Roadmap to Health in 2015

roadmap to health 2015

For many of us, myself included, 2014 was a tough year healthwise. While it was nothing the year of my PE, I’ve faced some new challenges that were unexpected. I know many of you share in my struggle and still many more are battling the aftermath of a DVT and/or PE for the first time. You are not alone in your fight, as evidenced by the stories and people here – both those people who have shared their stories and those who are suffering quietly. Your journey may be one you take by yourself, but you are not alone in the obstacles, setbacks, hardships and even triumphs you encounter. We are all on the same type of journey, just taking different paths to get there.

Where is there, you wonder. For me, my journey is seemingly unending, but I am hoping to continue down a path that leads to optimal health and wellness for my individual body. I was diagnosed in 2012 with Antiphospholipid Syndrome, which is believed to be the main cause behind my DVT and subsequent PE. I take Coumadin/warfarin daily and probably will for the rest of my life as there is currently no cure for APS; and my risk of future clotting, including stroke, is too great to risk without medication at just 32 years old. Do I like that I take blood thinners now or forever? No, but it is the best course of treatment at this time. My journey includes continuing to work with my hematologist to ensure I am receiving the best care possible, regain control of my diet and start implementing a not only doable, but sustainable fitness plan back into my daily life.

Achieving ultimate health is like any other journey – full of hills, bumps, detours, closures and even spin-outs along the way. If we’re lucky (which, let’s face it, I’m not), we’ll avoid any major crashes along the way and have to deal with just the occasional stall or engine failure. I like to think of health as a journey and I would like to provide you with a Roadmap to Health in 2015.

Roadmap to A Healthy

Print it out, share it, bookmark it for future reference. Do whatever you can right now to take control of your health.

From me to you, have a very happy holiday season and beautiful New Year.

Reader Writes In. What is included in your Roadmap to Health in 2015? Share it in the comments below!

There is hope for healing and you are not alone,

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Thank you to the American Recall Center for providing this Infographic and the opportunity to include my own insight. Connect with ARC on Facebook today.

You Survived a Blood Clot…Now What?

 

When I suffered from a DVT and PE in May 2012, it was completely unexpected and unlike anything I had ever experienced before. I had never been ill, never been to the hospital or had surgery. I was not prepared for the physical pain and long process of recovery. I was especially not prepared for the emotional and psychological burden of such a traumatic event. Every aspect of my life was changed as a result of surviving a blood clot. But, now that I survived a blood clot, what was next? Here are a few things I have discovered during the recovery process that are important for recovering, healing and ultimately moving on with the gift of life we, as Survivors, have been given.

Do not let anyone tell you what you should or shouldn’t do.

The words should and should not have become a detrimental necessity of the English language so it seems. It’s toxic, it’s invasive and it seems we all do or say it to some extent. I know I am guilty of often thinking “I shouldn’t feel this way,” “You should find out about,” or “I should have.” What’s the big deal with shoulding, you ask? (Yes, I made up a word, just now). It’s a one-way fast-track guilt-trip seeded in self doubt, to say the least. By dwelling on our shortcomings and failures (which is what we do when we say should), we tend to not look for solutions or take the necessary steps for action to improve our situation.  Do not let anyone, including yourself, tell you what you should or should not be doing when it comes to your health. If you wish you would have  done something differently (for example, ask more questions from your doctor in the beginning), you may say “Next time I will” or “In the future I plan to” or “At my next appointment I will ask what this means for my overall health.” Not shoulding yourself will allow you to take steps that help you to ultimately feel better about yourself and your health. And when it comes to someone else and his or her treatment – you are not them and he or she is not you. We may face common issues or diagnoses’, but at the end of the day, only you and your medical team can decide what is right for you.

Find a medical team.

While I do believe that one doctor can make a difference – even save a life – I also believe it is important to have a medical team to treat your after surviving a blood clot. And, in reality, you probably already have a team forming. Treating a blood clot is not simple by any means and while your hematologist or general practitioner or vascular surgeon may be your main point of contact for follow-up care, keep a team of professionals at your disposal. This way, when something comes up (or goes wrong) you have a team of varied specialties and therefore hopefully talents) at your fingertips already.

