Getting Out of the Deep End

Can you believe it? 2017 is almost over and I don’t know about you, but I am ready to say goodbye to this year. I don’t like to rush things, but I am ready for a new beginning. A lot of 2017 felt like holding my head above water as a struggled in the deep end on the sea of recovery.

Don’t get me wrong, 2017 was an amazing year, and I did some things that I never thought I would since my blood clot diagnosis. I conquered one of my greatest fears – traveling abroad on blood thinners – when I flew to London and toured the UK for 11 days. Among the highlights of things I saw was the stone circle at Stonehenge, the Roman Baths, countless castles and cathedrals (my personal favorite), and the city of Edinburgh in Scotland.

Traveling overseas was a great fear of mine, primarily because of, “what if something like a blood clot happened so far away from home?” From there, I could think of a thousand other things that could go wrong on an overseas trip. From the long flight, to a blood clot, to an unexpected injury, illness, or other unforeseen natural or planned disaster, the bad things that could happen added up quickly in my mind. I worried a lot about whether or not I should go, and about what I would do if the unthinkable happened. I planned and prepared as best I could, and finally decided I couldn’t pass up the opportunity of a lifetime to see things that I had only read or dreamed about. I almost regretted my decision to go after being delayed on the tarmac – on the plane – which turned my eight hour flight into a 12-hour ordeal, but once I made it to Europe, I was able to relax and have fun.

Until the second to last day of our vacation when I had a very scary – and my personal “this is the worst-case scenario”  – experience occur. Much to my own disbelief, I fell and hit my head against a stone wall at the Tower of London. I had an immediate goose egg, blurred vision, and headache. I knew I needed to seek medical attention, and I did, just as soon as the taxi could get me to the hospital. I think I was too terrified to act, but thankfully, I had my family with me throughout the entire process. I had a CT scan at the hospital and was partially admitted for observation for 11 hours. I did not have bleeding, or an internal head injury. The biggest worry was my flight back home due to potential not-yet-seen bleeding complications, which did not happen. The flight home ended up going a lot smoother than the flight there. Experiencing one of my worst-case scenarios – and having a good outcome, because I was prepared for the possibility – has definitely helped to ease my fear and anxiety. Bad things can happen, even far away from home, and I will be okay.

It was a great year for my personal growth, as well as a patient leader and blood clot advocate. I am thrilled to say I was able to speak to two very different audiences this year, both which challenged me to think about how I share my story in new and different ways. One audience was chemists and medical professionals in San Diego, California and another was women with diabetes in Washington, D.C. As a result of my experiences this year, I feel that I am better prepared to continue providing information and support to even more people. Blood clots can and do affect anyone, and I hope that by sharing my story, I am able to provide life-saving information to someone who may not have known about blood clots before.

For BCRN, 2017 was a great year, and I am extremely grateful for your support. This year, there were over 300,000 page views on my blog. Thanks to you, I have gained important insight into the issues you want to talk about most, as evidenced by my most popular posts about recovery: how long does it take and what does it look like? I wrote them so long ago, in the midst of my own recovery, and I am so glad to know they provide relief and understanding for you still today.

Like any year, 2017 also saw it’s fair share of challenges and setbacks. After a few years of normalcy, I experienced some health challenges this year that challenged my resiliency and positive outlook. In August, I had a major bleeding incident that landed me in the ER for treatment. I’m still recovering from that by trying to stabilize my INR and boost my iron levels. Yesterday, I had an ultrasound to check for a second blood clot in my left calf. There was not one, thankfully, but it scared me to think that there might have been. In addition, I watched someone very close to me suffer from a traumatic brain injury while on blood thinners, which was very different from my own experience in London. Thankfully, that person is now recovering, but there were some scary times in the last months of this year.

These experiences reminded me of what I have been through in the past, and of just how fragile health our health is. These events have impacted me more than I anticipated, and they have been difficult to share outside of my private group (you should join us there, if you have not already). I’m still reeling from my experiences in a lot of ways. I know, however, I’m not alone, and many of you have already been down this road of uncertainty too. Through it all, I remain grateful for my health and grateful for the health of my friends and family. In just one instant, everything can change, and the end of this year made no mistake about reminding me of that.

