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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March 1, 2020

Blood Clot Awareness Month Matters

Blood Clot Awareness Month Matters

It seems like every single thing has an awareness day, week, or month. Whether it is food, a hobby, a profession, or a health condition like blood clots – there’s a time for it. It’s great to bring widespread, concentrated attention to a cause or event that is important to you. After all, it’s how some people might find out about it when they didn’t know about it before. It’s sometimes not so good because it can feel like the Internet is congested with traffic and why do we have to hear about “one more thing” for a day, week, or month. Whether you get on board with awareness days or not, there is still something to be said for why awareness about blood clots matters.

Blood Clot Awareness Month Matters

Below, I share more of my story in detail, but more than that, I also want to share why Blood Clot Awareness Month matters to me, and why I keep talking about Blood Clot Awareness Month years after I have healed from my blood clots. Blood Clot Awareness Month matters to me for two distinct reasons. First, a little bit of knowledge about risk and signs and symptoms can often help to prevent a life-threatening situation. Second, if you have experienced a blood clot that has threatened or changed your life, there is hope for healing, and there is hope that you can recover and live your life again. You’re not alone, either, even though it may feel like it.

Know Your Risk for Blood Clots

Blood Clot Awareness Month Matters: Know Your Risk

I was 29 years old when I had a blood clot in my calf (also called deep vein thrombosis or DVT), which broke off and traveled through my bloodstream to become a life-threatening blood clot in my lung (also called pulmonary embolism or PE). At the time, I was running half marathons, and I was working to achieve all the things you do to lead a healthy life: Exercising, eating right, and losing weight. I didn’t know that blood clots can happen to anyone, or that I could be at risk because I was doing everything right by taking care of myself.

After thorough investigating and testing by my medical team, it was determined that my blood clots did not have to do with things that generally go hand-in-hand with an unhealthy lifestyle (being overweight or sedentary, as an example), but that I had a somewhat rare acquired (not inherited) autoimmune clotting disease called antiphospholipid syndrome (also called APS). Blood clots are a common thing that can happen in people with APS, along with pregnancy complications in women, heart attacks, and strokes. Along with blood clots, I also had low platelets as a result of APS, which can cause too much bleeding, making my situation complex and serious. I’m fortunate to have a hematologist who is skilled in managing difficult cases like mine.

Why Knowing Your Risk for Blood Clots Matters: Even if you do not think you could be at risk for blood clots, know that you could be. Below is a list of the most common risk factors. Look over them, discuss them with your doctor, and keep them in mind.

Know the Signs and Symptoms of Blood Clots

Blood Clot Awareness Month Matters: Know the Signs

While I may not have known my risk in particular for blood clots, so there was nothing I could do to prevent them with regard to that, I also did not know that anyone could be at risk, so it never occurred to me to know the symptoms of blood clots. The signs were there, I just didn’t know it.

I felt lingering, and then excruciating pain in my left leg, primarily when I put weight on it. Within a matter of a day or two, I also felt sharp, stabbing pain in my left ribcage and found it hard to breathe, particularly when I tried to sleep. I could not talk in full sentences. I thought both of my pains were related to running and fitness. I thought the pain in my leg was the return of a knee stabilization issue resulting in a pulled muscle, and I thought the pain in my side was due to running too fast while dehydrated.

As someone who was physically active, both made perfect sense to me at the time. I never thought to question the pain in my leg. If I had, perhaps I could have avoided a life-threatening situation when the blood clot traveled to my lung. I had about a day and a half between the two events, but since the pain in my leg steadily and noticeably worsened during that day and a half, looking back, I should have gone to an urgent care. Looking back, the signs were clear that this was not a normal running injury or pulled muscle.

Why Knowing the Signs and Symptoms of Blood Clots Matters: Even if you don’t have an identifiable risk factor for blood clots, or might have a story like mine, knowing the signs and symptoms of blood clots could still save your life. People can experience all, none or some of the symptoms. Knowing them saves lives. Below are the most common signs.

