New DVT Directory Site

I'm starting a new directory site to compile DVT resources in one place: www.dvt-resources.com.

Anyone reading this, please send along any links that you rely on for DVT information, so that I can add them to www.dvt-resources.com.

"Sips and Steps"

So ... while I'm on anticoagulation therapy, the odds of getting another clot are low. But, it's a good time for developing better habits for when I'm (knock wood) not on the therapy at some point in the future.

I've come up with a new strategy for staying hydrated and moving sufficiently while working on the computer that I call "sips and steps." The idea is to drink 6-8 ounces of water (or something) before sitting down at my desk. Then, when I get up to go to the bathroom, I take a few minutes to walk around, then drink another 6-8 ounces -- which guarantees I'll be getting up to go to the bathroom in another 45-60 minutes or so.

So far, it seems to be working, except for one day when I forgot the first glass and failed to get the whole process going quickly enough. I've already got post-its all over my home reminding me to take my warfarin ... I'll add "drink water" to them and just be thankful I live by myself ;-).

Losing even more sleep

Well, I woke up in the wee hours this morning, and decided to check my email (and get a jump on removing the overnight spam). I found an item from a UK tabloid in my mail from Google (a news alert for the term 'warfarin'), and, since it looked like a puff piece, I decided to check it out.

On the plus side: the granny who was given 10x her dose of warfarin was not killed by the mistake (encouraging since 10x her dose was less than I take!).

On the negative side: I learned a fact about warfarin's original use that left me more than a little disturbed.

Curious? Click here if you're sure nothing can rattle you out of taking your meds:

Agony of Drug Error Granny (From London's Mirror)

Not so fast ...

Sigh. First test after going of Lovenox (injectible low molecular weight heparin, aka enoxaparin), and my INR dropped to 1.8. So, I'm back on the shots for the next few days.

Honestly, I don't mind being on the shots. It's an emotional roller coaster to be on warfarin alone, wondering if my INR is secretly dropping in between tests, leaving me vulnerable to more clotting or even a PE.

My doctor says this kind of fretting is very normal for DVT patients. Doesn't really make me feel any better, though!

Was Jesus killed by a DVT?

Some Israeli doctors believe so. Why? Immobilization on the cross after significant physical and mental stress, dehydration, and trauma. He may also have been genetically predisposed to thrombosis.

BBC Article: Did a blood clot kill Jesus?
From Religion News Blog: Was Jesus First Victim of DVT?

DVT Awareness Month

Next month is DVT Awareness Month -- an annual effort started in 2003. (My own opinion is that it could use a little more oomph -- have you ever seen a television ad or heard a radio spot about DVT? I don't recall ever hearing about it.)

So ... doing my part to help.

Notable that DVT awareness seems greater in Europe. Airlines appear to provide more information/warnings, and DVT cases appear to get more publicity, especially in the UK. And, there appears to be a lot more momentum for airline safety legislation and improved hospital guidelines for avoiding and treating DVT.

For example, recent articles include (all from the BBC):

Girl Thought to Have Died from Flu Suffered DVT
2/3 of English National Health Patients Miss Out on Clot Care
DVT Victim's Mother Champions Aviation Law

A member of the British parliament even persuaded soccer players to wear compression stockings before traveling to the World Cup! (Less recent, but noteworthy.)

MP Wins in Sock Campaign

Off Lovenox!

So, at the end of my visit with Dr. R, a bit more good news: my INR came back 2.3. Because I've now had two consecutive INR results between 2 and 3, she says I'm officially "therapeutic" on warfarin, and can stop the shots of Lovenox (the low molecular weight heparin, generic name enoxaparin).

I'm to hold onto the last few syringes I still have, though -- just in case my INR drops for some reason over the next few days, which isn't that uncommon among people just reaching therapeutic status.

