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.

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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 then 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 an 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 go 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 off 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 awhile 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 attack, 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 months were filled doctor’s appointments. I had my blood tested numerous times, and I had a couple 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 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, 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 where I am not reminded of how very real it all was. However, my thoughts have shifted to 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. You can also support the National Blood Clot Alliance (the largest patient advocacy organization in North America). If you’re called to advocate and raise awareness, you can learn more about that here.  

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 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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Long-term blood thinners are not a life sentence.

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

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

www.BloodClotRecovery.net

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

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

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

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

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

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

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

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

Why we sometimes need long-term blood thinners.

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

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

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

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

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

The field of thrombosis and thrombophilia is rapidly advancing.

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

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

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

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

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

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

Talk to your doctors about your treatment options.

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

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

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

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

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

There is hope for healing and you are not alone,

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

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

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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 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 breath 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 my 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 them. 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 for helping me live my best life with antiphospholipid syndrome.

I am grateful for 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, for commenting, for sharing, and for connecting.

Where to Go for More

I hope you also connect with the National Blood Clot Alliance, if you have not already, where I work professionally in Marketing and Communications. We have several projects that we are unveiling this March that I am very excited about. To make my passion my profession has been one of the most rewarding experiences of my life. Additionally, my job has provided me the opportunity to reach even more people with life-saving information about blood clots. For information you can share too, please visit www.stoptheclot.org.

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


The First 30 Days of Blood Clot Recovery: My Notes

My Recovery Notes are entries from a handwritten journal I kept for 30 days – from the time when I first thought something was wrong with my leg to the end of my first month out of the hospital. My notes start with the day I went for a short run, and I thought I injured my knee again. They end with the last day of my first month out of the hospital. You will notice there are no writings on days 6-15. This is the time I spent in the hospital, and my thoughts from that time are mostly non-existent. I don’t remember much of anything from the days spent in the intensive care unit, and only small things from the rest of my time in the hospital. My doctors believe the memory loss is a combination of severe trauma, repressed memories, and also being on pain medications for the duration of my time there. Maybe someday, I will try to write about that time. It’s still difficult for me to think about, but I also know the power of writing to heal.

Talking about what happened to me helped me to deal with the trauma I experienced in more ways than one. From the scattered thoughts and illegible writing on white pages to the clean, crisp design of this blog site, I took my words from paper to screen when I began writing my blog. I began writing about my experiences, with the hope that it could one day help someone else through a difficult recovery from blood clots, that was often isolating and overwhelming.

I have talked a lot about journaling, and how helpful it was for me. To this day, it remains a central part of the work I do here. I always share a journal prompt with you, at the end of each blog post, to encourage you to write down how you feel. It’s different than thinking about it, because by writing things down, you get them out of your head (literally or symbolically) and put them somewhere else. My journaling and writing has helped me to heal in more ways than one. I am able to get my worst thoughts about what happened to me out of my head, and onto a piece of paper or computer screen, so they can stop floating around.

I also hope that my writing helps other people who are struggling with the things that I once did. Helping people helps me heal too. I hope that by reading these notes you feel less alone, and understand just how life-changing and scary recovery from blood clots can be. I also hope that you read them and realize that there is hope for recovery from blood clots. There is hope for better days ahead, and a return to the things you love. Don’t give up. You are not fighting alone, and for the vast majority of people, it goes get better.

The First 30 Days of Blood Clot Recovery

Here are my personal entries from a handwritten journal I kept right after my DVT and PE.

There is hope for healing and you are not alone,


Reader Writes In: Journal your thoughts, or share in the comments below. What were the most significant challenges during your first month of blood clot recovery?


Read More: Resources for people who have been recently diagnosed with blood clots.


Menstrual Cycles and Anticoagulants: What’s Normal?

If you are a woman, one of the first questions you might have after starting blood thinners may be, “Should my menstrual cycle be this heavy while taking anticoagulants?” It was one of the first things I worried about after I was discharged from the hospital on low molecular weight heparin blood thinning injections several years ago. I worried – a lot – and wondered if it would be a major issue for me, especially since I had already struggled with uncomfortable periods for as long as I could remember. My periods were a little heavier, but nothing that made me worry, or think something was wrong. I had more frequent and slightly heavier periods for several months, but eventually my cycle returned to what was normal for me. Once I transitioned successfully to the oral anticoagulant warfarin, my periods stayed the same. A little unpredictable, but mostly manageable. They were occasionally longer or heavier, or I would occasionally have two shorter cycles in a month, but nothing was overly concerning for me or my doctors.

About five years after my blood clot, I had a period that was not normal for me. It arrived at the regular time, but it started out a lot heavier than usual. My first thought was, “Good. I’ll get it all out of the way in a day or two. I began to grow more and more concerned as the third day of my cycle arrived, and the bleeding worsened. By that time, I was going through a 10-hour pad in less than hour, and I was soaking through my clothes. It was a weekend – which is when all of my issues seem to happen, blood clots included – and I thought, “Since it’s my period, I’ll wait until Monday and call my gynecologist.”

