May 19, 2023

Taking A Break for Better Mental Health 

Blood Clot Awareness Month, recognized each March, came and went like the whirlwind it always is. It is as a critical time to share information about blood clot risks, signs and symptoms, and prevention. For me, it’s also an important time to acknowledge and share what recovery from blood clots can be like, including mental health challenges. 

I have been sharing my story, and my resources, with the clotting community for over ten years. While I don’t feel any less drive or commitment to shining a light on blood clot recovery, I am in a different place now than I was at the beginning of my journey. I consider myself physically recovered from what I went through, but I still manage a disease, antiphospholipid syndrome, that won’t just go away. I still take anticoagulants (blood thinners), which require regular monitoring, and I still see my hematologist every few months. Thankfully, I have not experienced any further clotting incidents. Physically, I feel fine most days, but taking long-term medications that require constant mindfulness and monitoring can be emotionally draining. 

When March ended this year, I took a step back to focus on my own health, which included following up on routine check-ups and appointments. A suspected growth in my uterus that needed further investigation sent me down a dark path emotionally. Previous trauma was exposed again, and it was raw and relentless. I experienced a bleeding incident and emergency surgery in 2020 during the height of the pandemic connected to a ruptured ovarian cyst, which was frightening since I take blood thinners. While I had hoped my gynecological issues were behind me, my mind constructed the worst possible outcome as I waited for my follow-up exam and test results. I spent the month of April on a hiatus and mostly worried.

Thankfully, I received great news at my gynecology appointment and no further steps need to be taken. Everything was fine. I was elated, but I realized that even though my physical health was okay, my mental health was spiraling. The past few years of pandemic living felt like treading water in a constant cycle of anxiety, depression, grief, and fear. “What’s next, and will I survive it?” was an ever-present question in my mind all day and night. I said out loud to someone one day, “My nervous system hasn’t really recovered from any of this,” and I realized how true that actually was.

I decided I needed to take a break for better mental health. I know there are things we all have to do and that we can’t set on the back burner. Maybe it’s work or school, caring for our families or pets, or obligations and commitments that can’t be broken. But what about the things we can take a break from? Sometimes doing just that can make a difference and set us back on the path to better mental health. So for me, this meant stepping away from being present online all the time, saying no to the things that weren’t a necessity, and finding time to reconnect with things that bring me joy.

You may be feeling similarly. Blood clots and blood clot recovery can be emotionally challenging. It is not uncommon to experience anxiety, depression, or post-traumatic stress disorder after a traumatic medical experience. Yet, your emotional and mental health is no less important than your physical health. Consider how taking a break can help you feel better. 

Five Tips for Taking A Mental Health Break

  • Disconnect to reconnect. Unplug and unwind. However you choose to frame it, disconnecting from screens (social media, blogging, gaming, and even TV/streaming) can be a big part of taking a mental health break. I limited my time spent scrolling online. Instead, I read books, went for walks, and planted a flower garden in my yard. Now, after work, I go outside to work in my garden rather than leave my computer screen at the office and immediately start looking at my phone screen on the couch.
  • It’s okay to say no. If it doesn’t feel good to you or you don’t want to do it, you can say no with no reason required. Feel confident to say no to people, plans, places, or activities if it means you can instead focus on feeling better or taking care of yourself.
  • Don’t force yourself to do what doesn’t feel good. This was a “tough love” lesson for me. If it doesn’t make me feel good or feel at peace, I’m not doing it anymore. This involved setting some boundaries for myself (online) and with others for things I have to do, but may not be entirely comfortable for me to do.
  • Do what makes you happy. When you’re focusing on mental health, it may or may not be a great time to try something new. You can either start a new hobby or interest or pick up something you may have lost sight of or enthusiasm for in the past. It can be as simple or as involved as you need or want it to be, and the possibilities are as endless as your creativity and skills.
  • Ask for help if you need it. While taking a break for better mental health can involve spending a little more time alone for some people, that doesn’t mean you shouldn’t ask for help if you need it. You can join my group on Facebook for peer support. If you’re facing a mental health crisis, considering suicide or just need a listening ear, you can call or text 988 and reach the Suicide & Crisis Lifeline for free and confidential support. 