I'm looking forward to stopping the shots. I've got a lot of bruising from doing injections 2x per day for 9.5 days.It's Friday, so I'll be taking 7.5mg, 7.5mg and 5mg of warfarin, then having another blood test on Monday to confirm the INR is still between 2 and 3.

Answers from my new doctor

Met with my new doctor (Dr. R) today. Thankfully, she was very patient and answered most of my many questions.

Among the most useful bits of information:

• Twinges, cramps, etc., are almost certainly not new clots. The anticoagulants make it virtually impossible for new clots to form. And hyper-awareness of every new twinge and ache is very normal for a DVT patient at this stage.
• Driving is okay! I just need to stop and walk around every 45 minutes or so. Anticoagulants are protecting me against clots now, but this is good practice for when I'm not longer on the drugs. Plus, this way I can hopefully avoid exacerbating the swelling of my "bad" leg.
• Ditto for working at my desk (hence here I am back at it). Need to be conscious of proper hydration, and getting up at least once an hour. Taking care of the former should make it a no-brainer to accomplish the latter. Proper body mechanics are key, too -- no leg crossing, etc.
• Surprisingly, she had no problem with air travel. As she put it, "everything in medicine is a trade-off. With anticoagulants working, you have no risk of a clot from air travel. But the trade-off is risk of bleeding." I've been considering a trip to Europe and one to Mexico. Having never been to Mexico, I'm a little nervous about the prospect of navigating the emergency medical system there (even though my Spanish is good). It's brightened my mood enormously to think my European trip might still be possible. A lot depends on how my leg progresses between now and then; if the swelling is pretty intense, it might not make sense. I'm going to give it a couple of weeks before deciding.
• Very moderate exercise is okay (casual strolls outside, provided I'm cognizant of any risk of injury, are okay). She wanted to get back to me about brisker exercise that would raise my heart rate. And I might want to wait for my Medic Alert bracelet to arrive before venturing too far on foot.

All in all, a reassuring visit. I feel better informed, and like I'm on the mend. I don't think I've ever been so excited about the prospect a little walk! I'm truly stir crazy at this point.

One thing I forgot to ask about: the compression stockings. I've been reading more and more about the benefits of these (especially to reduce the risk of long term damage to my veins). I've emailed Dr. R and will post her opinion once received.

DVT Risk Assessor

I found this risk assessor survey that gives you a quick indication of your current risk for DVT. It takes about 30 seconds to complete -- totally easy and anonymous. And, the results can be surprising! (For example, even if the ONLY risk factor you have is a recent fall, your risk of DVT is high!)

Worthwhile for anyone and everyone to take a look at:

http://www.dvt.net/dvtRiskAssessor.do

Medic Alert

I'm signing up for my Medic Alert bracelet today. I know I have to behave like a grownup and do it, but I don't like it. Correction: I HATE it. I hate the idea of acknowledging so definitively that I have a health problem. I'm weak, and now the world gets to know about it.

This feels almost as deflating as admitting I'm over 40. Maybe worse. And I never thought I'd say that about anything! (Except maybe turning 50.)

If you're reading this and you're on warfarin, you know you need to do this too. It sucks to admit you have a health problem, but it's not as bad as bleeding to death.

http://www.medicalert.org

Dehydration and blood tests

At my last blood test a few days ago, the lab tech noted that my veins were hard to find, and the fact that I was getting really bruised from the repeated tests wasn't helping.

I had just assumed that the hideous bruising was inevitable, since I'm on anticoagulants now. However, the tech pointed out that dehydration indirectly leads to more bruising, because it's harder for the techs to find the vein.

The tech urged me to drink more water, and I've been enthusiastically complying for the past two days. And I'm happy to report that at my blood draw this morning, it made a huge difference! The vein popped right up, the blood draw was easier, and, 8 hours later, I can tell I'll be a lot less bruised tomorrow.

Even better: my INR jumped up .5 to 2.3 today. Did better hydration play a role? Well, I'm sure it couldn't have hurt.

