10 Things to Know About APS

Shortly after I was diagnosed with blood clots, I was diagnosed with antiphospholipid syndrome, or APS. When my doctor gave me the news I was still in the hospital, and I had no idea how to say “antiphospholipid” let alone did I understand what it meant. I gathered from the concerned faces in the room – my doctor’s and my husband’s – that it was something horrible, but I was in too much pain from my blood clots to think much more about it at the time. It wasn’t until I got home from the hospital and started looking online that I learned more about this disease. What I found out scared me.

Antiphospholipid syndrome is an autoimmune disease in which your blood clots abnormally because your body mistakenly produces antibodies that attack phospholipids, a type of fat that plays a key role in clotting. It can lead to an increased risk for blood clots, like the DVT and PE that I experienced. It can be called lupus anticoagulant, antiphospholipid antibody syndrome, or Hughes syndrome (primarily in Europe). APS can be different for everyone. Some people do not experience blood clots, and some people have ongoing, or serious, health complications like stroke or heart problems. Some people even carry these antibodies in their blood, but they never cause an issue.

There is no cure for APS, but there is treatment, which usually involves preventing recurrent blood clots with an anticoagulant. If you have been diagnosed with APS, it is critical that you get connected with a doctor who understands this disease, and who can help determine what the best treatment is for you. An APS diagnosis is frightening and overwhelming, but it is also manageable. It’s important to learn about it, and connect with people who understand, such as a knowledgeable doctor or medical team, and people who share your experience.

Here are ten things I wish I knew from the start:

1. APS is an autoimmune disease, but it’s not the same as lupus.

Lupus and antiphospholipid syndrome share many traits, but they are not the same disease, due to the antibodies that are present. Like antiphospholipid syndrome, lupus is an autoimmune disease. It’s likely that lupus results from a combination of your genetics and your environment too. About 50 percent of people with lupus do have antiphospholipid antibodies (Source: Johns Hopkins).

2. APS affects women more than men, and it is a major cause of recurrent miscarriage and pregnancy complications, when no other issues are found.

Women are generally more affected by antiphospholipid syndrome than men, but it can still happen to anyone. If you are a female who has struggled with recurrent miscarriages or stillbirths for no apparent reason, it might be a good idea to touch base with your doctor about whether or not APS is something you need to be concerned about or investigate further.

3. There is specific criteria to diagnose APS, and just because a person has the antibodies, does not mean he or she has antiphospholipid syndrome.

There are three blood tests that are used to diagnose APS: lupus anticoagulant, anticardiolipin, and anti-B2 glycoprotein I. These blood tests detect abnormal proteins – also called antibodies – in the blood. If APS is suspected, a person is usually tested using all three of these blood tests, because each test individually cannot detect all of the antibodies. At least one of these tests must prove positive and be confirmed on two occasions, no less than three months apart. Certain clinical criteria must also occur to confirm an APS diagnosis, such as one or more miscarriages, or a clotting event (Source: APS Foundation of America, Inc.).

Positive tests results without a blood clot, for example, does not mean a person has this disease. There are people who have the antibodies, but they do not have antiphospholipid syndrome. Diagnosis of APS can be complicated, so it is best to talk to your doctor about your individual situation.

4. APS can cause many other health problems.

Depending on if, and which, organs are affected by restricted blood flow due, usually from blood clots, and for how long, antiphospholipid syndrome can cause significant, or even permanent damage. These complications can include kidney failure, stroke, cardiovascular problems (heart damage, circulatory problems), lung problems (pulmonary hypertension and PE), and pregnancy problems (miscarriages and stillbirths).

In very rare cases, APS can progress to a chronic state known as catastrophic antiphospholipid syndrome (CAPS), which can cause widespread organ failure, and even death.

5. There are risk factors for APS.

A person’s own immune system causes antiphospholipid syndrome by producing antibodies that attack healthy cells, but doctors aren’t really sure why. These antibodies may be triggered by an environmental factor, such as an infection, that occurs in an individual who has a genetic background that makes him or her more susceptible to the disease. The exact genetic component of APS is, however, unknown at this time (Source: American College of Rheumatology).

6. There are signs and symptoms of APS.

There are symptoms of antiphospholipid syndrome, but sometimes, these symptoms can also be a result of other health concerns, which is why APS can be difficult to detect. Some of the symptoms include blood clots (DVT and PE), multiple miscarriages or stillbirths, stroke, transitory ischemic attack (TIA, or “mini” stroke), rash or skin ulcers, neurological problems (chronic migraines, headaches, or even seizures), cardiovascular problems (damage to heart valves), and bleeding (decrease in platelets, which can make symptoms hard to detect). (Source: APS Foundation of America, Inc.)