If you aren’t feeling your best, you are not alone. Creating a path to better mental health is all about what you need or want it to be. Taking a break can be an important part of your plans if you aren’t feeling well emotionally and can help you heal. Consider the tips I have shared here and how you can integrate them into your own life, or add your own. In either case, I hope taking a break can help you feel better on your journey. 

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

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September 7, 2022

Effectiveness of Telehealth for Clotting Disorders

Online healthcare has come a long way since its early days and is now a complex integrated service used across the globe. Under the Covid-19 pandemic, telehealth has grown exponentially and gone from 11% of Americans using it in 2019, to 46% in 2020. But how effective is telehealth for clotting disorders?

Recent developments have thus revealed the ability of telehealth to better manage the health of patients with particular conditions or disorders. One of these new developments is captured in a case study published in the NEJM, which analyzed the employment of telehealth by astronauts. Using telemedicine, doctors onboard the ISS and two radiologists on Earth were able to coordinate an ultrasound to confirm a blood clot on a NASA astronaut.

This allowed the astronaut to receive immediate treatment, request the right medicine, and avoid life-threatening complications. The successful results thus became a key indicator of the limitless potential of telehealth in the healthcare industry — particularly in the field of clotting disorders. Telehealth could be essential in helping patients who live miles away from a doctor’s office, hospital, or treatment center to receive consistent treatment.

In this article, we take a closer look at the integration of telehealth in the care of people with clotting disorders.

Telehealth and its benefits

Telehealth has been developed over decades and is an integral part of the healthcare system today. This includes EHRs and EMRs, clinical documentation, and even e-prescribing. However, telehealth isn’t one-size-fits-all, and a look at telehealth solutions by Wheel highlights the importance of choosing the correct software to provide the most well-rounded care.

When managing clotting disorders, specific telehealth software such as interactive patient care systems (IPC) or patient engagement software allows clinicians the information they need at their fingertips, and patients the power to take a more active role in their own healthcare.

Empowering patients is especially important when dealing with chronic health disorders. A wearable telehealth device developed by the UAB was recently featured due to its ability to track hemodialysis access clotting in real-time. The wearable sensor unit sends data to a microcontroller, and if there is no blood flow, the controller signals an alarm that alerts the need for treatment. This allows patients and their families to manage the disease more independently, using a smartphone or a smart tablet to monitor clotting events and fine the appropriate anti-clotting treatments.

Preventing the development of these clots is crucial when managing blood clot risks, as when left alone clots can have serious health consequences and even be life-threatening. This is where telehealth further comes in. As we’ve previously stressed in Make Prevention A Priority, telehealth’s convenience makes professional monitoring and identifying risk factors more accessible. This allows patients to make lifestyle adjustments and continuously update their treatment plans under the instruction of a medical professional.

Challenges and limitations with telehealth for clotting disorders

Despite overwhelming evidence of the benefits of telehealth’s role in improving the care of clotting disorders, it isn’t without challenges.

Research featured by the ISHBT noted the clear advantage the remote setup brings concerning telehealth for patients who feared contracting Covid-19 during the lockdown. However, they also pointed out challenges in the lack of physical examination, which may affect the accuracy of diagnoses.

Additionally, the concern of drug availability was also indicated to be a significant limitation. Patients who had consulted via telehealth were still unable to procure their needed medication, requiring families to see their providers in person anyway. This was a challenge that the team aboard the ISS faced, as medications were restricted by what was available onboard. Enoxaparin was part of the available medication stock, but they had to wait for a shipment of Apixaban to properly treat the astronaut.

This goes to show that, even with telehealth consultations, patients with severe clotting complications such as pulmonary embolism or deep vein thrombosis will still require constant physical consultations so that complications are managed effectively.

Effective treatment

Ultimately, telehealth has become essential in caring for clotting disorders due to its capacity to make up for the shortcomings associated with physical consultations. Its innate ability to circumvent logistical concerns, and thus, allow for a more comprehensive overview of one’s condition, means it provides much faster treatment and more effective recovery methods for patients.

As it stands, however, telehealth is far from being a standalone treatment method. We should continue to look into the potential of telehealth, and we can certainly expect further breakthroughs in the field that will continue to benefit people from all walks of life.

This post was written by Alexandra Coles.

Reader Writes In: Have you utilized telehealth for your care of blood clots or clotting disorders? Has it been helpful for you?