Questions for my new doctor

Today I have a first visit with a new primary care physician. (I'll call her "Dr. R.") Previously, I was signed up at a facility that is a 25-30 minute drive from my home. It never bothered me because I almost never needed a doctor. My new doctor is closer - a good thing, since I'm apparently not supposed to be driving at all.

I'm nervous. Before all this happened, I hated going to the doctor. Now that it has happened, I still hate it, but my terror of another clot is more powerful. I have conflicting feelings of wanting to see doctors every day, and never wanting to see one again.

These are my questions for Dr. R:

• Cramps in my "good" leg -- could I be developing a DVT there?
• Okay to exercise? (It's been 10 days since diagnosis)
• Can I drive? For how long? (My business requires driving within 2-3 hour radius.)
• Twinges and pains -- how do I know they're a drug side effect and not a new clot or pulmonary embolism (PE)?
• How long can I work at a desk each day? (Hopefully not less time than I've spent here already!)
• Where are the actual clots in my leg? (I'm embarrassed to admit this, but I was so discombobulated and upset when I got the diagnosis, I'm not sure I understood the information I received from the NP and other doctor. I need to get the full facts today.)
• What about air travel? Will I ever be able to travel internationally again?
• What about those compression socks I keep reading about?

Update to follow.

Broccoli

For years, I've been downing large quantities of broccoli in the hope of warding off cancer. (It's a cruciferous vegetable, the supposed holy grail of antioxidants and cancer protection.) Now as part of my therapy I've learned that broccoli is relatively high in vitamin K, the agent that promotes clotting in the blood. So, I have been advised to "restrict my intake" of broccoli to 1/2 cup per day. I put it in quotes because it just seems so funny to me! Left to my own instincts, without the influence of media health reporting, I doubt I would have developed the broccoli habit in the first place.

Other vegetables like lettuces, garbanzos and asparagus have significant vitamin K, too -- but the advice for these is not to restrict them, just to be sure that to eat more or less the same amount each day, so that the warfarin dosage can be calibrated to counteract my normal vitamin K level. So ... despite the broccoli advice, being on anticoagulants is not an excuse to embark on a carbs and carne lifestyle. (There are a few really high K foods, like kale and parsley, that I'm supposed to avoid altogether. I'm not sure I've ever eaten kale anyway ... and does anyone actually eat parsley?)

All this vitamin K/vegetable stuff makes me wonder if I inadvertently increased my risk for the clot while recovering from my bike accident. I was trying to eat healthier (2006 resolution), so I ate a lot more vegetables, cut out some meat and other stuff, and cut out the glass or two of red wine I often have with dinner. Since the wine is known to have some blood thinning effects, and the vegetables I now know have the converse, could this have contributed to the DVT? (I also realize now that I drank MUCH less water during that time, because I was concentrating so hard on "resting" my leg, which is so contrary to my normal behavior. )

I'm going to keep an eye on research related to this. Could be useful information for other people who are recovering from minor injuries at home. Would it be a good idea, for example, to cut down on vitamin K before air travel? Should athletes minimize it before major endurance events? Interesting questions.

I've also learned that vitamin K is an important element that is crucial to other areas of health, such as bone health. It seems to me that this is just another example of how important balance is to attaining good health; too much of any "good thing" can cause it to be harmful, and if you're then forced to reduce it or cut it out, that can lead to other problems. I definitely don't want to exchange DVT for osteoporosis if I can avoid it (especially since I'm now unlikely to be a candidate for hormone replacement therapy when that time comes).

Some useful links on vitamin K:

Mayo Clinic article on warfarin and vitamin K
Dr. Gourmet Vitamin K chart
Dr. Andrew Weil on Vitamin K and Coumadin
Vitamin K Content of Some Foods from medic8.com

Also worth noting that there are some contradictions in published information about vitamin K content in foods. For example, some sources list olive oil as a high K food, while others list it as low. Many sources comment on the relative lack of data on vitamin K to date (in comparison to other vitamins with a better understood connection to health, like vitamin C, A, E, etc). All of this suggests to me that my doctor's advice to keep your diet as consistent as possible is the most useful. (And, of course, to ask if in doubt about any particular food.)

