Focus on Blood Clot Awareness Month

March is Blood Clot Awareness Month, or BCAM, and if you or someone you care about has been affected by blood clots, you might be wondering what you can do to make a difference. Often times raising awareness starts with simply sharing your story with the people that you already know. You can share your story verbally with friends and family, in a written note, or more publicly on your Facebook Page or Instagram account. Social media – and our online connections – make it easier than ever to share important information with people in our communities, and with people all over the world.

If you don’t know where to start with sharing information about blood clots, or if you’ve never shared your story before, I’ve outlined four specific things you can focus on to easily help make a difference during Blood Clot Awareness Month, or anytime you want to raise awareness: Blood clot risk, blood clot signs and symptoms, blood clot recovery, and blood clot prevention.

Blood clot recovery is not often a focus of blood clot awareness, but it’s still a very important thing to discuss. This month, I’ll be sharing some of my thoughts about my personal recovery from a handwritten journal I kept for the first month of my recovery. I’ve never shared these thoughts before, but now I want to share them with you.

I’ll also be sharing some of your personal thoughts about how having a support system like Blood Clot Recovery Network has made a difference during your recovery. If you’re not already, connect with me on my public Facebook, Instagram and Twitter channels to hear my thoughts. Plus, if you’re a member of my private Facebook Community, I’ll be sharing some special things there, that I won’t be sharing anywhere else. If you’re not a member yet, join for free today.     

Are you ready? Let’s get focused on Blood Clot Awareness Month.   

Focus on Blood Clot Risk Factors

Blood clots can happen to anyone, no matter who you are. They affect about 900,000 people a year, and about 100,000 people a year die due to blood clots, in the United States alone. In some cases, people may have been able to prevent blood clots by knowing puts them at risk for one.

I had no idea that I could be at risk for a blood clot, so I didn’t think one could ever happen to me. One of the most important things you can share with the people you know is information about blood clot risks.

Know the major blood clot risk factors.
  • A family or personal history of blood clots
  • Recent major surgery or hospitalization
  • Total knee or hip replacement surgery
  • An inherited or acquired clotting condition
  • You have cancer, or are undergoing treatments for cancer
  • You are immobile for a long time (confined to bed, long-duration plane or car trip)
  • You are pregnant or have recently given birth
  • You use estrogen-based birth control methods or estrogen for the treatment of menopause symptoms

That’s not all. Learn more about blood clot risk factors.

Focus on Blood Clot Signs and Symptoms

Just like knowing your risk for blood clots, it is important to be able to recognize blood clot signs and symptoms. Looking back, what was most striking about my situation is that I had symptoms of a blood clot in my leg (pain) and in my lung (shortness of breath, chest pain) at the same time. I also had these symptoms for several days, and they got worse as time passed, not better. Eventually, I called my primary care physician who recognized my symptoms as blood clots and told me to go to the emergency room immediately. This month, take time to share the symptoms of blood clots with the people that you know.

Know the symptoms of a blood clot in the leg or arm, also known as deep vein thrombosis or DVT.
  • Swelling, often in one limb
  • Pain or tenderness, not caused by an injury (sometimes feels like a cramping, or “charley horse”)
  • Skin that is warm to the touch
  • Changes in your skin color, such as turning white, red, blue or purple
Know the symptoms of a blood clot in the lung, also known as pulmonary embolism or PE.
  • Shortness of breath
  • Chest pain or discomfort, especially if it worsens when you take a deep breath, cough or lie down
  • Feeling light headed or dizzy, or fainting
  • Fast or irregular heart rate, or a rapid pulse
  • Coughing, or coughing up blood
  • Some people experience severe anxiety or feel like “something is really wrong”

When they occur together, DVT and PE are known as venous thromboembolism, or VTE. Blood clots in the lungs can cause death by obstructing blood flow, so if you or someone you know experiences these symptoms, do not delay emergency medical treatment.

Learn more about what blood clots might feel like.

Focus on Blood Clot Recovery

Recovery from blood clots is different for everyone. It can take weeks, months or years to recover fully, and some people live with long-term complications from blood clots, such as post-thrombotic syndrome, chronic shortness of breath, or even debilitating anxiety. If you have experienced a blood clot, it’s important to let people know what you are going through … and it’s also important for you to realize that they might not understand what you are going through.

Throughout my recovery, I had many people – some of them close to me – who did not understand how I felt, or understand why I was still in pain so many months after my PE. Sometimes, it was hard to talk about because it was so personal. How much – or how little – you share about your recovery is entirely up to you. During my recovery, I often found that sharing less was more. I found out pretty quickly that all I could do was share information about my situation, and if the people in my personal life didn’t understand, I moved on to talking with a community of my peers who knew exactly what I was going through.