As I look ahead to 2018, I don’t want to stop growing, sharing, learning, and exploring. I want it to be the year of “new beginnings” and “big things.” I want it to be the year of smooth sailing, too, sailing above the water. I don’t quite know what that means yet, but I do know that I have big plans for BCRN, and I hope you will join me for the start of them. I want to write more, share more, and do more to continue to provide you with the best support available if you’re recovering from a blood clot. You, my readers, are the driving force behind the work I do here, and I can’t wait to see what’s in store for us in the year ahead. Let’s get out of the deep end and together, let’s forge ahead into what the future holds.

My wish for you is that you have a wonderful holiday season, with the people that matter the most to you. If you’re in pain, or you’re struggling with your health: you are not alone. No matter how hard it gets, don’t ever get up, and remember, it does get better in time. We’re still here, and we haven’t drowned yet. I wish you health, happiness, and a wonderful 2018.

There is hope for healing and you are not alone,

 

 

 

P.S. I couldn’t leave you without a few pictures from my adventures this year. Here’s a recap:

 


Reader Writes In: How was your year? What are you most looking forward to next year?


Does the new year have you worried about making commitments and promises that ultimately end in disappointment? Find out why I don’t make New Year’s Resolutions.


New: I was recently invited to be a part of the Amazon Influencer program to share some of my favorite products with you. These are products I personally use on a regular basis. They include things like bandages, pill cases, and medical IDs. {Disclosure: I may be compensated for  purchases made from my shop.}


 

March: Blood Clot Awareness Month

I seem to have always known blood clots were a serious health concern – especially if you had one in your heart, lungs or brain. I heard about them in the general sense; for example, when discussing the elderly who had passed away or when talking about recovery from a major surgery or hospitalization. I didn’t know the signs or symptoms; that fatality from a blood clot could happen within moments of the first symptoms; or that it would ever happen to me at 29 years old and as an active runner. I thought I had a simple running injury and if I had known the symptoms, it may have made the difference between a treatable Deep Vein Thrombosis (DVT), behind my left knee, and the Pulmonary Embolism (PE) that went to my lung and almost killed me. It was nearly two days since my calf started to hurt until I went to the Emergency Room, breathless and in excruciating pain, both in my leg and side. I couldn’t believe the extent of the injury to my body, mind and emotions. It completely changed my life – no aspect was left untouched. And the thing is, other people – like me and unlike me – don’t know or don’t think it can happen to them. March is Blood Clot Awareness Month and as a blood clot survivor, I am doing everything I can to spread awareness about this deadly and often treatable injury.

I know they majority of people I know do not understand what I went through during my PE and recovery. They do not understand my physical pain and how I could look okay in spite of it. They do not understand that I took almost a month before I could even breathe without the assistance of an oxygen tank and how I went from running several times a week to not even being able to walk from one room to another. They do not understand how I could not use the bathroom by myself in the hospital, that I was in a hospital room well-equipped for medical personnel to take life-saving measures at a moment’s notice or that I couldn’t even sit up for days on end. They do not understand how my personal relationships, professional life and self-confidence suffered, some to irrevocable ends.

I attribute most of this to the fact that many people simply do not understand blood clots and the damage they cause to the body. People understand what it means to have a heart attack, stroke or cancer, but they do not often understand what it means to have a blood clot. They also do not understand that it could happen to them. I am trying to change that and help spread awareness not only for Blood Clot Awareness Month, but always. Consider this post a crash-course in blood clots and while it is in no way all-inclusive, I hope to present to some useful information for you or others you may know who don’t understand what happens when a person has a blood clot. Share it, print it or post it! Let’s get the word out about this silent killer.

Just the Stats

  • Blood clots (DVT and PE) affect am estimated 900,000 Americans each year (Source).
  • Blood clots (DVT and PE) kill an estimated 300,000 Americans each year. The number of deaths from blood clots  exceeds those from breast cancer, AIDS,and motor vehicle accidents combined (Source).
  • Blood clots are a leading cause of preventable hospital deaths in the United States (Source).
  • Blood clots are the leading cause of maternal deaths in the United States (Source).
  • 1 in 3 people who are diagnosed with PE will die.
  • In 25 percent of people who experience a PE, the first symptom is sudden death.
  • One person every minute will be diagnosed with DVT in the U.S. One person every six minutes will die from a PE in the U.S. (Source)
  • 10 to 30 percent of people affected by DVT/PE will die within one month of diagnosis.