What gets rid of the clot?

Today I had a chance to speak with a nurse about my therapy, and ask her how it works to get rid of the clot. Frankly, it wasn't making much sense to me. Everything I read about anticoagulants indicates that all they do is keep blood from clotting -- they don't dissolve existing clots. So, how do I get rid of this thing??

The nurse confirmed that the clot is not reduced by the anticoagulants. It's actually dissolved over time by the body -- something the body does all the time, apparently (although normally not on such a large scale). It may take weeks or even months for the clot to fully dissolve!

While the nurse also explained that this process doesn't increase the likelihood of a piece of the clot breaking free and causing a PE, I'm having to work at believing this. I'm envisioning the clot disintegrating into raggedy pieces, all barely connected and threatening to float away and kill me. I'm trying hard to be rational, but I feel like I have a ticking bomb inside my leg.

Just One Book!

I looked for books on DVT on Amazon, and was able to find just ONE suitable for patients! (Actually, it's not even a book, but a CD-ROM electronic book pulling together lots of government information on the subject.) Unbelievable, considering that this health problem causes more deaths each year than AIDS and breast cancer COMBINED.

The book hadn't even been reviewed on Amazon. I'm going to spring for the $25, and post a review of it here.

If you want to check it out in the meantime, here is the link.

Heartbreaking

I've shared my condition only with a few close friends, for fear of worrying them. (Note, I realize it's necessary to let at least a few close people know what is going on with you - once anti-coagulant therapy is working, you need to be sure people know about your risk of bleeding, for example. But my private nature has led me to keep these discussions to a bare minimum!)

One of these dear friends became very, very alarmed by my news (just what I was afraid of), because she knew of a young woman who had died of a pulmonary embolism. An entertainment executive with an international job, this woman had returned from one of her frequent overseas flights and noticed she felt incessantly short of breath. Despite urging from her colleagues and friends to see a doctor, she ignored the symptom, which perhaps seemed just mildly bothersome and not worth worrying about. A week later, she died suddenly in a meeting; she just slumped over in her chair and was gone. She was only 34 years old.

Who gets DVT? Useful links.

There are a lot of risk factors for DVT that suggest that it's an affliction of the old, infirm and sedentary. (See this NIH page for example.)

However, when you consider the huge variety of risk factors, virtually anyone can be at risk at one time or another. Among the groups DVT can disproportionately affect are older people, tall people, unhealthy people, very fit people, people recovering from surgery, pregnant women, women on the pill or the patch, smokers, sedentary people, people immobilized temporarily from car, air or train travel, and anyone who happens to be sitting in one place for an extended period (e.g., at a computer). Bottom line: it's really something everyone needs to be aware of.

A great resource for anyone wanting to learn more about DVT is The Coalition to Prevent DVT. It's championed by Melanie Bloom, widow of David Bloom, who was the embedded NBC news journalist who died of a PE in Iraq in 2003. His PE was caused by DVT, in turn caused by hours upon hours in the specially designed, cramped tank that allowed him unprecedented access to the fighting.

The Coalition's site contains links to several other useful sites. For more on what happened to David Bloom, check out this excellent article from USA today, "David Bloom's Silent Killer," which provides a clear, plain-English explanation of what happened to Bloom, and a useful list of risk factors and symptoms.

