Post-Thrombotic Syndrome: ‘Good Things in Life are Hard to Find’

PTS Graphic

I try to see the good in life, but good things in life are hard to find. Especially when facing the unknown of post-thrombotic syndrome.

I was blown away. It’s been almost ten months since I was admitted to the emergency room in the middle of the night with a DVT (blood clot in the leg) and PE (blood clot in the lung). That’s almost one year. That’s almost halfway through the projected recovery time.

Not a day goes by that I don’t think about, wonder about, feel or cope with what happened to me. Even when I try not to think about it (or happen not to), something reminds me about it. I get a pain in my calf or out of breath walking up the stairs. I sneeze and my lung cramps or I laugh too hard and start coughing. Usually, I’m reminded of what happened as soon as I wake up in the morning and stand on my feet before I can hobble down the stairs. One aching step at the time. The pain starts in my toes and spreads up my calf from there, a dull throbbing before the blood gets circulating as best it can.

My groin area is clear of blood clots now and should continue to be as long as I am on blood thinners, which is good – the farther away from my heart, lungs and brain the better. But, you see, I still have a chronic clot in the femoral vein of my left leg, right behind the knee cap. It may never go away. It is completely up to the body to either a) dissolve the clot, b) turn it to scar tissue so it can bore a new path through it or c) neither of these. Blood thinners don’t “heal” a blood clot. They just prevent more from forming, hopefully. I’m still waiting to see what my body decides to do. Neither I nor the field of medicine gets a say.

A constant reminder.

You’ve taken away everything, and I can’t deal with that. Just when things start to get better, another layer of worse gets thrown in the mix. I am dealing with the early effects of Post-thrombotic Syndrome or Venous Stress Disorder or PTS.

While some people who have had a DVT recover completely, others may be left with some symptoms in leg like swelling, pain, aching, heaviness, and cramping due to disrupted blood flow. The pain and swelling can be disabling. Symptoms in the legs are typically worse after standing for a long time. A compression stocking, although very unfashionable, helps the pain and swelling.  In severe cases, breakdown of the skin and fat may occur and ulcers may form.

For me, the emotional effects are most overwhelming right now. I’ve had to adjust my level of expectations, at least for the time being, and allow for my leg and lung slowly recover. I was already bad at adjusting expectations, in particular lowering them. I hold myself to a high standard – in life and in running. I can’t expect to run like I did, yet, I do.  As I get closer to the anniversary of my PE, I can’t sleep; I toss and turn or wake up gasping for air, afraid I am suffocating again. My mind is hard to quiet; my pulse races and I have to remind myself of where and when it is.

Being strong, holding on. Can’t let it bring us down. As I move through recovery – sometimes things are foggy, and other times, things are clear as day. I spend a lot of time thinking and wondering and hoping things get better. And I have no choice but to look at this as a new phase of healing, something I have to go through to get to the end result. I can’t let my mind wonder “what if” for very long. The what if’s are unimaginable and the things that tend to keep me up at night.

It’s not over.

Until the next mile marker,

Blood Clots: The Most Important Post I Will Ever Write

The number one search term leading people to my blog is ‘difference between blood clot in leg symptoms and pulled calf muscle symptoms’ or some variation of it. Almost daily I watch the page views skyrocket on Could You Have a Blood Clot? Information is lacking on blood clots and blood clot symptoms. I didn’t know anything about it, until I suffered from the massive trauma and devastating effects of a blood clot in my left leg that broke free, traveled through my heart and lodged in my left lung. Blood clots (deep vein thrombosis DVT and pulmonary embolism PE) affect upwards of 600,000 Americans each year and cause more deaths each year than the more well-publicized occurrences of breast cancer, AIDS, and motor vehicle accidents, yet they are virtually unheard of. In terms of blood clots, [this might be] the most important post I will ever write.

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March is Blood Clot Awareness Month. And, if you don’t know what to look out for by reading my blog, then I haven’t done enough to make you aware.

Sometimes, mostly late at night when I can’t sleep (I have not slept right since I got sick and I often wake up thinking I can’t breathe again), I scour the internet searching for information. My mind is like a sponge, soaking up everything I can find out blood clots, but the information is hard to come by. What I do find is a lot of survivor stories – people like me who are either young, active, healthy or a combination of them all – individuals who have been knocked off their feet by the damaging effects of a dvt or pe and are struggling every day to live their lives. And they do.