Sometimes, sharing just a few general things about blood clot recovery can be helpful.
  • It’s different for everyone, and can include physical and emotional healing
  • Recovery can take a long time, but there’s no set time line
  • It’s not like a healing from a cold or a broken bone, it’s more like healing from major trauma
  • Some people require ongoing treatment for blood clots, which may involve taking medication and going to frequent doctor visits
  • Sometimes, people who are recovering may look normal on the outside, but they’re still healing on the inside
  • Blood clots are painful

Read more important things about what recovery from a blood clot can be like.

Focus on Blood Clot Prevention

It is true that not all blood clots can be prevented. About 30 percent of all blood clots that occur do not have a cause, or a known risk factor. However, there are several important things that you can do to prevent blood clots from happening, or from happening again.

The most important things that you can do to prevent blood clots are simple, and sharing them is an important part of blood clot awareness. If I had known or done these things in my situation, it may not have been as bad as it was.

Everyone can take simple steps to help prevent life-threatening blood clots.
  • Know your risk for blood clots. If you know your risk for blood clots or know when you might be in a situation that puts you at risk for blood clots like surgery or pregnancy, you can take additional steps to prevent blood clots. It is true that knowledge is power, or key, even when it comes to preventing blood clots. If you don’t know if you could be at risk, talk to your doctor about your concerns.
  • Know the signs and symptoms of blood clots. If you know the signs and symptoms of blood clots, you can seek help, hopefully before you find yourself in a life-threatening situation.
  • Know when to seek medical attention. If you think you might have a blood clots, seek help from your doctor or the hospital immediately. Don’t wait to see if it gets worse – or better. Get checked out sooner rather than later.

Learn more about how to prevent blood clots.

If you have already had a blood clot, there are some important things you can do to prevent future blood clots.
  • Take your medication as prescribed. The most common cause of blood clot recurrence is not taking your medication. If you’re struggling with your treatment plan, or side effects, talk to your doctor about your treatment options.
  • If you are going to be having surgery or a medical procedure, talk to your doctor about your risks for blood clots, and your risk for bleeding. Doctors have to carefully balance your bleeding and clotting risks. Don’t assume everyone knows your health history if you haven’t told them, and plan ahead if you can.
  • If you are pregnant or planning a pregnancy, talk to your doctor too. It is possible for women with a history of blood clots, or clotting condition, to have successful pregnancies. Connect with your doctor ahead of time, if you can, to talk about ways to prevent blood clots, such as taking blood thinning medications for the duration of your pregnancy.

Sharing information is the most important thing any of us can do to raise blood clot awareness, and Blood Clot Awareness Month provides the perfect opportunity to do so. If you’re not sure where to start, tell your own story and as you do, make sure to include the focus points above. Together, we can make a difference.

There is hope for healing and you are not alone,

 

 


Reader Writes In: What plans do you have to help raise blood clot awareness this month? Share in the comments.


Do you want to do more? Discover your personal plan for raising blood clot awareness.


March is Blood Clot Awareness Month and the BCRN bracelets are back! Visit my Amazon Influencer Shop to get your gear. #sponsored


 

 

How to Recover After a Blood Clot

Here are my strategies to help promote health and healing after a blood clot.

After my blood clots, I felt like a fish out of water – literally and figuratively. I could not breathe without an oxygen tank, and I also felt like I had no knowledge of what happened to me, or knowledge of what to expect during my recovery. I had no idea idea how to recover after a blood clot. Those feelings of inadequacy and frustration are some of the most devastating ones that I have ever experienced. I felt like I had lost all control over my life, and I had no idea how to regain control again.

Recovery from blood clots is different for everyone. It can take weeks, months, or years, and some people struggle with complications that last even longer. My recovery was extensive – it took a couple of years – and I will be on anticoagulants long-term to prevent further blood clots. During my recovery, I often wished I had a plan to help me through it. While no singular plan exists for recovering from a blood clot, because of how varied recovery can be from person to person, there are some simple strategies that I have learned that can help you promote healing and recovery in your life.

How to recover after a blood clot.

Here are my nine strategies to help you move through blood clot recovery to a healthy – and hopeful – outcome:

1. Find a doctor who you can trust. One of the first, and most important things, that you can do during your recovery is to find a doctor who you trust. You should have no doubts that your doctor has your best interest in mind and will help you heal. If you don’t have a doctor who you consider a good partner in your care, find a new doctor. It is okay to get a second – or even a third – medical opinion about your health situation.

2. Follow your treatment plan. The standard treatment for blood clots are prescription medications known as anticoagulants, or blood thinners. While these medications don’t actually thin the blood, or dissolve blood clots, they do help to prevent new blood clots from forming, or old blood clots from breaking apart and traveling through the blood stream, which can lead to a life-threatening pulmonary embolism. The most common reason for a repeat blood clot is not following a treatment plan. Take your medication as prescribed and follow your doctor’s instructions. If you have questions, ask. Remember, you should feel comfortable communicating with your doctor at all times.