The Facts

Who…
  • Can get a blood clot? Anyone can develop a blood clot for a variety of reasons. There are many risk factors that increase your risk for a blood clot (see below for more detail). In a nutshell, you are at increased risk if you or a close family member have had a blood clot before; you have had recent major surgery; you have an inherited clotting condition; have cancer; are immobile for a long time (confined to bed, long-duration plane or car trip, etc.), or use birth control pills. It’s important to understand your own personal risk and also that anyone can develop a DVT at any time.
  • Most commonly treats a blood clot? Patients commonly see their general practitioner for treatment of a blood clot, but can also see a pulmonologist, cardiologist or hematologist. A hematologist is best equipped to handle ongoing care particularly if the patient has a clotting factor or other blood condition/disease contributing to the blood clot.
What…
  • Is a DVT? DVT (short for Deep Vein Thrombosis) is a type of clot that forms in a major vein of the leg or, less commonly, in the arms, pelvis, or other large veins in the body.
  • Is a PE? DVT can develop into PE (short for Pulmonary Embolism), a dangerous condition in which the clot detaches from its point of origin and travels through the bloodstream to the lungs, where it becomes stuck and prevents blood flow.
  • Causes a blood clot? Blood clots may form when either the flow of blood in a vein slows, damage to a vein occurs, or the blood is more clottable (such as with a genetic or autoimmune factor already in the body/blood).
  • Is a blood thinner? Also called an anticoagulant, a blood thinner helps to prevent clots from forming in the blood. They include medicines like aspirin, clopidogrel or Plavix, Warfarin — more commonly known as coumadin — and a variety of other medications that are used in the hospital setting, including injections like Heparin and Lovenox.
  • Happens after someone is diagnosed with a PE/DVT? Often times, a person is admitted to the hospital, especially if he or she is experiencing a PE. They are usually put through a variety of blood and imaging tests to check for high blood clotting factors in the blood (D-Dimer) and actual blood clots (Dopplar Imaging scan). Patients are usually put on blood thinners of some sort as soon as possible. Patients are often treated with pain reliving drugs and sometimes surgery is performed to remove the clot or place a filter to stop the clot from moving (usually in the groin), but these procedures are not always performed.
  • Does it mean if someone has a clotting factor? If someone says they have a clotting factor, it usually means they have a genetic (an example would be Factor V Leiden ) or autoimmune (an example would be Antiphospholipid Syndrome) mutation or condition that causes their blood to clot when it should not.
Where…
  • Can you develop a blood clot? You can develop a blood clot anywhere you have veins, but they are most commonly in the leg and less commonly in the arms, pelvis or other large veins of the body.

Why…
  • Is a blood clot so damaging? A blood clot is damaging because, depending on it’s path, it can cause great trauma to the body’s circulatory system, including the heart. It takes time and energy for the body to heal damage done to the heart and lungs, even if it is micro-damage. A PE is consider a traumatic event for a person’s body to go through.
  • Isn’t there more public awareness about DVT/PE? A lot of times blood clots are not named as the cause of death because a person may have also suffered from underlying conditions, such as cancer. There seems to be more public energy focused on educating people about heart disease, diabetes and cancer, yet organizations like the National Blood Clot Alliance (Stop the Clot) and Clot Connect are making great strides to raise awareness. More recently celebrities such as NACAR’S Champion Driver Brian Vickers, 2010 Olympian, and two time US Sprint Champion, and a Master Sprint World Champion in Speed Skating Rebekah Bradford and Reality TV Star NeNe Leakes have spoken out about their personal encounters with blood clots to help bring awareness to the public.
How…
  • Long does it take for someone to recover from a DVT/PE? Recovery from a DVT and/or PE varies greatly from individual to individual and can take anywhere from several weeks to a year or more. Some people will face complications from DVT, including Postthrombotic Syndrome (PTS) for the rest of their lives.
  • Can I prevent a blood clot?  The good news is, yes, there are many things you can do to help prevent a blood clot. Stay active. Immobility increases the risk of developing clots. If you’ve been sitting for a long period of time (such as at your desk or while traveling) stretch your legs often; Maintain an ideal body weight; Know your risk factors for developing a clot (see below) and discuss with your doctor; Know your family medical history; If you are hospitalized or planning for surgery, ask your about what will be done to prevent blood clots (such as being placed on blood thinners or wearing anti-embolism, also called compression, stockings).