Know What Blood Clot Recovery Can Be Like

Blood Clot Awareness Month Matters: Learn About Recovery

I spent ten days in the hospital, where my life hung in the balance for several days, due to extensive clotting and bleeding concerns related to APS. After doctors stabilized my situation, I was sent home – with a wheelchair and an oxygen tank – where I would soon discover that I was only at the very beginning of what would be a long and painful journey (I’ve never been in so much pain before or since). It took me two years to physically recover from the blood clots, and a little bit more time to deal with the emotional trauma of facing the end of my life so young, and so unexpectedly. I will forever have to manage my disease and my clotting risk with medications and follow-up appointments.   

My experience changed the course of my life. It was only three months after my hospital discharge that I decided to start Blood Clot Recovery Network and share my story with the world. I wasn’t sure how that would go – you can’t go back after you share such personal details about your health online in today’s world – but I’m glad I took the risk. I want people to know there is hope for healing from blood clots, and if you’re going through a difficult recovery, you are not alone.

Why It Matters: Talking about the physical and emotional obstacles of recovery from blood clots is why I created this space, and why I continue with my work here to this day. If you are faced with an unimaginable situation after experiencing a blood clot, you are not alone. There is hope for healing.

If you think you might be at risk for blood clots, or if you don’t know, discuss it with a trusted doctor next time you see him or her. If you experience any signs or symptoms of blood clots or think that you might be, don’t wait to seek medical attention. Call your doctor, and if you can’t get in touch with your doctor, go to the hospital or emergency room right away.

If you have a blood clot, find a doctor who can support you in what you are going through both physically and emotionally by either providing that care first-hand, or referring you to other resources. I entered my hematologist’s office for my first follow-up appointment the week of my hospital discharge, and the first thing we talked about was what my recovery would look like and how long it would be. Tell your doctor how you are feeling, from the start. If you’re not supported or don’t feel supported, consider finding another doctor who can help you. I know that’s hard when you don’t feel well, but it is so important.

More About Blood Clot Awareness Month

Learn More: Blood Clot Awareness Month Matters

Connect with my on social media channels where I’ll be having candid conversations about blood clot recovery and sharing encouraging reminders all month long. My most active profiles are my Facebook Page and Instagram. You can also find me on Twitter from time to time.

Join my Private Facebook Group for ongoing support where you will find me and a number of your peers. We’re approaching 6,000 members there, and I’m very excited to have created such a meaningful place for us to gather. I would love to reach that milestone this March, so if you’re not there yet, what are you waiting for?

Spend some time connecting online too. Use one or more of the following hashtags in your online conversations: #hopeforhealing #notalone #AwarenessMatters #bcam

Why It Blood Clot Awareness Month Matters: Now, several years after my experience, I am no longer the only person publicly speaking or writing about what I have been through or sharing about how difficult recovery from blood clots can be. We are a community, and we have much to share and learn from one another.

Whether you decide to celebrate this month for Blood Clot Awareness or not, I hope you take a few moments to learn about your risk and learn about the signs and symptoms of blood clots. If you’re in the midst of recovery or farther along in your journey, I hope you remember this: There is hope for healing from blood clots, and you are not alone.

Reader Writes In: How do you plan to participate in Blood Clot Awareness Month this year? I can’t wait to hear about it!

Share your story in the comments below.

Filed Under: Educate, Empower, Encourage, Enrich 1 Comment
August 21, 2019

Cruising After Clots

I recently went on a trip to Alaska via cruise ship. Not only was it the first cruise I have ever been on, it happened after blood clots in my leg and lung several years ago. For people with clots, or people who are taking anticoagulants – also known as blood thinners – there are often special considerations to to consider when planning a vacation. These include things like travel arrangements, medication management, food (for some blood thinners), and access to emergency medical care. If you’re considering cruising after clots, here is everything you need to know to have a safe and wonderful trip.

Home Away From Home

It takes a lot of physical and emotional energy for me to plan a big vacation, and I spent several weeks getting ready to go. I researched a lot about cruising, talked to friends and family who have gone on trips, and called the cruise line with a myriad of questions on multiple occasions (that’s okay, they are prepared to answer your questions). I noticed that a lot of information about cruising with disabilities does exist, and while I don’t consider myself disabled, I do have special medical considerations that other people may not have. Despite this information being readily available, I still wasn’t sure what to expect, or how it would go, so I am sharing my experiences specifically to help people who have had a blood clot, or who take anticoagulants, plan and enjoy a cruise – because you can.

