Patient Story: My Blood Clot Story by Denise Watrous

watrous-denise-photo_finalIn August of 2006, I was 32 years old. I woke up on a Tuesday morning with some mild shoulder pain. It was a dull ache. It hurt in the front, right above my clavicle bone, and all the way through to my back. I thought I must have slept on it wrong so I went about my day, and I took my then three-year-old twins to speech therapy then the mall. I then had lunch with a friend. I complained about my shoulder pain, and she lovingly said “Take an Advil and shut the hell up!”

As the day went on, the pain got worse. By dinner time, the pain was intense, and I noticed that it was harder to breathe. About an hour after that, I noticed that my heart also hurt, but since I have mitral valve prolapse (MVP), I didn’t pay much attention. At about 8:00 p.m., I noticed that the pain was very bad. My heart hurt, it was hard to breathe, and my jaw and left arm hurt. I thought I was having a heart attack. My then-fiancé, Chris, still lived in Illinois at the time. I told him what was going on and he told me, “You are not having a heart attack, stop worrying.” I thought, “I’ll call the ask-a-nurse hotline!” And that is what I did. The nurse urged me to go to the ER, stating that in women, gall bladder issues can present with shoulder pain. I just couldn’t shake the feeling something was wrong. The only reason I went to the ER was because my dad had a massive heart attack at 35 years old, and I thought, “Well, I have the family history….so I’ll go.”

I went to the ER at Waukesha Memorial. I drove myself. I remember telling the triage nurse, “Look, I don’t really need to be here, but they wanted me to come in.” I took my laptop to play games, if I got bored. Little did I know…. within 15 minutes of the doctor first seeing me, I was having a CAT scan. It was incredibly hard and incredibly painful. I had to raise my arms over my head, which I could hardly do. The voice of the scanner said, “Take a deep breath. Hold your breath.” I couldn’t. I had no lung capacity. After several tries, we got enough of an image for them to send it to be read. They took me back to my room.

I don’t know how long it was before the doctor came back. All I remember is how uncomfortable I was. I remember rocking back and forth, just trying to find a position that made breathing easier. It was futile.

The ER doc came back in and told me that they were going to admit me. They still tried to sugar coat things a bit, probably especially since I was alone. He told me I had “some clots in both lungs.” As he left the room to talk to the PA about admitting me, I overheard him say, “I don’t know if she’ll make it through the night.”

WHAT?!?!?!?! Imagine my shock, my horror, my terror! Many medical personnel started coming in. They put me on a heart monitor, oxygen and a pulse ox monitor. I was terrified. I was alone, and it was now the middle of the night.

Then, it got bad. I remember being uncomfortable. I went from discomfort to mind-altering pain that felt like I was dying in an instant. It hit so fast, it took all of my breath away. I remember hitting the call button as fast as I could, and time seemed to come to a halt. I remember turning around to watch my heartbeat on the monitor and thinking, “This is it, I’m going to watch myself flat line.” I prayed for my babies to remember me.

They rushed in and gave me a shot of Dilaudid (holy crap) to help with the pain. It took maybe just the edge off, but made me high out of my mind. The next few hours were a narcotic-induced blur.

I was in the CICU for five days. The morning after being admitted, I called a good friend of mine who is a doctor, because I knew she’d be honest with me. I asked her point blank, “Renee, am I going to die?” She paused for a long time and finally said, “I don’t know.” That terrified me. I knew she was being honest and she didn’t know if I would live or die.

I got Heparin blood thinners in the ER, and I left the hospital with a combination of Lovenox and Coumadin. Lovenox is a shot I would take every 12 hours in the stomach. I had to do that for four weeks. I was on Coumadin for 18 months. I had my blood tested (INR) twice a week during that entire time. I had constant huge bruises. I lost hair and memory, a little known side effect of Coumadin for some people. If I cut myself, I would bleed uncontrollably. My gums would bleed when I brushed my teeth. It was 18 months of praying I wouldn’t hit my head in an accident because I’d bleed out before help could arrive. It was 18 months of my then 12-year-old daughter getting in my face if I was napping, because she was checking to make sure I was still alive. It was18 months of waking up to any twinge of pain and being afraid it was another clot. It was 18 months of hell.

