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.


How to Handle Anxiety After Blood Clots

I’m frequently asked, “does the anxiety after blood clots ever go away?” My answer is, “usually it gets better, but it takes time – sometimes it takes a long time.” Health-related anxiety after a blood clot is something that many people experience, and it is something that I have dealt with – and still deal with – six years after a DVT and PE changed my life forever. While I still face anxiety from time to time, it does not completely rule my life. That is what I hope for you too, and that is what I mean when I say, “it does get better in time.”

A blood clot in my lung is one of the scariest things I have ever experienced. If you’re feeling that too, you’re not alone. The anxiety I felt after my blood clot was debilitating, and healing from it was just as hard as – if not harder than – healing from the physical problems I faced. For me, the anxiety would start with a small ripple, just the smallest thought thrown into the pool of my mind, like a stone: What if that tight muscle isn’t just a tight muscle? The stone would sink, and the ripples would spread out: What if it’s a blood clot? I think it hurts to put pressure on my leg. Farther and farther: I’m not sure if I can breathe. I must have a blood clot. I can’t go through this pain again. I won’t survive this one. My thoughts would escalate until there was nothing else on my mind, except what might be wrong with me.

No one doubted that I believed I had a reason to be afraid, but no one in my personal life really understood what I was going through. On the outside, I looked fine. My initial days, weeks and months after my blood clot were filled with frantic phone calls to my doctor – and his nursing staff – to ask about a current pain, feeling, sign or symptom of something that was, without doubt, going to be the end of me. My doctor was supportive and listened to my concerns. He told me I was normal for being worried. He usually instructed me in one of three ways: Watch something for a progression of symptoms and call back, make an appointment to come see him as soon as possible, or head to the ER to get checked out. I have done them all. Through this (repeated) process, I have since learned what I can watch myself, when I need to make a phone call, or when I need to go to the hospital.

It has been six years since my blood clots, and I don’t focus on the fear from day to day anymore. It took me a long time to heal, though, and it wasn’t always easy. While I was recovering, I spent months and months wondering if my health would improve, or if something else would happen that would leave me with more problems, or worse yet, dead. Living with antiphospholipid syndrome – or APS, which is the autoimmune clotting disorder responsible for blood clots – makes it hard for me to go back to the way I was. APS could progress, or create more serious problems, such as problems with my organs or stroke, so I can’t ignore changes in my health. Taking warfarin – an anticoagulant to prevent future blood clots – has changed my life in several significant ways. I get my blood tested regularly, and I take some extra precautions – like calling my doctor – if I hurt myself or notice anything unusual, such as bleeding or bruising when or where I shouldn’t be bleeding or bruising.

Even though my daily life is not consumed by “what ifs” with regard to my health, there are times when it still gets to me, and there are times when my anxiety still takes over. I have always been an anxious person, especially about my health, but my blood clot experience – and my APS diagnosis – has added another layer to my anxiety. When I was a child, I always thought I would have the “worst-case scenario” disease or injury, when in reality, I was a pretty healthy child (except for an underactive thyroid). When the worst-case scenario did happen to me – a life-threatening blood clot at just 29 years old and diagnosis of a disease that no one had ever heard of (or that no one could pronounce) – it seemed that all of my childhood fears had come true.

Sometimes these deeply embedded fears, combined with what I went through with my blood clots, get the best of me. Last Monday, I woke up with a pain in my stomach that felt a little bit like bloating, but it wouldn’t go away. It lasted two days, during which time I convinced myself it was massive internal bleeding. So, I had my INR checked and found out it was within my normal range. Given that I had no other symptoms besides pain, I made an appointment with my primary care physician who ran some tests and concluded that it was one of two things: indigestion or the start of my menstrual cycle. The latter proved to be true – within hours of leaving my doctor’s office – and I felt relief from my stomach pain. I relaxed, confident that I had talked to my doctor and everything pointed to my period.

The next day, I had a strange sensation in my head and some weird anomalies in my vision, which worried me. Vision changes can be a concern for people on certain medications and for people with APS. I believe I experienced on ocular migraine, which the Internet said (thank you, Internet) could be a result of disrupted blood flow in the brain. I panicked – and ran with blurred vision – to tell my husband. In my heightened state of fear, I managed to trip and fall halfway down the staircase, twisting my ankle and banging my back on the bottom step. Now, I knew I was bleeding internally and would need ankle surgery too.