One of the most surprising things about DVT risk that I've learned so far is that athletes may actually be at higher risk than the general population. Lower heart rate in particular seems to put the really fit at more risk. Combine that increased medical risk with the psychological tendency of athletes to work through pain and assume good health, and DVT becomes a very serious danger for the very fit. Some useful links about this:

"Hidden Danger: DVT in Endurance Athletes"
From graduatedcompression.com: "Listen to Your Body"
Blog by Tim Hentzel, a 27-year old athlete with DVT

How I got the clot

Day Six. Having mostly absorbed the shocking idea of a huge blood clot running the length of my leg, and feeling fairly reassured that meds were protecting me from a PE, my overactive brain focused next on how it happened.

It's impossible to know for sure, but my DVT appears related to a bicycling accident I had about six weeks before my diagnosis. I went over the handlebars and got very bruised up all over. It's possible that a deep tissue injury from this accident damaged a large vein in thigh and led to the thrombosis.

After the accident, I spent 7-10 days behind a desk, moving much less than usual (in fact, I enthusiastically reframed being chair-bound as a chance to catch up on a year's worth of unentered bookkeeping for my small business). A DVT could have developed in an injured vein during this period, or even in a healthy one as a result of spending so much time sitting relatively still.

After this week+ of rest, I felt ready to exercise a bit. I decided on a light walk on a treadmill. Soon after starting, I felt an intense, painful tightness in my left calf -- like my muscle was in bad need of stretching. I tried stretching, which didn't seem to help, but still I kept going for the rest of my light 2 mile walk.

The next day, I woke up with much more painful and swollen leg -- possibly the DVT. (Calf muscle pain misinterpreted as a strain is a common theme in articles and forum posts by DVT patients. It's unfortunately common to wrongly assume these injuries are ordinary pulled muscles.)

Confusingly, the pain all but disappeared in a few days. The swelling was minimal, too (although in retrospect, the fact that it never completely disappeared was a big red flag).

A day or two after this "recovery," though, I experienced what I assumed was just another muscle pull. In what seemed like just a fluke of bad ergonomics, I felt a stabbing pain in the upper thigh upon getting up from my desk. Once again I was swollen, limping and resting. (If the painful incident I thought was calf muscle strain wasn't the DVT, then this thigh pain may have indicated when it started.)

None of this seemed like anything more than a series of garden variety, klutziness-related muscle strains. I theorized that all the different injuries led to each other because of reduced activity and extended resting of isolated muscles.

About 10 days after the thigh pain started, I began to feel better -- ironically, though that was when I finally realized something was really be wrong. Though I had little pain, my leg was increasingly swollen. When the swelling wouldn't go away on its own, I finally went to the doctor and was diagnosed.

Looking back, there were warning signs I should have considered, even though my symptoms were confusing:

• continuous swelling that never fully dissipated
• heat coming off the leg (very noticeable)
• mild fever (at one point, I had a fever of 99.5 or so that lasted about 2 days)
• although it disappeared quickly, initial pain was unusually intense for muscle strain

It's possible that I had a DVT for as long as six weeks before seeing the doctor -- and I definitely had it for at least 10 days. I dodged a bullet, and hope this post discourages anyone reading it not to put off a doctor visit if they're experiencing similar symptoms. Better to risk wasting a few minutes of your doctor's time than to risk a life-threatening clot moving to your lung.

By the way, diagnosis is simple and painless by ultrasound. They run a wand-like ultrasound instrument over the areas of your leg where the deep veins lie. They apply just a little bit of pressure -- not painful at all. The test shows whether the veins can be compressed -- if the sound waves can compress the vein, no clot, but if the veins are not flexible, a clot's inside preventing compression.

It only takes minutes, it's totally painless, and it could save your life.

My Treatment

My treatment started immediately after diagnosis. (Well, not exactly immediately, since I had to wait for a stressful, tearful 4 HOURS for the pharmacy to get my meds together!)

My treatment (which is apparently very typical) consists of enoxaparin injections (Lovenox) and warfarin tablets (generic version of Coumadin). The enoxaparin is a low molecular weight form of heparin that can be injected by ordinary mortal patients at home. I have to inject twice a day, subcutaneously (below the skin), into fat. I've hit muscle a couple of times and it's not fun, but this became easy to avoid once I switched to belly injections instead of injecting into the thigh (sigh).

