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.

Hope for Healing After Blood Clots

I have talked about hope for healing since I first started writing this blog, Blood Clot Recovery Network. I also talk a lot about not being alone during recovery from blood clots. It seems that these thoughts have always been a part of this space, but honestly, I didn’t have hope that I would heal when I started this blog, and I was entirely alone. Not many people were talking about blood clot recovery and if they were, I hadn’t found them yet. Still, I couldn’t get these words out of my head, and they became a founding focus of the work that I do here. I said them all the time – out loud and in my writing – perhaps believing that if I said them enough times, they would in fact become truth.

Throughout my personal recovery, I often heard, “You’re so positive,” and “You’re handling this so well.” In reality, my world was falling apart. My job, my relationships, my health, and my self-esteem where all in jeopardy, and there was not a whole lot that I could do about it. It was all out of my control. I don’t routinely consider myself positive – because I am not happy and outgoing all of the time – but most people would consider me an optimist. What I realized after I healed from my blood clots was that even though I wasn’t happy – and I certainly wasn’t optimistic – I was always hopeful for what the future held. I never stopped believing that better days were coming. I realized that I didn’t have to be happy to be positive. In fact, I was downright distraught over my situation. Having hope, though, even when I was hurting inside, was a positive way to handle a difficult situation. Looking back, I have handled most difficult situations in my life by remaining hopeful for a better future.

From where I am today, the words “there is hope for healing” make more sense than ever before. Without my blood clot experience, I would not be where I am today. Now, I am not sorry that my blood clot happened to me, but it has taken me years to understand that, and it wasn’t an easy conclusion to come to. After all, it’s incredibly difficult to be grateful for something that almost ended my life and caused many years of hardship and heartache.

Despite all the pain I went through, I still choose gratitude for my situation.

Without my blood clot, I would not have had the chance to share my story, and with it, to share life-saving information about blood clots. I would not have the opportunity to meet all of you. Without my blood clot, I would not be able to pursue my passions as a writer and as a communications professional. I would not have the career I do, or the opportunity to give back to the community that has helped me heal. Ultimately, without my blood clot, I would not be able to share hope for healing with the people, who find themselves as alone as I felt when I was recovering from blood clots. I am grateful for what happened to me, because of where I am today, and because I can work each day to make a difference in the lives of other people who are suffering and hurting.

Gratitude, though, didn’t happen overnight, and it doesn’t make everything effortless, either. I still struggle to this day from time to time. I wish I didn’t have to deal with the long-term consequences of a serious health condition. I still have anxieties and fears that will always be present to some degree. What if my blood thinner doesn’t work? What if I have another blood clot? What if a bigger, scarier health crisis happens to me that I am unprepared for? Those thoughts are still present in my mind from time to time, but I have hope that I can handle whatever comes my way, because I have already handled this.

Gratitude for my experiences took years to happen, and it was very much a part of my healing process. In the beginning, I hated what happened to me. I was angry. I thought the pain would never, ever end. I wondered “why?” for years, before something finally shifted in my mind.

That shift was towards hope. I began thinking about what was ahead, not behind, for me. I began to hope that there was something out there for me. I began to hope that the pain and suffering I was experiencing was not my final destination. I stopped asking “why,”and I started hoping for a different outcome. In time, why didn’t matter so much anymore. How began to matter more. How was I going to feel better? How was I going to deal with it if I didn’t feel better? And ultimately, how was I going to take what I went through and make a difference?

I didn’t know how, nor did I have an answer to any of my questions, but I started to have hope that I would find the answers, or perhaps that the answers would find me.

To my complete amazement, things started to turn around, for the better. I didn’t believe it at first (it was too good to be true). As I built this space and this blog, I started to realize that I was not alone. I received countless messages from people who said they were going through the exact same things that I was. People began sharing their pain, and their heartaches with me. People also shared their successes and progress with me. People started telling me that they hoped because I had hope. They said because of me and my experiences, they didn’t give up.

I began to see how, and then one day I understood why.

It became immediately clear to me why I went through what I did: I was meant to make a difference in the lives of people who were suffering with blood clots as I had. The more I gave, the more I received in return. The cycle of hope and healing has unveiled some unbelievable outcomes for not only myself, but for many of you as well. I know because you tell me each and every day how something I have written, something you read in the BCRN Facebook Group, or on the BCRN Facebook Page, has made a difference for you. Time and time again, you have told me that the stories of hope and healing have cleared the path for these same gifts in your own lives.

