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On February 25th, I woke up to find my right lower leg swollen and as hard as a rock. Normally, it's my left lower leg that has swelling issues due to an old scorpion sting that I got in Texas in 2007. Anyway, like most nurses, I minimized my symptoms and put on a pair of support stockings and carried on.

However, throughout the day, it didn't get any better. Then it started to ache and I started limping. The most notable sensation felt like there was an ice cube being held to the back of my right knee. Saturday and Sunday came and went without a change in the swelling or amount of pain. In my mind, the thought of it being a deep vein thrombosis (DVT) came and went many times. What baffled me was the lack of the two most-common symptoms of a DVT, namely, redness and warmth.

By the time Sunday night rolled around, I'd had enough and made an appointment to see my nurse practitioner on Monday morning. I had a gut feeling that something wasn't right, but I couldn't put my finger on what it could be.

Monday morning, as I sat alone in the clinic room, the thought of it being a DVT kept nagging at me. My provider came in and was equally stumped. She said that there was only one thing that would rule out a DVT and that was an ultrasound of my entire leg.

I drove the ten miles to the main hospital site and watched the monitor as the tech did the ultrasound. I noticed that she couldn't find any venous blood flow in my entire right leg and frequently had to recalibrate the machine, which was strange. To double check her equipment, she did an ultrasound of the left leg, which I could tell was normal.

By the time I got home, the radiologist's report was sitting in my in-box. Turns out, the venous circulation in my right great saphenous and small saphenous veins from my hip to my foot were not existent. The radiologist noted there was one, long, continuous blood clot present. Additionally, there was a huge clot obstructing my right popliteal vein... that explained the "ice cube" feeling behind my knee.

I called my nurse practitioner on the provider line and asked at what point I needed hospitalization with a heparin IV. She felt a month of Xarelto (that new blood thinner that has all but replaced warfarin) and conscientious home care would suffice. She said if I weren't a nurse, she would have had me hospitalized.

Well, as of today, I've been on Xarelto 15mg twice a day for a week and the swelling is finally subsiding. But, the back of my knee and the lower leg still hurts, which is lasting longer than expected.

I'm not on bedrest, but my provider told me to not do things like yard work, housework, snow shoveling, and so on. She (and I) are concerned about a piece of that three foot long dissolving clot breaking loose and travelling to my lungs, resulting in a pulmonary embolism (PE), which can be fatal. Statistically, I have a roughly 1 in 125 chance of getting a PE for another week and, if I get one, there's a 1 in 4 chance of dying from it. I don't like those odds, but lying around in a hospital bed wouldn't decrease the odds or change the outcome. Needless to say, I'm not exactly spooling up my activity to a normal level anytime soon. Yet, I can't sit or lie around all the time... that would be just as bad.

I'll be on Xarelto until March 19th at the earliest, and more than likely until the middle of September. I see the hematologist on March 13th; he'll make that decision then. I was planning on having surgery in May to remove some titanium pieces in my now-healed shoulder, but that's now on hold indefinitely. Additionally, I'm advised not to travel by air for at least six months. If I travel by car, I have to stop every 30 minutes and take a 5 minute walk.

Finally, something about Xarelto. I'm glad to be taking it, because if I were taking old-fashioned warfarin, I'd have to drive 20 miles every two days to have my blood drawn. Based on those results, the next two day's doses of warfarin would have to be tweaked so my blood doesn't get too thin. That said, Xarelto has a shitload of side effects. The worst one that I notice is an occasional sensation at bedtime that the veins in all four of my extremities are on fire. I can tell that I'm on the verge of getting a nosebleed at any given second. And, in the morning, I can smell perm solution... you know, the stuff the hair shop workers squirt in hair to make it curl. The smell follows me around for an hour before it subsides. I think it's the Xarelto being excreted from my pores. Finally, I read that some people get addicted to Xarelto and have trouble getting off of it. They have withdrawal symptoms and the whole nine yards and require rehab. Addiction to a blood thinner? Really?

Good luck. Never heard of a clot that long. To a satisfactory resolution.

miamiair wrote:Good luck. Never heard of a clot that long. To a satisfactory resolution.