I wasn’t bleeding – thankfully – and my ankle pain resolved after ice and rest. I decided to live out the week – and maybe the rest of the year – in a bubble. In all seriousness, though, I am concerned about what happened with my vision, and wondering about it sent my anxiety into overdrive. An appointment with my eye doctor didn’t reveal any immediate problems, but we’re keeping an eye on my symptoms.

I know, though, that I will be okay. What I have learned since my blood clots is that healing is a process – and it is something that I constantly work to obtain. My healing wasn’t linear, it didn’t happen overnight. I didn’t heal in all aspects of my life all at once. My journey to healing was filled with twists and turns, ups and downs, and bumps in the road. At times, I would take three steps forward and eight steps back to a place where I had just come from. It took me years to repair my physical health, my financial health, my self-esteem, and my relationships. I am still working on healing my emotional health.

Over the years – and since I have gained some distance from the time when my blood clot happened – I have learned a few simple things that have helped me deal with anxiety after blood clots. Ignoring it was not helpful. Wishing it would go away – and not doing anything about it – was not helpful. Telling myself to suck it up – and get over it – was not helpful.

Here is how to handle your health-related anxiety after a blood clot:
Trust yourself – and be kind to yourself.

If you think something is wrong – or different – you’re probably right. Give yourself some credit after everything you have been through. If you have a question or a concern – whether physical or emotional – allow yourself to feel that. Your body has a way of telling you when something is wrong. Honor that relationship and get it checked out.

Talk to your doctor.

Your doctor should be your number one go-to when you have a concern about your health. No matter how small – or big – you think your concern is, communicate with your healthcare team. Sometimes, even the smallest symptom or problem might be a sign of something serious. Or, it may turn out to be something insignificant, but at least you know. You have to nurture your physical and emotional health. There is no sense in worrying about something, if you can get it checked out instead. Take your trust in your body’s signals and contact a medical professional to help you figure out what may – or may not – be going on. Both outcomes are okay!

Keep a journal or log of your symptoms.

I love journaling a lot of different aspects of my life – work tasks, travels, stories, blog posts, recipes – so this comes easy to me. If journaling doesn’t come easy for you, that’s okay. Start by getting a notebook – or the notepad on your phone – and just make a list of what is happening to you. If you have a question or a concern, write it down. Write the date, what occurred, how long it lasted, how you felt, and what you did about it. This is helpful because when your doctor asks if anything is new, you have it all right there in front of you. If you make an appointment to see your doctor for an issue, your doctor will ask for details. Be prepared ahead of time and pull out your notes.

Seek help for the emotional aspect of recovery.

Sometimes, we can’t do it all alone, even if we try. Often times, people wouldn’t find it unusual to contact a physical therapist for help with movement and motion after surgery, for example, but they are afraid to contact a counselor or psychologist for help with emotional healing. Do not be afraid. Just like our bodies, our minds may need help to heal. You would never expect to heal physically from a blood clot without medical intervention from a doctor. Equally, if you are struggling on your own, you should not expect to heal emotionally without assistance from a professional. If you need help, talk to your doctor. He or she can direct you to these services.

Have patience with the process.

I was not patient during my recovery from blood clots. Looking back, though, I can see that time was perhaps the most critical factor in my recovery. It took time to heal physically – and it is taking time to heal emotionally. There was nothing I could have done to speed it along. Blood clots are life-changing and traumatic for many people. Trauma is not healed in a day, a week, or even a month or two. It can take a very long time to heal. It is so hard to be patient when you want to desperately to feel better, but sometimes, time is what it takes to get to where you want to be. Your body – and your mind – have been through a lot. Allow them to take the time they need to heal.

Don’t forget, it’s important to talk to people who understand what you are going through – because they have been there too. Join my private Facebook Group for more peer support.

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

 

 


Reader Writes In: Do you struggle with health-related anxiety? If so, what are your thoughts for dealing with it? Share in the comments. I would love to hear from you, and your comments are so helpful to the other people who read this blog.


Get my resources for emotional healing from blood clots here.


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.

Happy 36th Birthday to Me

I don’t know what I had planned for this post, but I think it was something different. I wanted to talk about my birthday – I’m 36 today – and I started working on this post like all of my other ones, by looking for images and artwork that inspire and motivate me. In doing that, I came to the sudden and very dramatic realization that I don’t think anyone cares about the big 36. If I was turning 21, 25, 30, or even 40, there seemed to be plenty of images to choose from, but not a single one for 36.