3. Understand your situation. Blood clot diagnosis, treatment, and recovery can be overwhelming – especially if you don’t know anything about blood clots. Take some time to learn about your situation, whether it be basic information about blood clots, clotting disorders, or even ways to prevent blood clots. Seek out information in books and online, but make certain that they are reputable sources, such as patient advocacy organizations, medical journals and academic publications.

4. Listen to your body. It can be difficult to know what’s normal and what’s not normal during recovery from a blood clot. Always listen to your body and what it might be trying to tell you. If you have new or worsening chest pain, shortness of breath, or headaches, always get in touch with your doctor right away. If you don’t know if what you are experiencing is normal or not, ask your healthcare team to help guide you.

5. Make overall healthy living a priority. Recovery from a blood clot can feel like pure “survival mode,” especially in the beginning, but don’t forget to take care of all aspects of your physical and emotional health. Try to eat healthy, drink plenty of water, move around when you can, sleep, relax, rest, and do a few things that you enjoy, even if they are small activities. If you’re getting ready to start a new eating or exercise plan, be sure to touch base with your doctor before you do.

6. Recognize there may be obstacles. It is often said that healing is not linear, or does not go in a straight line, and that’s true for healing from blood clots too. You will have days when you feel better, and then perhaps worse again. It’s important to understand that your recovery may have ups and downs, but if the hardships start to outweigh your progress, make sure you talk to your healthcare team about it.

7. Connect with your peers. It’s not uncommon for the people closest to you – your family and friends – to be equally confused and overwhelmed by your recovery. In fact, they may not understand what you are going through, and they may not understand that healing can be a lengthy process. It’s important to connect with people who do understand, and who share your experiences. You can find peer support groups online, on Facebook, and sometimes even in person. When searching for support groups, make certain that they are dependable, trustworthy, and expertly moderated.

8. Get professional help if you’re struggling emotionally. Recovery from blood clots is not just physical. It’s not uncommon for people to feel anxious, depressed, isolated, overwhelmed, angry, sad or stressed after a blood clot. Some people experience even more powerful circumstances, like grief and post-traumatic stress disorder. If you’re struggling psychologically after a blood clot, reach out to a professional counselor or psychologist.

9. Always remain hopeful. No matter how overwhelming recovery from a blood clot is, it’s important to remember that recovery is possible. Never give up, and never stop hoping that there will be better days ahead. Celebrate the small improvements and acknowledge the setbacks. In the end, you will emerge, perhaps even with new inspiration for experiencing the things that matter most to you.

Remember, there is no right or wrong way to recover, and your experience may be entirely different from the next person’s experience. It can be a long journey – and there may be some frustrating setbacks – but recovery is possible. Ultimately, most people do recover from blood clots, and they do go on to lead normal lives, even if they have to take long-term anticoagulants to help prevent future blood clots.

Recovery resources to get you started.

Find A Doctor Tool (United States)
World Thrombosis Day (International resources)
More About Blood Clot Treatment
The National Blood Clot Alliance
The American Society of Hematology
The U.S. Centers for Disease Control and Prevention
BCRN’s Online Facebook Support Group
The National Blood Clot Alliance’s Online Support Group (not on Facebook)
How to Get Mental Health Help

There is hope for healing and you are not alone,

 

 


Reader Writes In: What is the scariest part of blood clot recovery for you? What have you learned during recovery that can help other people? Share in the comments below.


Recovery can take a long time and varies for each individual. Read more about what to expect and connect with others who are also recovering.


Visit my Amazon Influencer Shop to get the products I use to stay healthy and happy every day.


Blog stock photos courtesy of unsplash.

Getting Out of the Deep End

Can you believe it? 2017 is almost over and I don’t know about you, but I am ready to say goodbye to this year. I don’t like to rush things, but I am ready for a new beginning. A lot of 2017 felt like holding my head above water as a struggled in the deep end on the sea of recovery.

Don’t get me wrong, 2017 was an amazing year, and I did some things that I never thought I would since my blood clot diagnosis. I conquered one of my greatest fears – traveling abroad on blood thinners – when I flew to London and toured the UK for 11 days. Among the highlights of things I saw was the stone circle at Stonehenge, the Roman Baths, countless castles and cathedrals (my personal favorite), and the city of Edinburgh in Scotland.

