The whole ordeal started (I guess) a year ago. After Clarion West I decided to get in shape. I began walking daily and paying attention to what I ate. By June I was walking two to three hours a day, stretching, lifting light weights, and eating pretty well. Without much effort at all I managed to lose almost fifty pounds. I was happy, feeling good, and maybe a little cocky.
When the rainy season hit I cut my walking down to only a couple times a week. Soon after, the weather turned hot. Summer in Japan is its own special kind of hell, a constant sweaty, melty kind of hell. It was okay though. I didn’t have to walk anymore. I’d already lost the weight and I was busy working on computer stuff anyway. I became completely sedentary. Add to that recipe the fact that I am most likely chronically dehydrated at any given time.
About a month before returning to the U.S. to visit my parents and attend World Con my back started to hurt. It was the same ache as all my other sitting-too-long aches, so I didn’t pay it much attention. I figured it would go away. Eventually.
[Side note: While Googling around I read over and over that a lot of the time there are no symptoms with deep vein thrombosis, or the symptoms are such that they go undiagnosed. Scary stuff.]
Okay, now fast forward to my flight from Japan to Omaha on August 5th. I always get a window seat and hole up. I don’t sleep well on planes, so when I do finally doze off I don’t want to be interrupted by someone needing to leave their seat or slip back in. On the other hand, I also don’t want to be that person who is interrupting someone else trying to grab a few Zzzs on a long flight. I kill two birds with one stone by not moving the entire trip. Or drink either. I get up only once at the ten-hour mark, after that last meal of dusty omelet and tasteless fruit. Until then I’m good.
Only this last time when I was leaving my seat at my usual hour-before-landing time – scooching to reach the aisle – a near debilitating pain shot from my lower back all the way down my leg. I could hardly walk. I assumed I’d just slept wrong and had a kink that would work itself out while hurrying to make my connecting flight in Minneapolis.
It never worked itself out.
Once at mom and dad’s house the pain was worrisome but manageable with enough pain meds (stupid, I know). I debated over and over going to the hospital, but no insurance and all. So, no. I didn’t go. I self diagnosed myself with sciatica. It was textbook. But sciatica is a symptom. The underlying condition is what needs to be found. My self-diagnosis was I slept funky on the plane. That and I’m no spring chicken.
It was on the fourth day in Omaha that things got super shitty. Painkillers, no matter how many I took, didn’t make a dent. My leg felt extremely heavy, and my lower back pain was now shooting down the front if my leg, too. There was also constant tingling and numbness and heat. The whole kit and caboodle. I cried a lot, too. Still no trips to the doctor yet.
That all changed on day four. I happened to be wearing a pair of jeans with holes in them, fashionista that I am. Ahem. My dad was teasing me, asking why I’d pay good money for ripped up jeans. I was about to tell him how cool they looked on me when I glanced down and noticed my legs through the holes. The right one was pink, the left a dark black-purple. On further examination that left leg was also twice the size of the other. No question about it. ER.
Then things got exciting.
The ER doctor knew exactly what he was dealing with. Especially after he asked if I’d taken any long trips recently. They did ultrasound on the veins and arteries in the leg. Good news: No clots in leg. Bad news: The blood was flowing into my leg, but not leaving, something was blocking it farther up.
Back in for CAT scan of my pelvic area. Then the really bad news: loads of clots all up in my iliac vein, so far up the CAT scan couldn’t even see them all.
The mood turned pretty grim. The doctor was upset. The nurses were upset. I was upset. The doctor held my hand and told me that it’s all very concerning, dangerous, but they got this. They’re on it. The nurse hugged me and held my shoulders and looked into my eyes and told me I was going to be okay.
I said I had to pee.
Little did I know there would be no standing, no getting vertical, no eating for the next three days.
A bigger hospital was notified, an ambulance called. While I waited for the ambulance to arrive, I was given my first heparin shot and told off-handedly how it’s called the bleed-out drug (“There have been so many accidents.”), and it can’t be given unless two nurses are present and check each other’s work. (The next day they actually had to reduce my dosage because I was bleeding too much.)
The paramedics came to shuffle me away and the doctor shook my hand and thanked me, saying he’d never seen such a thing, all those clots in the iliac vein. I was his first. You’re, um, welcome, I said.
The ambulance ride was mellow, no flashing lights or Bat turns. They were going to drive extra carefully, they said. The head paramedic explained to me that if I had a pulmonary embolism in route I’d most likely be okay, because I was young (thank you, dude) and had strong lungs.
New hospital. Blur. Meeting several vascular surgeons. Blur. More tests. Blur. Surgery pushed ahead of other surgeries. I’d be going in at seven am the following day.
The procedure was to go in behind my knee and use a drug called tPA to dissolve the clot while sucking it all out along the way. If they couldn’t get it all, the catheter would stay in my leg and they’d continue the next day. Because it wasn’t just the iliac vein but all the little side roads too, it was a hugely pain-in-the-ass thing to do. My surgeon (Dr. Brown) is a saint. A very talented and brilliant saint.