7. Prompt and accurate diagnosis of APS is very important.

Just like blood clots, timely and accurate diagnosis of APS is very important. The sooner a person is diagnosed with antiphospholipid syndrome, the sooner he or she can begin a treatment plan to reduce or eliminate symptoms of the disease. Connecting with a specialist, like a hematologist or rheumatologist, is important to diagnose and treat APS, because it is a very specialized, and sometimes complicated, disease. You can read more about how prompt diagnosis and treatment helped to save my life here.

8. There is no cure for APS, but there is treatment.

Medications, like anticoagulants, can reduce your risk for blood clots, and as a result, many of the problems that can occur has a result of blood clots. Generally speaking, APS patients are treated with the oral anticoagulant warfarin, or injections of heparin or low molecular weight heparin. Sometimes, people with APS also take an antiplatelet drug, like aspirin, to reduce their risk for stroke (Source: The National Blood Clot Alliance).

It’s important to address any risk factors for blood clots, such as estrogen for birth control or the treatment of menopause symptoms, obesity, or smoking. It’s also important to address general health concerns like diabetes, other autoimmune disorders, high blood pressure, and high cholesterol.

APS antibodies can come and go, but once a person has been diagnosed with the disease, they always have the disease. Treatment plans can vary from individual to individual, so make sure you are working with your healthcare team to ensure the best treatment possible for your situation.

9. There is still a lot to learn about APS.

Doctors – and patients – know more about antiphospholipid syndrome than we used to, but there is still a lot to learn, particularly about where APS comes from and why. Another important area of study is to what extent new oral anticoagulants, or factor Xa inhibitors, are effective at preventing recurrent blood clots in patients with APS.

10. APS is serious, but it is manageable, in most cases.

For many people, treatment of APS is not very different than treating blood clots, and management of the disease is often focused on managing recurrent symptoms. Taking a blood thinner like warfarin, though, can result in lifestyle changes that are sometimes difficult for patients to undergo. As new advances in technology and treatment emerge, I hope that we can one day find a way to cure or repress this disease.

There is hope for healing, and you are not alone.

 

 


Reader Writes In: What’s one thing you wish you knew about antiphospholipid syndrome when you were diagnosed?


Read more about how I live with antiphospholipid syndrome.


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.

Living with Antiphospholipid Syndrome

In 2012, I experienced a pain in behind my left knee that felt like someone put my skin and muscles in a vice-grip. I thought it was the recurrence of a running injury, and I decided to rest for the weekend. I soon experienced pain in my side that made it hard to breathe and impossible to lay down flat to sleep. It felt like the air was being slowly, but surely sucked from my lungs as more time passed. At the insistence of my primary care physician, I went to the emergency room, where I was diagnosed with a blood clot in my leg (deep vein thrombosis or DVT) and a life-threatening blood clot in my lung (pulmonary embolism or PE). I was admitted to the intensive care unit, where I stayed for several days as doctors worked to stabilize my situation and waited to see what would happen. When I eventually went home, I faced an extended recovery period that was unlike anything I ever expected.

In a lot of ways, blood clots were just the beginning for me. Shortly after I was diagnosed with DVT and PE, I was also diagnosed with antiphospholipid syndrome, or APS. It is an autoimmune condition in which your blood clots abnormally because your body mistakenly produces antibodies that attack phospholipids, a type of fat that plays a key role in clotting. APS – and to a lesser extent hormonal birth control – was to blame for my blood clots.

It was early June, and since June is APS Awareness Month, my internet searches revealed quite a lot of information about this disease, although it still seems like there is still more to learn. APS affects women much more than it does men, and not a lot is known about how a person acquires it. It is believed to be triggered by an environmental factor, such as an infection in an individual with a genetic makeup that makes him or her more susceptible to the disease, or from an autoimmune condition, like lupus or Sjogren’s syndrome.

Doctors don’t know why I have APS, or why it triggered such extensive clotting in my body. Some people with APS do not develop blood clots at all, however, antiphospholipid antibodies are present in 15 – 20% of all cases of DVT, and in one-third of new strokes occurring in people under the 50 years old (Source). In women, antiphospholipid antibodies can be a major cause of recurrent miscarriages and pregnancy complications. APS can also lead to numerological symptoms like chronic headaches and migraines, heart disease, and bleeding as a result of low platelets, which is another problem that I have encountered. In very rare cases, excessive clotting can lead to widespread organ failure and what is known as catastrophic APS, or CAPS. There is no cure for APS to date, and even though the antibodies can go into remission, the disease never goes away.

I don’t often think of myself as living with a chronic, or long-term disease, but in reality, that is what I am doing. I am fortunate that APS has not caused any additional problems for me, but there are ongoing concerns about my blood’s increased tendency to clot. As a result, my treatment involves taking anticoagulants, or blood thinners, for the foreseeable future, along with some other supplements to maintain the health of my blood, including folic acid, vitamin k, and iron. I also take aspirin, an antiplatelet, to help prevent stroke. I take the blood thinner warfarin, which is the only suitable treatment for me at this time, so I have to get my blood’s PT/INR monitored regularly through vein draws at my doctor’s office to make sure my medication is working properly. Depending on how I am doing, I could have my PT/INR monitored weekly, or every few weeks, it just varies. One thing is for certain though, with warfarin, I can never stop monitoring my blood to ensure its effectiveness, and my safety.