Traveling overseas was a great fear of mine, primarily because of, “what if something like a blood clot happened so far away from home?” From there, I could think of a thousand other things that could go wrong on an overseas trip. From the long flight, to a blood clot, to an unexpected injury, illness, or other unforeseen natural or planned disaster, the bad things that could happen added up quickly in my mind. I worried a lot about whether or not I should go, and about what I would do if the unthinkable happened. I planned and prepared as best I could, and finally decided I couldn’t pass up the opportunity of a lifetime to see things that I had only read or dreamed about. I almost regretted my decision to go after being delayed on the tarmac – on the plane – which turned my eight hour flight into a 12-hour ordeal, but once I made it to Europe, I was able to relax and have fun.

Until the second to last day of our vacation when I had a very scary – and my personal “this is the worst-case scenario”  – experience occur. Much to my own disbelief, I fell and hit my head against a stone wall at the Tower of London. I had an immediate goose egg, blurred vision, and headache. I knew I needed to seek medical attention, and I did, just as soon as the taxi could get me to the hospital. I think I was too terrified to act, but thankfully, I had my family with me throughout the entire process. I had a CT scan at the hospital and was partially admitted for observation for 11 hours. I did not have bleeding, or an internal head injury. The biggest worry was my flight back home due to potential not-yet-seen bleeding complications, which did not happen. The flight home ended up going a lot smoother than the flight there. Experiencing one of my worst-case scenarios – and having a good outcome, because I was prepared for the possibility – has definitely helped to ease my fear and anxiety. Bad things can happen, even far away from home, and I will be okay.

It was a great year for my personal growth, as well as a patient leader and blood clot advocate. I am thrilled to say I was able to speak to two very different audiences this year, both which challenged me to think about how I share my story in new and different ways. One audience was chemists and medical professionals in San Diego, California and another was women with diabetes in Washington, D.C. As a result of my experiences this year, I feel that I am better prepared to continue providing information and support to even more people. Blood clots can and do affect anyone, and I hope that by sharing my story, I am able to provide life-saving information to someone who may not have known about blood clots before.

For BCRN, 2017 was a great year, and I am extremely grateful for your support. This year, there were over 300,000 page views on my blog. Thanks to you, I have gained important insight into the issues you want to talk about most, as evidenced by my most popular posts about recovery: how long does it take and what does it look like? I wrote them so long ago, in the midst of my own recovery, and I am so glad to know they provide relief and understanding for you still today.

Like any year, 2017 also saw it’s fair share of challenges and setbacks. After a few years of normalcy, I experienced some health challenges this year that challenged my resiliency and positive outlook. In August, I had a major bleeding incident that landed me in the ER for treatment. I’m still recovering from that by trying to stabilize my INR and boost my iron levels. Yesterday, I had an ultrasound to check for a second blood clot in my left calf. There was not one, thankfully, but it scared me to think that there might have been. In addition, I watched someone very close to me suffer from a traumatic brain injury while on blood thinners, which was very different from my own experience in London. Thankfully, that person is now recovering, but there were some scary times in the last months of this year.

These experiences reminded me of what I have been through in the past, and of just how fragile health our health is. These events have impacted me more than I anticipated, and they have been difficult to share outside of my private group (you should join us there, if you have not already). I’m still reeling from my experiences in a lot of ways. I know, however, I’m not alone, and many of you have already been down this road of uncertainty too. Through it all, I remain grateful for my health and grateful for the health of my friends and family. In just one instant, everything can change, and the end of this year made no mistake about reminding me of that.

As I look ahead to 2018, I don’t want to stop growing, sharing, learning, and exploring. I want it to be the year of “new beginnings” and “big things.” I want it to be the year of smooth sailing, too, sailing above the water. I don’t quite know what that means yet, but I do know that I have big plans for BCRN, and I hope you will join me for the start of them. I want to write more, share more, and do more to continue to provide you with the best support available if you’re recovering from a blood clot. You, my readers, are the driving force behind the work I do here, and I can’t wait to see what’s in store for us in the year ahead. Let’s get out of the deep end and together, let’s forge ahead into what the future holds.

My wish for you is that you have a wonderful holiday season, with the people that matter the most to you. If you’re in pain, or you’re struggling with your health: you are not alone. No matter how hard it gets, don’t ever get up, and remember, it does get better in time. We’re still here, and we haven’t drowned yet. I wish you health, happiness, and a wonderful 2018.

There is hope for healing and you are not alone,

 

 

 

P.S. I couldn’t leave you without a few pictures from my adventures this year. Here’s a recap:

 


Reader Writes In: How was your year? What are you most looking forward to next year?


Does the new year have you worried about making commitments and promises that ultimately end in disappointment? Find out why I don’t make New Year’s Resolutions.


