Long-term blood thinners are not a life sentence.

Are you taking long-term blood thinners? It is not a life sentence.

Taking long-term blood thinners are not a life sentence, but an important part of a plan to keep me alive and healthy. Here is how a simple shift in thinking changed my entire outlook on a lifelong treatment plan.

www.BloodClotRecovery.net

I was 29 years old when a persistent and worsening pain in my calf and sharp, sudden pain in my left side lead to the diagnosis of blood clots. I thought I had overdone it running, but after rushing to the hospital late on a Sunday night, I found out my situation was much more dire. A seemingly unexplained deep vein thrombosis (DVT) in my calf and pulmonary embolism (PE) in my lung, led doctors to search for answers as to why an otherwise healthy young woman had a life-threatening blood clot. What they found was worse than the blood clots, in many ways.

While in the hospital, I was preliminary diagnosed with antiphospholipid syndrome, or APS. Later tests fully confirmed the diagnosis. APS is an acquired autoimmune disease that can cause a person’s blood to clot abnormally because the body mistakenly produces antibodies that attack phospholipids, a type of fat that plays a key role in clotting. It can lead to other problems too like miscarriages (in females, who it affects more), heart attack and stroke. There is no cure for APS, although there are people looking for one.

I was devastated by the news at first, and wondered how it would impact my life. I soon found out that primary treatment of my APS would involve taking blood thinners (for me and for right now that is warfarin) for the rest of my life. I also take aspirin to reduce my risk for stroke. While an aspirin a day sounded like no big deal to me, taking long-term blood thinners was very scary. I had a lot of questions, and I didn’t see a lot of light at the end of the tunnel. In fact, I couldn’t see an end to the tunnel at all.

For the first several months of my diagnosis, I focused on healing from DVT and PE and the intense pain I was in. I didn’t think much about APS. A lot of what I read online scared me, and provided no clear outlook for my future. It wasn’t until I had a face-to-face conversation with my hematologist that I realized taking long-term blood thinners was not, in fact, a life sentence. As I started to feel better, I started to see that taking this medication was a very important part of a plan that was intended to keep me alive and well.

If taking long-term blood thinners is not a life sentence… what is it then?

Hearing that I would have to take blood thinners long-term was upsetting to me. I remember sitting in my hematologist’s office, and crying, when I heard the news. I blurted out, “I’ll have to take warfarin forever?” What he said next stuck with me, and framed my thinking around it from that moment forward: I don’t think we should say forever, because we never know what future treatments, or cures, will arise – and they will. This field is growing so fast, there is always something new to learn. Right now, and until something else comes along, this is what you need to stay healthy.

It wasn’t until much later, after I had time to think about it, that I realized my doctor was right. Taking long-term blood thinners are not a life sentence, but an integral part of a long-term treatment plan that is designed to keep me alive and healthy. I also realized that how I framed it in my mind could very well make the difference between long-term misery and long-term empowerment.

Long-term blood thinners are important to keep us healthy and alive.

Why we sometimes need long-term blood thinners.

Doctors use a variety of factors to determine how long someone should remain on anticoagulants, also commonly known as blood thinners. These factors can include things like why you had a clot in the first place and what your future risk for clots may be. More temporary risk factors like surgery, hospitalization or pregnancy, may mean someone has a shorter treatment plan. Risk factors that last longer, like an underlying clotting condition, or thrombophilia, or family or personal history of clots, may mean longer treatment with blood thinners is necessary. There is also more recent research that indicates people who don’t have a reason for their blood clots may benefit from extended treatment, because there is a lack of an identifiable risk factor that can be eliminated. 

My APS diagnosis makes it unlikely that I will be able to discontinue blood thinners in the foreseeable future, so I take them both to prevent blood clots, and as primary treatment for my APS.

Scientific and medical advances make long-term care – and life – possible.

Blood thinners have made life, and longer life, possible for millions and millions of people. Fairly recent introductions and availability of of new medications, also known as new or direct oral anticoagulants, provide treatment options where we once had no options. People who maybe were allergic to or not responsive to warfarin previously had no options to reduce their clotting risk. Imagine not being able to treat a condition that has a treatment available due to the medication itself. Imagine not being able to follow a treatment plan because it was overwhelming or difficult for you to manage the follow-up care. Maybe you have even experienced these situations yourself. Now, options exist where there once were none – meaning even more lives are saved and extended by anticoagulants. 

New advances in science and medicine make long-term care and longer life possible.

The field of thrombosis and thrombophilia is rapidly advancing.