Antiphospholipid syndrome, and blood clots, have changed my life in a lot of ways. I go to more doctor’s appointments and manage my treatment to the best of my ability, which can be time consuming. Managing APS is often the same as managing my future risk for blood clots. I need to take my medication as prescribed and stay in communication with my healthcare team about any changes in my body, or any new concerns I have. I need to talk to my doctors and take precautions if I have surgery or am hospitalized, plan a pregnancy, or become pregnant. I need to remain vigilant for signs and symptoms of blood clots, stroke, and heart disease, and try to make or maintain the lifestyle changes that promote health and happiness, such as eating well, hydrating well, exercising on a regular basis, and making time to de-stress and relax.

Living with APS can also be challenging emotionally, and there are times when I struggle with that more than the physical care I undergo. I sometimes worry about the long-term repercussions of having this disease, and wonder what, if anything, might happen next. Will I wake up one day and have a stroke? Will my heart fail me? Will APS lead to another complication that is not so manageable? I wonder why I got APS in the first place, and I wonder if I could have done something to prevent it, before it led to life-threatening blood clots. It can be hard to overcome these thoughts, and they can bring me down, especially when I am overwhelmed and facing stressful situations, or when I have concerns about something my body might be trying to tell me.

I manage my feelings about living with APS in two ways. One, I have an excellent medical team, including a hematologist, who manages my ongoing care. I get blood work done about every three months to monitor for additional problems, or concerns. I see my doctors regularly for follow-up appointments, and I do not hesitate to call if I have a problem in-between those appointments.

Second, I try to be positive about what I have been through, and where I am going. APS is different for everyone, just like blood clots, and my experience will not be the same as the next person’s experience. If DVT and PE are the worst complications I experience as a result of antiphospholipid syndrome, I know that I have already survived the worst. I continue to hope that perhaps the worst really has come and gone, and each year that I do not have another complication, my hope continues to grow.

The most important thing for me to remember is that although I have an illness that will never go away, I can still live a happy, healthy life. If you have been diagnosed with APS, you need to understand this too. APS is serious, and it is scary. An APS diagnosis can feel like the end of your life, and yes, it can lead to some serious consequences. There is no cure now, however, APS is manageable and treatable in most instances. Make sure you have a specialized medical team, or doctor, and make sure you learn as much as you can about antiphospholipid syndrome. Take care of yourself to the best of your ability, and if you’re struggling to process your diagnosis or treatment, talk to a professional who can provide you with strategies and coping tools for managing chronic illness.

Where to Go for More Information

There is hope for healing, and you are not alone.

 

 


Reader Writes In: Do you have antiphospholipid syndrome or another clotting condition? Share your story in the comments below.


Read more about antiphospholipid syndrome on my blog.


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.

Why You Need A Medical ID

Disclosure: I was given a credit from American Medical Id® to select and engrave a medical ID product for review. Although this product was a gift, all opinions in this review remain my own, and I was in no way influenced by the company.

As a child, I had a friend who wore a medical ID for a peanut allergy. I asked her about it once, “Do you like wearing a bracelet all the time?” She just stared at me, and then she said it didn’t matter. She said it was important because peanuts could really hurt her, and the bracelet let people know. I remember being afraid of peanuts for a little while, because I didn’t understand, and then I wondered what it was like to wear a big, shiny bracelet all the time, even in the swimming pool and to bed. I’ve never forgotten the image of that giant medical bracelet on her tiny wrist.

I never imagined that I would be in a situation of needing to wear a medical ID. For my childhood and a good part of my young adult life, I didn’t have allergies, health conditions, or medications that were important to know about in an emergency. However, a DVT and PE in 2012 changed all of that and I found myself on long-term treatment with the blood thinner warfarin indefinitely. For the most part, I view warfarin as something that I need to stay safe, if not alive, and I don’t hate it. It’s hard for me to think of it as life-saving, but I do know it helps to prevent another blood clot that I might not survive again.

Blood thinning medications do help save lives, but as with any medication, there are risks that come along with taking blood thinners. One of those risks is unwanted or uncontrolled bleeding, and usually, you can avoid bleeding risks by taking your medication as prescribed and keeping in good communication with your doctor. If you take warfarin like me, have your INR monitored regularly to ensure effectiveness.