New: I was recently invited to be a part of the Amazon Influencer program to share some of my favorite products with you. These are products I personally use on a regular basis. They include things like bandages, pill cases, and medical IDs. {Disclosure: I may be compensated for  purchases made from my shop.}


 

Fix Your Thinning Hair

Sometimes, medications that keep us safe from a dangerous disease or condition, can also cause unwanted side effects. Anticoagulants, or blood thinners, help to protect us from blood clots, they can also cause troubling side effects sometimes. These side effects can range from mild, like a headache, to severe, like uncontrolled bleeding. Side effects can vary from person to person, and are different for different blood thinners. If you have any side effects while taking blood thinners, it’s important to have a conversation with your doctor about what you are experiencing.

Although listed as a rare, or even nonexistent, side effect for most blood thinners, some people experience hair loss, or hair thinning, while taking them. It’s important to let your doctor know if you are losing your hair, just in case something else is going on. Keep in mind that many things can cause hair loss, such as nutrient deficiencies, other diseases, hormonal imbalances, other medications, stress, and genetics. It’s important to remember that not all medications will affect everyone the same way, and not everyone experiences hair loss, or hair loss to the same degree. The bottom line is, if you are experiencing hair loss – or hair thinning – to any extent, it can be devastating to your self-esteem during what is already a difficult recovery from blood clots. No matter what the cause might be, I am going to share my top tips to help fix your thinning hair.

I have naturally thin and straight hair. I noticed about a year after I started taking a blood thinner, that my hair seemed thinner than usual. Due to my recovery and time away from work, I did not get a haircut for a very long time, and my hair was longer than it had ever been. Seeing my hair coming out in clumps on my brush was very upsetting to me. I found a hair stylist and made an appointment as soon as possible to help fix my hair.

I explained to my stylist that I was concerned about my thinning hair, due to the medication I was taking. I told her I was brushing my hair, and it looked like I was brushing it right out of my head. She inspected it closely, and said that while some medications can cause hair thinning or hair loss, my hair looked to be thinning mostly from the length of it. She explained that hair tends to thin the longer it grows, and when we brush it, it looks like more is coming out because it is so long.

I got my hair cut that day, but since I like my hair longer, I cut it to right below my shoulders, which was still significantly shorter than it had been. I noticed an immediate difference in the next few days as I was combing and styling my hair. It looked fuller and less hair came out on my comb and brush. I am not sure if I experienced hair thinning or loss due to my blood thinner, but I do know that I am more conscious of my hair, and I do care for it differently since starting blood thinners.

There are many things you can do to help fix thinning hair, and not everything works for everyone. It is important to make sure you are eating as healthy as you can, and that you are getting the right nutrients in your diet, which is also important for overall health and well-being. I personally don’t choose to take any extra supplements or medications to help fix my thinning hair, because that can cause interactions with my blood thinner.

I have found a few simple ways to help fix my thinning hair, and these things are part of my daily personal care routine. I am not a hair person, and I try to spend as little time on my hair as possible, but I do like for my hair to look presentable, if not nice. If you’re looking for hair styling advice, this is not the post for you. If you’re looking for some simple ways to help fix your thinning hair, here are my top five tips:

Tip #1: Get your hair cut, or trimmed, regularly.

This is my number one tip to help fix your thinning hair. Keep in mind, shorter hair sometimes looks fuller. I get my hair cut about every four months, which is not as regular as some people, but it is regular for me. Keep a close eye on your hair at first to see how fast it grows, and schedule your appointments around your hair growth. You can tailor your appointments to fit your schedule and your budget. Haircuts don’t have to be expensive, and sometimes you can have a friend or family member cut it for you to save money. No matter how you choose to do it, get your hair cut on a regular basis.

Extra: Find a hair stylist that listens to you, and specifically addresses your concerns about your thinning hair.    

Tip #2: Wash your hair with shampoo and water less frequently.

I was hesitant about this at first – because oily hair is not nice – but it really works for me. I only wash my hair with shampoo and water twice a week, sometimes three times if I have done something active or sweaty. The other days, I use dry shampoo to clean my hair without the stress of a full shampoo. Dry shampoo takes care of oil, and also adds body to my hair.

Extra: Not all dry shampoos are the same, and I tried about 167 before I found one I like. I use this dry shampoo. Get it here

Tip #3: Use products to help add body to your hair, like a root lifter.

Root lifter made a difference in my life long before I started taking blood thinners, and it is my favorite styling product. Most days, I spray dry shampoo, or use root lifter, comb my hair, and go. If you’re using multiple products, be careful not to use too many, which can cause your hair to become weighed down, which yes, can make it look thinner. I don’t use dry shampoo and root lifter together because the dry shampoo also adds body to my hair.

Extra: I don’t like wet products that tend to weigh my hair down and make it heavy, or thin. I use this texturizer/root lifter, which comes in a powder form. Get it here.   

Tip #4: Use products to help add texture to your hair, like sea salt spray.

If your hair is thinning, sometimes adding texture can help. You can do this with cut layers, but you can also do it at home, in your own bathroom. During the summer, I like to use sea salt spray on my hair, which adds a little texture, and smells like I just walked onto a tropical island. It’s easy – just spray it in damp or dry hair, and tousle with your hands.

