Sick After A Blood Clot? Here’s What You Need to Know.

Woman who looks like she is shivering with a cold or flu.

If you get sick with a cold or flu after a blood clot, it can feel more miserable than normal, and it can also feel like you don’t have options for symptomatic relief from coughing, fever, a runny nose, sore throat, or headache. Many medications – both over-the-counter and prescription – can interfere with blood thinners, especially warfarin, so many people may avoid taking them all together. However, if you are sick with an illness, it is often necessary to treat it, or to treat uncomfortable symptoms. Finding relief – and feeling better – are important. If you get sick after a blood clot, there are things you can do to feel better as soon as possible and get back to being healthy.

If You’re Sick After A Blood Clot, Talk to Your Doctor First

Being sick after a blood clot can be awful. Last year, I had the (respiratory) flu for the first time in my life, and it was the worst I have felt since my pulmonary embolism. At one point, I actually thought I may never recover, and that is how I knew something was going on beyond a normal cold. I had a fever, chills, body aches, coughing, a runny nose, sore throat, and a headache that scared me. My symptoms came on suddenly one afternoon, starting with a headache and a sore throat, while I was sitting at my desk. It felt like I was fine one minute and the next, I could barely make it to bed. Everything hurt.

After feeling this way for two days, I made an appointment to see my primary care physician. My husband drove me to the appointment, because I couldn’t do much of anything beyond make it to the car one step at a time. It was all too reminiscent of how I felt when I had my PE. My doctor confirmed I had the flu virus, and gave me some suggestions for managing my symptoms, which he said should subside in a few days to a week. We decided not to treat it with medication, since I was already halfway through it. He also told me if I wasn’t feeling any better in a week, or if my symptoms got worse, I needed to come back to see him. Being a respiratory virus, it is important to monitor the flu for further complications that may require hospitalization to treat, like bronchitis and pneumonia.

If you’re sick after a blood clot, don’t wait to talk to your doctor. Many illnesses can be treated – and their duration and severity shortened – with prompt medical care. I see my doctor if I have something that makes me ill for more than a few days. I also see him pretty quickly if I have anything respiratory going on. Talk to your doctor about when to see him or her in your situation.

Tips to Help You Feel Better When You’re Sick After A Blood Clot

Teapot and a steaming cup of tea.

In addition to working with your doctor, there are some things you can do at home to feel better when you are sick.

  1. Eat whole, healthy foods that feel good and nourish your body. That’s why, for most people, a steaming cup of soup broth tastes better when you are sick than when you are well (or when it is really cold outside – hello Midwest life). Remember, if you’re taking warfarin, don’t drastically change your diet. I make sure I am eating protein, yogurt, vegetables, broths, berries, and fruits (which are all part of my normal diet too).
  2. Stay well hydrated – with water. The last thing you want on top of an illness is more problems from dehydration. I also like hot tea with honey. and an electrolyte drink if I’m drinking larger than normal amounts of water, or for a little flavor. I try to avoid excessive sugar and caffeine. I steer clear of alcohol when I don’t feel well.
  3. Talk to your pharmacist (or doctor) about over-the-counter symptomatic relief. Chances are, there is a product you can take, even on blood thinners (even on warfarin). Your pharmacist will help you. They are a great, and often underutilized, resource. Mine gave me over-the-counter options for a clearing my sinuses that I didn’t even know I had. It worked, and my INR didn’t change.
  4. Breathe steamy water, use warm wash cloths or ice packs on your face, or saline rinses or sprays to relieve congestion and discomfort. I like to take a hot shower when I don’t feel well and breathe in all the heat and humidity.
  5. Look up over-the-counter drug interactions online, in addition to talking to your doctor or pharmacist. The information is out there and easy to access. You can use a resource like www.drugs.com. You should also read the product labels on any medications you are taking, and ask your pharmacist if you have any questions about the information. They are specific instructions about contraindications and potential interactions listed on all over-the-counter drugs.

You Know What They Say About Prevention

Soapy hands being washed.

“An ounce of prevention is worth a pound of cure” holds true during cold and flu season too. Take preventative measures to keep yourself from getting sick in the first place, if at all possible: Wash or sanitize your hands, wipe down the shopping cart, avoid touching your face/nose/mouth, avoid places and people where you might be exposed to illnesses or germs, and wear a mask if you think you might be exposed to illness or germs, like at a doctor’s office, hospital, or on a plane. Be sure to also ask your doctor if a flu shot would benefit you.

You can cut down on seasonal allergies and sinus issues by taking your shoes off when you enter the house, showering if you have been outside and exposed to pollens or grass, and by cleaning your home’s air vents/ducts and heating and cooling systems on a regular basis. Also, don’t wear your clothes that you wore outside and in public in your bed or to sleep in.

Be Smart About Changes

If you notice any changes in your health, or if you’re not getting better in a reasonable length of time, make an appointment with your doctor. If anything changes in my respiratory status (cough, congestion, breathing), or I’m not better in a few days, I make an appointment to see my primary care doctor immediately. If you can’t get a hold of your doctor, or if you have symptoms that concern you, go to an urgent care or the hospital. An urgent care is a great place to go to get immediate medical help for common illnesses and viruses that don’t require a hospital visit. If you have signs or symptoms of a blood clot in your lung, seek emergency medical care by calling 9-1-1 or going to the closest hospital.

Some illnesses require prescribed medications to treat and in some situations, it may still be necessary to take a medication, even if there are potential interactions with your blood thinner. It doesn’t mean those interactions will occur, but it does mean you need to be aware of the potential for them to occur.

Work with your doctor to identify any issues that are cause for concern, and know what symptoms to watch out for. If you’re taking warfarin, for example, you may need to have your INR monitored more frequently while you are taking a cold or flu medication or an antibiotic – and your dosage temporarily adjusted – to ensure your INR remains in range. Taking an anticoagulant should not be a reason for not taking care of your health, and your doctor can help you work through those challenges to stay, or get, healthy again.

There is hope for healing and you are not alone,

Reader Writes In: Have you been sick with a cold or flu after a blood clot? If so, how did you handle it? Please remember: We can’t make medications or treatment recommendations here, but we can share personal stories.

Share your story in the comments below.

Computer keyboard and a cup of coffee.

FAQs and Contact Me

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.

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.

Read more about Medical IDs for blood clots from American 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?”