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.

Three Years of Recovery from a Blood Clot

Three Year Recovery Cover

Three years ago, my life changed forever in ways that I could have never of imagined before that day. I had just kicked off a new marathon training season by running about two miles with my best friend and although I was slightly discouraged (my knee hurt again and I was out of shape), I was looking forward to what was going to be a great season.

I stumbled through the weekend, my supposed-knee injury getting worse by the minute. I had no idea anything was wrong besides overdoing it on my run Saturday. I didn’t know the symptoms of DVT and PE, even though I had heard of both before. By Sunday afternoon, I couldn’t speak in full sentences, couldn’t lay flat and couldn’t walk. By late Sunday night, I was in the ICU of the hospital with an extensive DVT behind my left knee and a PE in my left lung. I was lucky to be alive as it was and nowhere near stable. I was in the worst pain I had ever experienced in my life, I was scared and I had no idea what was happening.

In the coming days, I was diagnosed with antiphospholipid syndrome, an autoimmune blood clotting condition, and eventually placed on blood thinners that were injected into my stomach. I left the hospital with an oxygen tank and a wheelchair. In the coming weeks and then months, I lost my job, many friends, what remained of my self-confidence and any hope I had that things would get better. My relationships with the people that mattered most, mainly my husband, became strained, and I hated myself and my body that had carried me through countless half marathons and physical accomplishments for what it did to me. I sank into a deep depression, uncertain of the future and uncertain that I even wanted to live if this was how the future was going to be. Physically, everything hurt and I was making slower than slow progress; mentally I was incapable of finding any hope in my situation and emotionally I was a shell of the person I had once been. In my eyes, I was unrecognizable. And, I never, ever thought things would change.

And I was wrong. I have come long way in three years of recovery and in the beginning, I thought nothing would ever change. I write this post so that you too may know there is hope for recovery and while we all must adjust to a new normal, that doesn’t mean we cannot make progress, heal, find happiness and become accustomed to the changes we have faced.

Physically

Out of the woods and into…another woods. Critical Care Becomes Longterm Care.

At three years, I consider myself physically healed, for the most part. In the beginning and for the first six months of recovery, I vividly remember being in constant pain. My leg hurt, my lung hurt and it hurt to do anything. I begged for someone to chop off my leg (I was serious) because it hurt so bad and I could not fathom any relief. I cried all the time as a result of the pain. It was the worst pain I have ever felt in my life, and I never hope to feel it again.

Physically What Has Changed: I am no longer on oxygen and I no longer need a wheelchair, either. The pain in my leg is all but gone on most days, although I feel like I deal with more overall fatigue and pain. I do not have chest pain anymore and if I did, it would concern me enough to visit the ER. My leg still swells and compression stockings are part of my everyday wear (although I have been wearing them about three days a week lately with my doctor’s knowledge). The severe purple and brown discoloration in my leg has decreased immensely, much to my surprise. I get my INR checked via blood draws every 6-8 weeks, compared to twice a week in the beginning. Day to day, I do not get fatigued as easily (for example, walking up the stairs), but I do notice when I get fatigued, it lasts longer and is harder for me to get out of, even with rest. I can sleep for 12 hours and still be exhausted. I take warfarin, aspirin, vitamin k, folic acid, synthroid and progestin-only oral contraceptives, all under advisement of my doctor. My menstrual cycles are incredibly heavy (which my doctor believes is due to my birth control and blood thinner), and I have painful side effects that pretty much keep me sidelined for the duration of my cycle, which is unpredictable in length. I’m not as sensitive to touch as I was in the beginning, and I once again enjoy physical affection and a healthy and regular sex life with my husband. The blood clot in my lung is gone and my lung function has retuned to normal – I am out of shape. I walked a slow 5K (3.1 miles) mid-May and I was able to do so comfortably, without any shortness of breathe or long recovery period. I understand more than ever the importance of movement and blood flow, and I am fortunate enough to have a standing/sitting desk at work so I move up and down throughout the day even when I can’t get away from my desk to take a walk.