Did you know?

  • One-half of clot patients will have long-term complications and one-third will have a recurrence within 10 years (Source).
  • An estimated $10 billion in medical costs in the US each year can be attributed to DVT and PE (Source).
  • Blood clots are a treatable condition and often preventable condition.

You may want to know

  • A PE is sometimes called a “heart-attack of the lungs.”
  • Deep red is the awareness ribbon color for blood clots, including DVT.
  • Red and white (together) is the awareness ribbon color for PE.
  • Burgundy is the awareness ribbon color for clotting disorders.

DVT (and subsequently PE) risk factors include

  • Hospital stay
  • Major surgery such as abdominal or pelvic surgery
  • Knee or hip replacement
  • Major trauma such as an auto accident or fall
  • Nursing home living
  • Leg paralysis
  • Older than 65 years
  • Trips over four hours by plane, car, train or bus
  • Active cancer or chemotherapy treatment
  • Bone fracture or cast
  • Birth control pills, patch or ring
  • Hormone replacement therapy
  • Pregnancy or a recent birth
  • Prior blood clot or family history of blood clots
  • Heart failure
  • Bed rest over three days
  • Obesity
  • Genetic/hereditary or acquired blood clotting disorder

Symptoms of a DVT

  • Swelling in the affected leg, including swelling in your ankle and foot.
  • Pain in your leg; this can include pain in your ankle and foot. The pain often starts in your calf and can feel like cramping or a charley horse. It won’t go away with regular stretching, massaging or rest.
  • Warmth over the affected area.
  • Changes in your skin color, such as turning pale, red or blue or purple.
  • You need to know in about half of all cases, deep vein thrombosis occurs without any noticeable symptoms.

Symptoms of a PE

  • Unexplained sudden onset of shortness of breath
  • Chest pain or discomfort that worsens when you take a deep breath, cough or even lie down
  • Feeling light headed or dizzy, or fainting
  • Rapid pulse
  • Sweating
  • Coughing up blood
  • A sense of anxiety, nervousness or impending doom

What to do if you think you have a DVT

If you are at all concerned or have any of the symptoms listed above, make an appointment with your primary care physician or visit your local emergency room.

What to do if you think you have a PE

PE is life-threatening, seek emergency medical care immediately or call 9-1-1.

Also visit

There is hope for healing and you are not alone,

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Did I take my medication?

Did I take my medication

I have never been good at taking – or more like remembering to take – my medications. As you know, it is imperative for individuals receiving anticoagulation therapy to take their blood thinning medication on a daily basis. An anticoagulant helps your body control how fast your blood clots; therefore, it prevents clots from forming inside your arteries, veins or heart during certain medical conditions. If you have a blood clot, an anticoagulant may prevent the clot from getting larger. It also may prevent a piece of the clot from breaking off and traveling to your lungs, brain or heart. It is important to note, the anticoagulant medication does not dissolve the blood clot. With time, however, this clot may dissolve on its own. Dosages for warfarin (or Coumadin), a common anticoagulant drug, ordinarily range from 1 mg to 10 mg once daily (Source). The doctor will prescribe one strength and change the dose as needed (your dose may be adjusted with each INR result). Not only is it hard to remember to take medications, especially if you are not used to it, but it can be even more complicated if dosages vary day to day or change periodically. It is no surprise that people taking anticoagulants may often wonder, did I take my medication? Read on to discover my top tips for keeping track of yours.

OatBook
OATBook reminder

Did I take my medication? Not yet!

The OATBook is a mobile phone app that helps you track, monitor and store your complete INR history in one place; keep your dosage times consistent and never miss a dose; and stores your appointments and reminders. It makes managing your warfarin easy! I literally could not manage my INR/medication without it and it has become a crucial part of my Oral Anticoagulation Therapy, as the name OATBook suggests. The OATBook took a little time for me to get used to, but once I did, I quickly found it was essential to managing my warfarin dosages, INR levels and blood draws. Plus, it lets me know via an alarm when to take my medication daily (11:32 p.m.) and will continue to go off until I check that I have done it. It also reminds me when I need to get a prescription refill. It costs between $1.99 and $2.99 and is only available for iPhone presently. You can find it HERE. Also, be sure to read my full OATBook review and see more screenshots of the app.

Pillbox
2-weekly-pill-box-photo-researchers-inc

Easy to refill, easy to remember.