Hope and healing from blood clots can be yours, and you do not have to suffer in silence, and alone. Honor where you have come from, and what you have been through, because you have been through a lot. Your body may be broken, but it is strong. Your mind may be devastated, but it is resilient. Be kind to yourself. Love yourself. Love your body because you’re still here, and it’s still healing. Healing is a process, it takes time, and it must be respected.

Have hope for the future and what will be. Have hope for better days, less pain, clarity, confidence, dreams come true, and yes, have hope for healing. Have hope because you are a valuable individual, who has something to give and get from this world. Hope is a gift that you all have access to right now, in this very moment, simply by changing the course of your thoughts.

If you can’t hope for yourself, I hope for you. I hope for better days ahead. I hope for healing, and I hope that you will be reminded that you are not alone on this journey.

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

 

 


Reader Writes In: How have you found hope for healing after your blood clot? What words of encouragement can you share with others?


A special message for you: That’s Called Hope


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.

Focus on Blood Clot Awareness Month

March is Blood Clot Awareness Month, or BCAM, and if you or someone you care about has been affected by blood clots, you might be wondering what you can do to make a difference. Often times raising awareness starts with simply sharing your story with the people that you already know. You can share your story verbally with friends and family, in a written note, or more publicly on your Facebook Page or Instagram account. Social media – and our online connections – make it easier than ever to share important information with people in our communities, and with people all over the world.

If you don’t know where to start with sharing information about blood clots, or if you’ve never shared your story before, I’ve outlined four specific things you can focus on to easily help make a difference during Blood Clot Awareness Month, or anytime you want to raise awareness: Blood clot risk, blood clot signs and symptoms, blood clot recovery, and blood clot prevention.

Blood clot recovery is not often a focus of blood clot awareness, but it’s still a very important thing to discuss. This month, I’ll be sharing some of my thoughts about my personal recovery from a handwritten journal I kept for the first month of my recovery. I’ve never shared these thoughts before, but now I want to share them with you.

I’ll also be sharing some of your personal thoughts about how having a support system like Blood Clot Recovery Network has made a difference during your recovery. If you’re not already, connect with me on my public Facebook, Instagram and Twitter channels to hear my thoughts. Plus, if you’re a member of my private Facebook Community, I’ll be sharing some special things there, that I won’t be sharing anywhere else. If you’re not a member yet, join for free today.     

Are you ready? Let’s get focused on Blood Clot Awareness Month.   

Focus on Blood Clot Risk Factors

Blood clots can happen to anyone, no matter who you are. They affect about 900,000 people a year, and about 100,000 people a year die due to blood clots, in the United States alone. In some cases, people may have been able to prevent blood clots by knowing puts them at risk for one.

I had no idea that I could be at risk for a blood clot, so I didn’t think one could ever happen to me. One of the most important things you can share with the people you know is information about blood clot risks.

Know the major blood clot risk factors.
  • A family or personal history of blood clots
  • Recent major surgery or hospitalization
  • Total knee or hip replacement surgery
  • An inherited or acquired clotting condition
  • You have cancer, or are undergoing treatments for cancer
  • You are immobile for a long time (confined to bed, long-duration plane or car trip)
  • You are pregnant or have recently given birth
  • You use estrogen-based birth control methods or estrogen for the treatment of menopause symptoms

That’s not all. Learn more about blood clot risk factors.

Focus on Blood Clot Signs and Symptoms

Just like knowing your risk for blood clots, it is important to be able to recognize blood clot signs and symptoms. Looking back, what was most striking about my situation is that I had symptoms of a blood clot in my leg (pain) and in my lung (shortness of breath, chest pain) at the same time. I also had these symptoms for several days, and they got worse as time passed, not better. Eventually, I called my primary care physician who recognized my symptoms as blood clots and told me to go to the emergency room immediately. This month, take time to share the symptoms of blood clots with the people that you know.

Know the symptoms of a blood clot in the leg or arm, also known as deep vein thrombosis or DVT.
  • Swelling, often in one limb
  • Pain or tenderness, not caused by an injury (sometimes feels like a cramping, or “charley horse”)
  • Skin that is warm to the touch
  • Changes in your skin color, such as turning white, red, blue or purple
Know the symptoms of a blood clot in the lung, also known as pulmonary embolism or PE.
  • Shortness of breath
  • Chest pain or discomfort, especially if it worsens when you take a deep breath, cough or lie down
  • Feeling light headed or dizzy, or fainting
  • Fast or irregular heart rate, or a rapid pulse
  • Coughing, or coughing up blood
  • Some people experience severe anxiety or feel like “something is really wrong”

When they occur together, DVT and PE are known as venous thromboembolism, or VTE. Blood clots in the lungs can cause death by obstructing blood flow, so if you or someone you know experiences these symptoms, do not delay emergency medical treatment.