I have no family history of blood clots. I didn’t a recent surgery. The only two risk categories I fell into were being on a birth control pill and being on a road trip. What caused them, we don’t really know, but it could happen to you, too. My husband’s grandpa died in his sleep of a PE. My sister-in-law’s mom died of a PE. My other sister-in-law’s close friend died of a PE.

I encourage everyone to know what to watch for and know to get help. We are always told that the ER is for emergencies. I never in a million years thought I was having an emergency. As a woman, and like so many other women, I am polite and put others before myself. I’m here to tell you, if you have a pain that you don’t know about, go to the ER. Just do it. It is better to find out it is nothing than to be dead. A week after leaving the hospital, my doctor told me if I had gone to sleep that night, I would not have woken up in the morning. Don’t be in that position. Education is key. Stay healthy and stay alive.


Share Your Story SQEditor’s Note: Thank you, Denise, for sharing your story with BCRN. Connect with Denise in the comments below.


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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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Three Symptoms You Should Never Ignore

Deep Vein Thrombosis (DVT) and subsequent Pulmonary Embolism (PE) are, without doubt, the most painful injuries I have ever experienced in my life. As a prior athlete, I had become accustomed to pain to some extent. After all, training for a half marathons is not meant to be pain-free. My legs hurt, my feet hurt, my shoulders hurt and even my lungs hurt at different points throughout my training. Growing accustomed to ongoing knee pain actually contributed to a delay in my seeking medical treatment for my DVT because I thought it was a result of a recurring overuse injury. I finally went to the Emergency Room (and only after instruction from my family physician) when I was struggling to breathe. Pain, as I have come to find out, is also a part of recovery from a DVT and PE. As we become more accustomed to pain during recovery, there are three symptoms you should never ignore when it comes to your health.

Learning to gauge what pain is critical and what is a normal part of recovery can be difficult and, above all else, it is important to remain in contact with your physician about your specific symptoms. Pain, for me, comes and goes now, two years out from my DVT and PE. Some days I feel great and other days it is still a struggle to get up, get dressed and walk up the stairs because of pain in my leg affected by DVT or pain in my side from the PE. While the pain has lessened over time, I did not know what pain was normal and what wasn’t in the beginning. Two months after I was admitted to the hospital with the PE, I was re-admitted with pain in my same side, this time as a result of pleurisy (or inflammation of the lining of the lung). I called my doctor and he indicated given my very recent history of PE, it was better to get it checked out than to wait. And, when in doubt and regardless of the perceived severity of your symptoms, get checked out, especially these three symptoms!

As time progressed, I learned to gauge pain, but once again found myself in the ER more recently with a severe headache that lasted over a day and caused blurry vision. That was abnormal for me, something new and a growing concern the longer it persisted. Again, my doctor advised that given my history of clotting and increased risk of stroke due to Antiphospholipid Syndrome, it was best to get it checked out. In this case, it was just a headache (presumably brought on by lack of sleep and stress and maybe a protruding wisdom tooth), but again, I did not know.

Now, after these experiences, I know there are three symptoms you should never ignore – regardless of your past medical history.

1) Difficulty Breathing/Shortness of Breath

Shortness of breath has many different causes. For example, known and chronic heart disease can cause breathlessness if your heart is struggling to pump blood throughout your body.While you can have difficulty breathing with, for example, pneumonia or bronchitis, it can also be a symptom of something life-threatening such as a heart attack or a PE. You should seek immediate medical assistance especially if your symptoms appear suddenly, are long-lasting, are new or do not subside with regular rest.