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July 20, 2022

Summer Foods and Warfarin

summer foods that can impact the anticoagulant warfarin

Vitamin K is an essential nutrient for human beings. It helps create various proteins that are needed for blood clotting and the building of bones. Our blood needs vitamin K to help clot wounds. We can’t and shouldn’t eliminate all clotting, but excessive clotting or clotting in unwanted places, such as blood clots in the deep veins of the arms or legs (deep vein thrombosis or DVT) or life-threatening blood clots in the lungs (pulmonary embolism or PE), are a serious problem. Vitamin K is also (surprisingly) in some summer foods and can impact the anticoagulant warfarin.

Vitamin K and Warfarin

If you take the blood thinner warfarin, you probably have a fairly good understanding of how diet and nutrition, particularly vitamin K, can impact your medication. A sudden change in the amount of vitamin K you eat can cause dangerous bleeding (if you consume less) or blood clots (if you consume more).

People who take warfarin have regular blood monitoring to ensure they are taking the right amount of warfarin. A prothrombin time (PT) test measures how long it takes for a clot to form in a blood sample. An INR (international normalized ratio) is a type of calculation based on PT test results. A PT/INR test helps find out if your blood is clotting normally. It also checks to see if Coumadin/warfarin is working the way it should. An INR value that is too low may mean a person is at increased risk for blood clots and an INR value that is too low may mean a person is at increased risk for clotting. Vitamin K can interfere with how warfarin works and cause the INR value to fluctuate. 

The major foods to be aware of are green leafy vegetables like spinach, broccoli, and kale. It can be frustrating to try to eat a healthy and balanced diet if you take warfarin because some of the most nutritious foods also contain high amounts of vitamin K. It’s critical that people who take warfarin find a balance by aiming to consume consistent amounts of vitamin K and avoid sudden and drastic changes to their diets.

Even if you don’t like or choose to avoid vegetables with typically high vitamin K content, what common summer foods contain higher amounts of vitamin K that could potentially impact your dosage of warfarin? The answer surprised me.

Summer Foods and Warfarin

Vitamin K is a staple in my diet, even though I take warfarin, so I eat it as part of my daily diet (usually spinach or peppers). With summer in full swing – and as a new home gardener – I decided to change up my diet to add in more fresh fruits and vegetables. For breakfast, I had a spinach, avocado, and blueberry smoothie, and for lunch was a cucumber salad. I had freshly sautéed carrots with dinner and a handful of fresh cherries for dessert. It was Saturday night, so I also indulged in one glass of delightfully sweet Peach Moscato on the patio where I settled in to search the Internet for a few new recipes. It was a fantastic feeling to be so summery all around.

That was short-lived though. Much to my surprise, I discovered that cucumbers – along with blueberries, avocado, carrots, and cherries – have a higher vitamin K content. I already knew that alcohol can impact anticoagulants, but an occasional glass does typically not interfere with my medication. However, almost everything else I ate that day also had a higher vitamin K content. 

I felt myself sliding into a panic about it, and I immediately deduced that I should never try anything new ever again – or stay off the Internet completely. There was nothing I could do to change what I already. After taking a few deep breaths, I began to calm down and developed an actionable plan to address my situation.

I have a standing (always on file) order for my INR at the hospital near my house, so I went first thing Monday morning to have it checked. It was within my normal range, perhaps because I already consume vitamin K daily. I felt a lot better knowing for sure that my warfarin dose did not need to be adjusted to accommodate my dietary choices. Tuesday I had a regular appointment with my hematologist so we discussed the next time I should get my INR checked.

Summer Foods That Are (Maybe Surprisingly) High in Vitamin K

  • Blueberries 
  • Cherries 
  • Cucumber 
  • Cabbage
  • Green Snap Beans
  • Kiwi
  • Pickles
  • Avocados 
  • Blackberries 
  • Pomegranate 
  • Carrots 
  • Red Bell Peppers
  • Grapes

Vitamin K content listed by food.

Enjoying Summertime Foods

If you want to change your diet to include summer foods and take warfarin, or if you make changes unexpectedly as I did, be aware of your body and check in with your medical providers if you have any concerns. Be prepared to check your INR perhaps more frequently than usual or for the possibility that your warfarin dose might need to change temporally to get you back on track. If you experience any unusual bleeding while taking an anticoagulant, contact your doctor or go to the hospital right away.

