HealthEVoices16 (Why It’s Kind of a Big Deal)

HealtheVoices16 Intro Cover

It’s no secret — especially for those who know me in person — that I am terrified of flying on planes. It’s also no secret that my fear doesn’t stem from long periods of sitting that may contribute to my blood clot risk – I really don’t think about blood clots when I am flying, even thought I regularly stretch my legs and request a Pre-Boarding Pass so that I can get an aisle seat. My fear is rooted in the fact that I am not in control of the plane, nor am I in control about what happens to it. Lack of control — combined with the fear of the unknown — will keep me up for days prior to any plane travel I have scheduled.

ae945163-1d80-44d0-97b1-5bbb85604e2eYet, in less than one week, I will board a plane to travel to Chicago for the 2016 #HealthEVoices Online Patient Advocacy Conference – and I could not be more excited about going. I was fortunate enough to attend the inaugural conference last April as the only VTE patient advocate and this year, I was invited by Janssen to not only attend, but to be a part of the planning committee as well. Janssen is graciously paying for my travel (flight, ground transportation) and my hotel stay while I am there.

So, you might be wondering, aside from the plane trip, what’s the big deal?

Well, first let me tell you about HealthEVoices16. It is a conference created by Janssen in partnership with Everyday Health for people like me to make an even greater difference in the lives of people like you. Since you’re here, you probably have a good handle on the fact that social media (Facebook, Twitter, blogs, websites, online discussion forums) is largely shaping the way patients and caregivers make decisions about healthcare for themselves and for their loved ones. HealthEVoices is the only conference created exclusively for online health advocates across a broad spectrum of health conditions. The mission of the weekend is to provide the tools, resources and inspiration to improve online patient and caregiver communities and expand reach even more. Attendees will have the opportunity to interact with other health activists and learn from experts in health, social media and advocacy. You can find out more about this year’s event and watch a pretty cool video here: HealthEVoices16.com

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When I stared this blog almost four years ago, I felt very much alone in my recovery from blood clots. As I began to process and understand the difficult journey that was ahead of me, I wanted nothing more than to reach out to others who might be feeling the same. I wanted to give others who experiecned a blood clot guidance – and ultimately hope – in what might be the worst time in their lives, so I created Blood Clot Recovery Network. As time went on and I felt less alone in my recovery, thanks to the robust community that you have helped to create here, I started to feel alone again, but in a different way. I felt alone as one of the few DVT and PE blood clot advocates. When I attended HealthEVoices last year, I found myself at another low point in my life. I was turned down for a job I wanted then, I was struggling to continue making a difference here at BCRN and I felt like I had nowhere to run to (save for nature and a weekend away) when I was overwhelmed with inquiries, requests and stories. On top of it all, I started to feel guilty for thinking about myself, feeling like I was letting the community down. I went to HealthEVoices a wreck, and not just because of the plane ride.

I still cannot believe how much one weekend changed my outlook on patient advocacy and gave me the tools I so desperately needed to continue doing the work I do at BCRN – and do it happily. I gained some valuable isights to combat compassion fatigue, tools to handle patient inquires in a wise and legal manner and information to establish or maintain a successful entrepreneurship and not “just a blog.”

More so than the tools and information I gained, though, were the connections I made. I connected with other advocates from a variety of different health conditions (oh yeah, I have social anxiety too so that was hard) who were going through the exact same things I was – despite our different illnesses. I wasn’t alone after all, I just didn’t know it. I left the conference last year feeling immediately empowered, newly invigorated and re-committed to my work as an advocate here at BCRN. I had some extra time before I flew home and I even took the train by myself into NYC and crossed a dream off my bucket list — visiting Central Park. <<P.S. the worry on my face is the result of hoping a) I make it back to NJ on the subway b) I don’t miss my flight and c) I don’t get lost in NYC>>

HealtheVoices16 Intro post NYC Central Park

This year, I cannot wait to re-connect with people I met in New Jersey last year, many who have become a source of daily support to me since that time. They include Debbe of the AFib Support Forum, Jill of Get up and Get Moving and Brian of A Marine and HIV. I’m also looking forward to connecting with Kevin of Rise Up to HIV who is not only a neighbor of mine, but a source of support and laughter for me during the planning process – especially when it comes to addressing my flight anxiety.  