I use a pillbox in conjunction with OATbook. My phone tells me when to go take my medication via the app and the pillbox ensures that I actually did it if there is ever a question later (i.e. right after I go to bed and I get back up thinking did I take my medication? The pillbox is very inexpensive (I’ve seen them for a $1 at the dollar store!) and can be found at any drugstore, pharmacy or grocery store. It’s also great if you are going to be away for a few days, you can just take the box with you and not have to worry about carting around your pill bottles. I fill up my pillbox at the beginning of each week (depending on my dosages from the doctor) and am good to go until the next blood draw.

Smartphone Calendar/Alarm/Reminder
smartphones_rect

Essential? Maybe so!

According to forbes.com, more than half of us have a smartphone nowadays. Why not use yours to keep track of your medication? Use your calendar, notepad, reminders, or alarm clock to note when and how much medication to take. You could also set an alarm on your watch. Whatever works for you – works!

Traditional Calendar/Notebook
pen and paper

There’s nothing quite like it…

Write it down – the old fashioned way. Check it off in your calendar, include it in your daily reflections, add it to your To-Do list or put a post-it on your bathroom mirror.

Share your story. How do you remember to take your medication? Do you have any great tips to share? Do you struggle to remember to take your blood thinners?

There is hope for healing and you are not alone,

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How long will I have to take blood thinners?

how long will i have to take blood thinners

It can be very overwhelming in the days, weeks and even months following initial diagnosis of a blood clot in the leg, thigh or pelvis (DVT) or lung (PE). Initial treatment generally involves extensive hospitalization; a battery of tests including blood draws, scans and X-rays; perhaps thrombolytic therapy or clot-busting drugs to break up clots inside your blood vessels; or even surgery to place a filter in the groin area or to address an underlying and more critical issue at hand. Most, if not all, patients are put on anticoagulants – or blood thinners – for some amount of time ranging from a few weeks to a lifetime. Blood thinners decrease your blood’s ability to clot. They’re used to stop blood clots from getting larger and prevent clots from forming. Blood thinners do not break up blood clots that have already formed (the body dissolves most clots with time). As time goes by, the question soon becomes just how long will I have to take blood thinners?

It was one of the first questions on my mind once I could think clearly and for me, it did not come until after I was discharged from the hospital and was sitting in my hematologist’s office for my first follow-up appointment. I was more than hesitant when I asked then and just yesterday at my 16 month follow-up appointment, how long will I have to take blood thinners?

The answer was the same then as it was yesterday – I will have to take blood thinners for the rest of my life, due Antiphospholipid Syndrome. APS is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them, particularly in the blood, which causes clotting. I had slim hope that something would have changed in the last year, but it did not; while APS antibodies do come and go, the risk of them developing and producing another PE are too great to ever stop taking blood thinners.

Still, others will be on blood thinners for much less time or may go on and off blood thinners at different times in their lives. In fact, there are as many variables affecting how long a patient will have to take blood thinners as there are patients with blood clots. It all depends on the individual and most importantly, the reason for the blood clots to begin with. If you don’t know why you developed a blood clot, request a panel of tests to determine if there are any genetic or autoimmune factors that may have contributed to the clot as this can be critical in determining how long you need to take blood thinners.

In patients with an easily identified and reversible cause of a deep vein thrombosis (such as a recent surgery, strictly birth control pills, etc.) 4 to 6 weeks of therapy may be sufficient. Many patients who experience a DVT or PE with no identifiable cause (unprovoked) or strictly as a result of birth control may only be on blood thinners until initial concerns with the clot are resolved or birth control is stopped. This may be a few weeks at most.

For cases in which the risk of developing new blood clots remains high (such as in patients with certain cancers or even genetic factors, pregnancy, etc.), anticoagulant therapy may need to be continued for months to years.

In the case of someone with recurring clots (genetic or autoimmune disorders or additional medical complications that may contribute to clotting), he or she may need to take blood thinners lifelong (http://preventdvt.org).

Doctors may recheck the leg and/or lungs with a Doppler imaging scan (or ultrasound) between 3 and 6 months after the initial clot. There would not be enough change to require a scan any sooner than that and keep in mind; your clots may never completely dissolve, resulting in residual scar tissue that may always be visible through medical scanning.