Catastrophic bleeding – like from a car accident or injury – can produce life-threatening bleeding that requires emergency medical treatment. I don’t think about being on warfarin all of the time anymore, but it’s never too far from my mind, and one of my worst fears is that I will have an accident while I am on it and be unable to tell anyone that I am taking this medication. When I started thinking about all of the ways I could be injured without someone there to help me, or without someone who knew me, I realized that a medical ID was an essential part of caring for myself after a blood clot.

If you take an anticoagulant, you should consider wearing a medical ID so that emergency responders and medical doctors know how to best treat you in an emergency, or if you can’t share your medical history yourself. It is important that they not only work as quickly as possible to stop any life-threatening bleeding, but also that they understand you are at risk for blood clots.

There are numerous places to purchase a medical ID from, and I don’t believe they are all the same. I’ve had a few medical IDs that were not worth the money I spent on them. When I was given the opportunity to review a medical ID of my choosing from American Medical ID®, I was excited to give them a try. I chose the Sterling Silver Medallion Red Charm Bracelet for my medical ID.

Front of my American Medical ID®:

What I love: The medical emblem is large, red and easy to identify in an emergency. The charm design is unique and feminine too, but it is still recognizable as a medical ID. The design I chose is sterling silver and it is of high quality.

What I wish was different: I wish the chain was heavier/chunkier. This is a lot more delicate than I thought it would be, so if you like delicate jewelry, you will definitely love this. I also wish it was easier to get on and off (I don’t sleep in it unless I am traveling away from home), but I think this is pretty standard with any clasp such as this one. I’m not worried about it coming off accidentally, it’s very secure.

Back of my American Medical ID®:

What I engraved:

My Name (first and last)
My Date of Birth (XX/XX/XXXX)
WARFARIN ASPIRIN
PROLONGED PTT W/
INHIBITOR INR
HX VTE

A note about my engraving: I talked to my doctor about my situation, and he suggested I keep this information regarding a prolonged PTT with inhibitor INR readily available in case of an emergency. He also said to let my family members know this information in case I am ever hospitalized or need surgery. I have an interesting and complicated set of circumstances. In short, this information means that a heparin (blood thinner) IV, should I need it, could be inaccurately dosed due to an INR inhibitor that I have. I have this information stored in my phone – and in my relative’s phones – and now on my new medical ID.

What I love: For the size of the charm, I could fit a lot on this ID. The type is large and easy to read.

What I wish was different: I wish the engraving was oxidized, or a little darker (it is still readable).

I consider a medical ID an investment, and it might be something you have with you for a very long time. Since I have been taking a blood thinner, I have had a few medical IDs. Some with different names of the different blood thinners I have been on, updated contact information, necklaces, bracelets, and even a keychain. I am a jewelry person, but I was annoyed and frustrated with always having to think about – let alone wear – a medical ID. I like to change my jewelry around often, and I don’t like to sleep in it. If I am going to wear something all of the time, I have to love it, and let’s be honest, who loves a medical ID?

It may not be something we wish for or want, but I do think American Medical ID® makes it a whole lot nicer to own a medical ID. I love that they offer a wide variety of styles and products – for men and women – with a broad range of prices too. I believe there really is something for everyone from American Medical ID®. I like the way my American Medical ID® stands out among the other bracelets I wear. It looks like a medical ID, but it is also one that I feel good wearing because of the style. This ID is extremely lightweight and comfortable to wear.

American Medical ID® has an easy to use, and very informative, website. The engraving process is also simple – it costs just $7 – and they also have excellent customer service. I got my ID really quickly – within a week of ordering – and it came expertly packaged and included a small carrying or storage pouch. If you’re looking for a medical ID, I recommend you try American Medical ID®. I’m really happy with my bracelet, and I plan on wearing it.

Here are some of my thoughts about how to select and engrave your medical ID.

My Top Tips for Selecting a Medical ID:
  • Pick one that looks like a medical ID (not one that is too “pretty” or that “blends in”)
  • Pick one that is comfortable for you, or that fits in with your lifestyle
  • Pick one that is easy for you to wear, or get on and off

More tips from American Medical ID® about how to select your medical ID.

My Top Tips for Engraving a Medical ID:
  • Talk to your doctor about what to engrave on your medical ID. You may think this sounds silly, but I had no idea what should actually be on mine, until my doctor happened to mention it.
  • Include your full name
  • Include your date of birth (month, day, year)
  • Include the name(s) of your medication (I don’t recommend saying “blood thinner” or “anticoagulant” because it is not specific enough. Some anticoagulants have bleeding reversal agents, and some do not.)
  • Include your medical history, or essential facts about your condition
  • Include an emergency contact number

More Tips from American Medical ID® about how to engrave medical ID.

More Tips:
  • If you think your medication might change frequently, don’t get an expensive medical ID
  • Once you do get a permanent ID, select a material type that will last (I prefer stainless steel or sterling silver)
  • If you can’t fit everything you think you need on your ID, you could engrave “See Wallet Card” or something similar, and then carry additional information on your person
  • If you don’t wear jewelry, consider a keychain, or other accessory that you can carry with you

Read more from American Medical ID® about why a medical ID is critical.