I cannot wait to meet new people. I am beyond excited to – finally – meet another VTE advocate in person, that person being Lisa of the widely recognized Facebook Patient Support Group Surviving A Silent Killer. Lisa and I met virtually a couple of years ago after facing similar diagnosis and we, along with a few others, work closely together in terms of keeping our Facebook groups a safe place for all of you to be. The fact that she and I will be at HealthEVoices together solidifies in my mind that we will be able to collaborate even more to provide you with the best support and patient resources available. And, of course, I cannot wait to meet even more advocates representing other communities.

<<< Insert future picture of Lisa and I here >>>  

I cannot wait to make BCRN the best online patient support and advocacy community it can be for people recovering from blood clots.

Reader Writes In: What do you wish you had in terms of patient support from BCRN? How can I strengthen this community for you?

There is hope for healing and you are not alone,

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BCRN is Leaving on a Jet Plane to #HealtheVoices15

When I started this blog just about three years ago after suffering from DVT and PE that almost ended my life, I never imagined it would turn in to what it is today. I never imagined anyone would read it beyond a select few. I never imagined how my readership would grow to countries all around the world, including far away places like Australia and Israel, and that I would make friends in those far away places. I never imagined a Facebook community or the chance to connect with so many of you who have shared the same struggles as I have. I definitely never imagined it would lead to some great partnerships with people like NASCAR’S Brian Vickers and actor/comedian Kevin Nealon. And I never imaged I would be working in collaboration with the National Blood Clot Alliance and the International Society on Thrombosis and Haemostasis to raise awareness around the world in an effort to save lives.

I also never imagined my work here would bring me to a the HealtheVoices Conference in New Jersey this weekend, April 17-19.

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The conference geared at bringing together online patient health advocates (like me!) to help further grow and engage online patient communities. And, as you can imagine, I am really excited about that. Despite my fear of flying, I’m following these travel guidelines and leaving on a jet plane to New Jersey, and I am on my way there right now.

I’ll be learning about things like protecting against compassion fatigue (which is a very real concern and very pertinent for me right now), learning how to provide you with the best support through writing blogging and social media (which I already love to do), how to measure success online and things like how to provide the best support to an entirely virtual community, including changing the culture of medicine though social media. I’ve had a sneak peak of the other attendees and I am also very excited to connect with other advocates discussing other crucial health issues such as diabetes, lupus, mental health and rheumatoid arthritis among others.

You can follow me on social media this weekend using the hashtag #HealtheVoices15. Join the fun and be the first to see what;s happening on Facebook and Twitter.

Thank you all for your support, encouragement and for making this blog what it already is today. I can’t wait to learn some new skills, find out about new resources, connect with other online health advocates and share it all with you!

There is hope for healing and you are not alone,

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The HealtheVoices conference is hosted by Janssen and Everyday Health and Janssen paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

Raising Awareness with Everyday Health

Everyday Health is a website dedicated to helping others live a healthy and well-rounded life by providing a variety of resources and personalized wellness tools. Topics range in topic from depression to diabetes to vitamins to weight-loss to beauty to recipes and many more, including Deep Vein Thrombosis and Pulmonary Embolism. Blood clots (DVT and PE) kill an estimated 300,000 Americans each year. The number of deaths from blood clots  exceeds those from breast cancer, AIDS and motor vehicle accidents combined (Source). Sadly, blood clots are also a leading cause of preventable hospital deaths in the United States (Source) and are often misdiagnosed simply because people do not know the signs, symptoms and/or risk factors associated with them. Recently, I had the privilege of raising awareness with Everyday Health by sharing my story of DVT diagnosis, treatment and recovery.

Here’s a small excerpt of my interview with Jennifer Acosta Scott at Everyday Health:

A Mission to Raise Awareness of DVT

Now that Wyen’s life has stabilized, she devotes much of her time to educating the public about DVT and helping others who are going through a similar situation. A few months after her diagnosis, she started Blood Clot Recovery Network. The site provides links to medical resources and shares personal stories of people living with deep vein thrombosis.

“When it happened to me, I didn’t know the [DVT] symptoms. I didn’t know what to look out for,” Wyen says. “I want to spread the word that you can be young or old, you can be any body size, any body type. You can read the site and file the symptoms and signs away. If it ever does happen to you, hopefully something will trigger in your brain — I should get this checked out. [Read More]

Please read the entire story and share in your networks. Raising awareness saves lives!

Also be sure to connect with Everyday Health on Facebook and Twitter.