I have no veins in my arms. People think I’m exaggerating but I’m not. The absolute worst part of the four days in the hospital was them trying to find veins for blood work and failing again and again. My arm looked so bad the nurses were cringing.
During the first surgery (yes, they had to go back in a second day), my vein blew toward the end of the procedure. I woke up in post op and it was just like an episode of ER, except I was the one on the gurney looking up. All sorts of people above me, serious, working quickly, calling out fancy medical talk-things to each, that high note of panic in the air.
A dude was trying desperately to locate another vein when my back began to spasm. I was able to say, back… upper back. And then as the spasms grew worse I cried out, chest! That hepped up the anxiety in the room real good. Something was pumped into my oxygen and I was out. I vaguely remember my doctor using a portable ultra sound device to put a midline in my bicep.
I woke up in my lovely hospital room. It really was lovely. All the nurses were sweet, the place was spacious, mom and dad and friends were there. I even had beautiful flowers and baskets of goodies waiting for me!
That first day after surgery I learned that heparin is kinda the devil. I mean it saved my life, so thank you heparin. It prevents further clotting. But it also prevents ALL clotting. It also makes you pee bright red blood, which is quite shocking when you look down at your catheter and see that for the first time. The incision in the back of my leg just free bled the entire time. I kept asking them to stop it, but they couldn’t. They can only watch the amount of blood lost and calculate if it’s too much or not. I soaked pillows. It was gross.
I remember morphine shots and Valium shots, friends searching all the hospitals in Omaha to find me. Mom and dad there the entire time. Grapefruit scented facial wipes, lollipops, and a little teddy bear I slept with. I remember Skyping with my best friend in Japan to keep me calm.
Sometime during the day I began to have a dry cough and I noticed I could only fill my lungs to something like 1/3 capacity. My chest hurt. I’d learn later that I had suffered a very small pulmonary embolism. I guess the guy from the ambulance was right.
The next day I went into surgery again. More cleaning out. Dr. Brown said she’d gotten all the new clots, but there were some old ones up in the iliac vein that she didn’t want to disturb for fear of knocking them loose and shooting them somewhere in my body they shouldn’t be. The blood flow past them, though, looked very good.
On the fourth day I was able to stand up, pee all by myself, and go home (mom and dad’s home, that is). The jury was out on when I could come back to Japan. Someone told me I wouldn’t be flying for at least six months. Another doctor said I could fly tomorrow. My surgeon said, let’s wait two weeks and then decide. She called it voodoo and said no one really knows. I liked her honesty.
So, my first week back at mom and dad’s I was having outrageous headaches. Can’t get out of bed headaches.
Now I’m on a newish blood thinner called Xarelto. Xarelto has an unpleasing side effect sometimes: Brain hemorrhages.
Cue another trip to the ER.
It was funny (if that’s the word I want to use). They remembered me and all I had to do was tell them I was having headaches and the entire room turned solemn and knew exactly what to do. I guess they’d seen those dreadful infomercials about Xarelto, too. Long story short: smiling ER doc bursting into my room and saying there was no brain bleeding or freaky tumors. Cheers all around. Go home. Chill.
Eventually the headaches faded. My surgeon and I think they might have been related to the severe spasms I was having after that first surgery. Who knows.
Two weeks later and I saw my Dr. Brown again. My leg looked fine. I felt fine. We talked for a lovely long time and she gave me the all-clear to travel with the strict rules of standing up and moving my legs every thirty minutes to an hour, staying hydrated, and wearing compression socks (sexy).
That was one long flight. I have become that nerd in front of the toilets doing squats and stretching. I embrace that nerd.
So, the prognosis is I will have to stay on Xarelto for six months to a year. I’ll also need to have a bunch of tests done (here in Japan) to see if I have some genetic predisposition to blood clots or if this truly was a series of bad choices that caused the darn things. Also, compression socks at all times. (That’s a harder nerd to embrace, I tell ya.) I need to be looked at for a long time. I may, at some future date, need a stint. We’ll see.
I can’t even tell you the moral of the story. Stay hydrated, walk around on long flights. When you’re sitting for extended periods remember to move, stretch, flex your legs, especially your calves. You can also start eating natto if you’d like, as it has clot-busting properties, evidently.
Even after having gone through this whole ordeal there are still so many questions I have. Did the clots start in my legs and move? Or did they start in my pelvic region, and why? And how? When I asked the doctors they all said I’d never know. Voodoo, I guess. The longer I live, and the more stuff that happens to me the more this sounds like a valid answer. Whatever the answer, whatever the question, I think you can’t go wrong with staying hydrated and moving your body and limbs whenever possible. Compression socks, on the other hand? They suck.
Super greasy me happy as crap I can stand up and walk around