Misty Fjords

For me, cruising was an unusual kind of vacation, and one that I was not sure I would enjoy. I was nervous – definitely – because I felt like I would be far removed from medical care or supplies, if needed. In addition to that, Alaska feels really far away – and it is. It is also not easy get to from where I live in the Midwest (it was a full day of travel on the way there, and over a day of travel on the way back). Other thoughts plagued me too: What if there were no vegetables on board or what if they didn’t have vegetarian options for lunch? What if I got seasick? What if I just got sick?

Glacier Bay

Still, I couldn’t resist the call of such a wild, inviting, beautiful place. I have always longed to visit Alaska, so when the opportunity arose, I committed to going. The cruise I was on went from Vancouver (Canada) to Anchorage along Alaska’s Inside Passage, which is a popular coastal route for ships and boats along a network of waterways which weave through the islands on the Pacific Northwest coast of North America. It is home to Glacier Bay and an abundance of wildlife, marine life, waterfalls, and native plants. If you’re worried about being “at sea” for too long without access to shore – medical care, emergency care, pharmacies, or just solid ground – consider booking a cruise that is shorter and has daily (or near daily) ports. I felt infinitely better with this itinerary for my first cruise, rather than spending multiple days at sea.

Traveling after blood clots can take some planning, and perhaps even some slight modifications, but you can do it. If you want to go cruising after clots, here are my tips to help you prepare.