If you’re taking a blood thinners, I strongly suggest wearing a medical ID. Thank you to American Medical ID® for the opportunity to review and wear an ID from you.

There is hope for healing and you are not alone,

 

 


Reader Writes In: Do you wear or carry a medical ID? Share in the comments.


Thank you to American Medical ID® for the opportunity to review and wear one of your medical IDs.


Get more tips about how to engrave your medical ID from BCRN.


Have an iPhone? You can update your iPhone with a portable medical ID (and it is free). Go to your Health App (pink heart) and select Medical ID to fill in your personal info). Also, find other ways to stay safe on the go.

Why I Use the Sagely Smart Weekly Pill Organizer

Please note, I have been given a Sagely Smart Weekly Pill Organizer by the Sagely company to review. Although this product was a gift, all opinions in this review remain my own, and I was in no way influenced by the company.

For as long as I can remember, I have taken a pill. I was diagnosed with hypothyroid disorder early in my life, and I started taking medication to treat my condition at that time. My parents were really good at teaching me that it was important to take my medication like the doctor instructed, and I carried that knowledge into my adult life. Periodically, I also took other medications, vitamins and supplements, based on various needs or problems as they arose. It was never difficult or problematic to manage two or three medications. I just took my pills out of the container they came in first thing in the morning.

Now, as a patient who must take a blood thinner every day, medication remains important to my daily routine, perhaps now more than ever. When people ask me how I feel about depending on a pill to keep me safe – if not alive – I don’t know how to answer because I have always had to take a pill to stay healthy. What I wasn’t expecting was to take pills multiple times a day and feel like I am years and years older than I am. I wasn’t expecting to get excited by pill containers or medication management systems – maybe because I never thought pills would require managing – yet I do. Currently, I take between six and eight pills total, two times a day.

If you follow me on social media, you may have noticed I often share medication management systems because if you take blood thinners, as with all medications, it’s important to make sure you take them and take them at the right time. I have found that a pill box or container is the easiest way for me to know if I have taken my medication or not. Since I take multiple pills, taking them right our of the prescription bottle is no longer a good solution for me. It makes it hard to remember if and when I took my medication.

I’ve used many different types of pill containers over the last few years and although I have a few I like, lately I have been searching for the perfect one. I need something that has enough space for all of my pills, is easy to use and fits within my budget. I began using the Sagely Smart Weekly Pill Organizer, which is revolutionary in its design and definitely unlike anything I have used before.

Below, I am sharing my thoughts about the Sagely Smart Weekly Pill Organizer. Watch my video to hear what I have to say, or read on for my review.

Sagely Smart Weekly Pill Organizer Review

What I like about this pill container:

  • Each day is a separate box (or Pod) with two distinct compartments.
  • The Sagely system allows you to count out your pills on top of the Pod – so you can see which pills you have already distributed – before pushing them through the lid into the Pod itself (you don’t have to open the Pod at all until you are ready to take them). Watch this video to see how it works.
  • The Pod lids are made of soft, food-grade safe material and are very easy to open if you have pain or swelling in your hands.
  • Each Pod sits on a magnetic base, so if you are traveling, you can grab the days you need and go.
  • The Pods are very deep and can hold multiple pills and capsules.
  • It is a very attractive, contemporary design and is nice to look at.
  • There is an accompanying App to help manage your medication.

What I don’t like about this pill container:

  • The base is long (about 12 inches) and takes up a lot of space on a counter or dresser.
  • The Pods are divided into two compartments which are distinguished by color, but do not have AM or PM printed on them, so I can get easily confused about which is which when I am filling the Pods. This problem is resolved once I make up my mind which color to use for which time of day.
  • The lids close like a Tupperware container, and I find I have to double check to make sure they are closed after I take my pills.
  • This pill container is expensive, but it is worth the cost if you are looking for an extensive or unique medication management, with multiple features.

Average Price: $29.95 – $39.95

Where to purchase: Sagely gifted me this product to share my thoughts with all of you, but you can purchase it on Sagely’s website here, or through my Amazon Influencer Shop.

My bottom line: I am currently using the Sagely to manage my medication, and I really like it. My favorite features are the push-through system for putting pills in the containers, how easy it is to open the containers, and the ability to travel with as many days as I need without the days that I don’t.

Are you purchasing a pill container? Get my buyer’s quick tips:
  1. Pick a pill box that suites your medication schedule. There are a variety of containers, including one day, three day, weekly, AM/PM, and even three or four times a day options.
  2. Pick a pill box that is easy for you to use (e.g. opening, closing, portability, etc.)
  3. Pick a pill box that is within your budget. If cost is prohibitive for you and you need more space, sometimes you can purchase two separate containers (e.g. one for morning and one for evening) that suites your needs.