Thank you to Jennifer and Everyday Health for sharing my story and most importantly, for raising awareness about DVT and PE, including the signs, symptoms and dangers associated with blood clotting.

There is hope for healing and you are not alone,

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Six Months of BCRN Blogging

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My first Blood Clot Recovery Network post was on May 1 of this year – that’s just about six months ago. As many of you know, I have actually been blogging for a few years over at Words to Run By, but decided to begin this venture after suffering from a DVT turned PE in June of last 2012 that nearly claimed my life and left my world as I knew it then in devastation. Six months ago I started this blog to share with others about the signs, dangers and effects of blood clots as a result of my own experience and to spread a message of hope for healing from the physical, mental and emotional trauma of such an injury to the body. I was unsure, at the time, if I was making the right move in beginning a second blog still, I felt compelled to share with others what had happened to me for the above reasons. When I was discharged from the hospital after my PE, I felt alone, uncertain and terrified of not only what did happen, but of what would happen. I didn’t want even one other person to feel that way and not have a resource to turn to. I can’t believe it is six months of BCRN blogging since then!

As many of you also know, I am also the grateful recipient of Blog Genie’s Blog School Scholarship, which began this week. If you’re a blogger and not familiar with Blog Genie, head on over to the site to sign up for free emails, which include some awesome tutorials and blogging advice. While I am primarily enrolling Words to Run By in blog school for the time being, I plan to apply the same lessons to BCRN to continue to improve this blog and make it the best it can be for you, my readers.

One of the things I [re]discovered last night as I was learning to read stats in Google Analytics, is how to determine just how many people do read this blog. And I was shocked at what you have made BCRN this far.

Here’s a rundown for you:

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While this blog is very different from my personal blog, it is not entirely an accident on my part. I wanted to create a blog that was very specific in content (recovering from a blood clot), but didn’t want to lose my personal voice in doing so. In a way, this blog has been easier to create (but not always write!) because I have already made mistakes and with BCRN, I have had the opportunity to start fresh, avoiding some of the “rookie” blogging mistakes (not that I don’t have a long way to go, thank you Blog School). It’s been fun for me to [try to] do the things I wish I would have “done from the beginning.”

One of the things that jumped out at me in terms of stats (and no, stats are not everything, but they give a blogger a good idea of what’s happening behind the scenes), was the length of time readers spend on my site. One hour and 49 minutes here (this month) compared to 54 seconds on Words to Run By. That’s pretty significant.

After reading this I mentioned in passing to my husband, “Wow. Someone must just open my site and leave their browser open for an hour!” I mean, who hasn’t done that, right?

He replied, “Uh, no. Probably not actually. You know what it is instead? They’re scared. Think of how you were when you first got out of the hospital. What was the first thing you did?”

Then, it hit me like a wrecking ball.

The first thing I did when I was out of the hospital (and able to stay awake for more than 30 minutes at a time) was scour the internet for information. I was like a sponge and I could not soak up enough information. I searched for information about blood clots, DVT, PE, APS, diagnosis, treatment, prognosis, but mostly I searched for other people who had experienced the same thing. People like me. Stories were hard to find, few and far between. Stories combined with good, tangible, relevant information were even harder to find. No information was too insignificant, no resource left unturned yet, something was missing – a face to blood clots; a story I, as a person living in the real world with real experiences and real fears, could relate to.

I set out to change that.

And six months later, here we are. The support, encouragement, love, hope and yes healing, I have received has been invaluable to me, not only as a writer, but as a survivor. Thank you for that BCRN. Thank you for helping to make these past six months even better than I ever dreamed they would be.

As a thank you, I would like to give away a Special Red Ribbon Survivor Bracelet to one of you. Please enter below and spread the word among your networks (unless you don’t really want to share).

a Rafflecopter giveaway

Here’s to six more months and hopefully many, many more after that!

* Please note, the winner has until October 11th to claim his/her prize or I will select a new winner and post it here.

There is hope for healing and you are not alone,

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A Survivor Speaks: P.E. Isn’t Just for Physical Education by Trysh

Survivor Speaks Trysh

A Survivor Speaks: P.E. Isn’t Just for Physical Education by Trysh Thompson

Walking to my car winded me. This was abnormal.

Emptying the dishwasher winded me. This was really abnormal.