It got worse as the weekend went on, so I called my gynecologist’s office. Most gynecologists have an on-call physician for pregnant patients who go into labor and delivery, so I was relieved to hear a messaging service answer where I could leave my number and have an on-call physician call me back. A doctor at from my gynecologist’s office called me back in about 10 minutes and asked me what was going on, so I explained my situation. The doctor was alarmed, even though I was very clear that I was taking the blood thinner warfarin. He instructed me to go immediately to the emergency room, which I did, now completely panicked about my situation.

At the hospital, I saw a number of doctors who ran and performed numerous tests to determine whether I was bleeding internally from my abdomen or from my uterus. After several hours, and a lot of uncomfortable evaluations, it was determined that I had uncontrolled uterine bleeding. In my case, it was a period that wasn’t stopping. The cause was an INR level that was way too high, which I did not know about. I needed a reversal treatment (oral vitamin K in this situation), to help bring my INR back into a safe range. I am very fortunate that I did not need a blood transfusion or need to be admitted. The ER staff told me repeatedly that it was very good I came in when I did, instead of waiting until Monday, because the bleeding may not have stopped on its own.

It took several weeks of medication adjustments, blood draws, and ultimately bridging with injections to stabilize my INR. While it was a very scary experience for me – and one that has also taken me some time to think about sharing here – it is an experience that I take very seriously. I learned a lot about my body and what not to assume. If I ever have bleeding like that again, I will not assume it is my period, because I know now that something could be seriously wrong.

If you have heavy periods on blood thinners, at least have one conversation with your doctor, before ending up in a situation that requires emergency room visits and emergency interventions to resolve.

FAQ: What You Need to Know About Periods and Blood Thinners

Below is a list of frequently asked questions about menstrual cycles and blood thinners. These are questions that I have asked myself, and that I hear a lot. What is the bottom line? If you have a heavy period on blood thinners, please talk to your doctor.

Q: Since I am on blood thinners, I can expect a heavier period, right?

A: Like so many things when dealing with blood clots and blood clot recovery, it depends on the individual situation. Not every woman has a heavy cycle on blood thinners, so if you do, you need to discuss it with your doctor to find out if it is normal or not. A possible side effect of the newer oral anticoagulants are heavier periods, so if you take those medications, talk to your doctor about your concerns and what to expect. It is important to make sure nothing else is wrong, or going on, as well as to find a solution for managing heavy periods.

Q: What kind of doctor should I discuss my heavy periods with?

A: It is probably best to involve two doctors, or specialists, in your care when discussing your menstrual cycle: The doctor who prescribes your anticoagulant (for me it is my hematologist) and your gynecologist. If you do not have a gynecologist, you can find one with this search tool: The American College of Obstetricians and Gynecologists.

Q: My doctor(s) said to expect heavier bleeding on blood thinners, so do I need to worry if I am bleeding a lot?

A: Don’t assume heavy bleeding is normal, especially since it could be dangerous and have dangerous consequences, such as blood loss or anemia. If you have heavy bleeding, you need to go to the emergency room, or hospital, to be evaluated. The U.S. Centers for Disease Control and Prevention (CDC) defines heavy bleeding as: 1) needing to change your pad or tampon after less than two hours, or 2) you pass clots the size of a quarter or larger. Read more about heavy periods, also known as menorrhagia, from the CDC: Heavy Menstrual Bleeding.

Q: During that time of the month, can I just skip taking my blood thinners?

A: No, not without speaking to your doctor. Heavy periods are usually not a reason to stop taking your blood thinner. Stopping your medication – even for a day or two – could be dangerous and result in a repeat clotting event. Not taking medication as prescribed is the most common cause of blood clot recurrence. Please do not ever stop your blood thinner without consulting with your doctor first. While some women may be given instructions to reduce or stop their blood thinner during the heaviest days of their menstrual cycles, this direction must only be given my the advice of a medical professional.

Q: Birth control helped with my periods, and now I can’t take it because of blood clots. What options do I have?

A: Birth control with estrogen is a risk factor for blood clots, and many women are advised to stop taking birth control with estrogen after a blood clot. However, many women have options without estrogen for birth control that may also help with heavy periods, especially if they are continuing to take an anticoagulant. More information about these options can be found here: Birth Control and Blood Clots. Other options to help manage a heavy period may include: pads or tampons, menstrual underwear or menstrual cups. We’re all different, and what works for one woman may not be an option for the next woman. Some women may, along with their physician, consider various surgical procedures to help address significant menstrual bleeding, such as a endometrial ablation or hysterectomy.

It can be difficult to manage a heavy menstrual cycle on anticoagulants, and for many women, it can be uncomfortable to talk about, but it is really important. Not only can an unusually heavy cycle be dangerous to your health, it can be damaging for your self-esteem. It can even effect work and social commitments. If you are experiencing a heavy period while taking anticoagulants, talk to your doctor about your concerns, and your options.

There is hope for healing and you are not alone,


Reader Writes In: Journal your thoughts, or share in the comments below. Have you experienced heavier periods since starting anticoagulants?


Read More: Women’s Issues and Blood Clots