Physically What Hasn’t Changed: Antiphospholipid syndrome is, at this time, a lifelong disease and it requires constant monitoring that I have worked into my regular routine. I get regular blood draws, visit my doctor about every three months and see some other doctor (endocrinologist, OBGYN, dentist, eye doctor, etc.) every month. The doctor appointments feel more normal as I have entered a non-critical state of my care and do not require constant monitoring. I’m still not back to running (or exercising) regularly, but I have my sites set on training for a half marathon next spring (did I just say that?!). I have leg swelling from time to time, especially at the end of the day; my left (DVT) leg is slightly larger than my right leg and my clot has calcified behind my left knee.

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Lifestyle

Don’t sweat the small stuff…because it is really the big stuff!

Three years ago I lost my new job as a 9-1-1 Dispatcher three months after my PE, and I was completely devastated. I had worked for two long years to get the job, during which time I lost my Mom, my biggest supporter, and I was certain starting a new career was the start of a new life for me. I knew Mom would be proud of me, and I was proud of me too, for the first time in a long time. While I tried my hardest, I just could not learn a new job (especially an intense and stressful one) while also recovering from a PE. I had setback after setback in my recovery, including pleurisy and extreme anxiety, which greatly impaired my decision-making and rationing skills. The medications I was on greatly impacted my ability to sleep, concentrate and remember things. In the end, it just didn’t work out. And, I sank into the worst depression I have ever encountered in my life. I could not see a way out, there was none.

What Has Changed in My Lifestyle: I now have a full-time job back in the non-profit field doing work I succeed at. I never thought that would happen again. It took me 16 months to find full-time employment and the experience of being unemployed and kicked down at every turn was really damaging. Financial instability was the worst. I am working through the damage done to my self-esteem and self-confidence very slowly. It is hard for me to trust not only myself, but also people I do not already know. I am healing, though. I no longer run half marathons or lift weights or visit the gym. I just can’t get back into running since my PE. I prefer to be outside more and choose to take a walk or sit on the porch rather than go to a movie. Nature is more meaningful to me now, and I appreciate things like the park, sunsets, the ocean and the woods more. I crave being near natural things. I dress up – a lot more. Wearing colorful clothing is important to me.

What Hasn’t Changed in My Lifestyle: My diet hasn’t changed tremendously. While total elimination has not worked for me, I try to limit the amount of grains, dairy and sugar I eat. I prefer to eat as close to paleo as I can, but do not follow it exclusively. I still eat regular amounts of vitamin k rich vegetables, I eat cranberries and I drink alcohol in moderation.

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Psychologically and Emotionally

Just because it’s hardly talked about, doesn’t mean it doesn’t exist. The psychological trauma of DVT and PE is real. 

The psychological and emotional impact of a DVT and PE and recovery from these events is the one thing I am not fully prepared to talk about. I am still working through this aspect of recovery, and it still has a strong influence over my life. Talking about it helps. Connecting with others helps. And, because of those things, I will do my best to convey my struggles and progress with you.

What Has Changed Psychologically and Emotionally: Where to begin? It seems like everything has changed for me on this front. I believe that because I am still processing what happened to me, I suffer from a high level of anxiety and fear on a regular basis. I am very quick to get angry and very quick to shut down in the face of personal adversity. My hypervigilance about suffering from another clot has decreased in regards to myself, but I am convinced that everyone around me who has a leg pain or trouble breathing has a DVT or PE, and I recommend they all go to the ER. There is no “could be” for me, it “is” a blood clot. I’ve identified some pretty specific triggers that either make me angry, confrontational or sad and they include, “That’s a bummer,” “This thing/time/place/etc. is different,” and “It’s not that bad.” Because it’s not a bummer (it’s so much more than that), this is no different and it really is that bad in my experience, at least. I have discovered that I need support in being a source of hope, inspiration and information for so many other survivors, and I have discovered that I need to readily seek out that support. For as much anxiety as I have, some things just do not matter anymore. If you don’t like me, I’m okay with that. I have more consequential things to worry about now. I have developed an irrational fear of heights. I am fully aware I could (and I might) die at any second, but I continue living my life.