Thanks, Vic. It was a big one. It started in my groin and extended down behind my knee and into my calf. My leg is back to normal size, but it still feels like someone's holding an ice cube to the back of my knee. A very odd sensation. I understand that I'll be susceptible to more DVTs in years to come. Once you've had one, chances are you'll get another one.

Pay close attention to that Xarelto . . . . it's the best there is for clotting, I've been taking it for years. All the generic crap solutions to it suck (cumadin, et al).

But it will kill you. If you get cut, I mean cut hard, you could bleed out. Scrapes, scratches, small abrasion, might bleed for hours. Be prepared for that.

I believe it also desensitizes you to actually getting cut. Many times I've been doing things and people will point at a hand or a forearm . . . . "did you know you're bleeding". Well Fuck! Happens a lot. Maybe cause I've bled a lot, or because I'm just old.

A question to ask is would Quick Clot work while using this?

miamiair wrote:A question to ask is would Quick Clot work while using this?

Your blood has to have the clotting factor (a thing) in it first in order for it to start clotting. Xarelto prevents clots from happening (or get worse) by turning off the clotting factor. So, Quick Clot wouldn't work.

What Pep wrote is exactly right. It's a scary thought, actually. I taste blood in my mouth all the time. I can feel the blood in my nasal passages trying to leak out whenever I sneeze. I don't like it.

Its better than the alternative...

miamiair wrote:Its better than the alternative...

I'm walking on eggshells trying to avoid cutting myself or getting a bruise.

miamiair wrote:Its better than the alternative...

Scary stuff but I'm glad you're getting proper care Mark!

I emailed my nurse practitioner about the side effects of Xarelto. She's great. She and I work as a team for my health care needs. I usually come up with a care plan, then visit or email her. Most of the time, she goes along with my requests and suggestions. Regarding the Xarelto, she said my side effects were normal and a sign that the blood thinner is working. I have to take 30mg a day for another week, then it'll be reduced to 20mg a day for as long as my hematologist recommends. I see the hematologist on Monday.

An example of how cool my NP is... my new Medicare Advantage insurance company wouldn't pay for my brand name Concerta, an ADHD med that I've taken every day since 2002. They suggested switching to a different med, which sort of scared me. The alternative was to fight with the insurance with prior authorization and petitioning to make an exemption for me. The insurance company, United Healthcare, is known to be a stickler for getting an exemption. Well, I was able to select one of four meds they suggested. I picked Focalin and my NP agreed with my choice. I've switched to it and it's working out fine.

I can contact her anytime using a private email address and she writes back right away. Saves from scheduling an appointment so frequently.

Xarelto is a weird, powerful drug.

I woke up to find the familiar taste of blood in my mouth, the sensation of an impending nosebleed, the weird headache, the pain and swelling in my leg, and the burning sensation in my arms and legs to be gone. A few minutes later, I asked my pharmacist about this sudden change and he said that it meant the blood clot that filled my saphenous vein was gone and that things were proceeding as expected. This whole experience has apparently been the way it's supposed to feel when Xarelto is chosen to dissolve a deep vein thrombosis (DVT). Apparently, there are other ways to treat a DVT. Anyway, the Xarelto aggressively attacked the clot, all while spewing annoying (and sometimes frightening) side effects to remind me it's working, and when its job was done, it apparently put itself in some sort of stand-by mode in my bloodstream, waiting to attack another blood clot.

Wow. What a wild trip this DVT thing has been. Because I'm still taking a high dose of Xarelto, I'm at risk for bleeding and bruising, including having stroke if I bang my head on something. But, I'm upbeat and that nagging feeling of impending doom is gone. But, I need to finish this regimen of Xarelto... another week, then I switch from the dose that I'm on to a lower maintenance dose. Apparently, you can't quit Xarelto cold turkey.... you have to be weaned off of it. People go through withdrawal if they suddenly stop taking it.

My medical friends tell me that I dodged a bullet. The largest vein in my leg was completely clotted off from my groin to my calf. There was a one in 125 chance that a small piece of the clot could have broken off and made its way to a lung causing a pulmonary embolism (PE). And 25% of PE's are fatal.