Learn more about what blood clots might feel like.

Focus on Blood Clot Recovery

Recovery from blood clots is different for everyone. It can take weeks, months or years to recover fully, and some people live with long-term complications from blood clots, such as post-thrombotic syndrome, chronic shortness of breath, or even debilitating anxiety. If you have experienced a blood clot, it’s important to let people know what you are going through … and it’s also important for you to realize that they might not understand what you are going through.

Throughout my recovery, I had many people – some of them close to me – who did not understand how I felt, or understand why I was still in pain so many months after my PE. Sometimes, it was hard to talk about because it was so personal. How much – or how little – you share about your recovery is entirely up to you. During my recovery, I often found that sharing less was more. I found out pretty quickly that all I could do was share information about my situation, and if the people in my personal life didn’t understand, I moved on to talking with a community of my peers who knew exactly what I was going through.

Sometimes, sharing just a few general things about blood clot recovery can be helpful.
  • It’s different for everyone, and can include physical and emotional healing
  • Recovery can take a long time, but there’s no set time line
  • It’s not like a healing from a cold or a broken bone, it’s more like healing from major trauma
  • Some people require ongoing treatment for blood clots, which may involve taking medication and going to frequent doctor visits
  • Sometimes, people who are recovering may look normal on the outside, but they’re still healing on the inside
  • Blood clots are painful

Read more important things about what recovery from a blood clot can be like.

Focus on Blood Clot Prevention

It is true that not all blood clots can be prevented. About 30 percent of all blood clots that occur do not have a cause, or a known risk factor. However, there are several important things that you can do to prevent blood clots from happening, or from happening again.

The most important things that you can do to prevent blood clots are simple, and sharing them is an important part of blood clot awareness. If I had known or done these things in my situation, it may not have been as bad as it was.

Everyone can take simple steps to help prevent life-threatening blood clots.
  • Know your risk for blood clots. If you know your risk for blood clots or know when you might be in a situation that puts you at risk for blood clots like surgery or pregnancy, you can take additional steps to prevent blood clots. It is true that knowledge is power, or key, even when it comes to preventing blood clots. If you don’t know if you could be at risk, talk to your doctor about your concerns.
  • Know the signs and symptoms of blood clots. If you know the signs and symptoms of blood clots, you can seek help, hopefully before you find yourself in a life-threatening situation.
  • Know when to seek medical attention. If you think you might have a blood clots, seek help from your doctor or the hospital immediately. Don’t wait to see if it gets worse – or better. Get checked out sooner rather than later.

Learn more about how to prevent blood clots.

If you have already had a blood clot, there are some important things you can do to prevent future blood clots.
  • Take your medication as prescribed. The most common cause of blood clot recurrence is not taking your medication. If you’re struggling with your treatment plan, or side effects, talk to your doctor about your treatment options.
  • If you are going to be having surgery or a medical procedure, talk to your doctor about your risks for blood clots, and your risk for bleeding. Doctors have to carefully balance your bleeding and clotting risks. Don’t assume everyone knows your health history if you haven’t told them, and plan ahead if you can.
  • If you are pregnant or planning a pregnancy, talk to your doctor too. It is possible for women with a history of blood clots, or clotting condition, to have successful pregnancies. Connect with your doctor ahead of time, if you can, to talk about ways to prevent blood clots, such as taking blood thinning medications for the duration of your pregnancy.

Sharing information is the most important thing any of us can do to raise blood clot awareness, and Blood Clot Awareness Month provides the perfect opportunity to do so. If you’re not sure where to start, tell your own story and as you do, make sure to include the focus points above. Together, we can make a difference.

There is hope for healing and you are not alone,

 

 


Reader Writes In: What plans do you have to help raise blood clot awareness this month? Share in the comments.


Do you want to do more? Discover your personal plan for raising blood clot awareness.


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How to Recover After a Blood Clot

Here are my strategies to help promote health and healing after a blood clot.

After my blood clots, I felt like a fish out of water – literally and figuratively. I could not breathe without an oxygen tank, and I also felt like I had no knowledge of what happened to me, or knowledge of what to expect during my recovery. I had no idea idea how to recover after a blood clot. Those feelings of inadequacy and frustration are some of the most devastating ones that I have ever experienced. I felt like I had lost all control over my life, and I had no idea how to regain control again.

Recovery from blood clots is different for everyone. It can take weeks, months, or years, and some people struggle with complications that last even longer. My recovery was extensive – it took a couple of years – and I will be on anticoagulants long-term to prevent further blood clots. During my recovery, I often wished I had a plan to help me through it. While no singular plan exists for recovering from a blood clot, because of how varied recovery can be from person to person, there are some simple strategies that I have learned that can help you promote healing and recovery in your life.