Here is what my medical team currently looks like as an example. I have a hematologist who handled my case in the hospital. He is my primary contact for managing my blood, antiphospholipid syndrome, warfarin management and anything new that may pertain to my blood or ongoing condition. For everyday problems (or what I think are everyday problems (like a sore throat), I start by seeing my Primary Care Physician who is a DO. I regularly visit the outpatient lab at the hospital to have my blood drawn to check my INR levels. I also have a rheumatologist to handle any current or new autoimmune concerns (at the direction of my hematologist) and I have an endocrinologist to monitor what has been a lifelong thyroid condition. I also have a pharmacy that I use consistently and am comfortable asking the pharmacists there questions about over-the-counter or prescription interactions. Even though I do not see all of these specialists all of the time, they are there if I need them or have a concern. I have built a team I am confident relying on if I need something or have a concern.

Find and build a team of doctors you trust your health to. For a list of common specialists seen after a blood clotting incident, visit here.

Gather your resources.

Just like building a medical team is important, it is also important to have a pool of resources to help you through the recovery process. This could include things like books, websites, personal contacts and in-person or online support groups; not to mention things like assistance with food, housing, insurance, prescriptions and medical expenses. What people often do not understand is that the effects of a blood clot are devastating and often far-reaching.

When I suffered from a blood clot in 2012, I was not prepared for the fallout. I lost my job, my insurance, my income – everything – and I was not prepared for the financial, emotional, physical and emotional fallout. I already didn’t feel good and on top of it all – I lost it all. That is not something one can easily rebound from. I began gathering my resources from the beginning. I inquired about financial aid at the hospital (you would be surprised most people qualify for something), searched for prescription assistance programs, asked for help in searching for jobs, let my family help when they were able, cut the cable and phone bill, etc. Anything that I thought would make a difference in my situation and relieve the pressure of trying to live with a debilitating injury/illness, I did. Resources exist and yes, many are hard to obtain, but there are some out there. If you can’t buy food, visit a local food pantry or church. If you need help keeping a roof over your head, search for a housing assistance program in your area. If you can’t afford your medication, ask your doctor’s office if they have a social worker available to help you navigate the hurdles. This is not to say any of this is easy, but it is at least worth gathering what resources you can, when you can.

Build a support network.

I will be the first to tell you, people generally do not understand first, what a blood clot is and second, what the recovery is like. It is important to start building a support network early on. Searching for my own support during my recovery is how Blood Clot Recovery Network began. It is crucial that you reach out to other people who can relate to what you have been through – because they have been through it too. But, even if you are not comfortable reaching out to people you do not know, build a support network of people who care about you be it family, friends, fellow survivors and/or an online support group. You can join BCRN’s private Facebook group, or find more online support resources here. Having at least one other person to support you unconditionally in your recovery is important. If you don’t have that person in your life, please find support here, at BCRN.

Recognize your recovery is expansive. And listen to your body.

Recovery does not happen overnight – or sometimes even days, weeks or months after a PE and/or DVT. Physical recovery from a blood clot take anytime up to two years (or more or less, depending on the individual) and sometimes the emotional recovery from a blood clot can taken even longer. Physical and psychological complications can be long lasting and far-reaching. In the beginning of my recovery, I wanted to “get better” right away, and it was hard for me to understand why I didn’t feel better in a week or two – or even a month or six months or a year down the line. Recovery takes time. And your body is very good at telling you exactly what it needs – or does not need. Throughout your recovery, listen to your body. If you try to go back to work, walk around the block or go back to the gym and you are struggling with fatigue, more complications or pain – your body is probably telling you to rest. A DVT and especially a PE causes micro-damage, sometimes to organs like the heart or lungs,  that the body has to heal. Healing takes a tremendous amount of resources and energy from the body.

Put yourself first.

For the first time in maybe my whole life, I had to learn to put myself first during my recovery – and that was not easy to do. I had to say no to things like meeting up with friends for dinner, a phone call to catch-up, cooking, cleaning the house and running errands. I had to say no to things that made me unhappy or uncomfortable – including people who did not support me during my recovery. It was very hard to put myself first, but it was a necessity. You have to come first during your recovery. Learn to say no and if you have things that need to get done in a given time period, ask your support network for assistance or advice. As you begin to heal, you can start to do things that you used to do or take on more tasks, but in the beginning, don’t be afraid to say no, or yes, and focus on yourself.