Extra: A little goes a long way. I bought a travel size container of this sea salt spray, which lasted me all summer. Get it here.

Tip #5: Style with heat as minimally as possible.

I like to vary how I care for my hair from day to day. I mix up washing it in the shower, using dry shampoo, root lifter, and sea salt spray, depending on how my hair looks on any given day. Sometimes, I fully style my hair with a blow dryer, and that adds body and texture too. However, since I started a blood thinner, I try to style minimally with heat, which can further damage hair. Often times, I dry my hair fully at the scalp to add body, and dry the ends to a damp dry, and then let it air dry the rest of the way.

Extra: If you dry your hair on a regular basis, use a lower heat setting on your dryer. If you use a curling or straight iron, use a lower heat seating.   

I hope these tips help you fix your thinning hair. Give them a try, and come back to let me know what you think.

There is hope for healing and you are not alone,

 

 


Reader Writes In: Is your hair thinning since you started blood thinners? What tips can you share to help fix your thinning hair? Have you tried any of my tips? Did they work for you, or not?


NEW: Shop my favorite hair care and beauty products here.


If you’re feeling down in the dumps, here are my 7 Steps to Feel Better about Yourself.


 

Sharing My Patient Journey

When I was first asked to share my patient journey at the Diabetes Sisters Weekend for Women in Alexandria, Virginia I thought one thing: Why me? After all, I talk about my personal recovery from blood clots, and I don’t have diabetes. Excited as I was to explore the possibility, I returned the call to decline and said, “I think you have me confused with someone else. I don’t have diabetes.”

“No, we don’t,” was the answer I received, “We want you to speak because you do not have diabetes. We want to share a different perspective on the patient journey.” Excited by the possibility to speak to a different audience than the ones I am used to, I dove into preparing my presentation to talk about my personal journey from being a patient to being a patient advocate. I’ll be the first to admit, attending an event specific to a disease separate from the one I have was intimidating at first.

Before I went, I learned what I could about DiabetesSisters, a nonprofit organization whose mission is to improve the health and quality of life of women with diabetes, and advocate on their behalf. What I soon realized is, this resource – including the support and educational conference I would be attending – is the type of resource that the VTE community doesn’t have right now. We’re getting there, but we still have some progress to make.

Part of the support that DiabetesSisters offers is regular meetings, or in-person opportunities, to share information, experience, and support with people who have been there too. The Weekend for Women even offered support for partners of women with diabetes (Partner’s Perspective Program) and the Diabetes UnConference, which was exclusively to discuss deeply personal and sensitive issues such as the fear of the unknown when managing a lifelong illness. I soon realized how incredibly fortunate the people attending these sessions are to have this measure of support in their lives, and I immediately wanted to be a part of it.

At the conference, I shared my personal thoughts about how to navigate the path from patient to patient advocate through storytelling, and I shared my thoughts about how telling our stories can in fact lead to healing and empowerment. I also took some time to share important facts about blood clots, including risk factors, and signs and symptoms. I had several women come up to me after my talk to either share their personal blood clot story, or the story of a family member. I also had a few people tell me they had no idea they could be at risk for a blood clot, and about how they planned to discuss their risk with their doctors upon their return home.

I was invited to sit in on the workshops, in which I observed some thought-provoking discussions about how to support a spouse or loved on who has diabetes, and how to handle our worst fears when facing a chronic or long-term illness, like the fear of being incapacitated and left alone, or even the fear of death. I realized these are all thoughts I have had throughout my recovery from blood clots, and I still have some of them today. The fear of the unknown is a great obstacle for many of us, and it was encouraging to hear other people talking about it, face-to-face.

By now, you might be thinking, “Great, but I’m not diabetic, I have a blood clot, so why are you sharing this information with me? The answer is: Whether you have diabetes, have a blood clot, or have a clotting condition, we all share the same journey as a patient. We all must live day to day with an illness that might never go away. We have the same fears, the same struggles, and the same concerns. A person with diabetes might have to consider what he or she eats, and check his or her blood sugar. I have to consider what I eat and check my INR because I take warfarin. We both have to remember to take pills, go to regular follow-up appointments, be proactive in our health, and sometimes, we even have to miss out on things because our illness might take precedence over what we want to do.

What these people taught me is, no matter what the condition is, we all face the same fears, struggles, setbacks, triumphs and joys as a patient, and as a person. They taught me what I was supposed to be sharing with them: Sometimes it is easy to become fully consumed by our own disease and our own situation, but in fact, there are people all around us who can relate to what we have gone through, or what we are going through. As a blogger, and as a patient advocate for the VTE community, I become very consumed with that, because it is my passion, but it’s important to remember that I truly am not alone, even when I look outside of this community.