2) Chest Pains

Causes of chest pain can vary from minor problems, such as indigestion or stress, to serious medical emergencies, such as a heart attack or PE. The specific cause of chest pain is often difficult to diagnose without medical attention. Chest pains that appear suddenly are of significant concern and can be symptoms of a PE, heart attack or even a stroke. Chest pains may present as numbness or tingling in the chest area, back or even the shoulder arm/area. You should seek immediate medical assistance if you experience chest pains that are sudden and unexplained.

3) Headache (sudden onset, long-lasting or especially one that causes changes in vision or speech)

Common types of headaches include tension headaches, migraines, sinus headaches, and headaches that begin in your neck. You can have a headache with a cold or flu or as a result of other illness. They can range from mild to severe in symptoms. Headaches that are particularly concerning are the ones that come on suddenly, last for an extended period of time or cause changes in vision and/or speech as these can be symptoms of a stroke or blood clot. You should seek immediate medical assistance if you experience a headache with any of these symptoms.

The bottom line is, you know your body best and as you are recovering and learning what pain is normal for you, it is important to keep in touch with your medical professional about any sudden or unexplained symptoms you experience. If you cannot get in contact with your doctor or are concerned, chest pains, shortness of breath and headaches are three symptoms you should never ignore when it comes to your health.

Share your story. Do you agree that these are three symptoms you should never ignore? How are you listening to your body?

There is hope for healing and you are not alone,

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Post-Thrombotic Syndrome is Not in Your Head

PTS Not in your Head Cover

In the first days, weeks and even months after being released from the hospital there is a lot to worry about – medications, doctor’s appointments, follow-up care – not to mention an adjustment to a whole new lifestyle, one that might even be filled with pain, new feelings and worry. Experiencing a DVT, PE, or other blood clotting incident changes everything about our lives – right down to the tiniest detail and has far-reaching effects that we might not even notice until months or years down the line. It can be the smallest changes that affect us in big ways.  One of those long-term, and potentially upsetting, effects of DVT is Post-Thrombotic Syndrome (PTS) and it is not in your head.

This week, the reminder that yet another thing may be permanently different came to me in a pair of previously-thought cute pair of winter boots. I did it right. I kept the heel low, got the pair with the calf extender and made sure they weren’t too stiff. I tried them on, walked around the store and wore them at home. Of course, the second day I wore them outside, I realized I couldn’t handle them. Not only could I not handle them, I was afraid of them. I took them off in a fit of panic, actually, and drove home in my socks.  I can no longer stand the feeling of something around my calf, even if it is not tight. I can’t do it. That set me back a little; I got angry (I used to love high boots), I was disheartened and I decided I won’t look cute this winter.

My boot

Even though I am 17 months out from my DVT and resulting PE, I still experience symptoms that are similar to that of the DVT. I have experienced pain, swelling, tenderness, skin discoloration and itching. All are symptoms of PTS and can range from mild to severe. PTS can affect 23-60% of patients in the two years following DVT of the leg. Of those, 10% may go on to develop severe PTS, involving venous ulcers (Wikipedia.com). While some people who have had a DVT recover completely, others may be left with some symptoms in legs (or arms) that may never go away.

Per the National Blood Clot Alliance, an estimated 330,000 people in the United States have the PTS. Typically, the more extensive the DVT, the more severe the symptoms of PTS will be. However, this is not always so: even people who have had very extensive acute DVTs with severe symptoms may recover completely and may not be left with any long-term symptoms.  Approximately 60% of patients will recover from a leg DVT without any residual symptoms, 40% will have some degree of PTS, and 4 % will have severe symptoms. The symptoms of PTS usually occur within the first 6 months, but can occur up 2 years after the clot. If a patient has done well for 1⁄2 – 2 years after the clotting event it is highly unlikely that he or she will develop PTS.  Little is known as to who will develop chronic symptoms, such as skin ulcers, and who will not.