Work on finding your new normal.

Everything changed after I survived a blood clot and finding my new normal is an adjustment I am still working on to this day. Even more so than adjusting to what is the new normal, though, is recognizing that things can no longer be the same as they were – because I am not the same person coming out of this survival as I was going in. I have faced more pain, fear, uncertainty and failure than I ever thought possible. I have survived something many people do not. I have to live with the burden of a lifelong and complicated illness that I am still unsure of what the outcome will be. Do I have to give up the life I loved and the things that made me happy? No, I do not believe I or anyone does, but I do have a new perspective on life that is different than the one I had before. I have different limits, different expectations, different fears and a new appreciation for the life I have now. A blood clot changes everything. Give yourself the time and patience you deserve to adjust to that fact.

Never, ever, ever give up.

There is hope for recovery. Just over two years out from my blood clot, I consider myself physically recovered although I still face complications from time to time and will always have to manage my medication and risks that come with that. I still face the emotional burden of what happened to me, but I am working on it little by little. I wanted to give up so many times during my recovery, but somehow, I always managed to hope for a better tomorrow. I am passing that hope on to you. You can recover. You can make improvements. You can find support and love. Find something you are passionate about and keep your sights on a goal. For me, if I can help one other person going through the struggle of recovery, I know my own struggle was worth it. Find what makes you happy, what drives you – your children, your family, your career, your pets, your love of music or art, your creativity, your friends – anything – and hang on to the hope that in that happiness, you will succeed.

There is hope for healing and you are not alone,

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Your Ongoing Care Specialist Guide

Facing recovery from a DVT and PE can be overwhelming, scary and very uncertain, to say the least. Which doctor should you see for what and when? There are so many options available and diagnosis, treatment and procedures vary greatly from one person to the other. Here is your Ongoing Care Specialist Guide from BCRN.

Primary Care Physician/Provider (PCP)

  • Role: The primary care physician is also your family doctor or main point of contact for most undiagnosed health concerns. He or she is the place where you often begin either to diagnose a problem or return for ongoing care. The care of a PCP is not limited by cause, organ system or diagnosis and may also refer you to a specialist. A PCP may be an MD (Medical Doctor), DO (Doctor of Medicine) or NP (Nurse Practitioner)
  • Benefit: Many patients continue visiting their PCP for medication management and regular INR testing. A trustworthy PCP is also beneficial to have as a starting point for any new medical concerns that may arise during your treatment.
  • Personal story: I credit my PCP with saving my life because he was immediately able to identify (via phone nonetheless) that the pain in my leg and the pain in my side as a DVT/PE and instruct me to go to the ER immediately. While I do not see him for my ongoing INR and warfarin management (because he was more comfortable with me seeing a specialist due to the complexity of my case), he is integral in my care and remains my main point of contact for everyday concerns and illnesses.
  • More: Find more information at the American Academy of Family Physicians.

Hematologist

  • Role: Hematology is the study of blood in health and disease. It includes problems with the red blood cells, white blood cells, platelets, blood vessels, bone marrow, lymph nodes, spleen, and the proteins involved in bleeding and clotting. A hematologist is a medical doctor who applies this specialized knowledge to treat patients with blood conditions. Most hematologists are also trained oncologists (specializes in treating people with cancer)
  • Benefit: Any person unsure of why he or she experienced a blood clot, should consult a hematologist for further testing of genetic and autoimmune clotting disorders. In addition, a hematologist can manage INR and medication such as warfarin as well as any underlying diseases of the blood.
  • Personal story: I was referred to a hematologist in the hospital and he has been my primary point of care for my DVT/PE recovery and management of antiphospholipid syndrome (APS), an autoimmune clotting condition, since then. 
  • More: For more information visit the American Society of Hematology