What Hasn’t Changed Psychologically and Emotionally: I continue to overcome difficult things in my life and persevere through tough times, but I do not embrace positivity, and I do not believe a positive outlook is the key to healing. I am realistic, honest and straightforward and with that, I move forward, but I am not necessarily a positive person all the time.

Recovery is a process. One with a clearly defined beginning and end named then and now. Then being my life before my PE and now being my life since then. There is no middle ground. Time is crucial and matters greatly to me. There is no time to waste. Recovery is difficult, painful, lonely and confusing, but there is hope. Hope that we do not remain the same and as we heal, no matter how little, we progress through the process of time.

There is hope for healing and you are not alone,

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The Power of HealtheVoices15

HealtheVoices 2015

HealtheVoices 2015, Photo Courtesy of Janssen

I started Blood Clot Recovery Network nearly three years ago after suffering from a DVT and subsequent PE that nearly ended my life. My doctors told me I was lucky to be alive. My family told me they loved me and most of my friends told me nothing except, “Get well soon.” I told myself that for all intents and purposes, my life might as well be over and it would never ever get any better than it was during those initial weeks and months of recovery. Everything hurt, everything was hard, I couldn’t do anything that I loved (like run) and to top it all off, no one understood what I was going through. No one understood me. As a result of my own frustration, fear, panic and isolation, I vowed to find a way to let others going through the same situation know they were not alone. And, I knew there had to be other people like me.

Little did I know, for all the success I had gained in helping others, I was becoming very isolated. It’s difficult to help others through recovery when I am still moving through it myself and managing a blog, a Facebook Page, Facebook Group, Twitter profile and countless messages (not to mention a full-time job and family) is time-consuming, often draining and sometimes heartbreaking. At times, it is like reliving the horror of what happened to me because I can relate to so many of you. I can’t move on completely, I won’t stop talking about it and it keeps me up at night sometimes. Still, I knew I didn’t want to give up, but I also felt like I had no tools to understand and process what I was feeling.

So, I stepped – uncomfortably at best and only with the encouragement of a waiter who was holding the most beautiful shrimp cocktail I have ever seen in my life – into a room full of other people I had never met, in a city I had never been to (naturally, right?!) and squeaked, “Hi, I’m Sara and I had a blood clot, what’s wrong with you?” Or, something like that. It was awkward, it was strange and it pushed me out of my shell, which is actually pretty prevailing in person. And, I never before had the chance to be Blood Clot Recovery Network in person. It was awkward, it was strange and it was uncomfortable, at best. What was I doing? I suddenly knew nothing about blood clots and was having trouble sharing my story out loud. What was I doing, again?

I was attending HealtheVoices15 Conference, hosted by Janssen and Everyday Health, which is an event that was created to bring together online health advocates – when did I become that in person – to discuss, share, learn and inspire one another to continue doing what we do every single day. And, when you think about it, what we do is pretty big, as Clare Martorana Executive Vice President at Everyday Health demonstrated in her opening speech during dinner. We bridge the gap between doctors visits, put health headlines into perspective, create patient advocates, help doctors give their patients better care, help caregivers as well as patients and connect with patients 24/7 – and we do it all with humor and for love, not money.

It hit me like a ton of bricks when Clare mentioned BCRN as an example of bridging the gap between doctors visits during her address. Maybe what I do really does matter. Actually, it hit me like 72 pairs of eyes around the room staring at me. I went to bed that night feeling grateful, content and excited for what was to come the rest of the weekend.

After breakfast Saturday morning, the event kicked off with an empowering and hysterical lecture (although one could hardly call it that) by ZDogg MD. Okay, if you have never heard of him (I hadn’t) you need to find out who he is now. In short, you will laugh – a lot. In length, Dr. Z (a.k.a ZDogg MD) is a doctor turned rapper who is changing the way we are thinking about medicine and patient care at Turntable Health in Las Vegas, Nevada, of which he is the founder. Turntable Health is knocking down barriers that make no sense by changing the way we treat patients by doing things for them, not to them. They’re scrapping traditional medicine to take care of the patients and make people say wow. You will, trust me. And, again, when ZDogg – diagnosed with a blood clotting disorder himself – recognized BCRN as an essential resource for patients recovering from blood clots or treatment (don’t worry, I tried to smile and waved uncomfortably back to him on stage this time), I suddenly knew I was making a difference. I was making a difference in the lives of people I didn’t even know about. Affirmation is a powerful thing. Community and strength in numbers are an even more powerful things. Putting people with aligned visions to make a difference in the lives of others in the exact same room is the most powerful thing.

