May 12, 2016

Blood Clot Recurrence: Fear No More

Blood clot recurrence is something that happens. It is true that blood clots can happen more than once to the same person. The fear of blood clot recurrence is not at all uncommon if you have experienced a blood clot. You are not alone in wondering if – or even when – a blood clot will happen to you again. While some people only experience one clotting incident, myself included, some people experience many clotting incidents or even continual clotting, which is frightening to think about. Whether you have had one clot or nine clots, the fear of blood clot recurrence is valid because blood clots are dangerous and they can even be deadly. Blood clots cause physical trauma, pain and discomfort as well as emotional and psychological stress, depression and anxiety. Wondering if a second, third, fourth or tenth blood clot will happen to you, only increases the sometimes already-present emotional discomfort of surviving something that one in three people sadly do not.

Fear of Blood Clot Recurrence

In the initial days, weeks and months after my diagnosis, I worried about a second blood clot all the time. I was fearful that every twinge, pain or unusual feeling was another clot moving through my body (presumably on its way to my heart or lungs) – and I was certain that clot would be the one to claim my life. The fear consumed me and at times I could barely eat or sleep. I felt alone in my fear and I wondered if I was overreacting, further emphasizing the thought that I should keep my fear to myself. No one understood, I was certain. So, not long after my initial diagnosis, I found myself trapped in a vicious cycle of worry and and fear of a blood clot recurrence.

For days, weeks, months and even years I worried, the everlasting fear of a recurrent blood clot was at the forefront of nearly all of my thoughts. It hurt, it took its toll on my physical and emotional health – I was tired and anxious – and I feared there was no way out.

Then one day, about four years into my recovery, I realized I wasn’t afraid of getting another blood clot anymore. It was a miracle, it had to be. That was the only explanation as to why a fear I had held on to for so long was seemingly suddenly gone – without any extra encouragement on my part. Of course I prayed, pleaded, cried and wished for the fear to go away, but it hadn’t for so long, so why now?

It was then that I realized, I had also come to understand a lot about blood clots – and even more importantly, a lot about myself – in those same four years. What scared me the most about my blood clot was that I had no idea it was happening: I didn’t know my risk, I didn’t know the symptoms and I didn’t know how I could have prevented any of it. From there, I was able to determine that – armed with knowledge and the passage of time – I had some very valuable tools to help me face, minimize and nearly eliminate my fear of blood clot recurrence.

How to Minimize the Fear of Blood Clot Recurrence

blood clot recurrence tips

Know Your Risk for Blood Clots

One of the most important things you can do to help prevent blood clots is to know your risk for blood clots. I had no idea I was at risk for a blood clot taking birth control pills with estrogen until a blood clot happened to me. Learn about your risks now.

You are at increased risk for blood clots 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.); are pregnant or have recently given birth; or use estrogen-based birth control pills or estrogen for the treatment of menopause symptoms.

You could also be at risk be at risk for a blood clot if you: have a hospital stay, major surgery such as abdominal or pelvic surgery, knee or hip replacement; have major trauma such as an auto accident or fall; live in a nursing home, are immobile, have leg paralysis, are on bed rest for three or more days or are over 65 years old; are on a trip for over four hours by plane, car, train or bus; have active cancer or chemotherapy treatment; have a bone fracture or cast; are taking estrogen-based birth control pills, patch or ring; are taking estrogen for the treatment of menopause symptoms; are pregnant or have recently gave birth; have had a prior blood clot or family history of blood clots; have heart failure; are extremely overweight; or have a genetic/hereditary or acquired blood clotting disorder.

Once you know your risk for blood clots, you can work with your doctors to determine what steps you need to take to help prevent blood clots. For example: I am at risk because I have had a DVT and PE and I have antiphospholipid antibody syndrome, an autoimmune clotting condition. For these risk factors, I take a long-term anticoagulant as part of my treatment plan. I am also at further risk if I sit for long periods or become inactive. For these additional risk factors, I make sure I move around during the day, take extra precautions on long trips and do my best to eat well and exercise.

It is important to note that in 30 percent of patients there is no known cause for blood clots, also called idiopathic. While this is scary in terms of understanding your risk, there are still important things you can do to help ease your fear of blood clot recurrence: recognize signs and symptoms of blood clots and take steps to help prevent blood clots.

Know the Signs and Symptoms of Blood Clots

One of the scariest parts about my blood clot experience is that I had no idea what to watch out for in terms of signs and symptoms of blood clots – so I did not know I had any until it was almost too late. Had I known that I was at risk taking birth control pills with estrogen and that severe pain in my leg and difficulty breathing when laying down were symptoms of a DVT and PE, maybe I would not have waited so long to get help.

A blood clot in your leg or even arm may lead to swelling of your leg or arm, pain or tenderness not caused by an injury or that does not subside, skin that is warm to the touch or skin that is red or discolored. Call your doctor if you have any of these symptoms.

A blood clot in your lung can be life-threatening and may result in difficulty breathing, especially when lying down, chest pain that worsens with a deep breath, coughing or coughing up blood or a fast or irregular heartbeat. Call 911 or go to the nearest emergency room if you have any of these symptoms.

Take Steps to Help Prevent Blood Clots

The good news is, there are many things you can do to help prevent blood clots. Besides knowing your risk and recognizing the signs and symptoms of blood clots you can take some fairly simple steps to help prevent blood clots.

Talk your doctors if you have any risk factors for blood clots, including a family history of blood clots and together, devise a treatment plan. You can also talk to your relatives about your family’s history of blood clots. Before any surgery or procedures, talk with your doctors about blood clots to take preventative measures. If you are confined to a bed either in a hospital or at home due to surgery, illness or paralysis, talk to your doctor about ways to prevent blood clots. If you have been sitting for long periods or are traveling long distances, get up and move. Take steps to maintain a healthy weight, don’t smoke or quit smoking.

Do I still worry about a blood clot happening to me again? Sure, I do. I think that is a very natural part of surviving something that other people do not. I worry from time to time. However, what I can also tell you is that my fear of blood clot recurrence no longer consumes my thoughts and my time. If I think about it at all, it is a passing though, most usually connected to a specific memory about my blood clot or recovery.

There is hope for healing and you are not alone,

 

Sara

Reader Writes In: Are you worried about another blood clot? How do you handle your fear? What tips for facing the fear of blood clot recurrence can you share with others? Share in the comments.

What does it feel like to recover from a blood clot coverTo learn more about what it feels like to recover from a blood clot, visit here.

Are you suffering from depression after a blood clot? You’re not alone. For some tips to deal with depression after a blood clot, visit here.

To be a part of the private Facebook community, go here, and ask to join the group. Chat with you there.

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May 15, 2013

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,

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