Coumadin (or Anticoagulation) Clinic

  • Role: The Anticoagulation Clinic is a service established to monitor and manage the medication(s) that you take to prevent blood clots (i.e. coumadin/warfarin). Physically, it is a specified location within a hospital or a medical office that is staffed mostly by pharmacists. The pharmacists, working in conjunction with your physician, will check your INR and adjust your dose of warfarin.
  • Benefit: The clinic was set up to be easily accessed to get your INR drawn and know your results immediately. It can eliminate having to make an appointment to see your doctor every time you have an INR check. It is more like a “quick-service” treatment than a full-fledged doctor appointment and should be used in-between doctor (and not as a substitute for) doctor visits.
  • Personal story: There is a Coumadin Clinic where I live, and I was given the option to have my warfarin monitored there, however, I chose not to. I achieve the same results by visiting the hospital walk-in lab who then directly communicates my results (within an hour or so) to my hematologist who then follows-up with me.
  • More: Ask your hematologist or PCP if there is a Coumadin Clinic near you and if it would be beneficial to your care.

Pulmonologist

  • Role: A pulmonologist, or pulmonary disease specialist, is a physician who possesses specialized knowledge and skill in the diagnosis and treatment of pulmonary (lung) conditions and diseases. Pulmonology is a subspecialty of Internal Medicine.
  • Benefit: A pulmonologist generally manages complex pulmonary problems stemming from emphysema, tuberculosis, asthma, complicated infections of the chest, the pulmonary complications of AIDS, injury, and complications of respiratory diagnostic and therapeutic procedures, which often could include a PE. If you have a PE and any underlying respiratory concerns, a pulmonologist may a good option for follow-up care.
  • Personal story: I was evaluated by a cardiologist in the hospital, but do not see him for ongoing care at this time.
  • More: For more information about pulmonology, visit the American College of Physicians.

Cardiologist

  • Role: A cardiologist is a doctor with special training and skill in finding, treating and preventing diseases of the heart and blood vessels.
  • Benefit: If you have survived a blood clot, you may also have damage to your heart and vessels/valves in the heart. A cardiologist is the best person to assess and provide ongoing treatment for any damage caused by a PE, including an enlarged heart, high blood pressure, pulmonary hypertension, etc.
  • Personal story: I was evaluated by a cardiologist in the hospital, but do not see him for ongoing care at this time.
  • More: For more information about cardiology, including inspirational patient stories, visit the American College of Cardiology.

Rheumatologist

  • Role: The role of the rheumatologist is to diagnose, treat and medically manage patients with arthritis and other rheumatic diseases, often including autoimmune diseases. These health problems affect the joints, muscles, bones and sometimes other internal organs (e.g., kidneys, lungs, blood vessels, brain). Because these diseases are often complex, they benefit from the care of an expert. Only rheumatologists are experts in this field of medicine.
  • Benefit: Many times, blood clot incidents like DVT or PE can be the cause of something autoimmune going on. A rheumatologist specializes in these diseases and their side effects.
  • Personal story: Since I have antiophospholipid syndrome (APS), my hematologist referred me to a rheumatologist to best monitor any ongoing or new symptoms that could be related to lupus. APS, blood clots, pleurisy (inflammation of the lining of the lungs) and low platelets are all things I have or had that could also be indicators for lupus. I see my rheumatologist about every six months or when needed. He communicates directly with my hematologist.
  • More: For more information, including how to find a rheumatologist in your area, visit the American College of Rheumatology.

A person recovering from a blood clot may also see these specialists for follow-up and/or ongoing care:

  • Vascular Surgeon – A vascular surgeon is a specialized surgeon of all parts of the vascular system, arteries and veins, except that of the heart and brain (i.e. to repair veins, insert a filter or catheter, etc.)
  • Pain Management Specialist – A pain management specialist is a physician with special training in evaluation, diagnosis, and treatment of all different types of pain, including acute pain, chronic pain and cancer pain and sometimes a combination of these for a variety of reasons including, but not limited to, surgery, injury, nerve damage, and metabolic problems such as diabetes (i.e. to mange pain after a DVT/PE or as a result of underlying issues, etc.).
  • Endocrinologist – An endocrinologist diagnoses and treats hormone imbalances and problems by helping to restore the normal balance of hormones in the body, particularly in thyroid disease and diabetes (i.e. many people who have suffered from a blood clot also suffer from some type of hormone imbalance).
  • Neurologist – A neurologist treats disorders that affect the brain, spinal cord, and nerves, such as stroke, multiple sclerosis, headache disorders, infections of the brain and peripheral nervous system, movement disorders, neurodegenerative disorders, seizure disorders and speech disorders (i.e. to find out what is causing headaches, stroke or cognitive concerns after a blood clotting episode, particularly if a blood clotting disorder/mutation carries a neurological component or symptom).
  • Radiologist/Interventional Radiologist – A radiologist employs the use of imaging to both diagnose and treat disease that is visualized within the body (i.e. an imaging scan or ultrasound). Interventional radiology is a sub-specialty of radiology which utilizes minimally invasive image-guided procedures to diagnose and treat diseases in nearly every organ system (i.e. as an alternative to having surgery as the first option to a problem).
  • OBGYN – OB is short for obstetrics or for an obstetrician, a physician who delivers babies. GYN is short for gynecology or for a gynecologist, a physician who specializes in treating diseases of the female reproductive organs (i.e. to manage high-risk pregnancies, heavy menstrual flows, blood clots during pregnancy, etc.).

As you can see, ongoing care will vary greatly from individual to individual, depending on the reason for a blood clot, damage done, individual patient and underlying or extenuating factors. This list is by no means all-inclusive or exclusive either as there are many different options for treatment and specialist available.

The bottom line? I think it is beneficial to see a team of doctors for treatment of DVT and PE. In my case, my care started with a PCP and a hematologist and I was referred to additional specialists depending on individual factors, for example, I see an endocrinologist for an underlying thyroid disease. You may regularly visit an anticoagulation clinic for medication management. Recovery from a DVT and/or PE definitely requires follow-up care in medication management, short and long term complications and monitoring all organ systems in the body to ensure no additional damage has occurred or is occurring. Sometimes, a DVT or PE might be the result of an underlying condition or illness that may be not be discovered, unfortunately, until after experiencing a blood clot, as in my case. My personal level of care currently includes my PCP, hematologist, endocrinologist and rheumatologist.

Reader Writes In. What specialist do you see and for what part of your recovery? Do you also need to see or be referred to an additional one? Are you often overwhelmed or concerned about the amount of doctors you see/have seen? How do you best manage your ongoing care in terms of specialists?

There is hope for healing and you are not alone,

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The Truth Is

The truth is, I was going to write a post about blood clots in the news lately.

The truth is, now did not feel like the right time to share the news updates. What does feel right, is sharing some truths about blood clots and recovering from blood clots. This is my message to you today.

The truth is recovery is hard. Very hard. Recovering from a DVT or PE is not like recovering from a cold, flu, surgery or injury. It is more like recovering from a heart attack, stroke or cancer. There are days when I feel miserable and days when I feel great and no apparent way to know which day will fall where and when. It is hard to plan things, hard to make commitments, hard to get active, hard to eat right and hard to take care of myself. It’s even hard to get out of bed, get dressed, do my hair, go to work and drive my car. There are some days when everything is hard – no matter how simple the task. I’m not the same person I was pre-PE and I can’t ever go back to that person. Experiencing a traumatic situation that also has the potential to be deadly, changes us in a way so that we can never go back to the person we once were. Are we better or worse? I don’t know, but I do know we are different. I think about situations differently since my PE (everything requires extensive thought and weighing of actions vs. reactions); I respond differently since my PE (I am much more emotional and sensitive, if that’s even possible); and I see life differently (it’s too easy to take it for granted, I almost did and I almost didn’t get a second chance at it). The truth is recovery from a DVT and PE is hard.