Below are some some resources that I want you to have. If you have diabetes, or if you want to begin your journey from patient to patient advocate, explore the links below for some essential tools.

Extra Diabetes Resources for You:

Did you know? Long-term diseases like diabetes are a risk factor for life-threatening blood clots. If you have diabetes, I would love to connect you with some of the resources and bloggers from the DiabetesSisters Weekend for Women.

DiabetesSisters
Blood Sugar Trampoline
Below Seven
Diabetes Mine
Yoga for Diabetes

Patient Advocacy Resources for You:

Did you know? Anyone can become a patient advocate just by sharing their story. Below are some resources to help you get started.

Charting Your Own Patient Journey (my slideshow from the conference)
How to Raise Blood Clot Awareness: Discover Your Personal Plan
Sharing Success as an Online Health Blogger
From Make-A-Wish Employee to Making One of My Own Wishes Come True

There is hope for healing and you are not alone,

 

 


Reader Writes In: Are you dealing with other health conditions besides blood clots? Where are you on your own patient journey? Where would you like your journey to take you?


Are you new here? Welcome to BCRN. Here is my story and more about me.


Are you worried that you might have a blood clot? Here is how to talk to your doctor.


Connect with BCRN on Facebook and in our private Group.

When should I call my doctor?

After my blood clot, I felt like I could no longer trust my body anymore. After all, I was taking care of it – exercising, eating well and losing some extra weight – when a blood clot from my leg went to my lung and almost ended my life at just 29 years old. I was healthier than I had been in a couple of years, I was happy, and I had no other out-of-control health problems. The very last thing I expected was a blood clot, in fact, I didn’t expect one at all. If I couldn’t trust my body when it was healthy, how could I possibly trust it when I was sick, on blood thinners, and recovering from a mind-blowing event that nearly killed me? I couldn’t. That was almost as scary as surviving something that kills one in three people that it affects. Not only could I not trust my body, I also wondered if I could trust my head: How would I know if I should call my doctor during my long and difficult recovery?

In the initial days after my discharge from the hospital, I was at my hematologist’s office once or twice a week to have my INR checked. I had an appointment with my doctor every month to discuss my treatment and my recovery, and I had a lot of appointments with a variety of other specialists to fill the rest of my very miserable time with. I am very fortunate that my hematologist – and my main point of contact for my care – is very understanding and supportive and assured me early on that no question was dumb, no phone call was a waste of anyone’s time, and he absolutely expected to hear from me a lot as I went through the stages of healing. So, I figured, what did I have to lose? I called him a lot – for everything in the beginning. If I had any pain, unusual feeling, or question, I just called him. I treated it as a non-negotiable part of my treatment plan: Take your medication, go to your appointments, and call your doctor.

He always answered me in some way. Sometimes, his answer was, “That’s normal, you can expect that,” or it was “Why don’t you make an appointment to come see me?” or, one time it was, “You need to go to the emergency room right now.” That time I thought I had another PE, and thankfully, I didn’t. I did have pleurisy, or inflammation of the lining of my lung, which was nearly as painful and required admission to be treated.

As time went on, I started to learn how my doctor would answer me, and I started to learn how my body felt after a blood clot. I started to learn what was “normal” for me, what was unusual for me, and what was downright frightening for me, or sent me into panic mode. Eventually, I noticed I was calling my doctor a little less than once or twice a week, as I learned to manage my health with my own knowledge and experiences. I went from calling my doctor a couple of times a week, to calling him a couple of times a year. I now know when I need to seek help right away, make an appointment, or when I can handle a situation at home, by myself.

One of the questions I hear frequently is, “How do I know when I should call my doctor?” The answer is simple: If you have to ask, call your doctor. That being said, calling a doctor is not easy for everyone – and not everyone has a supportive doctor. If that’s how you feel, there are some things you can do to help you decide if you should call your doctor.

Listen to your body.

You may not trust your body – or you might be really angry with it after everything you have been through – but trust me, your body is smart. Listen to it. Your body is very good at letting you know, most of the time, when something is wrong. If you feel pain or have symptoms that are unusual for you, your body might be trying to tell you that something is wrong.

Work with your doctor, or healthcare professional.

Your doctor is your best resource for understanding your symptoms and what they may mean. Your doctor works for you – and you should not worry about bothering him or her. If you don’t have a doctor who you feel is a partner in your care, take steps to find a doctor who is. You, and you alone, are in charge of your body and your recovery. Talk to your doctor about a plan to manage your health. Can you call him or her? Can you send an email? Should you proceed right to the emergency room for certain things? What symptoms should you watch out for? What symptoms might be normal for you? Work with your doctor to develop a plan of action – no matter how simple – for handling your health questions. My plan was as simple as this: Call my hematologist with any questions I have.