Most patients who have suffered from a PE and/or DVT are placed on blood thinning medications for 3-6 months as a general guideline. Again, it is of vital importance to discuss reasons for clotting with your doctor as well as your individual risk for a recurrence. Both will help to determine what your appropriate length of treatment should be.

Share your story. How long do you have to take blood thinners and for what reason? Did you expect to take blood thinners for as long as you are/did? What have you heard about length of treatment pertaining to blood thinners?

There is hope for healing and you are not alone,

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How to Engrave Your Medical ID

How to Engrave your medical IDAfter spending a week in the hospital, whether or not I needed to wear a medical ID bracelet was the last thing on my mind when I was finally discharged. In a matter of days, my entire world was turned upside down when I was diagnosed with blood clots in my leg (DVT or deep vein thrombosis) and lung (PE or pulmonary embolism).

I was worried about the new job I was supposed to start, what an INR was, when I could run again. I also wondered why this happened when I was doing my best to take care of myself for first time in my entire adult life. I felt scared, alone, sad, overwhelmed and I decided it would just be better for me to stay indoors rather than worry about what would happen outside where I could fall and hit my head on concrete or – my worst fear – get in a car accident. It was then that I realized that without a medical ID, no one would be able to help me if one of these accidents occurred.

Why You Need a Medical ID if You are Taking Blood Thinners

Blood thinning medications or anticoagulants save lives because they treat or prevent potentially life-threatening blood clots. However, they also pose one possible and very serious side effect: Bleeding. Since blood thinners slow the clotting of blood, unwanted and sometimes dangerous bleeding can occur with the use of these medications – especially with a fall, a head injury or a traumatic accident.

A medical ID or medical alert bracelet or necklace is a very important tool that could save your life in an emergency situation. If you are ever hurt or injured – and not able to speak for yourself – a medial ID may be the only way first responders or doctors know how to begin treating you. If you are taking blood thinners – especially warfarin for which vitamin K exists to slow or reverse bleeding – medical professionals need to know immediately. If you are taking a new oral anticoagulant  for which there are no reversal agents,  doctors still need to know so they can care for you to the best of their abilities.

How to Engrave Your Medical ID

Medical IDs do not need to be elaborate and must be able to convey life-saving information as quickly and clearly as possible. A medical ID must be immediately recognizable as a medical ID – if it’s too pretty or cute, it might not get notice in an emergency.

Information that should be included on your medical ID (in order of importance or room you have to engrave):
  • Specific name of the medication(s) you are taking that affect life-saving treatments (i.e. anticoagulants, heart medications, aspirin, insulin, etc.)
  • Allergies (especially to medications like penicillin)
  • Whether or not you are diabetic
  • Name
Information that can also be included on a medical ID:
  • History of medical conditions (i.e. DVT, PE, heart attack, stroke)
  • Date of birth
  • Doctor name and phone number
  • Emergency contact name and phone number
  • Your address
  • Your phone number
  • Your blood type
Where to Get Your Medical ID

There are countless places to order a medical ID. They range in price from free (a wallet card or mobile app) to a few dollars (i.e. silicone bands) to hundreds of dollars (i.e. gold charms and bracelets). Here are a few of my favorites:

  • BCRN’s Shop on Amazon – My shop has some of my personal recommendations for a variety of styles (not personalized), for almost any budget, including silicone IDs that are great for quick ID and outdoor activities.
  • American Medical ID – A variety of styles, which you can personalize with your information, and prices. I wear an American Medical ID daily. Read my complete review of my American Medical ID here.
  • Road ID – Perfect for sports and outdoor activities, and displays a lot of information.
  • My MedicAlert Foundation – A classically designed medical ID that comes with a virtual subscription to a 24/7 Live Emergency Response Team for delivering accurate and clear health information securely to first responders and healthcare professionals during an emergency. This is where I ordered the medical ID that I wear when a lot when traveling.
  • Stay safe on the go with the Road ID mobile medical ID
  • You can also carry important medical information on a written or typed card in your wallet
  • You can order medical IDs from pharmacies
Medical ID Quick Tips
  • Be specific in what you engrave on your medical ID. An ID that says “blood thinner,” “anticoagulant,” “medical condition” or just displays a medical or red cross symbols is not specific enough.
  • Your ID, at a minimum, must say what anticoagulant you are on.
  • Make sure your medical ID looks like a medical ID. The purpose is functionality, not fashion.
  • You can carry multiple ID’s. I have one that I wear (bracelet or necklace), one on my keychain and the mobile app on my phone.
  • More reasons why you should wear a medical ID.