Cruising After Clots: What You Need to Know

  • Talk with your doctor. First, make sure it is recommended for you to travel, and travel via cruise ship. If you know it is okay with your doctor that you travel, and you are still nervous, make an appointment prior to your trip to discuss your concerns and what you can do about them.
  • If you take warfarin, make sure your INR is in range. I usually get my INR checked a few days before I leave, in case adjustments have to be made.
  • Refill your prescriptions and get a print-out of your medications from your pharmacist. There is nothing more troubling than being on vacation and having to find a pharmacy to refill medications you already take daily. While you are refilling your scripts, ask your pharmacist to print out a list of your current medications to take with you.
  • Know where you are going. If you are worried about needing access to medical care or a pharmacy while you are gone, do a little bit of research to find out what ports/cities will have these facilities available to you.
  • Prepare your Passport and travel documents. If you’re traveling through countries, have your Passport updated and ready to go. If you prefer, print flight tickets the night before. Also, print out your flight and ship itineraries, along with important phone numbers, and take them with you in your carry-on in case you need to make last minute changes.
  • Consider insurance and trip protection. If you would be in a serious accident and need to be evacuated from the ship or a rural area, it will be very expensive. Consider an affordable medical evaluation plan like MedJet Assist. Also, if you have the option to purchase trip protection in the event that you need to cancel your cruise due to injury or illness, it might be a wise investment.
  • Pack your medications (anticoagulants and others) to take with you on your person for the trip. Do not put your medications in your checked luggage – either at the airport or while using the ship’s luggage service. I found myself separated from my luggage on several occasions throughout the trip, but I carried all of my medication – for the whole trip – in my carry-on bag, which I kept with me at all times. The only time I did not take my medication with me in my carry-on bag was when we left the ship for daily excursions, then I left my medication in my room.
  • Dress for your destination and dress in layers. Be comfortable and take clothes that you would normally wear. For example, consider packing jeans/shorts, tops/shirts, a dress (or nice slacks and top/dress shirt) for formal nights (if you are participating – you do not have to); sweaters or sweatshirts, jacket, rain jacket/poncho/umbrella, scarf or wrap, swimsuit, sunscreen, toiletries, comfortable shoes for walking, shoes for relaxing (slippers, sandals), socks, special wear for any excursions you will be taking (hiking boots, insect spray, etc.).  
  • Bring or buy a reusable water bottle. I buy a liter of water once I am through airport security (save the bottle). You can drink the water from the ship, so I refilled my water bottle that I bought at the airport each time I left the ship. Be prepared to spend between $2-$4 per bottle on board if you want to buy bottled water to carry with you. 
  • Bring a backpack or hands-free bag with you. It can double as your carry-on and daily excursion/tour pack.
  • Portable cell phone charger. I like being able to call or use my cell phone at any time and never want to be caught in an emergency situation with a dead cell phone. You can order my favorite portable charger, and other favorite travel accessories, here.
  • Over-the-counter bleeding products. Bandages and sponges to control or stop bleeding are a part of my travel gear, no matter where I go. While they are not a substitute for professional medical care, they can help with minor injuries, or in controlling bleeding until you are able to access professional medical care.  You can view and purchase the products that I use and recommend here.
  • Take time (zones) into consideration. Depending on where you are going, you may need to adjust the time of day/night you take your medication. Ask your doctor about this ahead of time, and make a schedule to do so, if needed. I chose to take my medications at the same time I do at home, so I set an alarm to remind me due to the time difference in Alaska (it is four hours behind my home time zone).
  • Pack the prescription bottles. I took my prescriptions in the original bottles and took my pill case with me too. Once I was onboard, I filled my pill box as I normally do.
  • Be mindful how changes may impact your medication. I take warfarin, so a lot of things can interfere with my medication (food, alcohol, other medications, hydration, etc.). If you take warfarin too, be mindful of what can raise or lower your INR and avoid those changes, or talk to your doctor about how to best manage them. There is more information below about food and alcohol on cruise ships.
  • If you take warfarin, don’t panic about the food. I was worried about how my diet may be impacted on a cruise, since I take warfarin. I had access (daily) to the foods I normally eat (vegetables and vegetarian options included) through the cafeteria dining option. I also had a lot of extra options too. My encouragement to you is to eat as you normally would, and also try a few new things if you are so inclined. I tried escargot (it was salty) and Baked Alaska for desert (not a fan).
  • Know your limits with alcohol. It can be really easy to eat – and drink – a lot on cruise ships. I do not drink a lot of alcohol, so I did not purchase a package for alcoholic beverages. I did enjoy an Irish Coffee on the deck in Glacier Bay, which I knew I could handle without difficulty. Alcohol can interfere with blood thinners, so know your tolerance.
  • Consistency is key. With warfarin, and some other medications, it is important to be as consistent as possible in your food and drink choices. I didn’t find it difficult to be consistent on the cruise due to the wide variety of food that was available to me.
  • Take your own hand sanitizer. Ask anyone who knows me personally, and they will tell you it is not a secret that I don’t like germs. I was pleased t learn that the ship’s crew does not like germs either. Hand washing and sanitizer stations were readily available. I also brought my own – just in case.
  • Visit the on board infirmary/hospital upon your arrival. It is a good idea to know where it is in relation to your room, just in case you need it. You can also check the ship’s website ahead of time to see what kind of services they offer there (most are staffed with a physician to do basic medical care or to address emergencies until you can get to shore). Doing that gave me a lot of comfort and peace of mind.
  • Be prepared for sea sickness. I knew I was sensitive to motion, but I did not know if the ship would bother me. It did, and I was sick numerous times throughout. I wore SeaBands, which are non-medicine bands to help with motion sickness. They did help. You can view and purchase the ones I used here. If you aren’t sure what will work for you, talk to your doctor ahead of time about your options (bands, patches, medication). If you don’t know if you get seasick, be prepared and take something with you, just in case.
  • Know what to do in the event of an emergency. The cruise line/ship will help you with this on your first day. I was surprised to learn that cruise ships take safety very seriously and prepares you for any type of disaster that may occur by requiring you to attend a safety session (called muster) where you learn about life vests and boats, sanitation, the hospital/infirmary, evacuation, fire, etc. If you’re worried about being “at sea,” you can take a cruise that hugs the coast (like I did) or that has minimal days at sea without visiting a port.
  • Do what you are comfortable with – and have fun. I did participate in several shore excursions in Alaska, within my comfort zone (whale watching, boat tour of the Fjords, and a wildlife hike). Shore trips and excursions range from very easy to very extreme. Do what you are most comfortable with, and if you choose to participate in extreme activities, follow all safety precautions that are given to you.
  • If you take warfarin, make sure your INR is in range. I usually get my INR checked a day or two after I return home from a vacation.
  • Plan a day or two of rest. Traveling after the cruise was long and stressful – more so than other vacations I have been on – and I was very tired when I returned home. I think this is because the flight or drive is traveling, then the cruise is traveling, so it can feel like a lot of going and no stopping to decompress. I had to get back into the routine of what I do, eat, drink, etc. I was also very seasick when I arrived home (more so than when I was on the ship). If you can, build a day or more of rest into the end of your vacation (either at your final port or at home) to get yourself back on track and rest.