How to recover after a blood clot.

Here are my nine strategies to help you move through blood clot recovery to a healthy – and hopeful – outcome:

1. Find a doctor who you can trust. One of the first, and most important things, that you can do during your recovery is to find a doctor who you trust. You should have no doubts that your doctor has your best interest in mind and will help you heal. If you don’t have a doctor who you consider a good partner in your care, find a new doctor. It is okay to get a second – or even a third – medical opinion about your health situation.

2. Follow your treatment plan. The standard treatment for blood clots are prescription medications known as anticoagulants, or blood thinners. While these medications don’t actually thin the blood, or dissolve blood clots, they do help to prevent new blood clots from forming, or old blood clots from breaking apart and traveling through the blood stream, which can lead to a life-threatening pulmonary embolism. The most common reason for a repeat blood clot is not following a treatment plan. Take your medication as prescribed and follow your doctor’s instructions. If you have questions, ask. Remember, you should feel comfortable communicating with your doctor at all times.

3. Understand your situation. Blood clot diagnosis, treatment, and recovery can be overwhelming – especially if you don’t know anything about blood clots. Take some time to learn about your situation, whether it be basic information about blood clots, clotting disorders, or even ways to prevent blood clots. Seek out information in books and online, but make certain that they are reputable sources, such as patient advocacy organizations, medical journals and academic publications.

4. Listen to your body. It can be difficult to know what’s normal and what’s not normal during recovery from a blood clot. Always listen to your body and what it might be trying to tell you. If you have new or worsening chest pain, shortness of breath, or headaches, always get in touch with your doctor right away. If you don’t know if what you are experiencing is normal or not, ask your healthcare team to help guide you.

5. Make overall healthy living a priority. Recovery from a blood clot can feel like pure “survival mode,” especially in the beginning, but don’t forget to take care of all aspects of your physical and emotional health. Try to eat healthy, drink plenty of water, move around when you can, sleep, relax, rest, and do a few things that you enjoy, even if they are small activities. If you’re getting ready to start a new eating or exercise plan, be sure to touch base with your doctor before you do.

6. Recognize there may be obstacles. It is often said that healing is not linear, or does not go in a straight line, and that’s true for healing from blood clots too. You will have days when you feel better, and then perhaps worse again. It’s important to understand that your recovery may have ups and downs, but if the hardships start to outweigh your progress, make sure you talk to your healthcare team about it.

7. Connect with your peers. It’s not uncommon for the people closest to you – your family and friends – to be equally confused and overwhelmed by your recovery. In fact, they may not understand what you are going through, and they may not understand that healing can be a lengthy process. It’s important to connect with people who do understand, and who share your experiences. You can find peer support groups online, on Facebook, and sometimes even in person. When searching for support groups, make certain that they are dependable, trustworthy, and expertly moderated.

8. Get professional help if you’re struggling emotionally. Recovery from blood clots is not just physical. It’s not uncommon for people to feel anxious, depressed, isolated, overwhelmed, angry, sad or stressed after a blood clot. Some people experience even more powerful circumstances, like grief and post-traumatic stress disorder. If you’re struggling psychologically after a blood clot, reach out to a professional counselor or psychologist.

9. Always remain hopeful. No matter how overwhelming recovery from a blood clot is, it’s important to remember that recovery is possible. Never give up, and never stop hoping that there will be better days ahead. Celebrate the small improvements and acknowledge the setbacks. In the end, you will emerge, perhaps even with new inspiration for experiencing the things that matter most to you.

Remember, there is no right or wrong way to recover, and your experience may be entirely different from the next person’s experience. It can be a long journey – and there may be some frustrating setbacks – but recovery is possible. Ultimately, most people do recover from blood clots, and they do go on to lead normal lives, even if they have to take long-term anticoagulants to help prevent future blood clots.

Recovery resources to get you started.

Find A Doctor Tool (United States)
World Thrombosis Day (International resources)
More About Blood Clot Treatment
The National Blood Clot Alliance
The American Society of Hematology
The U.S. Centers for Disease Control and Prevention
BCRN’s Online Facebook Support Group
The National Blood Clot Alliance’s Online Support Group (not on Facebook)
How to Get Mental Health Help

There is hope for healing and you are not alone,

 

 


Reader Writes In: What is the scariest part of blood clot recovery for you? What have you learned during recovery that can help other people? Share in the comments below.


Recovery can take a long time and varies for each individual. Read more about what to expect and connect with others who are also recovering.


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