You can still eat a healthy diet and enjoy summer while being aware of the foods (and drinks) that can impact your health. 

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

Reader Writes In: What foods would you add to the list? How do you manage warfarin and summertime eating?

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March 17, 2022

Make Prevention A Priority

You’ve heard it said before: “An ounce of prevention is worth a pound of cure.” Or, if you haven’t, it means it is often easier to stop a problem before it happens rather than to stop it later. Health and wellness are no exceptions, but what about when something like a global pandemic throws the world off its axis and routine healthcare is no longer a priority?

Two years ago we would have said that’s highly unlike, yet that’s exactly what happened for hundreds of thousands of people. According to the U.S. Centers for Disease Control and Prevention, an estimated 41% of U.S. adults reported having delayed or avoided medical care during the pandemic because of concerns about COVID-19, including 12% who reported having avoided urgent or emergency care. 

As the pandemic took hold, routine — and even emergency — healthcare fell by the wayside. As a result, so did prevention. Some problems and illnesses that may have been prevented in the early stages, became a bigger problem as time went on. 

I had a stomachache in October of 2020 that I ignored for several days. I didn’t particularly want to go to the doctor during the pandemic, especially for a stomachache. In reality, though, I was in pain from severe internal bleeding, and I needed emergency surgery to stop it. Although I am fully healed from that experience now, it remains difficult to think about “what if” I would have delayed seeking care for any longer than I did.

Medical care was also not something I avoided entirely during the pandemic. While regular office visits with my hematologist carried on uninterrupted virtually, I still visited the hospital lab in-person every couple of weeks to have my INR monitored because I take warfarin. I also kept my annual wellness visits with my gynecologist in person because their office made me feel really safe.

Yet, for all the routine things I did do, there was also something I chose not to do. Aside from ignoring what I thought was a stomachache, I determined that things like the eye doctor, the dentist, primary care, and an annual dermatology visit could wait a year (or two) before I went into the doctor’s office again. After all, I still saw my hematologist regularly and all of my doctors were informed about my surgery. 

Now, we’re living in a world that may never return completely to normal, so it’s time to re-connect with my healthcare team and make those annual wellness visits I skipped previously a priority. 

Surprisingly, it hasn’t been that hard to get back on track. As someone who struggles with health anxiety, it’s been empowering to feel like I am in control of my health again. It feels good to know that there aren’t any current problems lurking that I could have known – and done something about – sooner. 

Make prevention a priority for your health.

How can you get back on track with your health and wellness? Make prevention a priority and reconnect with your healthcare team about your health. This might induce things like routine eye and dental exams, physical check-ups, mammograms, colonoscopies, gynecological exams, or going to the doctor to find out why something is bothering you, causing you pain, or doesn’t seem quite right. It also includes talking about your risk for blood clots and how you can take steps to reduce your risk.

Tips to get your healthcare on track. 

  1. If you don’t know where to start, start somewhere. You can make an appointment with your primary care physician or doctor who handles most of your routine care. Discuss any concerns you have, how you have been feeling, and make sure your prescriptions are up to date. It’s a good time to have regular tests done (cholesterol, blood sugar, blood pressure, etc.). It’s also a good opportunity to get any referrals to specialists that you might need or to discuss any specialized care that you’ve been considering. 
  2. Make blood clot prevention a priority. Discuss your risk for blood clots, and ways to reduce your risk. If you’ve experience a blood clot, it’s a good idea to periodically evaluate your treatment plan with your healthcare provider.
  3. Update your records. Make sure all of your doctors and pharmacy have your updated insurance information (if applicable) and also find out what benefits you have to use. Many wellness and preventive services are fully covered by insurance. If you need help affording your prescriptions, talk to your doctor about your options and visit my resources for some helpful links.
  4. Don’t forget about your mental and emotional health. The pandemic has been a difficult and stressful situation to navigate. If you need to, schedule a follow-up or seek out an appointment with a mental health provider. Visit my resources about emotional recovery.
  5. If you’re not happy or comfortable with any or all of your providers, now is a good time to start fresh. Don’t be afraid to seek out new or different care that better suits your needs. Here’s a tool to help aid you in your search for a doctor.

Have a conversation about blood clot prevention.