I don’t want anyone to be afraid to travel after blood clots. If I can share any resources to help you get out and do the things you have dreamed about, that is what I am going to do. With that in mind, here are my gifts to you:

Free Gift #1: Cruising After Clots Checklist

Free Gift #2: My Top Tips for Cruising Alaska

There is hope for healing and you are not alone,

Reader Writes In: Have you been on a cruise? Have you been cruising after clots? Where did you go? What are your top travel tips for cruising?

Share in the comments below.

FAQs and Contact Me

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June 2, 2019

Seven Years Later

Blood clots changed my life. Now, seven years later, I am sharing where my journey has brought me.

www.BloodClotRecovery.net

Seven years ago, a blood clot in my leg (deep vein thrombosis or DVT) that broke apart and traveled through my bloodstream to my lung (pulmonary embolism or PE) nearly ended my life. I remember this day seven years ago pretty vividly. It was a Saturday, and I got up early to meet my training group and run a few miles. I had just returned to training after running a marathon in Florida after taking some time off to let what I thought was a knee injury heal. I was dismayed to feel the familiar pain in my calf, only this time it radiated down to my ankle too. I said goodbye to my friends, went home, and took a nap.

I woke up several hours later with a really bad cramp in my left side. It hurt to take a deep breath, and I pretty much said I was done with running. I blamed the cramp on dehydration and took a hot shower. That made me feel better, but I was still tired and didn’t feel motivated to do anything or go anywhere. I laid on the couch most of the day, barely cooked dinner when my husband got home from work, and went to bed early. It crossed my mind that it was worrisome that it hurt worse to lay flat than to slightly recline.  

Sunday morning, I woke up feeling worse, only my leg hurt to put any weight on it. It felt like I couldn’t catch my breath, so I resolved to take it easy and rest before going out to dinner for my sister’s birthday later that night. By the time evening rolled around, though, I called to cancel, stating I didn’t feel well. My husband and I tried to find open urgent care, with no luck. My family called my primary care physician out of concern – I never bailed on outings like birthdays – and he called me on my cell to ask what was going on. I explained that I pulled a muscle in my side, and I could barely breathe or talk. I told him that wasn’t my concern though, my concern was that I couldn’t walk on my leg. The next 30 seconds of silence were the longest I have heard in my life. My doctor said, “You need to go to the nearest ER and if you’re not going to go, you need to tell me where you are so I can call an ambulance.” Alarmed, I asked why.

He told me he believed I had a blood clot from my leg going to my lung, and I was in immediate danger of losing my life. Bewildered, I told him I would go. He said, “which hospital?” and I named a small one three minutes from where I lived. “No,” he said, “I need you to go to one with a trauma center. This is serious, and I’m calling ahead.” Now completely alarmed, I hobbled down the stairs and told my husband to drive me to the ER because I was dying.

I don’t remember much of the next week of my life. I was admitted ahead of a very long line at the hospital and within a few hours, I was diagnosed with a DVT in my left calf and a PE in my left lung. None of it meant anything to me, and I was in too much pain to ask or care. My husband was told the next few hours were uncertain, and my family came to see me – one by one – in a strange ICU room where my bed was wheeled next to a crash cart for safety. I had one nurse whose job it was to watch me for the next 24 hours. I wasn’t allowed to move or use the bathroom. I blacked in and out of consciousness for the next several days as either pain or pain medications fought for control of my body and mind.

