I got my first clot around the age of 22, that was in 2001. No doctors could figure out why an otherwise healthy young man would be clotting without apparent reason. So, I was put on coumadin, and told it might be life-long.
Nine years go by, still no ideas on why I clot. I keep taking coumadin, and try to get my blood checked like I am supposed to. Then one day, something goes wrong. I am admitted to the E.R. with extreme pain in my hip.
Many tests are performed; X-Rays, MRIs, etc..it turns out that I am bleeding internally, but still clotting at the same time. Nobody has heard if this happening before. They give me large doses of vitamin K to reduce my Inr (international normalized ratio), how "thin" my blood is, in hopes of stopping the bleed. This is what should work for a normal person. I am about to find out that I am not normal. Morphine is administered every four hours through my I.V. but it doesn't really help, the pain was so bad. I begged my nurse to just give me enough to knock me out, "Please!", I begged. She didn't, but what she did do was start hiding, and not giving me my pain meds on time. She told my mother that I was a junky just looking for some meds.
I am not a junky, never have been. As a matter of fact, I avoid taking pain medication for anything. When I am given pain med. for something, I don't hardly use any, if at all. I don't want to be one of those people that needs horse tranquilizers to get rid of a little head-ache.
My mother called my wife, she was shuffling the kids between babysitters so she could stay by my side, and told her what was said. So, my wife called my room and asked me how I was doing. I told her, "Something is wrong, Baby." She immediately called my Dr. at his office and told him what I said, he said "Oh Dear!" and dropped the phone. He was just getting to work, it was early, so he cancelled his morning appointments and rushed over to check on me.
When Dr. Jeff (wont use his last name, but he is my hero) arrived in my room, that nurse was nowhere to be found. He had to track her down. When she was brought into my room, he kinda patted my lag, and asked how I was doing, and what my pain level was right then. I told him it was about a 4 or 5. He then pointed out my blood pressure and heart rate to that damned nurse, then told her(I am not quoting, but this is how I heard it, sorry for the language) "This guy is in pain, his blood pressure is sky high and he says his pain is only a 4 or 5? I know him, he has been my patient for years, he is not a pill head. His pain tolerance is incredible, he's no p*ssy. Get him his pain medication, NOW!" After she returned, they had a little talk outside my room, with the head nurse on duty at the time, and he forbid her from being in my room, ever.
I hope she got fired.
Since the morphine wasn't doing the trick, they decided to put me on Dilodid, that did the trick! I could sleep now.
After more tests, and consulting with other doctors from all over the country, or so I've been told, they figured out what was going on with me. The clotting, the bleeding, multiple organs affected...I had APS. Catastrophic APS to be more exact. I didn't know the diagnosis yet, because I had already fell into a coma.
I don't know how long I was out, but I remember waking up, sort of, with my bed tilted, feet up, while a doctor was doing something to my neck, it hurt. I asked him if I was supposed to feel it, he said it was ok, and he was almost done. He was putting a port in my neck for chemo and plasma pheresis. It turns out that this was the second time they had put one in, the first time it wouldn't work, so they put it on the other side instead. I passed back out.
I don't know how long it was, time is a blur from then. My wife told me that Dr. Jeff actually stayed by my side while I was in ICU all night, a couple of times. He had just gotten married, and he stayed with me overnight, that, my friends, is a good Doctor!
I remember being in a lot of pain. I begged God to take me, let me die. I was ready, really. God spoke to me, told me that it was not time for me to go. I had to take care of my wife, my children. "Go to them" the voice said.
I woke up, and between my feet, taped to the footboard by my sister in law, was a picture recently taken, of my three youngest kids. I still get choked up telling this story.
I started getting better, and was placed back into a normal room again. I have been in the hospital for over a month. A couple days later, I was put on a Medi-Flight to Rochester, Minnesota, the Mayo clinic.
I stayed there for about another month, slowly getting better. I lost a lot of strength, and weight. I didn't have spare weight to lose, I started out at about 200 lbs. when I went to the E.R. and when I left Mayo clinic, I weighed about 145. I am 6'3", that is thin.
I went home at the end of May, 2010. My wife and I rented a car, she drove, a couple days after my release. Time to go home.
After getting home, I was still in rough shape, I couldn’t walk unassisted, so my father in law gave me a cane. I was so tired, and would get winded just getting a drink from the kitchen. My wife thought it was just depression at first, until she got a good look at me when I had tried to get a drink. I had asked her for one, but she told me I had to get up, I couldn't lay around and give up. Well, when she saw me do that, and my lips turned blue, she figured out I wasn't being lazy. She called Dr. Jeff right then, and I was squeezed in an hour later. When he saw me, he sent me straight back to the hospital. Great.
Well, after some more tests and monitoring, it was deduced that my adrenal glands had failed. Nice.
I got better, slowly. I went back to work, I am bull-headed like that, against everyones advice. I had to take care of my family! Bad decision. I wind up getting sick a lot, going back to the hospital like 15 more times over the next year, until, finally, I get fired. Now I am trying for disability.
That’s where I am right now. Waiting.
I have basically known since I was 22 years old how I was gonna die. I will be 33 in February. I know I shouldn't be alive right now, hell, most don't live through what I survived. But I did, I am alive. So I think God for the gift He gave me, one more day.
I have APS, APS does not have me.