So, I started thinking about it, and against my better judgement, I decided to take inventory of what 36 looks like. I have grey hair at my temples. I have wrinkles around my eyes and around my lips. My upper arms are flabby. My thighs rub together – and jiggle – when I walk. My stomach flab is flabbier than I would like. I pulled a longer-than-I-would-like-to-admit hair off of my neck the other day. For the first time in my life, I purchased skin firming lotion. I think it fights the seven signs of aging, but I’m hoping it fights fat too.

I decided to take inventory of what 36 feels like, because I thought it felt the same. It doesn’t. Most days, I feel pretty good, but little things occur every once in a while, that never used to. I can’t wear contacts anymore without my eyes feeling like sandpaper. I’m much more sensitive to hot and cold temperatures than I ever used to be. My stomach no longer appreciates the hottest hot peppers on the planet. I can barely finish a half a glass of red wine or a half a bottle of beer. If I don’t get enough sleep, I get angry, really angry.

I guess I got old.

I let that thought sink in for quite some time, and I realized, I don’t like it at all.

I still have a lot of living to do. I want to see more of the world, continue to help people through my career, and maybe even have a family one day.

I survived something that many people do not, and on second thought, I realized I was thinking about this all wrong. My body – and my mind – have been through a lot of changes these past six years.

Maybe I have grey hair at my temples because I have been through, and come out on top of, a lot of health-related stress. I have wrinkles around my eyes and around my lips, because I try to spend a lot of time laughing. My upper arms are flabby, my thighs rub together – and jiggle – when I walk, my stomach flab is flabbier than I would like, and my husband still thinks I’m sexy. I pulled a longer-than-I-would-like-to-admit hair off of my neck the other day, and now it’s gone. For the first time in my life, I purchased skin firming lotion, and if it makes me feel good, why not?

I can’t wear contacts anymore without my eyes feeling like sandpaper, but I can rock a great pair of glasses. I’m much more sensitive to hot and cold temperatures than I ever used to be, so thank goodness for tank tops and super-soft wraps. My stomach no longer appreciates the hottest hot peppers on the planet, and to be fair, they were the hottest peppers on the planet. I can barely finish a half a glass of red wine or a half a bottle of beer, but I never really drank a lot any way. If I don’t get enough sleep, I get angry, really angry, so I need to make sure I get sleep.

Then, I came to another realization: None of my complaints about myself have to do with my blood clot, my recovery, or my long-term treatment. Taking blood thinners, going to monthly doctor’s appointments, and seeing four or five specialists are not things that make me feel old. If those things don’t make me feel old, what reasons do I have to feel old? The things I have survived, and the things that I do to take care of myself now, remind me of where I have been, how far I have come, and what I need to do to live a long life.

It has been six years since my DVT, and life-threatening PE. Now, as many of you know if you read my blog, I consider myself recovered. I still take anticoagulants (warfarin) and will for the foreseeable future. I get my INR tested about once a month to ensure my medication is keeping me safe from clotting and unwanted bleeding. I go to follow-up appointments with my hematologist every three months. I stay alert for signs and symptoms of blood clots, or changes to my health because of antiphospholipid syndrome. Physically, I am doing well. I don’t have regular pain or ongoing swelling in my leg. My breathing is back to normal, and I have been walking and jogging again without too much of a struggle. Emotionally, I am also doing well. My experiences – and my worry about future experiences – no longer plague my every thought. I will always struggle with anxiety (particularly related to my health), fear of the unknown, and fear of pain. I deal with it as it comes, and I try to treat myself with the same kindness and understanding that I show to others.

I don’t blog as much as I used to — and maybe I will change that now that I am 36 – but that doesn’t mean I’m not continuing my work. Nearly all of my time is spent providing information and support to people who are recovering from blood clots, both on a professional and personal level. This is the work that I do every day, and I am grateful for the love, support, and encouragement that I receive from you each day. Thank you for making the work that I do possible. I’m a real person on the other side of this platform, and your encouragement for me means just as much to me as my encouragement for you means to you. As always, if you need immediate support, the best place to connect with me is in my private group on Facebook: BCRN Facebook Support.

Birthdays are to be celebrated, and I am heading into my 36th year with a lot of expectations for the future. I have a lot left to do, experience, say and share. I want to share my travels, more about my daily life with antiphospholipid syndrome, and more about my life with blood thinners. If I do have a family in the future, I want to share that experience with all of you too. I want to write about some of the things that have happened to me, that I just haven’t had time to do yet. I want to build a life – and a legacy – with my husband. We are not meant to live this life alone, afraid, or in the dark. If sharing my experiences can continue to help someone else, that is what I choose to do. I have been given the experience, the tools, and the determination to do so, and I won’t stop here.