But, being the granddaughter of a hypochondriac (hmm, I wonder, did she have Munchausen’s?), I blew it off. On the flip side, I’m also the daughter of a man who had everything wrong with him. He brought all that upon himself with poor choices though, so still, I blew it off. Besides, whatever it was would be fine the following day.

Ha.

The following day I spent most of it in bed. When I finally emerged from the bedroom, I took the twenty step walk to the living room and couldn’t breathe. That’s when I knew this was bigger than an allergic reaction or a panic attack and I had to go to the hospital.

My husband stayed home with our daughter and put her to bed, I took off, cell phone in hand and said I’d text from the ER. I honestly expected to be home in a couple of hours.

I walked into the ER and the lady behind the glass walls (really, is that necessary?) asked me how she could help me.

“I can’t breathe,” I panted. “That walk from the car about damn near killed me.”

I repeatedly tell my daughter the world does not revolve around her. Let me tell you, when you tell someone in the ER you can’t breathe, the world actually does revolve around you. Into a room I go, and within five minutes, I’m hooked up to an EKG, they have ordered the IV, and the admissions lady brought the paperwork to me.

The monitor above my bed showed a BP of 181/110. I looked at the nurse and said, “That can’t be mine. That was the person before me, right? Cause I’d be dead.” She shook her head, “No honey, that’s you.” That’s about the point I got scared.

The doctor comes in to talk to me, he’s pretty nice. He’s telling me he’s going to get an IV started and order a whole bunch of tests. Okay, whatever, dude, cause I’m really in no position to contradict you.

I don’t understand the line of questioning. I get asked about chest pain. No, I didn’t have that. I hear them mumble that this isn’t normal. WHAT THE HELL ARE YOU TALKING ABOUT?

Well, three hours, a blown vein, an IV, four vials of blood, a d-dimer score of 4110 (it’s negative if it’s under 400), a chest x-ray, a chest CT scan, and another doctor later, I have a diagnosis.

Bilateral pulmonary embolism.

I watched enough House, M.D., I knew what a pulmonary embolism was. Quite frankly, I’m smart enough to know what the bilateral part meant, but, well, I blanked and went, “I get the pulmonary embolism, but what’s bilateral?”

The nurse and doctor, in complete unison, “Both lungs.” Ohhh. The doctor continued, “And the one on the left is freakin’ huge.” Freakin’ huge, is that a medical term?

After the doctor leaves (he’s the second one, the one who ordered the tests didn’t stick around long enough to find out the results), the nurse goes, “I was suspecting PE the whole time. But most people who come in with them are a lot less healthy than you.” Uh, thanks, I think.

I looked at her, “So, with this, I don’t get to go home tonight, do I?”

She laughed, “No, you’re not. And most likely not tomorrow either.”

Well, crap. There went my weekend.

During all of this I was texting my friends, my husband, keeping them up-to-date. My battery was practically dead at this point, but I managed to eek out one more text – to my mother, who was on vacation. “Hey, Mom, I don’t want to freak you out or anything, but I’m in the hospital. I have blood clots in both my lungs. But I’ll be okay.”

I’m taken to my room, and I get some of the worst sleep I’ve ever had. Let’s face it, if you slept well in a hospital, you were sedated. There was a woman down the hall screaming (she was, incidentally, sedated the following night), there were the vital checks every four hours, the 6 a.m. visit from the vampire who took six vials of blood … yeah, hardly restful.

I honestly felt fine, at least laying in bed. I didn’t understand all of it.

My husband comes up the next day with my cell phone charger (thank God!), some pajamas (another thank God!), and the kiddo. The kid took one look at me on the oxygen and flipped out. Great. It’s not like I had a choice, but she would not get anywhere near me. It actually really upset me.

My mom called to tell me they were changing their plane reservations and coming home early. I told her that wasn’t necessary, but let’s be honest, you can’t tell your mom anything. Especially my mom.

I did some googling about PEs. Thirty percent don’t live long enough to hear their diagnosis. WHAT? And I walked around like this for damn near two days? Wow. I also remembered a friend of mine’s mom died of a PE when she was in her early 40s. Oddly enough, I wasn’t freaked out. My stepdad accused me of not completely understanding the severity of what happened to me. I assured him that yes, yes I did.

But what good did it do me to wallow in it, I mean, it was what it was, I couldn’t change the fact it happened. (Side note, the survivor’s guilt came a few months later.)