The truth is this hurts. Along with being hard, recovering from a DVT and PE just hurts. It hurt so bad in the beginning, I was willing to sacrifice a lung and a leg (even while being a runner) to make the pain stop. It hurt to walk, it hurt to breathe – two very basic tasks so many people take for granted. It hurt to talk, to laugh, to hiccup, to sneeze and to put on pants. As time has gone by, the physical pain has lessened for me, but the emotional pain remains. Recovering from a DVT and PE is a very lonely time and the emotional scars of that loneliness and isolation are not so much like scars yet, but more like open wounds. It hurts to have friends and even family not understand what you’re going through, why it’s taking so long to recover and why you can’t do the things you once did. It hurts to always explain why you’re tired, not well or that yes, you’re still recovering from that lung thing that happened to you. It hurts to feel like sometimes no one cares, no one will listen and no one even gets the pain you’re in. The truth is, recovering from a DVT and PE hurts.

The truth is this is scary. I remain highly anxious since my DVT and PE. There are days when I am nearly convinced it is happening again because I feel a pain in my leg or a stab in my lung. There are nights when I can’t sleep because I replay the story of my PE over and over again in my head – I should have known something was not right, I should have gone to the doctor earlier; maybe if I did, I wouldn’t be in so much pain now. There are nights when I wake up from a nightmare or pain and can’t fall back to sleep because what if I don’t wake up again in the morning? Tests, scans, MRI’s, blood draws, doctors’ visits, new diagnosis, hospitalizations – are all scary. Hearing words we don’t understand like INR, D-Dimer, Factor V, APS, oxygen level, warfarin, blood thinner, bilateral, chronic and acute are scary. The truth is, recovering from a DVT and PE is scary.

The truth is you are not alone. When I was first discharged from the hospital, I had never felt so alone. While I had family and a few close friends who supported me through my hospitalization, none of them have experienced a PE. None of them know exactly what it feels like. I knew no one in my personal life who had gone through what I was going through. I turned to the internet for help and found some resources there, but was still lacking in real-life, down-to-earth, recent stories of people who were going through what I was. Most people I came across, like me, had not even heard of a DVT or PE before it happened to them. I wanted to change that and created BCRN within months of my discharge. You are not alone, you are never alone. If you have a question, someone else has the same question. If you have had an experience, emotion or thought, chances are, someone else has also had it. Share, talk, communicate, find us on Facebook, share here or send me a message. This is a network of people who have been or are going through the same pains, fears, anxieties, challenges and triumphs as you. The truth is, you are not alone in recovering from a DVT and PE.

The truth is it does get better. I can’t tell you when and I can’t tell you how – recovery is different for each and every person. What I can tell you is that it does get better. Now two years out from my DVT and PE, I feel remarkably better than I did at a few weeks, a few months and a year. While I still face day-to-day challenges including chronic fatigue, leg pain, difficulty breathing in hot or cold weather, regular intravenous blood monitoring, managing medication and doctors’ appointments, it is better than it was. Progress is slow and improvement feels miniscule at times (maybe because is it), but it does get better. I have to believe it will get better for you too and while we may face new challenges from here on out, I believe in time, we do get better and there is hope for recovery and healing.

Reader Writes In. What is your truth?

There is hope for healing and you are not alone,

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March: Blood Clot Awareness Month

I seem to have always known blood clots were a serious health concern – especially if you had one in your heart, lungs or brain. I heard about them in the general sense; for example, when discussing the elderly who had passed away or when talking about recovery from a major surgery or hospitalization. I didn’t know the signs or symptoms; that fatality from a blood clot could happen within moments of the first symptoms; or that it would ever happen to me at 29 years old and as an active runner. I thought I had a simple running injury and if I had known the symptoms, it may have made the difference between a treatable Deep Vein Thrombosis (DVT), behind my left knee, and the Pulmonary Embolism (PE) that went to my lung and almost killed me. It was nearly two days since my calf started to hurt until I went to the Emergency Room, breathless and in excruciating pain, both in my leg and side. I couldn’t believe the extent of the injury to my body, mind and emotions. It completely changed my life – no aspect was left untouched. And the thing is, other people – like me and unlike me – don’t know or don’t think it can happen to them. March is Blood Clot Awareness Month and as a blood clot survivor, I am doing everything I can to spread awareness about this deadly and often treatable injury.