Whether you’ve experienced a blood clot or not, it’s important to include blood clots in your wellness (and prevention) discussions. Know your risk factors and make a plan, along with your doctor, to help prevent blood clots. This includes evaluating your current treatment and follow-up if you have already experienced a blood clot.

If you are a woman who is taking or considering taking hormonal birth control, it’s especially important to discuss your risk for blood clots because birth control methods with estrogen can increase your risk for blood clots. Estrogen-based birth control was a blood clot risk factor for me, and I never even knew about it.

The Rowan Foundation is focused on educating women about their blood clot risks and their options. It is a great resource for information and tools that you can take with you to your appointment. Download this Risk Assessment Tool or save it to your phone to discuss at your next doctor’s visit.

Know the signs and symptoms of blood clots too, and if you have any, be sure to contact your doctor or seek medical care right away. Signs of a blood clot in the leg or arm: pain, swelling, redness or other discoloration, and/or skin that feels warm to the touch. Signs of a blood clot in your lung: chest pain, shortness of breath, coughing or coughing up blood, and/or a fast or irregular heartbeat. 

Share your story to help raise blood clot awareness and make a difference.

If you’ve been impacted by blood clots, it’s also a good time to share your story. Our stories are often the catalyst for change. By sharing your experience with blood clots, you might make the difference for someone else who doesn’t know or is delaying seeking medical care. 

You can also connect with the Rowan Foundation to share your story, and while you’re there, take a moment to read about Alexandra Rowan. She lost her life to a blood clot in her lung caused by hormonal birth control. Her spirit continues to inspire the work that I do and her story is forever imprinted on my heart. 

While not every loss may be prevented, I do hope that by sharing our stories – and by sharing information about blood clots – we can make a difference. A cornerstone of this effort is work the Rowan Foundation is doing to increase awareness and ultimately reduce the number of lives lost to preventable blood clots.

As you move forward with your healthcare and wellness plan, make blood clot prevention a priority and if you need help or aren’t sure about something, seek care sooner rather than later to address any concerns that you may have. 

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

Reader Writes In: How are you prioritizing your healthcare this year?

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December 31, 2020

Blood Loss on Blood Thinners

If there was ever a time to not visit the hospital, during the COVID-19 pandemic felt like it, yet, that is exactly where I found myself in late October 2020. I woke up with a stomachache on Monday morning, and by Tuesday night, I was in the emergency room. A trauma surgeon explained the process of exploratory surgery to find the cause of internal bleeding, which led to severe blood loss and over half the volume of blood that was supposed to be circulating in my veins in my abdomen.

Title: Blood Loss on Blood Thinners

Fear of being exposed to COVID-19, at least outwardly, was not why I didn’t go to the emergency room, though. While it may have been somewhere in the back of my mind, I just didn’t think anything was wrong other than I ate too much cheese which interfered with my normal digestive process. I had, in fact, been in touch with two of my doctors over the course of those two days, and I was treating what I deemed to be constipation at home. I wasn’t aware that I was experiencing other concerning symptoms, or that I had called my doctor urgently for help on Tuesday night, until my husband came in from working outside and saw me doubled over on the couch. My lips were white, my eyes were fluttering, I was dizzy, and I couldn’t answer any of his questions. When he looked at my phone, I had multiple messages from my doctors telling me to call 9-1-1, so my husband called 9-1-1.

When emergency services arrived at my house, they said all of my vitals appeared to be normal, other than an elevated heart rate. They asked me if I suffered from anxiety. I told them I did, but that something wasn’t right. I told them my stomach hurt and I couldn’t eat or drink anything. They asked me to get up, and when I did, I fell over, unable to stand on my own. They brought their equipment inside, put me on the stretcher, loaded me in the squad, and then transported me to the closest hospital. My fears of COVID were overshadowed by the feeling that something was horribly and terribly wrong.

In the emergency room, things began happening very quickly. The hospital I ended up at was not part of the system I normally received all of my care from, so they had none of my medical history on file, and I frantically shared clotting history and that I was taking the blood thinner warfarin. I knew something major was happening, and I knew if I communicated nothing else, it had to be this. An IV was started and blood was drawn. I also received a catheter, something I never had before, and was sent for two CT scans and an ultrasound of my abdomen. I briefly wondered where my husband was, but assumed he couldn’t see me due to COVID-19 restrictions. I later found out he had trouble locating me at the hospital because they had my maiden name down.