I stopped being afraid after ZDogg’s session. I started talking to people. I started telling my story, for real, without barriers. I felt safe and among friends. People who got me, didn’t expect anything out of me and for once in my life, understood just what I meant when I said I needed a minute, needed to sit down, prop my leg up, stand up or take a walk around. In fact, maybe they didn’t even understand exactly why, but it didn’t matter. They were like me. They were hurting, they were broken and they were unimaginably unwavering in their battle to survive, prevail and make a difference in the lives of many. I met and shared an immediate connection with Jill of Get up and Get Moving; Beth of Invasive Duct Tales, Brian of A Marine and HIV as well as Debbe of Atrial Fibrillation Support and Melanie of StopAfib.org, who also represented the cardiovascular community with me.

Mellanie, Me, Debbie and Melissa

Mellanie, Me, Debbe and Mellisa

After I connected, I decided to learn as much as possible. My favorite small-group discussions were with Jenni of Chronic Babe (again, if you don’t know who she is, you need to) who has made a life and a business of surviving and thriving despite chronic illness and pain and is helping others understand how to do the same. She’s funny too and extremely empowering when she speaks. From there, I learned about compassion fatigue (emotional burnout of patient advocates, physicians and caregivers) with Dr. Brian Koffman and Six Until Me Blogger Kerri Sparling. I learned about the cost of caring (fatigue, depression and overworking to name just a few) and I learned that I am enough.

And, at the end of it all, I jumped on a [subway] train from NJ to NYC and made my way to Central Park, somewhere I have always wanted to go. Three years ago, I didn’t want to leave my house. Three years ago, I would have never of navigated the subway system by myself. Two weeks ago, I did. It was terrifying, it was beautiful, it was real and it was absolutely invigorating.

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South Central Park, NYC

There’s so much more to come about #HealththeVoices15. So much more. What I really want to say is I am extremely grateful for the opportunity to attend this conference. Janssen paid for all of my expenses, including travel, and took care of everything I needed while I was there. I was nervous about attending a conference hosted by a pharmaceutical company, mostly because I did not know what to expect or what was expected of me. This conference had absolutely nothing to do with medication or with pharmaceuticals at all. This conference had to do with a progressive and utterly compassionate company that chose to bring health advocates together, in the same room, to discuss health topics and diseases that are effecting lives on a broad scale. This conference was about recognizing and then addressing the need to provide online patients advocates with support, resources and connections needed to continue making a difference in the lives of patients. I always knew I wasn’t alone. What I didn’t know was that I was empowered to continue making a difference. I left HealtheVoices completely energized to keep doing what I do everyday – make a difference in the lives of those suffering from DVT and PE. I left HealtheVoices with a purpose, validation and the realization that I do matter and my work here matters – a lot.

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There is hope for healing and you are not alone,

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Dealing with Depression

Ever since you’ve had your blood clot, you’ve been feeling a little down. Maybe you don’t enjoy the activities you once did (either because you can’t do them or don’t feel up to it), you feel alone, are easily discouraged, emotionally charged and cry or react at the drop of a hat – literally (don’t worry, I cried for several hours over spilling spaghetti sauce in the kitchen once shortly after my PE). Maybe you feel hopeless, like no one cares and even wonder if life’s going to be like this from now on, why not give up? It hurts to move, get up, lie down or even breathe. No wonder you’re depressed when you spell it all out, right? Dealing with depression after a blood clot is not uncommon, yet, it is uncommonly talked about.

Experiencing a DVT or PE, brings a lot to cope with, both physically and emotionally. Clot Connect, an organization seeking to increase knowledge of blood clots, clotting disorders and anticoagulation by providing education and support resources for patients and health care professionals states, “It is normal to feel shock, anxiety and fear following the diagnosis of a blood clot”  on their FAQ page. Let that sink it for a moment before reading on. You are normal for feeling this way.