Share your story. Do you wear a medical ID? Are you planning on ordering one? Where is your medical ID from? Has it saved your life in an emergency? Do you think you need one? Why or why not?

There is hope for healing and you are not alone,

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Warfarin and Vitamin K – Why You Need Both

Why you need warfarin and vit k

If you’ve been diagnosed with a blood clot, chances are you are taking a blood thinner, which is very commonly Coumadin or warfarin. If you’re like me and have been diagnosed with a clotting disorder or have a high chance of re-occurring blood clots, you might even be taking warfarin for the rest of your life. The prospect of having to monitor a potentially dangerous condition, let alone take medication forever, is overwhelming and worrisome for many, including myself. Warfarin can be difficult to manage, is not entirely safe for your liver over an extended period and has some pretty notable interactions with other vital nutrients, mainly vitamin K. In fact, you may have even been told by a medical professional to stop eating foods high in vitamin K. While warfarin and vitamin K do interact, the potential harm of completing eliminating vitamin K from your diet may be proven to be more dangerous than creating a consistent level of it in your blood.

Why Vitamin K Matters

Vitamin K is a naturally occurring vitamin most commonly found in green, leafy vegetables such as spinach, broccoli and lettuce (see an extensive list of foods here). Your body uses vitamin K from foods you eat and also bacteria in your intestines to produce some of the factors that help your blood to clot.

Why Warfarin Matters

Warfarin interferes with how your body uses vitamin K by preventing the production of vitamin K clotting factors in your liver. This can cause clotting to occur at a much slower rate and creates the potential for unwanted bleeding problems or additional clotting in your veins.

How Does Vitamin K Affect My INR?

Changes in the amount of vitamin K you consume through your diet can alter the liver’s ability to process warfarin and change the amount of blood thinning properties in your body. Your INR refers to a standardized way to measure how quickly your blood is clotting. The lower your INR, the more quickly the blood clots or the “thicker” the blood. If your INR is too low, you could be at risk for further clotting. The higher your INR, the longer it takes the blood to clot or the “thinner” the blood, putting you at risk for bleeding problems. With an increase in vitamin K your INR level may drop, creating the potential for unwanted clotting.  A decrease in vitamin K intake may increase your INR, creating the potential for unwanted bleeding.

What We’ve Been Told

Most of us have been told to avoid vitamin K like the plague.

Beyond the Blood Thinner – Why You Need Vitamin K

You may have seen this article posted on the internet or in a variety of forums you visit. I first found the article through Stop the Clot National Blood Clot Alliance. The headline screams, “Warfarin a potential heart-attack risk,” which immediately elicited concern from myself and I am sure many others. I started reading, expecting to find something about some horrible thing warfarin was doing to my heart (instead of my liver) and was shocked to read this instead, “Vitamin K deficiency caused by the long-term use of warfarin has a wider range of health implications than commonly known, including the calcification of organs that can lead to life-threatening problems like heart attack.” And then, “Warfarin is a commonly used medication in the prevention of blood clots but depletes vitamin K levels. However broader effects of the deficiency on various organs and functions are not well understood.”

We are taking warfarin, it’s depleting our body’s natural vitamin k stores – which are important for a variety of things, most notably the hardening of arteries in the heart, potentially creating serious health implications – and we are being told not to replace it.

Let that sink in.

In our need to manage a serious clotting condition, have we been creating potential problems for our hearts and maybe other organs? I’m not willing to take that chance.

A New Way of Thinking

It is not about eliminating vitamin K from your diet. Per Stop the Clot, “One good way to think about vitamin K and its importance while taking warfarin is that you need to maintain a balance between the amount of vitamin K in your body and the amount of warfarin prescribed by your health care provider.” You should aim to keep the amount of vitamin K in your diet consistent. For example, if you eat two servings of foods per day that are high in vitamin K, you should continue doing that. If you don’t eat foods rich in vitamin K at all, do not suddenly decide to eat large amounts of them. Clot Care also confirms, “It is a common misconception that people on warfarin should avoid vitamin K. Reducing your vitamin K intake can cause your INR to increase and may make it more difficult to control. Rather than avoiding vitamin K, you should maintain a consistent intake of vitamin K by maintaining a consistent diet. In other words, from week to week, you should eat the same types of foods.”