It was soon determined I was likely suffering from a gynecological issue, and it felt like hours went by while they tried to determine the source of my pain. My husband and I both asked someone to check-in with my hematologist and were met with resistance due to the hospital I was at being in a different network than he was. I became increasingly concerned, and increasingly hysterical, as the pain escalated. I asked to be transferred to the hospital where my hematologist saw patients. What felt like hours went by with no answers, and waiting is the worst feeling.

I was never more relieved than when a trauma surgeon entered the room and told us the news, “Your pain is from blood loss. Over half of your body’s blood is in your abdomen area and we don’t know why or what’s causing the bleeding, because there is too much blood there to see anything on the imaging scans. We can’t move you because, frankly, you don’t have time to get there. We have to do surgery right now and an operating room is being prepared for that.” His eyes were kind and caring as he said, “We still have time to act, but we need to act right now.”

I stared at him in disbelief and then asked two things, “What is my INR and when is someone going to talk to my hematologist?” My INR was only slightly elevated, and the surgeon – unaware that I had a hematologist – called him right away, even though it was the middle of the night. I heard them work out a plan to control bleeding during surgery, and possible clotting afterwards. I heard my hematologist tell me I was in a good place and needed to stay where I was.

Nothing happened as fast as what happened next, not even when I was faced with a life-threatening blood clot in my lung. My very tiny make-shift-pandemic-proofed emergency room filled with nurses while they tried to find acceptable veins to administer fresh frozen plasma to reverse warfarin, the blood thinner in my system, and then a blood transfusion to reverse the blood loss. A regular transfusion wasn’t enough, so they gave me several rapid ones in a row. The transfusions of blood hurt incredibly due to the speed, although I am told that is an unusual reaction.

The surgeon explained that he would make small incisions in my stomach for a camera to explore for the source of the bleeding, but if he couldn’t find anything, he would have to make a large incision to see for himself. He explained time was not on my side, but the surgery should only be a couple of hours, and I was whisked away down the hall. I never had surgery before, and if I ever needed it, under dire circumstances was not how I envisioned it. As I wheeled down the hall, lights flashing by above my head, the only thing I could do was let go and let someone else be in control – it couldn’t be me anyway. I trusted my hematologist and decidedly my newfound surgeon. I focused on that trust as I fell asleep within seconds in the operating room.

I woke up some time later – although I had no idea nearly a day had gone by – in a room by myself with a tube down my throat, restrained to the bed and unable to speak or move. I panicked and thrashed about as much as possible, hoping someone would hear me. Nurses ran in and one said, “You’re okay, but you had a complication and you need to rest until you can breathe on your own so we’re going to help you do that.” Breathe on my own? No one told me about this. If this is how surgeries went, I never wanted to be a part of another one. I would wake up two more times in a state of distress before I had the ventilation tube taken out of my throat and was able to breathe for myself. Once that happened, all of the details were shared with me about my ordeal.

It was not entirely normal. The surgery went fine, and the surgeon was able to find the cause of my bleeding with laparoscopic surgery alone and no large incisions: A ruptured cyst on one of my ovaries caused a bleed that didn’t stop. When I was coming out of anesthesia, however, I had a complication. I stopped breathing and required CPR and a ventilator to stay alive. That part was unexpected, but an experienced anesthesiologist recognized the problem within seconds and acted accordingly to save me. Between my surgeon, the anesthesiologist, and the hematologist who has cared for me for a number of years, I feel grateful to have received extraordinary care.

I spent several days in the hospital, and was advised that once home, it could take months to recover fully from the surgery and blood loss. When I was in the hospital, I felt like I would never get better, and once I was home, it felt like it would take forever. What I have found, though, is that this recovery has gone much smoother than my recovery from blood clots. My incisions are nearly healed, and I feel better each day.

I have had numerous follow-up appointments, and it was determined that a rupturing ovarian cyst is something that happens in a small percentage of women, and when it does, most women feel pain, but not many would bleed to the point that I did. It is believed that the bleeding caused my coagulation factors to become depleted, which in turn caused my INR to steadily rise, which caused the bleeding into my abdomen to continue. My blood couldn’t clot the wound. I, as a result, began experiencing signs of blood loss and shock, but I wasn’t aware of them.