In fact, it has been noted that high levels of anxiety, depression and psychological stress are reported among patients with DVT and/or PE, but very little research has been done regarding the psychological implications of surviving a DVT and/or PE. The anxiety, fear and depression that can be quite common after a blood clot can be attributed to many factors including, but not limited to the fact that a patient survived a life-threatening event, limited mobility and daily function, the lifestyle impact of being placed on a long-term blood thinner, decrease in quality of life, and fear of a clot returning (which can happen). There are few resources available regarding the emotional and psychological concerns that accompany a PE and DVT. I have included the ones I know of here:

The National Center for Biotechnology (NCBI) information also notes that “although thrombosis is rare in the young, [it] can cause severe psychological distress that influences the quality of life and the coping capacities of patients [Source].”

If you are feeling depressed, anxious, scared or unsure about all that has happened to you during and since your DVT and/or PE, here are my top tips for dealing with depression.

Tips to Help You Recover From the Emotional Effects of DVT and PE
  • Remember you are not alone. Blood clots are a common medical condition. It is estimated that 900,000 people in the United States develop DVT and PE each year [Source].
  • Talk to your doctor.  He or she may be able to direct you to other resources or provide anti-anxiety or anti-depressants. Even if you do not think your primary physician will understand your concerns about depression, still inform him or her about your feelings. It may also be beneficial to seek out a referral to a counselor or psychologist as an additional support for what you are going through. Do not be afraid to ask for help!
  • Understand post-thrombotic syndrome and do what you can to prevent it.  One of the long-term, and potentially upsetting, effects of DVT is post-thrombotic syndrome (PTS) and it is not in your head. Find out more about PTS, including the emotional effects and how to help prevent it.
  • Seek out a support group. Finding support is important when dealing with recovery from a blood clot. While some in-person support groups do exist (ask your doctor if there are any near you), they are rare. You can join BCRN’s private support group on Facebook. Also, visit here to find even more support groups.
  • Learn about your condition. What you went through was a significant and even life-changing event. Learning about what happened to you through reading, relating to others and talking to your doctor and others can help you to feel empowered, calm and knowledgeable about what did happen and what your recovery might entail. Don’t know where to start? The list of resources on the left-hand column of this page is a great place!
  • Know that your condition is treatable and manageable. Be confident in your treatment plan by discussing it with your doctor and any trusted friends or family members you may have. Connect with other survivors who have been where you are now.
  • Write your feelings down. A daily or weekly journal of how you felt, what you did, progress you made or challenges you faced can help you to see how far you really have come over time. Writing, even if it is only a few sentences a day to express a particular emotion or event, is very helpful in releasing your feelings and giving value to them. Consider writing down and sharing your entire blood clot story. What you feel is important and sometimes it just feels good to get it out of your head.
  • Have patience with yourself. Recovery takes a long time and it’s not easy. Know what you are okay, you are doing what you can and you are right where you need to be. Something as simple as walking to the bathroom or making a sandwich is enough for one day. If you are struggling to get back to where you were pre-blood clot physically and emotionally, remember it takes time and it is different for everyone.
  • Be kind to yourself. You are loved. You have been though a lot and your body and mind have been faced with a catastrophic incident. It is okay to feel the way you do from time to time and it will take some time to adjust.

Please remember, if you are facing thoughts of self-harm or suicide, please call 911 or seek other help (such as a hospital emergency room or doctor’s care) immediately.

If you are thinking of suicide, The National Suicide Prevention Lifeline is a 24-hour, toll-free, confidential suicide prevention hotline available to anyone in suicidal crisis or emotional distress.

Remember, even if it seems hopeless, suicide is not the answer.

Share your story. Have you felt depressed since your blood clot? How have you dealt with depression?