So, let the celebration begin. In honor of my birthday, I am giving you a gift. You read that right! One lucky blog follower will receive a silver “Not Alone” Mantraband for my birthday. Mantrabands are simple, elegant bracelets with an uplifting message; promoting a lifestyle of optimism, positivity, mindfulness. Mantras got me through some of my hardest days in recovery. Wear this bracelet as your daily reminder that you are not alone in what you are going through. You are not alone in your recovery from blood clots. There is hope for healing.

My 36th Birthday Giveaway Details

9/4/18: This giveaway has ended. Congratulations to Anita Jude! Please check your inbox for an email from me, or email sara@bloodclotrecovery.net to claim your Mantraband. 

Use the Rafflecopter widget below to enter. Only entries through Rafflecopter will be eligible. This is a service that I use to keep track of entries, and to ensure a fair contest. Giveaway runs from August 30, 2018 – September 3, 2018. BCRN will randomly select one (1) winner on Tuesday, September 4, 2018. Winner will be notified on social media and via email, and will have until Thursday, September 6, 2018 to claim his/her prize. A new winner will be selected on Friday, September 7, 2018, if original winner does not respond.

Although this is a gift to you in honor of my 36th birthday, the cost of the Mantraband plus shipping is coming out of my own funds. Please, U.S. shipping/delivery addresses only. Thank you! Silver “Not Alone” Mantraband is valued at $25, plus shipping.

a Rafflecopter giveaway

Good luck!

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

 

 


Reader Writes In: What is your favorite mantra, phrase or quote? If you want to enter the Mantraband giveaway, click on the Rafflecopter above to leave your comment. If you choose not to enter, or if the giveaway has ended, please share your favorite mantra in a comment below.


Hope for healing after blood clots is a gift that you all have access to right now. Find out how I did it, and how you can too.


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.

Living with Antiphospholipid Syndrome

In 2012, I experienced a pain in behind my left knee that felt like someone put my skin and muscles in a vice-grip. I thought it was the recurrence of a running injury, and I decided to rest for the weekend. I soon experienced pain in my side that made it hard to breathe and impossible to lay down flat to sleep. It felt like the air was being slowly, but surely sucked from my lungs as more time passed. At the insistence of my primary care physician, I went to the emergency room, where I was diagnosed with a blood clot in my leg (deep vein thrombosis or DVT) and a life-threatening blood clot in my lung (pulmonary embolism or PE). I was admitted to the intensive care unit, where I stayed for several days as doctors worked to stabilize my situation and waited to see what would happen. When I eventually went home, I faced an extended recovery period that was unlike anything I ever expected.

In a lot of ways, blood clots were just the beginning for me. Shortly after I was diagnosed with DVT and PE, I was also diagnosed with antiphospholipid syndrome, or APS. It is an autoimmune condition in which your blood clots abnormally because your body mistakenly produces antibodies that attack phospholipids, a type of fat that plays a key role in clotting. APS – and to a lesser extent hormonal birth control – was to blame for my blood clots.

It was early June, and since June is APS Awareness Month, my internet searches revealed quite a lot of information about this disease, although it still seems like there is still more to learn. APS affects women much more than it does men, and not a lot is known about how a person acquires it. It is believed to be triggered by an environmental factor, such as an infection in an individual with a genetic makeup that makes him or her more susceptible to the disease, or from an autoimmune condition, like lupus or Sjogren’s syndrome.

Doctors don’t know why I have APS, or why it triggered such extensive clotting in my body. Some people with APS do not develop blood clots at all, however, antiphospholipid antibodies are present in 15 – 20% of all cases of DVT, and in one-third of new strokes occurring in people under the 50 years old (Source). In women, antiphospholipid antibodies can be a major cause of recurrent miscarriages and pregnancy complications. APS can also lead to numerological symptoms like chronic headaches and migraines, heart disease, and bleeding as a result of low platelets, which is another problem that I have encountered. In very rare cases, excessive clotting can lead to widespread organ failure and what is known as catastrophic APS, or CAPS. There is no cure for APS to date, and even though the antibodies can go into remission, the disease never goes away.