Nowhere does it say, never ingest vitamin K, you can never eat salad again or kiss that calming cup of green tea goodbye. It is about consistency and slowly reintroducing vitamin K foods into your diet if you desire to and have previously eliminated them.

Yes, You Can and Should Consume Vitamin K

You do not have to avoid foods or other products that are high in vitamin K; these foods have many other vitamins and minerals that are part of a healthy diet, particularly when it comes to your heart. The most important thing to remember about vitamin K intake is being consistent as much as possible and communicating any changes that may occur.

But that’s Not What My Doctor Said

Unfortunately, I think it is easier for doctors to tell you to avoid vitamin K (and all of the wonderful, nutritious, satisfying foods that go with it) because it is just plain easier. This way, doctors can build a baseline for your warfarin dosing without having to worry about vitamin K obtained from foods and nutrients affecting your INR. Chances are you were not consuming green leafy vegetables on a consistent enough basis to include a vitamin K allowance in your treatment planning. Sure, we all enjoy a salad now and again or eat broccoli once in a while with dinner, but how many of us (truly, honestly, let’s top kidding ourselves for one moment) could say without a doubt that we were eating three cups of spinach four days a week, a half a cup of broccoli or green beans two nights a week and scallions in our omelet every other Sunday? It’s difficult to say unless you are very conscious of it and most of us grossly underestimate the amount of greens we actually consume, even though we should be consuming them frequently.

Almost Everyone I know who takes Warfarin Avoids Vitamin K

Not anymore. I remember the first time I posted that I was taking a vitamin K supplement in an online forum. It was in regards to a forum member’s frustration over her inability to maintain a therapeutic INR level. I posted- “I am taking warfarin and also vitamin K, both prescribed and monitored by my doctor. I started taking vitamin K after being on Arixtra injections [blood thinners that are injected into the stomach daily] for over ten months, which was concerning to my doctor because Arixtra is non-reversible [you cannot be given an anecdote to stop bleeding if you are seriously injured, for example in an accident] and there is not a lot of research about adverse effects to the body [beyond a typical-length pregnancy in which women are often put on injections to reduce the risk of clotting]. In light of some successful research, my doctor decided to actually put me on a low dosage of vitamin K to create a balance of warfarin and vitamin K in my blood. Within a month or so, my INR stabilized for the first time since leaving the hospital and I have not been on injections since. I also posted this link to some of the research that I could find myself.

I remember the first comment my reply received, “Sara, you need to get a new doctor pronto because yours will certainly kill you if you are taking vitamin K.” More of the like ensued and no one backed me up, leading me to believe I was alone in my treatment and my treatment’s success.

I was horrified. Since the beginning, I had trusted my doctor – he had after all found the Antiphospholipid Antibodies when the Emergency Room Doctors were all too hasty to send me away with three month course of blood thinning therapy blaming my DVT and severe PE on birth control and birth control alone. My case was so severe that a specialist was called in, my now hematologist, who I credit with saving my life and providing me with the ongoing care I so desperately need and will need from here on out. He had not yet steered me wrong. He explained what happened, my treatment and what to expect in recovery when no one else had, not a single person.

There was no chance I doubted him on vitamin K. I kept up with my treatment. I ate greens about as consistently as I had – a few times a week and slowly increasing as I worked to get my diet and weight loss back on track. Through it all, I keep him informed of any major changes and continue to get my INR monitored at the least, bi-weekly.

What Should I Do?

Talk to your doctor. We need to be an advocate for our own health and we cannot let blood thinners determine how we choose to live our best lives.

Discuss incorporating vitamin K rich foods back into your diet with your doctor; taking a supplement or alternative treatments (i.e. Xarelto) that do not affect vitamin K. Also discuss the implications of the absence of vitamin K in your body.

In is also important to keep in mind that other things impact the body’s vitamin K production and warfarin’s ability to metabolize including, but not limited to vitamins, nutritional supplements, antibiotics, bacteria/viruses, illness and stress.

Resources

Share your Story. What are your thoughts on vitamin K and warfarin? Do you take or eat foods rich in vitamin K? Why or why not? What did your doctor tell you about vitamin K? Did you read the heart-healthy article? What are your thoughts on needing vitamin K?

There is hope for healing and you are not alone,

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