There is hope for healing and you are not alone,

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How Long Does it Take to Recover from a PE?

how long does it take to recovery from a PE cover

I get asked a lot, how long does it take to recover from a PE? Most individuals that I have talked to about recovery from a pulmonary embolism want to know, how long they can expect to be healing. The short, uncomplicated answer is recovery is different for everyone. Keep that in mind. The extent of the damage to your body and other organs, underlying health issues, additional diagnosis and potential or discovered clotting disorders can all factor in to answer how long does it take to recover from a PE?

The longer, but still less complicated answer to how long does it take to recover from a PE depends on how your body heals. Contrary to common belief, blood thinners in fact do not dissolve blood clots. Only the body can dissolve a blood clot and in some cases, the blood clot does not dissolve and will not dissolve. As the blood thins (for example when on a blood thinner) and travels throughout the veins, it actually hits the clot and can eventually break away enough to flow by it in some cases. The body can also accommodate for the damaged area by creating scar tissue and rerouting blood flow through or around the clot. While a blood clot may no longer be at risk for breaking off and causing additional damage once turned to scar tissue, it is still there and is important to note when speaking of recovery. Your blood clot may never dissolve. Knowing this early on saved me a lot of worry and disbelief later in my treatment. When my DVT didn’t completely dissolve, I wasn’t left screaming or in tears wondering, “What do you mean?! No one told me that!”

I was diagnosed with a DVT in my left leg in June 2012. The clot broke free from my calf, right behind the knee, traveled through my heart and lodged into my left lung. I was in the Cardiac ICU for six days and the hospital for ten days total. It came out of nowhere and almost ended my life before I turned 30. My first conscious, non-drug induced, rational question (my very first question was ‘Can I run this Saturday?’) to my doctor after being released from the hospital was, “How long does it take to recover from a PE?” Followed quickly by “How long do I have to wear these compression stockings?”

He answered quickly to the latter “for about six months or until I tell you to stop.”

I wasn’t prepared then for the answer to my first question, how long does it take to recover from a PE? “Recovery from a PE generally takes about one to two years.”

Recovery from a PE takes one to two years.

Not to be the bearer of bad news (although I do have a pessimistic nature to be honest), I think more patients need to be told this – and more doctors need to realize it.

Length of treatment can vary from a few months to long-term over many years and is determined by factors your doctor should discuss with you. If he or she does not discuss length of treatment with you or to your satisfaction, ask for clarification until you receive a satisfactory answer!

At least 3-6 months of blood thinners are typically recommended, with a preference for long-term or often lifelong treatment in patients with unprovoked (occurs out of the blue, without any clear triggering factor such as surgery, pregnancy, injury, etc.) clots that occur in the pelvis, thigh, and/or behind knee (DVT) or a PE.

Potential Factors of a Higher Risk for Future Clots (ClotConnect.org)
  1. Gender (men have a higher risk for recurrence than women)
  2. Presence of a strong clotting disorder
  3. Obesity
  4. Significant chronic leg swelling (post thrombotic syndrome)
  5. Positive D-dimer blood test obtained while on blood thinners
  6. Positive D-dimer blood test obtained 4 weeks after having come off blood thinners
  7. A lot of left-over (residual) clot on follow-up Doppler ultrasound examination of the leg.
  8. Strong family history of unprovoked DVT or PE.
  9. In addition, patients who had a PE more likely have a PE as a recurrence and have a higher risk of dying from the recurrent clot, compared to patients who “only” had a DVT.

A PE wreaks havoc on the body at the vascular level and creates micro-damage we can’t even always see – not to mention what we can and do see. In my case, my clot traveled through my veins, right lung and heart before lodging in the lobe of my lower left lung – that creates a lot of potential for damage to arterial pathways that just take time to heal. Even 14 months out from my hospitalization, I still have days where extreme fatigue, anxiety, pain, depression and listlessness consume me to the point of interfering with normal life. I imagine this is all still a part of recovery and I may eventually have to take steps to learn to manage these feelings in my everyday life. The emotional and psychological effects of a PE are all-too real, all-too debilitating and all-too ignored.