I don’t often think of myself as living with a chronic, or long-term disease, but in reality, that is what I am doing. I am fortunate that APS has not caused any additional problems for me, but there are ongoing concerns about my blood’s increased tendency to clot. As a result, my treatment involves taking anticoagulants, or blood thinners, for the foreseeable future, along with some other supplements to maintain the health of my blood, including folic acid, vitamin k, and iron. I also take aspirin, an antiplatelet, to help prevent stroke. I take the blood thinner warfarin, which is the only suitable treatment for me at this time, so I have to get my blood’s PT/INR monitored regularly through vein draws at my doctor’s office to make sure my medication is working properly. Depending on how I am doing, I could have my PT/INR monitored weekly, or every few weeks, it just varies. One thing is for certain though, with warfarin, I can never stop monitoring my blood to ensure its effectiveness, and my safety.

Antiphospholipid syndrome, and blood clots, have changed my life in a lot of ways. I go to more doctor’s appointments and manage my treatment to the best of my ability, which can be time consuming. Managing APS is often the same as managing my future risk for blood clots. I need to take my medication as prescribed and stay in communication with my healthcare team about any changes in my body, or any new concerns I have. I need to talk to my doctors and take precautions if I have surgery or am hospitalized, plan a pregnancy, or become pregnant. I need to remain vigilant for signs and symptoms of blood clots, stroke, and heart disease, and try to make or maintain the lifestyle changes that promote health and happiness, such as eating well, hydrating well, exercising on a regular basis, and making time to de-stress and relax.

Living with APS can also be challenging emotionally, and there are times when I struggle with that more than the physical care I undergo. I sometimes worry about the long-term repercussions of having this disease, and wonder what, if anything, might happen next. Will I wake up one day and have a stroke? Will my heart fail me? Will APS lead to another complication that is not so manageable? I wonder why I got APS in the first place, and I wonder if I could have done something to prevent it, before it led to life-threatening blood clots. It can be hard to overcome these thoughts, and they can bring me down, especially when I am overwhelmed and facing stressful situations, or when I have concerns about something my body might be trying to tell me.

I manage my feelings about living with APS in two ways. One, I have an excellent medical team, including a hematologist, who manages my ongoing care. I get blood work done about every three months to monitor for additional problems, or concerns. I see my doctors regularly for follow-up appointments, and I do not hesitate to call if I have a problem in-between those appointments.

Second, I try to be positive about what I have been through, and where I am going. APS is different for everyone, just like blood clots, and my experience will not be the same as the next person’s experience. If DVT and PE are the worst complications I experience as a result of antiphospholipid syndrome, I know that I have already survived the worst. I continue to hope that perhaps the worst really has come and gone, and each year that I do not have another complication, my hope continues to grow.

The most important thing for me to remember is that although I have an illness that will never go away, I can still live a happy, healthy life. If you have been diagnosed with APS, you need to understand this too. APS is serious, and it is scary. An APS diagnosis can feel like the end of your life, and yes, it can lead to some serious consequences. There is no cure now, however, APS is manageable and treatable in most instances. Make sure you have a specialized medical team, or doctor, and make sure you learn as much as you can about antiphospholipid syndrome. Take care of yourself to the best of your ability, and if you’re struggling to process your diagnosis or treatment, talk to a professional who can provide you with strategies and coping tools for managing chronic illness.

Where to Go for More Information

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

 

 


Reader Writes In: Do you have antiphospholipid syndrome or another clotting condition? Share your story in the comments below.


Read more about antiphospholipid syndrome on my blog.


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.

Hope for Healing After Blood Clots

I have talked about hope for healing since I first started writing this blog, Blood Clot Recovery Network. I also talk a lot about not being alone during recovery from blood clots. It seems that these thoughts have always been a part of this space, but honestly, I didn’t have hope that I would heal when I started this blog, and I was entirely alone. Not many people were talking about blood clot recovery and if they were, I hadn’t found them yet. Still, I couldn’t get these words out of my head, and they became a founding focus of the work that I do here. I said them all the time – out loud and in my writing – perhaps believing that if I said them enough times, they would in fact become truth.