The symptoms of PTS (per the National Blood Clot Alliance) include:

  • Chronic extremity swelling
  • Chronic (or waxing and waning) pain
  • Unspecific discomfort of the extremity
  • Diffuse aching
  • Heaviness, tiredness and cramping of extremity
  • Dark skin pigmentation
  • Bluish discoloration of toes/fingers, foot/hand or diffusely of leg/arm
  • Skin dryness
  • Eczema
  • Hardening of the skin
  • Formation of varicose veins
  • Skin ulcer (stasis ulcer)
  • Atrophie blanche or white atrophy (small areas of white-gray scar tissue)
  • Dermatoliposclerosis (an inflammation of the layer of fat under the epidermis)
You mean it’s not in my head?

No, PTS is not in your head! When a clot forms in a vein, the valves inside the vein can be damaged by the clot or by the surrounding inflammation. The damaged valves (as well as residual clot) block blood returning from the leg veins back to the heart, which results in increased venous pressure in the leg, thus contributing to PTS (Vascular Disease Foundation). The pain you feel weeks, months and even years after your DVT are very real in most cases, stemming from PTS.

I’ve had a DVT, can I prevent PTS?

As with many health ailments, prevention is the key when it comes to PTS. Wearing custom-fitted compression stockings is the best way to prevent PTS. Stockings are often not work because they are uncomfortable, but they should be to help reduce your risk of developing PTS in the long run. They should be worn during the day and while standing. You should not wear them at night. They should be worn for weeks, months, or years to control symptoms. As long as you continue to experience any type of leg swelling, wear compression stockings. 

I’ve had a DVT and now have PTS, can my symptoms be treated?

There are several things you can do to help ease the pain of PTS, including:

  • Elevation of extremity at rest and at night
  • Compression stockings, grade 2, get them fitted by your doctor (although recently research is conflicting on the effectiveness of compression stockings)
  • Weight loss
  • Increased exercise with strengthening of extremity muscles
  • Pain management (medication, visiting a pain clinic)
  • Compression pump (battery-powered device used when stockings fail to work)
  • Vascular interventional radiology procedure: balloon opening and stenting of narrowed vein (procedure to keep the vein open)
I have ulcers, what should I do?

As with any symptoms of PTS, keep your doctor informed of any changed or new experiences. Visits with a vein or wound care specialist may be helpful to get the best care for ulcers.

How do I know I have PTS and not a new blood clot?

Many of the signs of  PTS are the same as those for new blood clots in the leg, so it is very important for you to ask your health care provider to look at your leg. Only a health care provider can tell you if your problems are from a new blood clot or from PTS. Since it can take 3 to 6 months for your blood clot symptoms to get better, it is important to discuss any new or different symptoms with your doctor as soon as possible. PTS pain and swelling symptoms will tend to lessen with rest and elevation, but would not lessen if you are suffering from a blood clot.

Emotionally, I’m a mess, is that part of PTS too?

PTS is a frequent side effect of DVT. Symptoms can come and go over time, but PTS is a chronic, lifelong condition. PTS leads to suffering and disability and is costly to society in terms of treatment. The physical and psychological implications of PTS are very real. If you were very active before PTS or worked a certain occupation, symptoms may make it difficult to return to your previous level of activity. Oftentimes, it is hard to adjust our level of expectations for ourselves while we slowly recover or make adjustments in our activities. In terms of work, some patients are forced to pursue a new line of work or even file a disability application, which can be devastating to the self-esteem, especially if you have been working your whole life. Visiting a social worker, therapist or psychologist may be helpful in facing some of these issues.

Once I have PTS, will it ever go away?

Currently there are no procedures to correct the veins that contribute to PTS. It is typically a lifelong diagnosis that needs continually managed.

Where can I find more information?

Click on the links below for more information about PTS, including symptoms, treatment and care-

Share your story. Are you suffering from PTS? Do you wear compression stockings? How are you dealing with your diagnosis?