I work up a few days later in a different ICU room with my husband sitting next to me holding a doctor’s card that said “Oncologist” on it. I asked if I had cancer, and my husband said they had no idea what was wrong with me, but they were coming to talk to us soon. I fought to stay awake, only to hear that I had a disease I couldn’t pronounce. I fell asleep that day with a peanut butter and jelly sandwich in my mouth. It was the last thing I would eat for a while aside from shakes to keep me sustained.

I was diagnosed with antiphospholipid syndrome, or APS, which is an autoimmune disease that, in simple terms, causes the body to clot when it shouldn’t. There is no cure for APS, and it can cause some pretty serious problems like blood clots, miscarriages in women, heart attacks, and stroke. Doctors do not know why I have it, or what caused the disease to cause blood clots when it did. To this day, I don’t have any more answers than I did then.

Seven years later

I was discharged from the hospital about a week later in a wheelchair and with an oxygen tank. I was ecstatic to go home, but little did I know, my road to recovery would be long and winding. The next few weeks and months were filled with doctor’s appointments. I had my blood tested numerous times, and I had a couple of follow-up scans to see if or how my clots were healing. I struggled physically with more pain than I have ever felt in my life. It hurt to do simple things like walk, talk, breathe, and move. I needed help showering and getting to the restroom. The pain was unimaginable.

Emotionally, I faced more challenges in the coming months – and years – that I did not know I would face. My self-esteem was destroyed. I eventually lost the job I had then, and my personal relationships were tested and strained. Living in constant pain was miserable, and I lost all hope that things would ever get better. There were times I wanted to end my life because the pain was so bad. My dad encouraged me to keep a journal and write down what I was going through, so I could look back and tell other people what happened to me. I started writing bits and pieces of memories and days that made no sense to me or anyone else. From those journals, I started this blog, because I knew didn’t want other people to suffer like I was, even though I was suffering still. I wanted to know that I wasn’t alone, and I wanted other people to know they weren’t alone. Writing this blog helped me hang on in my darkest moments when I often had nowhere else to turn.

Now, seven years later, I am physically healed from my blood clots, but not from APS. I take warfarin every day and have my blood monitored regularly to make sure it is working as it should, and I see my hematologist every three months or so. I am ever vigilant for signs of a clot, even though I have faith in my medication that works to prevent clots. I live pain-free most days, although sitting or standing for too long can cause my leg to ache from time to time. I am also vigilant for signs of stroke and heart attack. Today, I consider myself physically healed from blood clots. Aside from medication and medication management, my life is pretty much the same as it was before.

Seven years later, I am emotionally healed from my blood clots, but that took a lot longer to do. It is just within the last couple of years that I can tell my story without crying, I can hear another story without crying, and I can separate what happened to me from what is happening, or will happen, to other people. My thoughts and emotions are once again safe with me, not recklessly rocketing through my mind. Now I just work to manage general anxiety about my health and stress and try to obtain a good balance between life and work (that doesn’t always go so well). I’ve conquered some major obstacles, including a long-haul flight and vacation to Europe and several extended road trips, which are now some of the greatest memories that I have.

Seven years later, my life is nothing like what it was then. Sometimes, what happened to me feels like a very distant memory, yet with the work I do, not a day goes by when I am not reminded of how very real it all was. However, my thoughts have shifted from “what I went through” to “what can I do.” I know that I have an important role in this community, and I know that a lot of people rely on my work here as a symbol of hope when they have no other. That is not something to take lightly or to take for granted.  

seven years later: empathize with any difficult situation

Seven years later, I am still blogging here at Blood Clot Recovery Network. Healing from my experience, I believe, has led me to be a better blogger. Being able to acknowledge my emotions, but not let them control me, has allowed me to lend a greater empathy to you, the people who are suffering like I once was. I see you. I see that you are suffering, and I want you to know that there is hope for better days ahead. The pain, for most people, gets better. And, if it doesn’t, you can usually find ways to manage it or address it. It doesn’t make it hurt any less right now, though, if you’re stuck there in that dark, painful place.