There is hope for healing and you are not alone,

 

 


Reader Writes In: How do you manage your medication? Do you have a favorite system or pill container? Share your thoughts in the comments.


Do you take warfarin and need to keep track of your INR? Get the OATBook App for iPhone to help make it easier. *Once again available for download*


Do you struggle to remember if you took your pills? Get my tips to help you stop asking, “Did I take my medication?”

How I Eat After a Blood Clot

How I eat after a blood clot

Before I was a VTE blogger, I was a health and fitness blogger. Before I started writing about my blood journey, I wrote about my weight-loss journey. Before I was diagnosed with a DVT and PE, I was diagnosed with insulin resistance as a pre-cursor to diabetes, which motivated me to make changes in my life related to nutrition and fitness. I started running half marathons and eating better – and I eventually reversed the damage being done to my body and came off insulin-sensitivity drugs. In the process, I became enamored with nutrition, fitness and running and continued training – and writing about it – up until that weekend in June of 2012 when un-relenting calf pain turned into a blood clot in my lung and I was out of the fitness game for the next three years.

During my recovery, I gained back all of the forty pounds I had previously worked so hard to lose – and then some. I stopped focusing on making good choices when I ate food and while I didn’t go overboard, my body reached its highest weight ever and I plateaued there. There was nothing I could do – or wanted to do – to change it at the time. My singular focus was on recovery from my blood clot including managing my pain, decreased lung function, leg swelling, a fluctuating INR, multiple doctor visits, physical setbacks, emotional trauma and the numerous lifestyle changes that come with all of the above. Still, in the back of my mind, I knew I had to get the weight off. Once physically recovered from my blood clot, I still felt horrible, lethargic, fatigued and out of control because of my weight. My self-esteem took yet another beating when I already didn’t have much self-esteem left. Eating – and the choices I was making about food – were wrecking havoc on my emotional health.

It’s hard to eat consciously on a regular day, let alone when you are managing an ongoing illness. Now, some of the most common questions I receive at BCRN are, “How do I eat healthy on a blood thinner and how do I lose weight after a blood clot?” While I am not a doctor, nor am I a nutritionist, I am sharing what as worked for me and some tips that I believe can help benefit anyone who is trying to lose weight or make better choices when it comes to food. Studies tend to show that in terms of weight loss, diet plays a much bigger role than exercise – and just because you are taking an anticoagulant does not mean you can’t eat for weight loss and/or optimal health. As a rule, it is important to discuss any dietary changes you want to make with your physician before you make those changes. I talked to three of my doctors – hematologist, endocrinologist and GP – before I made these changes.

Overview: Establish or find a nutrition plan.

Worst first, right? When talking about nutrition for weight loss, it is important to find a diet plan that works for you (here is the only place you will see me use the word “diet” in this context. I refer to the way I eat as a lifestyle, not a diet because it is how I prefer to eat and it is what makes me feel good). The internet, books, magazines, etc. are filled with an overwhelming amount of information about how to eat, when to eat, what to eat and what’s the right way to do things. The thing is, though, finding a plan is just as individual as the blood clot treatment plan you are on. There is no right way because each of us is different.

I have spent many years researching ways to eat and tried a multitude of the plans that are out there – Weight Watchers, Paleo, Whole 30, Low-fat, Autoimmune Protocols, Gluten-Free, Blood Type Diet, Low Calorie, High Calorie – all of them have their pros and their cons. Finding one that works is entirely up to you.

I have chosen to incorporate pieces and parts of these plans to make my own plan, with the guidance of my doctor. The basics of my plan include:

  • 1,500 calories a day (or about 500 calories a meal) – drastically cutting calories does not work for anyone.
  • A focus on eating macronutrients each day with a goal of not more than half of my daily intake of nutrients being carbohydrates, about 30 percent of my daily intake of nutrients being fat and about 30 percent of my daily intake of nutrients being protein.
  • I do not eat (or I limit) white grains (rice, pasta, bread), potatoes (all kinds), sugar (and alcohol), dairy (cheese, sour cream, milk, creams, etc.), soy, whey, protein powders.
  • I eat chicken, beef and fish (although I do limit my intake to a few times a week as a personal choice), beans, eggs, nut butters, vegetables (the list is large: peppers, onions, mushrooms, spinach, broccoli, green beans, tomatoes, squash, asparagus, etc.), sweet potatoes, whole grains (limited to once a day and is either whole grain rice or bread), fruit (apples, oranges, bananas, grapes), olive oil, coconut oil, butter (not margarine) and on occasion bacon fat or lard. I cook with almost every spice except rosemary and fennel.
  • I eat three meals a day and an afternoon snack, usually. I eat breakfast every single day (not an easy accomplishment) within one hour of waking up. A typical day for me is brown rice, spinach, and an egg fried in butter for breakfast; more spinach and beans or roast beef on a whole grain tortilla and spinach with mustard for lunch; chicken/steak and vegetables or a sweet potato with almond butter and vegetables for dinner. Snacks might be an apple with almond butter or Greek yogurt.
  • I do allow myself to have treats. I eat out about once a week with no restrictions, have a pinch of sugar and sometimes cream in my tea each morning and consume wine every now and then.
Fill up on good things – what works for you.

