it, but they are small red sores that go dry, skin is peeled off, it gets red, gets dry and white and rinse and repeat. So back to 4 weeks for now.

 

That’s pretty much it. It’s amazing what is invented and the people who do invent it are geniuses in my eyes.

 

 

Auli

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