Post-Thrombotic Syndrome (PTS)

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.

 

Comments

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  2. I just happened to stumble across your blog as I am a Bilateral PE survivor. It’s been 3 years and I’m still paranoid about everything. Thanks how I happened to come across your site today because I was woke up with a terrible cramp in my leg… Well I really just wanted to say I love your blog and it was right on point.

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