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.


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 education organizations like the North American Thrombosis Forum or 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.

More reading and resources about long-term blood thinners.

More Reading:

FAQs and Contact Me


  1. Susan Bisson says

    Thank you for this Sara. Really needed it and has encouraged me immensely. Having so many complex health issues and now on wafarin ‘as part of my long term safety plan’ I am doing my best to not let my fear stop me by hoping to take my first plane trip overseas in a couple of months.

    • Samantha blades says

      Thank you I’m in the same boat I was healthy didn’t have any health problems and then had massive clot in my aorta then they said I was lupus anticoagulant positive. Thank you for making me feel like I’m not alone and someone even younger then me (37 when I had the clot) is feeling how I felt. We are in this together

  2. Maggie Moffat says

    Yes thank you Sara! This was very helpful to hear your story. I was diagnosed with a dvt in my leg for no apparent cause , “ unprovoked “ dvt blood clot they call it, and now my chance of it happening again is about 10 percent/ year. It was recommended I take eliquis long term ( currently on it for 6 months) and I was having a hard time swallowing being on this medication long term. It’s very comforting to hear your outlook on a similar situation.

  3. Hi Sara, thank you for your positive outlook on the effects of blood thinner or anticoagulant in our body. I have undergone the angioplasty surgery and put in stents in my artery or heart vessels. By that reason, I am also required to take blood thinner for life. I really hate my doctor when I came to know that I must take Plavix and Aspirin forever. I was not informed about it before the surgery was done. If I only knew, I would not allow him to put in stents in my artery coz I never had heart attack and I don’t even have high blood pressure or hypertension. I only had shortness of breathing and slight pain in my chest. That’s why I never expect this will happen to me. I’m still in denial until now. But anyway, have you tried to take the natural alternative medicines or even imagine about it? I wanna escape the synthetic medicines and go for natural medicines. I hope we can find someday. Thank you and more power to you

  4. I’ve had two small strokes within 2 months and i have to take plavix…..i appreciate your post sarah as i need to empower myself to live my life and be careful as well…i recently hit my leg on a table and blood gushed out. It took awhile to stop the bleeding. I’m on the mend thankfully.

  5. I found this article very interesting, thanks for sharing

  6. Thank you for this Sara. That way of thinking and frame of mind is excellent! I have had a stroke at 40 years old and then recently in the past year I have had a DVT with multiple pulmonary embolism’s. Hearing to be on it forever is a tough thing to digest but I like your way of thinking of it it’s part of my long-term preventative plan! The glass is half full I’m just glad there’s a glass there! Thank you be well

  7. Hello. I have been on warfarin since February 1991 when I had my diseased aortic valve replaced with a prosthetic one. I was 33 at the time. I was told that I would be on warfarin for the rest of my life. I have never let it impact any of my activities or endeavors. I, too, still hope that some day I will be off warfarin. I am not a fan of being poked with a needle on a monthly basis but take my monthly or every 6 week trek to the local hospital. I have had big spills on my bicycles and have had some very high INR’s through the years but I have weathered the storm. My mother was on warfarin for 16 years due to Afib and was constantly monitoring her diet and what she was eating. I am of the other ilk and for the most part do not worry about what I eat. Some drugs that I have been on over the years seem to effect my INR’s so I tweak my dose. The nurse calls me soon after my monthly blood tests and based on the results we tweak it together. She often takes my advice. When it’s low it’s usually due to me missing a dose soon before the test or like I mentioned due to the introduction of a recent medication. I bruise easily and when if it is a bone bruise, I am sore for a longer time than before. My skin is more sensitive to sunburn, so I try not to stay in the sun as much as I once did. I’ve played basketball, soccer, bike ride, and just about every sport that I’ve desired to play. The only sport that I would probably steer away from would be skiing and maybe football. But then again, I hadn’t skied since I was 21 or played football since even earlier. I guess I take my warfarin and don’t let it control my life as others might tend to do. I don’t recommend this method for anyone but for myself it seems to have worked so far. 🙂

  8. Emma Christianson says

    My brother and I have been on Warfarin most of our lives due to 3 clotting disorders. He started clotting at age 17 and I in my 20s . Venous clots with pulmonary embolism etc. We are now 60 and 61 years and wishing we had bought shares in DuPont medicines. LOL. While it hasn’t been easy, I have 38 years in intensive care nursing and brother has 42 years in steel. I wasn’t able to have a family due to risk, he has 2 adult kids. Both our sister and his 2 kids didn’t get the clotting problems. We carry
    on as best we can.

Speak Your Mind