The enoxaparin is a blood "thinner" (more accurately, an anticoagulant -- a clot-stopper) that works fast. The nurse at Kaiser showed me how to do the first shot the evening of my diagnosis; Dr. E then reassured me by saying "your blood will be thin by the time you go to bed."

With an anticoagulant doing its job, the clot in my leg is virtually unable to grow, since it makes my blood much less sticky. This in turn reduces the risk of a PE complication, since the existing, stable clot is less likely to throw off bits that could make their way to my lung, provided no new, looser bits are allowed to accumulate (or so goes the theory).

The enoxaparin shots are a safety net while dosage of warfarin, the longer-term therapy, is adjusted. The goal is to attain an INR reading of between 2 and 3. "INR" stands for "International Normalized Ratio" -- not very meaningful for a layperson, but a helpful site called Hemosense explains the INR as a standardized way of expressing "prothrombin time," or the clotting time of the blood.

Each day I take Warfarin, then have a blood test to see if my INR has reached the 2 to 3 range. During the first few days to a week, the INR is typically outside this range, so the enoxaparin injections are used to prevent clotting while the warfarin dosage is manipulated. (I have also read that the warfarin may act as a pro-coagulant during the first few days of dosage, so the injections not only allow for achieving a stable INR, but override the negative effects of the first few doses of warfarin.)

As of my blood test on day 5, my INR was climbing, but slowly. I was still at 1.8, and consequently my dosage was increased to 10mg from 5mg. This means enoxaparin injections for at least an extra several days. Kind of unpleasant, but, truthfully, I like the confidence they give me that I'm really anticoagulated. I've read that warfarin dosage can be tricky, and that INR can jump around a lot during the course of treatment. This, combined with my slow climb to 2.0, has me a little nervous about eventually going off the shots.

Shock and Awe

Feb 4, 2006: the day I was diagnosed with DVT (deep venous thrombosis). One of the worst days of my life? Not sure that is the right way to describe it. But certainly one of the most challenging. It felt (and feels) like my life has changed forever.

I've decided to blog here to share some of my experiences, get things off my chest, and maybe even track my progress on meds and with changing some of habits that now need to go. (One of the big changes this experience has brought: I'm suddenly a person who needs to monitor her health carefully.)

I've read a fair number of forum posts and sites dedicated to DVT, and so far it seems I may be on the lucky side. I am not currently in intense pain from my DVT (and in fact am itching to exercise), and, while my leg is swollen, I've seen many postings with photos of much more dramatic swelling. (I'll spare you a photo of mine.)

On the other hand, the psychological effects I've experienced have been just as bad as anything I've read. The words "You have a blood clot in your leg, and we have to treat it or it could travel to your lungs and kill you" have a profoundly sobering effect. The first few days were like a freefall into depression. I don't know whether it was the news, or the combination of adjusting to the news, near immobility and the drugs (I take shots of enoxaparin and warfarin pills - more on this to come). It's about a week after my diagnosis, and I only now feel like I am getting some of my mental energy back.

The other big change is that I'm hyper-aware of every little twinge. Every teeny ache could be a blood clot breaking free and making a bee-line for my lung. Every tiny cramp is a new DVT. I measure my leg obsessively and every small change reignites my mental debate: Call the doctor! Don't be silly! Be safe not sorry! Don't be crazy! etc., etc. Urgh!

I've been reluctant to tell too many people about this condition, and I'm not entirely sure why. Maybe it's fear of aging, maybe it's fear of being thought infirm (not sure this is an illegitimate fear). Probably because I hate the idea of people worrying about me.

I should stop now. Sitting at the computer isn't the greatest, and I need to go get a blood test. More on this, the treatment I'm receiving, etc., next post.