There is hope for healing and you are not alone,

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What recovery from a pulmonary embolism looks like

What does recovery from a pe look like

Over the course of my entire life – childhood and adulthood – I had never been hospitalized, and I had never been as sick as I was with my pulmonary embolism. Recovery for me was taking a few days off work to get over a cold or stomach virus or having to stay in bed most of the day and not eat anything with a sore throat. When it came to running, words like recovery meant things like not running for three or four days after a race and taking it easy on my muscles, even icing and massaging, after a big event. I never looked at the time after my mother’s passing as recovery, but as grieving and settling into what became for me, a new normal. Recovery for other people might be time off their feet due to a broken or fractured running bone, but even they always came back within a matter of months. So, recovery was not a very deep word in my vocabulary and I soon found out, that I really had no idea what recovery from a pulmonary embolism looks like.

I vividly remember my first doctor’s appointment with my hematologist after being discharged from the hospital. It was about a week later, and I was feeling bad, beyond what I understood to be tired (I mean, truly feeling fatigue throughout every inch of my body), carting an oxygen tank and convinced my summer was ruined since flip-flops (my warm-weather footwear of choice) could not be worn with my flesh-colored compression stockings. He asked how I was doing and said, “It’s good to have you with us!” I blinked in bewilderment at him and he said, “For as long as I’ve been doing this, you were the sickest I have seen a patient in a very long time. You’re lucky to be here, actually, what you just survived is not something to be taken lightly.” Okay, but I’ll be running and working again in no time, right?

He stopped what he was doing and sat down in front of me. I was perched on the end of the exam table, legs outstretched and not at all comfortable. It was hot, I was hot and I felt like I was suffocating inside the small exam room, not to mention I suddenly just wanted to go home.

“Sara,” he said, “Everything just changed for you. I mean everything. Your body has been through some pretty severe trauma and you aren’t going to be better in a week or a month or even a few months.”

More blinking.

And?

“The recovery we see from this, from people who have been through something like you have, it takes some time. A long time.”

So?

“You are looking at 1-2 years of recovery at this point. We’ll know better after a year what to expect with how things are going to go. You’ll probably be on oxygen for about a month, I would suspect. I don’t want you to stop wearing your stockings everyday for about six months or so from here, well, you need to see me if you think you can stop wearing them daily. And, you’re going to be on blood thinners now.”

What do you mean, like, forever?

“It’s early to say, but you will probably have to manage this illness, to some extent your recovery and yes, blood thinners, for the rest of your life.”

Wait? What? One to two years? As in, YEARS?

He proceeded to talk about how while it was going to take some time, it didn’t mean I wouldn’t find a new normal and probably even go back to activities I enjoyed like running.

Activities I enjoyed? I was tunneling out of the conversation as the projection of my future played out in my mind.

That was just a week shy of one year ago. My doctor and I would have this conversation a minimum of six or seven more times because I couldn’t comprehend at that time why or how I would need that much recovery, what it felt like to be recovering at all and, as I would later find out, I was struggling with cognitive and memory delays that would alter my state of thinking and later contribute to my inability to successfully do the work I needed to for my job.

Still, I was devastated when I left the doctor’s office with my husband that day. Not even convinced I would do everything I could to recover faster, which I later found was impossible too. Just plain devastated. We had planned to stop at Chipotle for lunch and when we pulled up, just on the other side of the building where the doctor’s office was, I couldn’t get out of the car. There was a group of women about my age sitting out front at the picnic table in cute summer dresses and high heels. I was wearing sweats (that were cut-off nonetheless), tennis shoes and carrying an oxygen tank at 29 years old. I wasn’t getting out of that car. My husband finally convinced me we could get it to go and I did get out – after stashing my tank in the back seat – and only made it to the door, with his assistance, before I was gasping for air in the summer humidity. About the same time, I felt a rush of blood down my legs (the first time of many unfortunately over the next year) and I burst into tears. We did not eat Chipotle that day. In fact, I stayed home for the next month, except for appointments.