And while it may take you upwards of a year or more to start to feeling physically normal and participate in activities again, many people, including myself, are diagnosed with blood clotting conditions (such as antiphospholipid syndrome as in my case) which require lifelong monitoring and medication to try to prevent a recurrence of blood clots. While I consider myself far into recovery after a year or more, I will always have the possibility of another clot and the lifelong treatments that come with that. For me personally, a PE was not just something I got, healed from and now I can go about my life without having to worry about it on a daily basis, although that is the case for some patients.

So in answer to how long does it take to recover from a PE? One to two years, depending on your specific situation. Be sure to discuss recovery and possible setbacks with your doctor in order to be prepared to face what can be a long and seemingly overwhelming prognosis.

Share your story. Did your doctor answer how long does it take to recover from a PE? How long have you been recovering? Does the possibility of a long recovery scare you? Was your recovery shorter or longer than 1-2 years?

There is hope for healing and you are not alone,

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Before and Now – One Year After my Pulmonary Embolism

“Even though I didn’t know you before, I think you sound a lot more normal now,” she said to me right before hanging up the phone. I had just finished reminding her that this was my one year anniversary of being admitted into the hospital with a DVT and PE that nearly killed me at this time last year. I knew she wanted to say, “You sound alive,” or something similarly shocking. Stacey, my nurse, has been an essential part of my recovery over the last year and I generally speak to her on a weekly basis about my INR and what dosages of medications to take. There was a time – and not that long ago – when both she and my hematologist questioned my ability to fully recovery, I know. The words weren’t said, but I watched them both desperately search for answers regarding my seemingly diminished mental capacity, ability to remember squat and difficulty finding a job I could simply do. I spent many a hysterical phone call with Stacey from month to month and if she ever grew impatient or frustrated with telling me the same thing day after day when I would call to confirm because I couldn’t even remember to write it down in the first place, she never showed it.

It was moments after I hung up the phone that I realized there really was a before and now. Before my PE and now, after my PE. It got me thinking about something I saw floating around on Facebook –

before and after this

The last year of my life has been, in short, hell on Earth. I have been angry, sad, forgotten, alone, desperate, confused, alienated and unbelievably grief-stricken by the fact that while two in three people do not survive a pulmonary embolism, I am the one that is still here. Why? Why me? The emotional trauma and grief I have faced is second only to the physical pain I have been in for so long and while that has slowly, very slowly started to ease, I know the emotional effects of what I have endured are just beginning.

And this got me thinking even more. The people that I meet from here on out will never know the other me. The me before the PE. They will not know the girl that was more lighthearted, not afraid of pain and able to push through a lot before tossing in the towel, calling it quits and moving on to the next big thing. They won’t know the girl that used to hit the ground running – literally and figuratively – taking three steps forward to every two steps back. “Look on the bright side, life can only get better from here.”

No, they will know the woman that is fearful of every little ache, reserved in action and in thought, at times withdrawn and unable to put into words what used to come flowing so freely. They will know the woman that has and will do all she can to keep her head above water – forget moving forward or back, it’s simply standing upright (literally and figuratively) that matters now. “Everything is a threat, most people can’t be trusted and your own body is most definitely out to get you.” If it can go wrong it will and probably already did.

Because I will never be the same.

And that is not an easy thing to deal with – for anyone, no matter who you are. This changes you. I don’t think you can avoid it.

As I look back over the last year of my life, I realize I am recovering – slowly, but surely and there are parts of me that have healed leaps and bounds compared to where I was when discharged from the hospital. I can walk without a limp more days than not and I can yawn, cough, laugh or hiccup without doubling over in pain. I even ran two miles this past weekend – an accomplishment 363 days in the making.

And I know, in other respects, I have a long way to go. Emotionally, my wounds are still fresh and I am not ready to tackle them head on so I will remain fearful of every little ache, withdrawn and struggling with finding the words to accurately describe my feelings. Today, I will be grateful for the chance I have been given to live again and I will stand.

My hope is that through my experiences, I can help others get from where I was, to where I am to where I hope to be so that together, we can all begin to heal.

Share your story. How long ago did you suffer from a DVT/PE/Blood Clot? What has been your biggest challenge during recovery? How are you a different person now than you were before your incident?

There is hope for healing and you are not alone,

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