Finding out what makes you feel good – and is healthy –  is important. Once you do, eat those things in excess, even in spite of calories goals. I eat spinach every day because it makes me feel healthy, strong, energized and full. Eating protein makes me feel full. Eating nut butters, fruit and on occasion chocolate makes me feel happy. If I am hungry at the end of the day, I eat a sweet potato, popcorn or a even a piece of chicken, even if I am going over on my 1,500 calorie goal.

Cut out the bad things – what doesn’t work for you.

In the beginning, I read It Starts with Food by Dallas and Melissa Hartwig, which gave me a lot of insight into how poor nutrition might be affecting our overall health, including inflammation in the body. I did the Whole 30 Challenge where I eliminated grains, dairy, sugar and alcohol according to the plan for 30 days. At the end of the thirty days, I started adding things back into my diet that I previously loved to eat and was certain I couldn’t continue living without. Certain things made me feel horrible – and still do to this day. I avoid milk and white grains (rice, pasta and bread). On the other hand, I do love white rice – especially from Chinese take-out with a lot of hot sauce. I eat it once in awhile, but I am prepared to face massive joint swelling and pain the next day so my once in awhile is really only that – once in awhile.

I rarely eat anything that is not whole – meaning I eliminate processed foods or things that come out of a box, a bag, a container, etc.

Consistency is key.

When talking about nutrition – especially if you are taking medications that can be affected by food, like warfarin – it is important to talk about consistency. Consistency is more important than elimination, especially when discussing the foods that are healthy for you. I eat about the same amount of spinach everyday. I eat about the same amount of protein in a day. I eat about the same amount of carbs in a day. I eat about the same amount of calories in a day.

I also consistently cook at home, make two or three meals out of one (before it even goes on my plate I divide it up) and shop the perimeter of the grocery store (that’s where you find whole foods like vegetables, fruits, eggs and meat).

Write it down, somewhere, somehow.

In writing down what I eat everyday (as a means to keep track of calories), I realized two things: We as human beings consume entirely way too many calories without realizing it and we eat generally the same things each day without realizing it. Write down what you eat. I think you might find consistency is more present than you realize and you eat more than you realize. I use MyFitnessPal mobile app (or checkout the desktop version) to keep track of my calories and macronutrients. It’s free to download for iOS and Android. You can also use a paper or electronic journal.

Drink water.

I exclusively drink water – and black tea in the morning with sugar and sometimes cream. If you feel thirsty, you need to drink more water. I don’t really pay attention to cups or ounces, but I do drink to not be thirsty. If I go out, I order water. I don’t drink soda, juice or coffee very often, if at all. If I want flavor in my water, which I rarely do, I put my own sliced lemon or lime in it.

Treat yourself.

You cannot eat according to plan 100 percent of the time. It’s not healthy, either. What I refer to as treat (not cheat) meals are important to your mental attitude. I do this about once – maybe even twice – a week. I do not take a treat day, but I take a treat meal where I eat what I want (usually from a restaurant) and do not worry about calories, nutrients or goals. I may or may not write my treat meal down. I eat what tastes good and looks good to me (insert Chipotle here). Over time, I have found my desire to do this is less and less and I tend to have treats that are not really meals – a chocolate bar, a glass or two of wine, or French fries with my salad at dinner.

Don’t do weight loss alone.

Apps like MyFitnessPal have a community component where you can “Like” and “Comment,” just like Facebook. Find a group, an app, an online forum, a book, etc. – anything to make connections with other people who are on the same journey as you. Not only is it motivating, it also helps hold you accountable to your own goals.

Tips for eating well 3

To sum it up, this is what works for me – and might not work for you too. This is what I discussed with my doctor – your doctor might make different recommendations. All of that is okay.

Weight loss takes time, dedication and hard work. Changes can be slow – they should be slow, as should weight loss. With small changes, comes lasting progress. I take one day at a time. My today is not my yesterday or my tomorrow. By eating to feel good and fueling my body well, I have noticed I feel much better – and while I am losing weight slowly, the emotional benefits far outweigh the physical ones. I feel more confident, happy and secure in my decisions to take care of myself. For me, self-care extends far beyond my initial recovery to caring for my body and my mind from this point forward.

Reader Writes In: Are you trying to lose weight or eat healthy after a blood clot? What works for you? What is your favorite treat?