My message after facing life-threatening blood loss and emergency surgery isn’t different from my message after facing a life-threatening blood clot in my lung: Listen to your body and don’t delay seeking help. I do, however, have a greater understanding of what I need to listen to my body for. Pain has been an indicator that something is wrong. Pain that is new or different, pain that doesn’t go away, or pain that gets worse means that I need to seek help – and quickly. Waiting to see how I feel, or if I feel better, is not an option. And all anxiety and doubts in myself aside, If I have a suspicion that something is seriously wrong, it probably is.

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

Reader Writes In: Have you experienced bleeding while taking a blood thinner? What was your experience like?

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June 12, 2020

STOP Your Anxiety

A lot of people ask me, “Do you ever worry about another clot?” Sometimes, but not daily, and only if I have a reason to worry. So then they ask, “How do you not worry?” It’s not that I don’t worry – I do – but what I don’t do is let the worry consume me, or stop me from living my normal life. Read on to discover the tools I use to help stop your anxiety, especially about blood clot recurrence.

On my list of things to worry about, a recurrent blood clot is not near the top of the list, surprisingly. While I do struggle with health-related anxiety, it stems from the next unexpected thing that might take me off guard. My blood clots came out of nowhere – nearly ending my life – and I worry more about something else like that happening. Still, there are some times when I worry that I have a blood clot again, and I wonder what that means for me if that were the case: Is my blood thinner suddenly not working? Or, is the disease that caused my blood clots – antiphospholipid syndrome – causing another problem? In this way, I don’t worry about another clot, but I do worry about what one might mean. I won’t know until (or if) it happens, and I can’t control that any more than I already am by taking my medication, going to follow-up doctor appointments, and managing my INR with a healthy lifestyle and regular checks. What I can control is what I do if I think I might have another blood clot.

Occasionally, if my left leg hurts my immediate thought is “blood clot.” This doesn’t happen every time I notice something different with my leg, but once in awhile if I have a pain that feels like a pulled muscle, because that is what my blood clot felt like at first.

Not too long ago, I felt this type of pain in the care on my way to run an errand. All the way to the UPS store and back I thought, “This is it, what if I don’t make it through this one?” Then, I remembered what I learned in counseling: Anxiety is a never-ending race track, I’m the race car, and I need to put on the brakes – before I crash. I pushed the brake pedal and put it in park – figuratively and literally as I returned home and pulled into my garage.

I have a very specific checklist that I go through if I’m worried about a blood clot. It helps me stay calm and act accordingly. In this example, I didn’t think it was a blood clot, and below is the checklist I go through to put my worry in park. I also included my answers to myself.

  • Is this pain the the same exact blood clot spot? No, it’s not.
  • Does it feel like a blood clot with regard to pain? No, not even close, it just feels like a cramp.
  • Have you done anything different with your treatment that’s worked for you this far? No, I took my warfarin last night and at last check, my INR was in range.
  • Could anything else have caused this pain? Yes, I did not get up from my desk enough times to move around today.
  • Does anything help it to feel better? Yes, stretching and moving around helps.
  • Did stretching and moving help your blood clot? No, not even a little. It made it worse.
  • Could it also be a blood clot? It could, but so far, it’s not feeling like it. If it does, you know what to do, or where to go.

There are also some very clear things that would lead me to seek medical attention without further questioning:

  • Pain in my leg and in my lung that doesn’t go away with rest
  • Pain in my leg that interferes with my inability to walk
  • Difficulty breathing or being unable to talk in full sentences
  • Being unable to lay down flat

This is not to say that coming to this conclusion is easy or that it happens overnight. I have to work really hard to think about these very clear questions and answers, rather than panic first. Sometimes it even takes a visual to remind me to get off the track, like a STOP sign or parked race car.

Your questions and answers might be different, and as always, if you can’t decide if you have a blood clot or not – or if you suspect that you do – seek medical attention right away.

Blood clots can happen to anyone, even people who are younger, active and healthy. Learning the signs and symptoms can help you avoid a potentially life-ending situation. You can read about them, and about what I felt, here. It’s also a good idea to see if you have any known risk factors for blood clots. You can read more about those here. And, just about anyone can take steps to help prevent blood clots before they become a problem. Here are some of my thoughts about that.

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

Reader Writes In: Do you worry about a repeat blood clot? How do you handle your worry? Have you experienced a repeat blood clot?

Share your story in the comments below.

 

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