No matter what survivor’s story I read, I have found that all of us, who have chosen to speak out about blood clot awareness, are passionate about it. I can’t even describe to you anymore the excruciating pain I felt during and after my blood clots (which is why I am so thankful Dad told me to write this post right away). I know it was the worst pain I have ever felt in my life, but I also know my brain has repressed that exact feeling. Today, I handle pain differently (and I used to have a high tolerance for physical pain), in that mostly I can’t handle it. The slightest thing hurts and sends me into tears or destroys my focus. The nurses in the hospital swore to me that surviving a blood clot in the lung was more painful than childbirth (so, I should be good there?!). One-half of clot patients will have long-term complications and one-third will have a recurrence within 10 years, which is perpetually in the back of my mind and terrifies me. Among people who have had a dvt, one-half will have long-term complications (post-thrombotic syndrome) such as swelling, pain, discoloration, and scaling in the affected limb. Some will have open sores in the affected limb, known as ulcers. (www.cdc.gov)

When I got hurt (damage from a dvt or pe is actually considered a bodily injury and not a sickness), I was a runner, I lost weight and was far out of the risk for diabetes zone, which I had previously found myself in. I didn’t think it could happen to me. I did all the right things, right?

Please listen to me when I say – Please listen to your body because it can happen to you! We as runners think we can handle pain, that it’s normal, that there is nothing wrong, but please know what to look for because you never know when something might, in fact, be horribly wrong.

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Symptoms of a pe (pulmonary embolism or blood clot in the lung):
  • 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

PE is life-threatening complication of deep vein thrombosis, please seek emergency medical care immediately, as it can be fatal!

Symptoms of a dvt (deep vein thrombosis or blood clot in the leg):
  • 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. If something doesn’t seem right or you are at all concerned, make an appointment with your primary care physician to have it checked out before symptoms could potentially get worse and cause problems with your lungs or heart.

You’re at risk for a dvt (and potentially a pe) if you are sitting for long periods of time, such as when driving or flying; have an inherited a blood-clotting disorder; are on prolonged bed rest, such as during a long hospital stay or paralysis; have had an injury or surgery; are pregnant; have cancer; have inflammatory bowel disease; have heart disease; take birth control or hormone replacement therapy; have a pacemaker or catheter; have had a dvt or pe previously; have a family history of dvt or pe; are overweight or obese; are a smoker; are over 6o years old; are tall; or are a female.

That’s a lot of different people.

If you experience any of the pe and dvt symptoms at the same time, please seek emergency medical care. If you are alone, call 9-1-1. Don’t wait to see if you get better.

This is serious.

The complications from a pe are extremely painful, stressful, damaging to the body and mind and can last a lifetime. I am about ten months out from my pe and I am still recovering. The total recovery time for me is one to two years, and it all depends on my body. Up to two years. That’s not something to be taken lightly. Everything has changed for me. I have to pay attention to what I do, what I eat, what medications I take or don’t take, what kind of exercise I do. This has impacted my family, my friends, my job and so many other things that I never even considered before now. The psychological and emotional ramifications are equally damaging and ones that I am still faced with daily. And, it’s not even my fault, although there are still times when I demand to know “what I did to deserve this.”

Still, I am grateful to be here.

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I don’t want to let my dvt and pe injury define me in a negative way, yet to some extent, it will make a difference to the person I am and to the person I become from here on out. I don’t believe this occurrence is something I can just sweep under the rug and day, “Well, I survived that, but it’s not defining me so I’m moving on with my life.” Yes, I will keep moving on with my life and keep trying to find the positives, but there is something to be said for awareness.

It’s like cancer or a brain injury, a heart attack or stroke – people don’t just survive those things and then pretend it never happened. If they did, organizations like the American Cancer Society and American Heart Association wouldn’t exist. And yet, except for a few small organizations, no one talks about blood clots.

Except for those who have survived. I am here to tell you, listen to your body, be aware and don’t wait. If you or a loved one has experienced the devastation of a blood clot, there is hope. Life will go on, but yes, there is Hell to conquer first.

If you do nothing else, please share this information with at least one other person – in your family, your circle of friends or workplace. Send a tweet, share it on Facebook or even email it – just pass it along. If you don’t want to do that, please store it in your file of information just in case you need it some day. You never know whose life you may save in the process.

Thank you very much to The Clot Must Be Fought for the graphics that appear in this post and for helping to promote awareness about blood clots and their effects. The Clot Must Be Fought is fighting blood clots with awareness, creativity and a group of people who have fought for their lives. Please consider purchasing an awareness band to help support their organization and continue to spread the word! You can also like them on Facebook to stay up to date with information, awareness and advice.

Until the next mile marker,