I know they majority of people I know do not understand what I went through during my PE and recovery. They do not understand my physical pain and how I could look okay in spite of it. They do not understand that I took almost a month before I could even breathe without the assistance of an oxygen tank and how I went from running several times a week to not even being able to walk from one room to another. They do not understand how I could not use the bathroom by myself in the hospital, that I was in a hospital room well-equipped for medical personnel to take life-saving measures at a moment’s notice or that I couldn’t even sit up for days on end. They do not understand how my personal relationships, professional life and self-confidence suffered, some to irrevocable ends.

I attribute most of this to the fact that many people simply do not understand blood clots and the damage they cause to the body. People understand what it means to have a heart attack, stroke or cancer, but they do not often understand what it means to have a blood clot. They also do not understand that it could happen to them. I am trying to change that and help spread awareness not only for Blood Clot Awareness Month, but always. Consider this post a crash-course in blood clots and while it is in no way all-inclusive, I hope to present to some useful information for you or others you may know who don’t understand what happens when a person has a blood clot. Share it, print it or post it! Let’s get the word out about this silent killer.

Just the Stats

  • Blood clots (DVT and PE) affect am estimated 900,000 Americans each year (Source).
  • Blood clots (DVT and PE) kill an estimated 300,000 Americans each year. The number of deaths from blood clots  exceeds those from breast cancer, AIDS,and motor vehicle accidents combined (Source).
  • Blood clots are a leading cause of preventable hospital deaths in the United States (Source).
  • Blood clots are the leading cause of maternal deaths in the United States (Source).
  • 1 in 3 people who are diagnosed with PE will die.
  • In 25 percent of people who experience a PE, the first symptom is sudden death.
  • One person every minute will be diagnosed with DVT in the U.S. One person every six minutes will die from a PE in the U.S. (Source)
  • 10 to 30 percent of people affected by DVT/PE will die within one month of diagnosis.

The Facts

Who…
  • Can get a blood clot? Anyone can develop a blood clot for a variety of reasons. There are many risk factors that increase your risk for a blood clot (see below for more detail). In a nutshell, you are at increased risk if you or a close family member have had a blood clot before; you have had recent major surgery; you have an inherited clotting condition; have cancer; are immobile for a long time (confined to bed, long-duration plane or car trip, etc.), or use birth control pills. It’s important to understand your own personal risk and also that anyone can develop a DVT at any time.
  • Most commonly treats a blood clot? Patients commonly see their general practitioner for treatment of a blood clot, but can also see a pulmonologist, cardiologist or hematologist. A hematologist is best equipped to handle ongoing care particularly if the patient has a clotting factor or other blood condition/disease contributing to the blood clot.
What…
  • Is a DVT? DVT (short for Deep Vein Thrombosis) is a type of clot that forms in a major vein of the leg or, less commonly, in the arms, pelvis, or other large veins in the body.
  • Is a PE? DVT can develop into PE (short for Pulmonary Embolism), a dangerous condition in which the clot detaches from its point of origin and travels through the bloodstream to the lungs, where it becomes stuck and prevents blood flow.
  • Causes a blood clot? Blood clots may form when either the flow of blood in a vein slows, damage to a vein occurs, or the blood is more clottable (such as with a genetic or autoimmune factor already in the body/blood).
  • Is a blood thinner? Also called an anticoagulant, a blood thinner helps to prevent clots from forming in the blood. They include medicines like aspirin, clopidogrel or Plavix, Warfarin — more commonly known as coumadin — and a variety of other medications that are used in the hospital setting, including injections like Heparin and Lovenox.
  • Happens after someone is diagnosed with a PE/DVT? Often times, a person is admitted to the hospital, especially if he or she is experiencing a PE. They are usually put through a variety of blood and imaging tests to check for high blood clotting factors in the blood (D-Dimer) and actual blood clots (Dopplar Imaging scan). Patients are usually put on blood thinners of some sort as soon as possible. Patients are often treated with pain reliving drugs and sometimes surgery is performed to remove the clot or place a filter to stop the clot from moving (usually in the groin), but these procedures are not always performed.
  • Does it mean if someone has a clotting factor? If someone says they have a clotting factor, it usually means they have a genetic (an example would be Factor V Leiden ) or autoimmune (an example would be Antiphospholipid Syndrome) mutation or condition that causes their blood to clot when it should not.
Where…
  • Can you develop a blood clot? You can develop a blood clot anywhere you have veins, but they are most commonly in the leg and less commonly in the arms, pelvis or other large veins of the body.