Trust your past experiences.

This ties together listening to your body and working with your healthcare provider. Once you do these things, you will start to learn what is and what is not normal for you during your recovery. For example, let’s say you have a pain in your leg that feels exactly like your DVT, so you call your doctor, and he or she advices you to seek medical attention right away. You automatically know what to do if and when it happens again. If you have pain in your leg that hurts a lot, but goes away with rest and elevation – when your DVT pain did not – you start to learn what that pain means for your body. Maybe it means you walked too much, or worked out too hard at the gym. Simple thoughts like, “This pain is different,” or “I have never hurt this bad before,” are clues that something could be very wrong, and you should call your doctor for guidance. Thoughts like, “This feels familiar, I need to take it easy this afternoon,” or “I have felt this tired when I don’t get enough rest at night” might be clues that a particular feeling is normal for you. If you can’t remember, or if it seems overwhelming to understand your experiences, keep a journal or log book with simple entries about what you feel, when you feel it, for how long, and what the resolution is.

Some Important Things to Watch Out For  

There are some signs and symptoms that you should be aware of – especially once you have had a blood clot – and you should always call your doctor if you question how you are feeling.

A blood clot in the leg or arm (or other parts of the body) is called deep vein thrombosis, or DVT, and is dangerous because it can break apart and travel through the blood stream, leading to life-threatening problems, like a blood clot in the lung. If you experience signs or symptoms of a DVT, call your doctor or seek medical attention as soon as possible.

Signs and symptoms of a blood clot in the leg or arm (deep vein thrombosis or DVT):
  • Swelling in the affected leg, including swelling in your ankle and foot, or swelling in your arm
  • Pain in your leg, ankle, foot, or arm. The pain in your leg can feel like severe cramping, or a charley horse, and often won’t go away with your regular methods of pain relief
  • Warmth and/or tenderness over the affected area
  • Changes in your skin’s natural color (red, blue, white, or purple)

A blood clot that breaks off from the leg or arm and travels to through the bloodstream to the lung is called pulmonary embolism, or PE. A PE is life-threatening because it can block blood flow and oxygen to the lung(s). If you experience signs or symptoms of a PE, go to the emergency room, or call 911, immediately.

Signs and symptoms of a blood clot in the lung (pulmonary embolism or PE):
  • Unexplained sudden onset of shortness of breath
  • Chest pain or discomfort that worsens when you take a deep breath, cough, or even lie down
  • Feeling lightheadedness or dizzy
  • Rapid pulse
  • Sweating
  • Coughing, or coughing up blood
  • A sense of anxiety, nervousness or impending doom

If you are taking blood thinners, you might also worry about unwanted or dangerous bleeding. If you have any questions about bleeding, you should call your doctor right away.

Signs and symptoms of dangerous or internal bleeding can vary greatly depending on where in the body bleeding may occur. If you experience these symptoms – or any other symptoms that cause you concern – call 911 or seek medical attention right away.

Signs and symptoms of bleeding
  • Abdominal pain and/or swelling
  • Light-headedness, dizziness, or fainting (can result from any source of internal bleeding once enough blood is lost)
  • A large area of deeply purple skin, or bruising, especially around the chest or abdomen areas
  • Swelling, tightness, and pain in the leg or arm after an injury
  • Headache and/or loss of consciousness
  • Blood in urine or stool (black or tarry stool)
  • Shortness of breath
  • Chest pain
  • Nosebleeds, cuts, scrapes, etc. that do not stop bleeding after applying direct pressure for 10-15 minutes
  • Nausea and/or vomiting
  • Unexplained bleeding from another body cavity, including ears, nose, mouth, or anus
  • More symptoms of internal bleeding
Even though it can be difficult to learn about your body after a blood clot, there are some things that you should never ignore. In the event of a head injury – such as a bump, bruise, cut, etc. – always consult with your doctor as soon as possible for further instruction, or seek immediate medical attention. If you have shortness of breath, chest pain, or the worst headache of your life, always seek immediate medical attention because these might be symptoms of something serious. 

Managing your health after a blood clot is not easy, and there are many things to think about, consider and worry about. In time – as you learn from your experiences and your healthcare provider – it does get easier and eventually, I hope you will find that you know your body very well. While it may take some time to get there, you too can manage your health after a blood clot. In the meantime, if you wonder, always make the call. Your health – and perhaps ultimately your life – are always worth making the call.

There is hope for healing and you are not alone,


Reader Writes In: How do you decide when to call your doctor? Is your doctor a partner in your care? Why or why not? How do you manage your health after a blood clot?


There are three symptoms you should never ignore. Find out what they are.


Are you worried that you might have a blood clot? Here is how to talk to your doctor.


Connect with BCRN on Facebook and in our private Group.