Mark wrote:Xarelto is a weird, powerful drug.

I woke up to find the familiar taste of blood in my mouth, the sensation of an impending nosebleed, the weird headache, the pain and swelling in my leg, and the burning sensation in my arms and legs to be gone. A few minutes later, I asked my pharmacist about this sudden change and he said that it meant the blood clot that filled my saphenous vein was gone and that things were proceeding as expected.

Why don't medical professionals ever tell you this kind of thing up front? By the way Mark, if you wake up one day with these symptoms, don't be alarmed, it just means the drug is working! Wouldn't that lessen a bunch of anxiety and save a phone call? A few years ago I went through 24 hours of anxiety after having a surgery because the doctor didn't communicate before hand what the preop and post op surgery would be like. I gave him hell about it too.

Mark wrote:My medical friends tell me that I dodged a bullet.

Let's see, not too long ago you went into basically a hypoglycemic coma and drove your car across town with the police in tow. Then you passed out cold in the stand up X-ray machine at the dentist....if you are like a cat, then you have 6 lives left at this point!

ANCFlyer wrote:I believe it also desensitizes you to actually getting cut. Many times I've been doing things and people will point at a hand or a forearm . . . . "did you know you're bleeding". Well Fuck! Happens a lot. Maybe cause I've bled a lot, or because I'm just old.

No, no, no The correct answer are, in order, ....

1. Nope, probably because I was a U.S. Army M1A1 tank commander and as such have nerves of uranium mesh!! Nuff Said!!!

2. Yeah, still recovering from that bout of Ebola!

Mark wrote:Xarelto is a weird, powerful drug.

I woke up to find the familiar taste of blood in my mouth, the sensation of an impending nosebleed, the weird headache, the pain and swelling in my leg, and the burning sensation in my arms and legs to be gone. A few minutes later, I asked my pharmacist about this sudden change and he said that it meant the blood clot that filled my saphenous vein was gone and that things were proceeding as expected.

DXing wrote:Why don't medical professionals ever tell you this kind of thing up front? By the way Mark, if you wake up one day with these symptoms, don't be alarmed, it just means the drug is working! Wouldn't that lessen a bunch of anxiety and save a phone call? A few years ago I went through 24 hours of anxiety after having a surgery because the doctor didn't communicate before hand what the preop and post op surgery would be like. I gave him hell about it too.[/quote="DXing"]

Mark wrote:My medical friends tell me that I dodged a bullet.

DXing wrote:Let's see, not too long ago you went into basically a hypoglycemic coma and drove your car across town with the police in tow. Then you passed out cold in the stand up X-ray machine at the dentist....if you are like a cat, then you have 6 lives left at this point!

Mark wrote:Xarelto is a weird, powerful drug.

I woke up to find the familiar taste of blood in my mouth, the sensation of an impending nosebleed, the weird headache, the pain and swelling in my leg, and the burning sensation in my arms and legs to be gone. A few minutes later, I asked my pharmacist about this sudden change and he said that it meant the blood clot that filled my saphenous vein was gone and that things were proceeding as expected.

DXing wrote:Why don't medical professionals ever tell you this kind of thing up front? By the way Mark, if you wake up one day with these symptoms, don't be alarmed, it just means the drug is working! Wouldn't that lessen a bunch of anxiety and save a phone call? A few years ago I went through 24 hours of anxiety after having a surgery because the doctor didn't communicate before hand what the preop and post op surgery would be like. I gave him hell about it too.[/quote="DXing"]

Mark wrote:My medical friends tell me that I dodged a bullet.

DXing wrote:Let's see, not too long ago you went into basically a hypoglycemic coma and drove your car across town with the police in tow. Then you passed out cold in the stand up X-ray machine at the dentist....if you are like a cat, then you have 6 lives left at this point!

My two health issues... high blood pressure and Type 2 diabetes reared their ugly heads. I now have memorized what it feels like when hypoglycemia and hypotension starts to hit. It gives me time to grab the glucose tablets in my car's center console and/or pull over and recline the seat back until it passes. I can also press the 911 Assist button by the rearview mirror to summon help... It's essentially Ford's version of OnStar.