At this time last year, and for the last three years, I spent most of the day unconscious or asleep, in shock from IV needle sticks, tethered to an IV pole, nauseous, weak, miserable. Two Thursdays ago, however, I competed in my first shiai (tournament)! Then Saturday was Spirit Training followed by a pool party. I made it through all of last week's events. Why? I'll tell you why: my port.
One manifestation of Ehlers-Danlos Syndrome for me is that I cannot regulate my body temperature internally. No matter how much water I drink I can't stay cool. My body does not understand that my blood pressure needs to stay high enough to keep me conscious. When I get hot and lose a lot of fluid to sweat, I can't then tell my body to stop sweating. It just keeps doing its sweaty little thing until I'm all out of water, or I get to an ice pack, or an ice cold shower. And even then it is hard to stay conscious. Why does this happen? There are a million different theories and I won't bother with all that tonight, but the bottom line is that there is no known cure because the cause is still not exactly known.
I tried living on high sodium diets, Pedialyte, gatorade, salt water, olives, pink salt, all kinds of trials and experiments. Life with EDS is one big science project.
For the past three years I have gone to nursing appointments several times a week for up to nine hours a day for intravenous hydration. But my skin is very lax, my veins roll or blow, I bruise easily, and the pain is so severe that I go into shock when they tried to stick me. "You need a port," said my doctor, "it's the merciful thing to do."
Going into shock several times a week is tough on the body. They would encase my arm and my head in ice to try to reduce the autonomic response from my brain that said, "somebody stuck a needle in us-go crazy!" They used pediatric needles. Pediatric nurses. Doctors. Sedation. Local anaesthesia. Ethyl chloride. Anything to interrupt the shock. The pain was so uncontrollable that I would often end up begging them to stop, that I couldn't tolerate anymore, knowing that without fluids I would not likely survive. I'm glad they never obliged me, except for long enough to collect myself and recover from the exhaustion of the shock. It was traumatic even though my doctor and nurses were with me every step of the way. They cried with me, not knowing how to help.
June 28 of 2012 was my "emergency vascular intervention" surgery to place the port. I was awake for it, though kept comfortable. The surgeon and I chatted the whole time and surgery was a breeze. I didn't even go into shock that morning when they put the IV line in me! It was a great victory and I got graham crackers out of it.
Next, my entire chest and neck hurt. I could not sit up for two months without holding my chest in place with my hands. Lots of ice packs. Lots of hyperventilating from the pain of my chest rising and falling with each breath. Exhaustion from shallow breathing. But once I recovered it was smooth sailing and it's been that way ever since.
On June 29th my nurse accessed my port and I was cool as a cucumber. No shock! Two litres of saline later I was conscious and even comfortable! I asked her how she accessed my port so easily and she told me. She has her third port. Stage 4 breast cancer. This woman looked over me while I was so sick, cared for me day in and out like I was her baby doll. She is a permanent part of who I am and I love her.
Think about it: that was my life most days of the week. The other days were reserved for trying to stay as cool and still as possible so as not to undo the hydration from the day before. My quality of life was at absolute zero.
Since getting my port I have been able to exercise. Karate is an incredible adventure that I never could have seen coming a year ago!
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