It is true that most people do recover from blood clots and go on to live normal lives again. It just might not feel like it from where you are right now, and you might not believe it. That is okay. Healing is hard work, and it can be a long road. If you’re struggling physically, talk to your doctor about how to manage your pain, and if you’re not getting better, talk to your doctor about a plan to help you. If you’re struggling emotionally, reach out for help. You should not suffer alone or in silence. There are people to help you, both in the medical profession and in the community. Ask for help, make a call, make an appointment, or reach out to someone that you trust.

Seven years later, I thank you and this community for everything you have done to support me, to support one another, and to help raise awareness about blood clots and clotting disorders. If you have a blood clot or clotting disorder, know someone who does, or even if you lost someone to these conditions… you are so loved. My healing has come full circle, and I am here to help others through the same journey, which I try to do each and every day. My professional work at the National Blood Clot Alliance has given me an even bigger platform to give back, but this blog retains a pretty special place in my heart, particularly for those of you that are suffering and struggling.

seven years later: give your support and love generously.

If you’re feeling better like me and are called to lend your support to others who are still healing, you can do so in several ways: Join my private Facebook Group and talk about it or connect with me on social to share my blogs.

seven years later: there is hope for healing, and you are not alone.

My mantra hasn’t changed seven years later: There is hope for healing from blood clots, and you are not alone. It rings true to this day, even for me. Thank you for supporting me on this journey. Whether you are here for the hundredth time or the first time, thank you for taking the time to read what I have to say. Thank you for talking about your blood clot recovery with me, and with this community. It matters, you matter, and blood clot awareness matters.

There is hope for healing and you are not alone,

Reader Writes In: Where are you in your recovery journey? Has the BCRN community helped you along the way? Share in your journal, or in the comments below.

www.BloodClotRecovery.net

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May 30, 2019

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 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.

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

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March 1, 2019

Blood Clot Awareness Month 2019: Awareness Matters

March is Blood Clot Awareness Month. Find out what it is, why it matters, and how you can help make a difference.

Why Blood Clots?

It will soon be seven years since I had a blood clot in my left leg (deep vein thrombosis or DVT) that traveled to my lung (pulmonary embolism or PE), causing damage to my heart and creating a life-threatening situation. I did not know that I was at risk, both because I had an underlying autoimmune clotting disease called antiphospholipid syndrome, and because I was taking birth control pills with estrogen.

I was only 29 years old then, and for me, life had just begun. I was recently married, healthy, and contemplating a future of kids and a home with my husband. I was running one day when a horrible pain started in my left calf. It felt like a pulled muscle and progressed to feeling like my knee was in a vice. Less than two days later, I had pain in my left side, near the bottom of my ribcage that eventually felt like someone was stabbing me and all the air was deflated from my lung. Being unable to breathe or speak in full sentences is why I went to the hospital, at the urging of my primary care physician, who I called on a weekend for help.

I spent ten days in the hospital, where my life hung in the balance for several days. After doctors stabilized my situation, I was sent home – with a wheelchair and an oxygen tank – where I would soon discover that I was only at the very beginning of what would be a long and grueling journey. It took me two years to recover from the blood clots that ravaged my body, and a little bit more time to deal with the emotional trauma of facing the end of my life so young, and so unexpectedly. I will forever have to manage my disease and clotting risk with medications and follow-up appointments.   

While I am not exactly sure why my blood clots happened when they did, to the severity that they did, I do know that my experience changed the course of my life. It was only three months after my hospital discharge that I decided to start Blood Clot Recovery Network and share my story with the world.  

Blood Clot Awareness Matters

Blood clots kill more people each year than AIDS, breast cancer, and motor vehicle accidents combined, yet so many people don’t think blood clots can happen to them, or surprisingly, they don’t know they are dangerous. Blood clots can happen to anyone, at any time. I was 29 years old and an active runner when my blood clots happened to me. I never expected it, and because of that, I almost died.