Throughout my personal recovery, I often heard, “You’re so positive,” and “You’re handling this so well.” In reality, my world was falling apart. My job, my relationships, my health, and my self-esteem where all in jeopardy, and there was not a whole lot that I could do about it. It was all out of my control. I don’t routinely consider myself positive – because I am not happy and outgoing all of the time – but most people would consider me an optimist. What I realized after I healed from my blood clots was that even though I wasn’t happy – and I certainly wasn’t optimistic – I was always hopeful for what the future held. I never stopped believing that better days were coming. I realized that I didn’t have to be happy to be positive. In fact, I was downright distraught over my situation. Having hope, though, even when I was hurting inside, was a positive way to handle a difficult situation. Looking back, I have handled most difficult situations in my life by remaining hopeful for a better future.

From where I am today, the words “there is hope for healing” make more sense than ever before. Without my blood clot experience, I would not be where I am today. Now, I am not sorry that my blood clot happened to me, but it has taken me years to understand that, and it wasn’t an easy conclusion to come to. After all, it’s incredibly difficult to be grateful for something that almost ended my life and caused many years of hardship and heartache.

Despite all the pain I went through, I still choose gratitude for my situation.

Without my blood clot, I would not have had the chance to share my story, and with it, to share life-saving information about blood clots. I would not have the opportunity to meet all of you. Without my blood clot, I would not be able to pursue my passions as a writer and as a communications professional. I would not have the career I do, or the opportunity to give back to the community that has helped me heal. Ultimately, without my blood clot, I would not be able to share hope for healing with the people, who find themselves as alone as I felt when I was recovering from blood clots. I am grateful for what happened to me, because of where I am today, and because I can work each day to make a difference in the lives of other people who are suffering and hurting.

Gratitude, though, didn’t happen overnight, and it doesn’t make everything effortless, either. I still struggle to this day from time to time. I wish I didn’t have to deal with the long-term consequences of a serious health condition. I still have anxieties and fears that will always be present to some degree. What if my blood thinner doesn’t work? What if I have another blood clot? What if a bigger, scarier health crisis happens to me that I am unprepared for? Those thoughts are still present in my mind from time to time, but I have hope that I can handle whatever comes my way, because I have already handled this.

Gratitude for my experiences took years to happen, and it was very much a part of my healing process. In the beginning, I hated what happened to me. I was angry. I thought the pain would never, ever end. I wondered “why?” for years, before something finally shifted in my mind.

That shift was towards hope. I began thinking about what was ahead, not behind, for me. I began to hope that there was something out there for me. I began to hope that the pain and suffering I was experiencing was not my final destination. I stopped asking “why,”and I started hoping for a different outcome. In time, why didn’t matter so much anymore. How began to matter more. How was I going to feel better? How was I going to deal with it if I didn’t feel better? And ultimately, how was I going to take what I went through and make a difference?

I didn’t know how, nor did I have an answer to any of my questions, but I started to have hope that I would find the answers, or perhaps that the answers would find me.

To my complete amazement, things started to turn around, for the better. I didn’t believe it at first (it was too good to be true). As I built this space and this blog, I started to realize that I was not alone. I received countless messages from people who said they were going through the exact same things that I was. People began sharing their pain, and their heartaches with me. People also shared their successes and progress with me. People started telling me that they hoped because I had hope. They said because of me and my experiences, they didn’t give up.

I began to see how, and then one day I understood why.

It became immediately clear to me why I went through what I did: I was meant to make a difference in the lives of people who were suffering with blood clots as I had. The more I gave, the more I received in return. The cycle of hope and healing has unveiled some unbelievable outcomes for not only myself, but for many of you as well. I know because you tell me each and every day how something I have written, something you read in the BCRN Facebook Group, or on the BCRN Facebook Page, has made a difference for you. Time and time again, you have told me that the stories of hope and healing have cleared the path for these same gifts in your own lives.

Hope and healing from blood clots can be yours, and you do not have to suffer in silence, and alone. Honor where you have come from, and what you have been through, because you have been through a lot. Your body may be broken, but it is strong. Your mind may be devastated, but it is resilient. Be kind to yourself. Love yourself. Love your body because you’re still here, and it’s still healing. Healing is a process, it takes time, and it must be respected.

Have hope for the future and what will be. Have hope for better days, less pain, clarity, confidence, dreams come true, and yes, have hope for healing. Have hope because you are a valuable individual, who has something to give and get from this world. Hope is a gift that you all have access to right now, in this very moment, simply by changing the course of your thoughts.

If you can’t hope for yourself, I hope for you. I hope for better days ahead. I hope for healing, and I hope that you will be reminded that you are not alone on this journey.

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

 

 


Reader Writes In: How have you found hope for healing after your blood clot? What words of encouragement can you share with others?


A special message for you: That’s Called Hope


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.