There is hope for healing and you are not alone,

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BCRN Awareness Matters
More information to share:

Raising Awareness with Kevin Nealon

Kevin Nealon Cover

You may know Kevin Nealon from his infectious comedies including Happy Gilmore, The Wedding Singer, Daddy Day Care and Anger Management or perhaps as a former Saturday Night Live cast member (1986-1995). Or, maybe you have seen him more recently on Showtime’s Golden Globe winning hit series Weeds.

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What you may not know is that Kevin is also an atrial fibrillation – or AFib – survivor. Just like so many of you, Kevin has battled a life-threatening medical crisis and also like so many of you, he is passionate about sharing his story to help other patients facing a diagnosis of AFib or who are facing a treatment of blood thinners as a result of blood clots, heart attack or stroke. Kevin has partnered with Mended Hearts, a national non-profit organization committed to providing peer-to-peer cardiac support for survivors of AFib and their caregivers from diagnosis to recovery, and Janssen Pharmaceuticals during March to help raise awareness about blood clots.

Each year up to 900,000 Americans experience a blood clot (DVT or PE), resulting in up to 300,000 deaths. Blood clots do not discriminate based on age, sex, lifestyle – or even fame, as in the case of Kevin. AFib is an irregular, or fluttering, heartbeat that puts people who have the condition at a five times greater risk for a blood clot that can cause a potentially fatal stroke. And in fact, AFib accounts for 15 to 20 percent of all strokes. It is estimated that 2.7 million people are diagnosed with AFib and many more do not even know it (Source).

While these are frightening statistics to say the least, speaking to Kevin about AFib was like talking to an old friend and his passion for raising awareness and ensuring that others do not feel alone as a result of their diagnosis and recovery is the resounding message he conveys.

“I love talking to people about the same health issues,” Kevin said, “It creates an instant connection.

Kevin was swimming in Mexico with his then girlfriend several years ago when he had a racing heart that was concerning enough to cause him to seek medical attention at the hospital. He thought he may be having a heart attack.

“In the hospital,” he said, “I joked about having to use the paddles on me to restart my heart. And then I found out how serious my condition was. They put me out and when I woke up the cardiologist told me the paddles didn’t work.”

Once back at home in Los Angeles, Kevin was diagnosed with AFib, which was an extremely emotional time for him.

“It was so upsetting to me emotionally and it really affected my life,” he recalls, “I was playing less basketball and missing out on playing with me son and that really started to affect me. When you have a family, you really want to be around.” Kevin remembered being very worried because AFib changed his thinking about his entire life and his previously active lifestyle.

As part of his treatment plan, Kevin was initially placed on Warfarin to prevent blood clots, which were the biggest and most concerning risk of AFib to him because of the possibility of stroke.

“I did not want to end up with a stroke,” Kevin said.

Kevin eventually switched to taking Xarelto after speaking to his doctor about his lifestyle and needs. For Kevin, a vegetarian, Xarelto allows him the freedom from known dietary restrictions and the freedom to travel to numerous appearances throughout the year without the constant need for blood monitoring.

His resounding message is that facing a life-altering medical condition is something we, together as advocates, can overcome.

“It’s not the end of the world,” Kevin says, “You can live again.”

Kevin advocates for finding a doctor you believe in, as he did, and to remain in constant communication with your medical team about treatment options.

“Ask your doctors about the benefits and risks of the blood thinners available to you and do what works for you.”

Kevin and Janssen Pharmaceuticals, along with Mended Hearts and myself, have teamed up this month to raise awareness about blood clots and blood clot related stroke and deliver a message of hope to those who are suffering from AFib, blood clots and stroke.

And, the good news is, you can help us raise awareness too. Visit www.Drive4Clots.com to watch a video featuring Kevin’s story (along with the stories of NASCAR’s Brian Vickers and golf legend Arnold Palmer), and for every view received, Janssen will make a donation to Mended Hearts. You can also make a difference for patients living with or who are at risk for blood clots and stroke by sharing this message.

Share this message on Facebook:

Visit www.Drive4Clots.com to watch a video featuring actor/comedian Kevin Nealon’s story (along with the stories of NASCAR’s Brian Vickers and golf legend Arnold Palmer), and for every view received, Janssen will make a donation to Mended Hearts to help raise awareness about AFib, blood clots and stroke during #BloodClot Awareness Month.

Share this message on Twitter:

Visit to watch videos featuring real stories about blood clot survivors and make a difference. #BloodClot Awareness

Share your story. Did you know Kevin Nealon’s story? Have you or someone you know been diagnosed with AFib? What are you doing to make a difference this month?

There is hope for healing and you are not alone,

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Thank you to Janssen Pharmaceuticals, Kevin Nealon and Michele Packard-Milam of Mended Hearts for the opportunity to discuss AFib, blood clots and blood clot related stroke and raise awareness during Blood Clot Awareness Month and beyond. Together we can make a difference.