If you think blood clots can’t happen to you or someone you care about – they can. Take time this month to learn – and share – more about blood clots. Nearly all of us have access to someone else. Whether it be your friends, your family, your colleagues, your social media channels, or your community – share, share, share. It seems simple, but it truly matters.   

Knowledge Saves Lives

Sometimes I think about how different my situation would have been had I known two things: That I was at risk for blood clots and what the signs and symptoms of DVT were. If I had known, perhaps I could have addressed my risk with my doctors earlier, or when I had symptoms of a blood clot in my leg (DVT), I could have got help before it turned into a life-threatening situation by traveling to my lung (PE). I didn’t know either, and I almost didn’t survive. While I can’t say for certain what might have happened then, I wish I would have known.

Knowing information about blood clots does help to save lives, and I have heard countless stories from people who have read my blog and avoided a life-threatening situation because they got help at the first sign of a problem:

Blood Clot Recovery: Snapshots of You

Information about blood clots is easier to find now than it was when I first started writing my blog here, but there is still information lacking about blood clot recovery. Although, recovery information is much more readily available than it once was, and there are great organizations and people working to share information, where once there was none.

Talking about my experience has been one of the things that helped me to heal. Writing about my experience has helped me process what happened to me. I believe strongly in the power of sharing our experiences, and this March, I want to focus on how sharing our stories – whether publicly or in private – helps with healing and recovery. No one wants to feel alone in this world or feel alone when going through a difficult experience. If you’re struggling physically, you’re not alone. If you’re struggling emotionally, you’re not alone. This month, I want to share insights – or snapshots – of my recovery from blood clots with you and give you the opportunity to share with me and with one another.

Make Your Connections Count

I will be sharing new content on social media for the month of March, as well as many of my most popular posts. I will be talking about blood clot risks, signs and symptoms, and all about recovery, including anxiety, depression, lifestyle issues, treatment, and more. There will also be weekly opportunities for you to share your thoughts and experiences with your own recovery from blood clots.

My two most popular platforms are Facebook and Instagram, so if you’re not connected with me there, I look forward to seeing you. You can connect with me on Twitter too. My private Facebook Group is growing each day, and it is a great place to chat with people in real-time about blood clots and blood clot recovery. I am there every day, so I would love to chat with you too.

Hope for Healing from Blood Clots

My message is this: If you are recovering from blood clots you are not alone, and while it is life-changing and even unbearable at times, it does get better. There is hope for healing from blood clots.

www.BloodClotRecovery.net

A Note of Gratitude

I would be remiss if I didn’t stop to talk about what I am grateful for since my blood clots six years ago. While I don’t often refer to myself as a survivor, I did come out alive on the other side of something that kills 100,000 people a year. I am grateful for my life, and I am grateful for the chance to help make a difference. By sharing my story – and my recovery – I hope that I can honor the lives that were lost and hopefully save lives in the future by sharing important information.  

I am grateful for my family, who supports me day after day, even when my work takes priority over theirs. They are my husband, Michael; my dad, Bill; my sister, Mollie; my in-laws; and my dogs, Grace, and Sadie. Thank you for believing in me, and the work I do, every single day.

I am grateful for my medical team because without them I wouldn’t be here today. They are my hematologist, my primary care physician, and the nurses and lab staff, and my hematologist’s office. Thank you for caring about me and helping me live my best life with antiphospholipid syndrome.

I am grateful to the BCRN community. You all make it possible for me to carry on my work here, day after day. You inspire me, and you keep me motivated to talk about my experiences, with the hope that my sharing will continue to help you. Thank you for reading, commenting, sharing, and for connecting.

Where to Go for More

Connect with me on social media: Facebook and Instagram are my most engaged platforms. You can also join the private Facebook Group to chat with me and other people who have experienced blood clots.

Get Your BCAM Bracelets

Shop for Blood Clot Awareness Bracelets through my Amazon Shop: Shop BCRN.

There is hope for healing and you are not alone,

Reader Writes In: What plans do you have for Blood Clot Awareness Month? Share in your journal or in the comments below – I would love to hear about them!

Read More: Blood Clot Advocacy and Awareness

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