My reason for sharing this day with you is two-fold. One, I don’t think enough survivors are told what their recovery time will look like. I don’t think they are told to expect months if not years of recovery – that it is normal and to be expected. I don’t think a lot of doctors even know to tell their patients this because maybe no one has gone back to let them know what recovery looks like. This illness/injury isn’t, for many people, a-here’s-your-pill-and-you’ll-be-fine-in-a-couple-of-weeks-once-your-body-adjusts-treatment. This illness/injury

And two, there is hope for healing. I only have myself to compare myself to, but looking at where I was a year ago to today, as I write this post, the improvements I have made are nothing short of amazing. I even feel like a different person now. My mind is more clear, I’m walking again and I can talk about what happened to me.

Some things to keep in mind as you begin recovery:
  • Every person will have a different picture of what recovery looks like. Some people will return to work and normal life in a few days or weeks, some will be in recovery for the remainder of their lives and still others don’t won’t even have the chance to recover because a PE will claim their lives. Recovery and treatment are unique to each of us.
  • This recovery is full of ups and downs and it is not uncommon to continue experiencing symptoms of the PE during recovery. No day is the same and while you may be fine one day, you could be feeling horrible the next. High anxiety about trivial things or a returning clot are not uncommon either. Depression is also a notable symptom of recovery as all of this is very difficult to deal with and understand for some. Make sue you follow up with your doctor if you are struggling with anxiety and/or depression because he or she may be able to prescribe medications to help you.
  • Often the symptoms that diagnosed the embolism are some of the same things that will be experiences during recovery too – swelling and tenderness in the leg and shortness of breath or pain in the chest. Be sure to follow-up with your doctor or emergency room if, at any time, you question what you are feeling to rule out a recurrent clot. My doctor told me, he still sees patients after a couple of years who experience the initial symptoms of their DVT or PE.
  • After a pulmonary embolism the body spends a lot of energy on healing the heart and lungs, even if they were minimally effected. You may feel more tired, more often and be more sick, more often then before your PE. A day of gardening or a bike ride or even a full day of errands or work can leave you ready for bed before dinnertime. This is normal and if your body asks for rest, give it what it needs! It will take time to get back to even a low level of activity.
  • You may come home from the hospital with no physical restrictions, which is confusing after feeling so horrible and being told you have a long recovery ahead of you. My doctor told me I didn’t have any set restrictions on activity because I would know exactly what I could and could not handle and this turned out to be true. I was convinced I could run in a few weeks. I could not, in fact, walk to the mailbox the first month without stopping to turn around halfway down the driveway after taking the step down from my front door. My body simply would not let me move that much. At the same time, exercise helps to decrease your chance of additional clotting, but do not rush this – you will know when it is time to exercise again, if even for a few minutes.

Share your story. How long have you been in recovery? Where you told by your doctors what to expect in terms of recovery? What does your picture of recovery look like?

There is hope for healing and you are not alone,

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The pain that kills

I remember it like it was yesterday. The brain, in fact, has a hard time forgetting pain and research shows that any pain lasting more than a few minutes leaves a trace in the nervous system that is not easily extinguished. Ever since the beginning of time, pain has played an important role in the lives of animals and humans alike, and is an indication that we should stop what we’re doing or take alternative action – or, that something is gravely wrong with the body. Pain has to be intense and hard to ignore in order to initiate the ‘flight or fight syndrome’ in which our bodies prepare to either stand and fight or turn and run; and, it is clear that adherence to pain signals have kept humans thriving for centuries. Little did I know, it is often the pain that kills if left ignored for too long.

I ignored the pain – and almost didn’t survive, just as my ancestral counterparts may not have and just as the 1 in 3 people that die today after having symptoms of a pulmonary embolism, but ignore them or wait too long to seek medical help.

