I wish I had plantar fasciitis instead of a blood clot

I’ve been staring at a blank computer screen for just about four and a half hours now, and all I can think of to describe the last year is, “I wish had I plantar fasciitis instead of a blood clot.”

Yes, you read that right. I wish I had plantar fasciitis. I wish I could say that’s all it was, better luck next season, you’ll feel better after some PT.

Why would I wish that? Because at this time last year, I thought I had plantar fasciitis and then I almost died when it turned out to be a blood clot in my leg that broke free, traveled through my heart and lodged in my lung as a pulmonary embolism instead.

The truth is the last year has been nothing but a roller coaster ride – not to sound cliché – of emotions. I have felt angry, alone, confused, scared, betrayed, depressed and been in more physical pain than I ever thought possible. It is said the pain of a PE trumps child birth and while I can’t compare the two, I wouldn’t question it if someone ruled in favor of the PE. Now, I am dealing with the emotional trauma of facing a year (or more) recovery period and lifelong treatment of a condition that will never really go away. To some degree, I will always live with the expectation – and fear that goes along with it – that I could, more than others, develop another clot, and I question whether or not I would make it through a second – or third, or fourth – one.

It took me 363 days to run again – without pain or fear or gasping for air in four and a half seconds. I ran a successful two miles for the first time, two nights ago. Successful in that I finished standing on two feet, breathing and able to walk the next day. It’s funny, for all I read about competition and beating the other gal and making it faster, stronger, longer – the only thing that truly matters to me now is that I can run, or walk or breathe or think for that matter. I spent 12 long months not being able to walk very far some days, breathe without pain and unable to remember simple things like why I got in my car or what I was supposed to do with my time that day, let alone which highway would take me to my Dad’s house or that I had to be told something a minimum of 56 times in order to remember it. There are parts of the last year which have completely escaped me.

It was hard and it's not pretty, but I feel a gigantic feeling of relief 363 days after my last run.

It was hard and it’s not pretty, but I feel a gigantic feeling of relief 363 days after my last run.

I set out to write an angry post – because I am angry – about what happened to me. It doesn’t seem fair. And yet, 1 in 3 people don’t survive a PE. In the last two days, I have received two private messages from readers who have lost a friend or family member to a PE. I’m the third one. Why me?

From anger, I move on to complete grief and sadness. Many days, I am overridden with guilt that I am alive when so many others cannot say the same thing. I want to know why, how and when things will return to normal. But for me, there is no returning to normal, there is only a new normal, which I hope someday I can adjust to.

In speaking with a friend this weekend, I said, “If only I had known, I wouldn’t have had this happen,” to which she responded, “How were you supposed to know?” And she is right. How was I supposed to know? So many young, active, healthy people do not think a DVT or PE can happen to them and that simply is not true. It can. It will. And more people will die because most people simply do not know.

From anger and sadness, I turn to sheer determination to spread the word about what happened to me. I tell everyone. I have started a new site dedicated to Blood Clot Recovery, although I still plan to talk about my experiences here because it will always be a part of the new me.

I almost gave up on this blog and running, until two nights ago when I ran those two miles and realized running doesn’t have to be perfect. I’ve been gone for 363 days and it wasn’t easy and I did (and probably still will) think I would be better off not having to deal with anything that happened to me – the pain, the anger, the grief. But, then I think of one thing, there is someone else out there, going through where I have already been and I want to be there to say, “Don’t give up, because it does get better, little by little, day by day.” And you may take seven steps backwards to every one you take forward, but one day you will look back down the road and think, “I can’t believe how far I’ve come.”

It may take years for me to ever gain a sense of peace about what happened to me. I am often fearful of what happened and what is to come. Right now, I know I cannot face the pain of another PE. But, I also know, my life is more meaningful than it has ever been – because I have this life. I don’t know why and I don’t know where, when or how, but I do know I am here for a purpose and in the coming months and years, I hope I find that purpose, because I was not given a second chance without one.

Me & Judi on the day I threw my blood clot, one year ago.

Me & Judi on the day I threw my blood clot, one year ago.

Until the next mile marker,

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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,

Know the Facts About DVT

March is DVT/Blood Clot Awareness Month

Deep vein  thrombosis or DVT is a condition that involves  blood clot formation in the veins, typically of the legs or groin areas. The most  serious risk associated with deep vein thrombosis is that part of the blood clot will  break off, travel along the veins, and get lodged in the lungs or heart, causing a potentially fatal pulmonary or coronary embolism.

According to the American Heart Association, as many as two million Americans are affected  by deep vein thrombosis each year. Of those who develop pulmonary embolism, up to 300,000 will die every year. More Americans die each year from DVT/PE than from breast cancer and AIDS combined. Pregnant women are five times more likely than non-pregnant women to develop DVT. Yet, according to a national survey sponsored by the American Public Health Association, 74% of Americans have little or no awareness of DVT. (Source)

Here’s what you need to know:

largedvtinfographicCourtesy of: Horizon Vascular Specialists in Maryland

What about you – did you know what a DVT was before now? Have you or a loved one experienced this condition? Please share!
Until the next mile marker,