Why…
  • Is a blood clot so damaging? A blood clot is damaging because, depending on it’s path, it can cause great trauma to the body’s circulatory system, including the heart. It takes time and energy for the body to heal damage done to the heart and lungs, even if it is micro-damage. A PE is consider a traumatic event for a person’s body to go through.
  • Isn’t there more public awareness about DVT/PE? A lot of times blood clots are not named as the cause of death because a person may have also suffered from underlying conditions, such as cancer. There seems to be more public energy focused on educating people about heart disease, diabetes and cancer, yet organizations like the National Blood Clot Alliance (Stop the Clot) and Clot Connect are making great strides to raise awareness. More recently celebrities such as NACAR’S Champion Driver Brian Vickers, 2010 Olympian, and two time US Sprint Champion, and a Master Sprint World Champion in Speed Skating Rebekah Bradford and Reality TV Star NeNe Leakes have spoken out about their personal encounters with blood clots to help bring awareness to the public.
How…
  • Long does it take for someone to recover from a DVT/PE? Recovery from a DVT and/or PE varies greatly from individual to individual and can take anywhere from several weeks to a year or more. Some people will face complications from DVT, including Postthrombotic Syndrome (PTS) for the rest of their lives.
  • Can I prevent a blood clot?  The good news is, yes, there are many things you can do to help prevent a blood clot. Stay active. Immobility increases the risk of developing clots. If you’ve been sitting for a long period of time (such as at your desk or while traveling) stretch your legs often; Maintain an ideal body weight; Know your risk factors for developing a clot (see below) and discuss with your doctor; Know your family medical history; If you are hospitalized or planning for surgery, ask your about what will be done to prevent blood clots (such as being placed on blood thinners or wearing anti-embolism, also called compression, stockings).

Did you know?

  • One-half of clot patients will have long-term complications and one-third will have a recurrence within 10 years (Source).
  • An estimated $10 billion in medical costs in the US each year can be attributed to DVT and PE (Source).
  • Blood clots are a treatable condition and often preventable condition.

You may want to know

  • A PE is sometimes called a “heart-attack of the lungs.”
  • Deep red is the awareness ribbon color for blood clots, including DVT.
  • Red and white (together) is the awareness ribbon color for PE.
  • Burgundy is the awareness ribbon color for clotting disorders.

DVT (and subsequently PE) risk factors include

  • Hospital stay
  • Major surgery such as abdominal or pelvic surgery
  • Knee or hip replacement
  • Major trauma such as an auto accident or fall
  • Nursing home living
  • Leg paralysis
  • Older than 65 years
  • Trips over four hours by plane, car, train or bus
  • Active cancer or chemotherapy treatment
  • Bone fracture or cast
  • Birth control pills, patch or ring
  • Hormone replacement therapy
  • Pregnancy or a recent birth
  • Prior blood clot or family history of blood clots
  • Heart failure
  • Bed rest over three days
  • Obesity
  • Genetic/hereditary or acquired blood clotting disorder

Symptoms of a DVT

  • Swelling in the affected leg, including swelling in your ankle and foot.
  • Pain in your leg; this can include pain in your ankle and foot. The pain often starts in your calf and can feel like cramping or a charley horse. It won’t go away with regular stretching, massaging or rest.
  • Warmth over the affected area.
  • Changes in your skin color, such as turning pale, red or blue or purple.
  • You need to know in about half of all cases, deep vein thrombosis occurs without any noticeable symptoms.

Symptoms of a 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 light headed or dizzy, or fainting
  • Rapid pulse
  • Sweating
  • Coughing up blood
  • A sense of anxiety, nervousness or impending doom

What to do if you think you have a DVT

If you are at all concerned or have any of the symptoms listed above, make an appointment with your primary care physician or visit your local emergency room.

What to do if you think you have a PE

PE is life-threatening, seek emergency medical care immediately or call 9-1-1.

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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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