How many die a year graphic

I never thought it could happen to me – why would it? I was a runner and had just completed a two mile training run, a little slow, but done nonetheless, and complained to my friend and fellow coach about what I believed to be the start of plantar fasciitis, an inflammatory running injury that causes pain throughout your heel, foot and sometimes lower leg. I stretched, I went home and iced, showered, ate leftover vegetable stir-fry I had made the night before and took a nap. It was exactly like every other Saturday for the past two years, why would it be any different?

I woke up from a two hour nap and the sun was shining brilliantly through the window. It wasn’t until I was fully awake that I realized my side was aching, and I sat abruptly, which caused me to take in a deep breath. I winced a little and stretched my arms. I knew I had fallen into a deep sleep and slept on my side wrong. It was the start of a new running season and clearly I was more out of shape than I thought as I hobbled into the bathroom – on my throbbing leg – and took another shower. The warmth of the water temporarily eased the pain in my side and my thoughts turned to what I was going to do for the day.

Any plans I thought I made didn’t happen and by that night, when my husband came home from work at 9:45 p.m., I was propped up on the couch with a pillow on either side of me. He asked what was wrong and I said I pulled a muscle running and couldn’t move my side very much. He asked if I needed to go to the hospital and I declined. I would be fine after a good night’s rest. Only, I didn’t get a good night’s rest that night – I slept propped up in the recliner with my two dogs and my husband pacing in and out of the room wondering what was wrong.

By Sunday morning, I woke up after a fitful sleep and I felt a lot better. I got up from the chair, heading for the shower again, and as soon as I put weight on my left leg, it felt like someone tightened the flesh behind me knee in a vice. I yelped in pain, grabbing my leg – which caused me to bend over – and I was astonished to feel that I could not catch my breath due to what felt like a knife in my left side. I hobbled backwards and collapsed into the recliner, trying to catch my breath. My husband came running and said, “I think you might need to go to the hospital,” but again, I said I was fine and out of shape. I called my father and cancelled dinner for the evening, barely able to speak an entire sentence without gasping for a breath. I also managed to croak out that I did not need to go to the hospital. My husband and I looked it up online and determined it was not appendicitis, a heart attack or my gall bladder, but that it must be constipation (after all, I couldn’t remember when I last went) and we made a herbal tea to ease the pain. I even believed it worked, until my dad called again and I sounded worse.

It wouldn’t be until almost 8:30 that evening that I got a call on my cell phone from my family physician (who my father called out of concern) and I explained my symptoms, convinced it was a muscle strain. The doctor, who I now credit with saving my life, instructed me to go to the emergency room immediately (or call 9-1-1 if I was alone) because he believed I was suffering from a blood clot in my lung, that travelled there from my calf. I was in disbelief, but the urgency in his voice – coupled by the fact that he called me on his cell phone on Sunday evening – convinced me that I should go. I all but fell down the stairs and told my husband we had to go. He all but muttered “I told you!” and we were out the door. I remember he helped me walk to the car because I couldn’t and I remember asking him if I was going to die because I felt like it. I remember he said he didn’t think so, but the hesitation in his voice caught me off guard. I cried all the way to the hospital and actually thought about discussing funeral arrangements in the car before it was too late. I had never even been to the hospital for as much as a bump or bruise before and I was certain this would be the end of me, as it nearly was.

And I remember feeling the worst pain I ever felt in my life. Radiating pain in my lower leg that felt like a vice and a stabbing pain in my side that felt like a knife. I couldn’t draw a deep breath, couldn’t lie down, could barely speak and could not put any weight on my left leg without increased pain. And, I remember that although I was seen without question (and bypassed a very long line of sick and injured people) it would be almost three hours before an ER doctor determined what was wrong and an ER nurse gave me morphine that suddenly made it all okay – or so I thought. Little did I know, I had a very, very long road ahead of me and one that I would be very lucky to make it out of alive on the other side of.

Stay tuned for more of my story coming up….

In healing there is hope and you are not alone,