There are scientists and doctors who work in this field each and every day, and who are passionate about providing the best care that they can for their patients and future patients. I think, generally speaking, doctors go into their chosen field to make a difference and to help people. The field of hematology is no different. People are actively working to better prevent and treat blood clots, and to cure clotting disorders. Just in the last decade, science and medicine have made great advancements that once were thought to be impossible (i.e. more medications to treat blood clots). It only makes sense that this field will continue to grow.

If you want to learn more about these advances, and how you can be a part of emerging research, learn more about clinical trials, or connect with patient advocacy organizations like the National Blood Clot Alliance or the medical organizations like the American Society of Hematology for current news. Updates happen all the time, and I will do my best to share them with you as I see them (Facebook is the best place to see my current posts).

Take time to evaluate your situation and talk to your doctor.

Hearing that I would have to take blood thinners until further notice was not a huge shock to me, although it was upsetting. I knew what I went through was horrible, and painful, and I had an overwhelming fear of another blood clot. I also knew APS could not be cured. Since the beginning, blood thinners have been my immediate safety net and help keep my anxiety about blood clots at a manageable level. In addition to that, I have taken thyroid medication since adolescence, so adding another pill into the weekly pill box wasn’t a big deal for me. Monitoring my blood regularly, because I take warfarin, was a little different, and took some adjusting to at first. Taking new medications for a long time could be overwhelming for someone else, though, especially someone who has never had to take medication before. What was more concerning to me were the implications of what lifelong treatment could mean. I had questions like: What were the risks? Were there any side effects? Would it impact the activities I love to do?

I soon found out that answers to my questions existed, and I talked to my doctor at length about my concerns. For any blood thinner, the biggest risk is bleeding, which could be dangerous, or even life-threatening (like in a big accident). For the most part, though, bleeding is not something that I worry about day to day, unless I am doing a high-risk activity. My side effects with warfarin were minimal (hair thinning, heavy menstrual cycles) and dissipated after a few months of starting the medication. With my doctor’s encouragement, I found I could still do every activity that I love (unless I let fear stop me).

The “what ifs” were not as bad as I was anticipating. You may find the same is true for your situation, so once you have some time to digest your treatment plan, take your questions to your healthcare team and get answers. If something won’t work for you, ask about your options, which may include different medications or different ways to prevent blood clots.

Talk to your doctors about your treatment options.

I’m not a lifer on long-term blood thinners (even though I am).

Although I take blood thinners long-term, or potentially for the rest of my life, you will never hear me say I take them forever, or that I am a lifer on blood thinners. I take warfarin long-term as part of my treatment plan to prevent blood clots, a potentially life-threatening complication of APS. How I think about it – and talk about it – really makes a difference. It doesn’t sound hopeful, and it doesn’t feel good to say things like “I’m a lifer” with regard to pretty much anything. Thinking about my blood thinners as a treatment, and as a preventative measure, allowed me to switch my thinking to a more positive and nurturing state of mind. Taking my pills is like brushing my teeth, getting my eyes checked, or eating nutritious foods and taking a walk. It is how I stay healthy. To think of it that way is empowering, rather than discouraging. I am doing what I need to do to take care of myself.

It can be scary, and overwhelming, to have to take a medication for the rest of your life. Blood thinners are, without doubt, a serious medication. With any treatment or medication, there are risks, and they should be known and evaluated. The most serious risk that can occur with blood thinners is bleeding. Most bleeding is not life-threatening, however, and it can even be managed with over-the-counter products designed to control it. If you have bleeding that won’t stop, a severe trauma or injury, a head injury, a fall, a car accident, persistent and severe headaches, bloody stools or urine, or large, unexplained bruising, you should call your doctor, or seek immediate medical attention.

In most situation, the risks though, far outweigh the benefits of a treatment plan that keeps us all safe from clotting and alive. Blood thinners are good at preventing blood clots. Most people on blood thinners do not experience a recurrence, although about 30% will within 10 years. Keep in mind, most repeat blood clots are due to failure to adhere to a treatment plan, or take your medications as directed. If you take blood thinners, talk to your doctor before stopping them or skipping them.

Blood thinners aren’t perfect – they don’t reduce your risk of a clot to zero and they don’t come without some potential risks – but they are a solid and safe treatment for blood clots. With new medical and scientific advances, we have hope that one day perhaps a new medication will be discovered and implemented, or that new reasons for clots are discovered and addressed. Perhaps one day diseases like antiphospholipid syndrome, or other clotting disorders, will even be cured. Until that time, I rely on blood thinners as a long-term treatment to keep me safe from blood clots.

There is hope for healing and you are not alone,

Reader Writes In: Are you taking long-term blood thinners? How are you dealing with your diagnosis and your treatment plan? Have you been scared or overwhelmed? Share in the comments below, or in your journal.

www.BloodClotRecovery.net
More reading and resources about long-term blood thinners.

More Reading:

FAQs and Contact Me

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.