The doctors told me they were going to test me for something called Factor V Leiden, a blood clotting disorder. If I was positive for it, I’d be on blood thinners for the rest of my life. Nice. But they usually test for it when someone as young as I was (31 at the time) comes in with a DVT or a PE. Okay, well, it’s another blood draw. Have fun.

I left the hospital after two days and a steady stream of visitors. Hell, you almost die and everyone wants to come see you! I actually initiated the leaving the hospital, I made them do my vitals without the oxygen. Since they were stable, the PA told me I could go home, so long as I was willing to give myself blood thinner injections until the Coumadin leveled out. Hey, I was cool with that, because this meant my daughter wasn’t afraid to come near me anymore! And I could do nothing at the hospital, or nothing at home. I’ll take home for $2000, thanks Alex.

I wasn’t allowed to go back to work until my INR leveled out, which took two weeks. I spent those two weeks online, looking up PEs, PE recovery, Factor V Leiden, DVTs, everything.

I read almost everything there was on Factor V Leiden. My mom was flipping about it, and she was praying it came back negative, she didn’t want me on blood thinners forever. (At the time, I was like, “eh,” now, having been on them for what feels like forever, free me!) But I wanted it to come back positive. Not so much that I wanted a blood disorder, but because I wanted answers as to WHY this happened to me. Plus, looking at the list of symptoms, I saw everything from which my dad suffered. Hmmm.

Ten days (and a phone call to the hospital and the doctor’s office) later, I found out that I was, in fact, Factor V Leiden positive.

In the years leading up to my father’s death, there had been some bad blood between us. Now I had proof that he had, in fact, given me bad blood. Thanks Ralph.

Luckily I am only heterozygous, so only one parent gave it to me. This also means that once I finish this course of blood thinners, I don’t have to be on them forever – at least not until I have another one, which research shows will most likely happen. Oh goody, something to look forward to.

But, it also means the deck was stacked against me. Factor V Leiden makes an individual 5-7 times (not percent, times) more likely to develop a blood clot. Fantastic. Smoking increases those chances, but thank God for small favors, I’m not a smoker. What also increases those chances? Birth control – a whopping 35 times more likely. Was I on birth control? Yes. Did I stop it after the PE? Yes.

What scared the hell out of me more is the thought I passed this to my daughter. Alas, we won’t find out for a long time. They don’t test asymptomatic children. Ugh.

So, there it was. Bad genetics combined with my desire not to have any more kids that led to my downfall. Who knew?

Worse yet, being Factor V Leiden positive, I should have been on blood thinners the whole time I was pregnant. Being that I didn’t know at the time, I wasn’t. So I looked up the things that can go wrong – it’s not pretty. Amazingly, I had no complications with her. Knowing what I know now, that is nothing shy of a miracle.

My life was completely upside down after that. I mean, I couldn’t eat salad because of the Coumadin and the fact my INR numbers were all over the place, I still couldn’t breathe, I had to wear a MedicAlert – something I never expected to have to do, and I had to go in for weekly INR checks – which were a pain in the ass. Anyone on Coumadin will tell you that.

A week after the hospital discharge, I was walking around the grocery store, and once I got the far end, the chest pain hit me. I clutched my chest and leaned against my cart, waiting for it to pass. It takes a lot to accept that your body just isn’t ready to do the things it used to do. Things that seemed like nothing before take everything out of you. For months on end, a Saturday morning worth of errands led to a Saturday afternoon laying on the couch, because I was simply exhausted.

Six months later we learned the “freakin’ huge” clot didn’t dissolve completely, and since the Coumadin wasn’t therapeutic a large part of the time and therefore pretty much worthless, new blood clots were forming and attaching to the clot. Result: I had to change blood thinners. Moreoever, I’m sort of freaked out that I walked around with that clot in my lung for months on end. How is that possible???

Since then, I’ve had a tubal, so I don’t have to deal with hormone-containing birth control anymore. Like I’m going to give the Factor V Leiden a leg-up again. Not on your life. Most importantly, not on my life.

Every ache and pain in my chest freaks me out, for fear it’s happening again. You’d think that being on blood thinners would alleviate that fear, but it doesn’t – after all, look how well Coumadin worked for me. I can’t even begin to imagine how much I’ll flip out once I’m off the drugs.

Dammit PEs suck.

Come to think of it, so did PE class in school.

PEs just aren’t good all the way around.

Connect with Trysh through her blog or the comments below!

 

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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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