I am two years into my recovery from a DVT and subsequent massive PE that occurred in early June 2012. The incident left me reeling – not only physically, but mentally and emotionally as well.
It is difficult to explain what this recovery was like. It was not like taking six, eight or even 12 weeks off for a stress fracture or shoulder surgery. It’s not like having the flu or bronchitis or pneumonia that just won’t go away. It’s not like fighting an infection or a nagging running injury. No matter how much you think it might be, it’s just not. What it is like (so I’ve been told via comparison) is going through chemotherapy, recovering from a heart attack or learning to live again after a stroke. Cancer. Heart Attack. Stroke. Blood Clots. Except recognition of the last one comes far less often than the predecessors.
Public awareness of the signs, symptoms, risk factors and effects of blood clots are are not widely known, both is the public and medical sectors. Yet, blood clots kill an estimated 300,000 Americans each year (source), which is more lives than those claimed by AIDS, car accidents and breast cancer combined. Blood clots are also the leading cause of preventable hospital deaths. Every six minutes someone in this country will die of a PE, or blood clot in the lung. The lifelong effects of a DVT, or blood clot in the leg, can be devastating and far-reaching ranging from constant pain and swelling to skin ulcers physically and PTSD emotionally. Often, a diagnosis of a DVT or PE is a result of an underlying condition, sometimes previously unknown, such as hereditary or autoimmune clotting factors, lupus or cancer. Sometimes, the diagnoses of a DVT or PE comes as a result of pregnancy, sitting for long periods, smoking or weight gain. Sometimes, the diagnosis of DVT or PE comes out of the blue. Blood clots can happen to anyone, of any size and physical ability, at any age.
At my two-year follow-up, my hematologist stopped what he was doing and said to me, “You look like I imagine you did before this happened to you. I didn’t know you then, but I imagine this is more of the real you.” He was silent for a moment and then continued, “I just don’t see many people come back from as ill as you were. You’re really lucky to be here.”
Two years post-PE, I would agree that I am physically recovered from what happened to me. I can breathe without oxygen, walk without assistance and get out of bed every day. While I am not back to running yet, I feel like I could start exercising to the best of my ability again. Before this time, the desire to even try was gone. To say I am “healed” is another story. I will constantly need to have my blood monitored via intravenous draw (weekly to monthly) to monitor my blood clotting levels due to the disease that caused them to go awry in the first place; manage medication; deal with continuous pain and swelling in my affected leg, chronic fatigue and constantly be under the watchful eye of specialists for diseases like Lupus, mixed connective tissue disorder and rheumatoid arthritis, not to mention another clotting incident. I know running saved me physically. I believe training for long distances and being healthy before this happened is what helped my body physically overcome what is the worst thing to have ever happened to it.
Two years post-PE I would agree that I am very much in the middle of recovering from the emotional and psychological trauma of DVT and PE. I am nowhere near recovered from that – and I don’t yet anticipate when I will be.
Talking about what happened to me and advocating for increased blood clot awareness has become a primary focus in my life. I find that most people do not know what a DVT and/or PE is and if they do, they do not think it is something that could ever happen to them. I find that the athletic and health communities in particular – communities that I am still very much engaged in – are particularly unaware of the dangers associated with blood clots. Perhaps most frightening is that people just do not know what the symptoms of these conditions are, more proof that we need more awareness. I am grateful to have recently had the opportunity to share my story and awareness efforts in an interview with Everyday Health as part of my ongoing efforts. Please read and share!
While I have come so far in my recovery, I have some distance to go, but I know there is hope for the future. Hope that I will continue to recover and hope that the world will get out about blood clots, their symptoms and their devastating, often deadly effects. And, while I will always face the burden of health and an uncertain future in terms of it, I know I also have much to be grateful for. I am one of the lucky ones who survived.
Tell me about you. What has been the toughest recovery period of your life? How have you overcome physical struggles? Mental struggles? Did you previously know about DVT and PE?
Until the next mile marker,
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Hi Sara,
I can’t say that I ‘know’ or even ‘understand’ your experience, but I can empathize. I think you know this story already, but I am confident (was never diagnosed) with major depression. I really suffered hard for about 2.5 years. I think the part I can relate to with your experience is the recovery. Even after I was out of a job and career that made me so unahppy, it took me a solid 6 months to finally feel like my old self again. Somedays are still hard, and I am afraid to fall into that spiral again. I think that is the other thing I can relate to, is the fear of not preventing it….
I want to say that you are an inspiration and that I hope you keep writing and educating us. Sometimes I have to catch up, but I know I’ve learned so much from your blogs and I am GRATEFUL to have that information at my fingertips.
Hugs!
Shannon
Hi Shannon! Thank you so much for reading and for sharing about your recovery experience. While they may be different experiences, yes, we do share something in common in overcoming a difficult time in our lives and for that I am also grateful to you for sharing with ME! I am also grateful for the support you have shown me and WTRB over the years and I thank you for always being a cheerleader in my corner.
Thank you!
Such an important read… Another blog had a scare with a blood clot but not like you… I forgot to tell her about you – I must do that!
Hi Jody! Thank you, as always, for reading. Yes, send her my way! I would be glad to connect with her. Hope all is well and thank you again for your support.
Excellent post. Awesome woman. So excited for you and this positive approach you have taken from something so, so scary. You WILL change lives, no doubt. Very proud to call you my friend!
Steph, I am proud to call you MY friend and so glad we connected through the blog-world. I am really glad to know you and share so many things with you! Thank you for your kind words. 😀
Two years??? Has it really been that length of time already??? That means I’ve got six months remaining until I too reach the ‘magic’ time frame given by my medical team as a marker for reaching a ‘normal’ recovery. As we both know, seldom does a normal recovery occur. Although, I will admit, recovery from previous events was never as difficult as it has been this time. Then again, I’ve never had one as extensive or damaging as this before.
As I’m writing this, I can’t help but reflect back on the time we’ve been blessed to share through this. How fortuitous it was that I had just been educated by my son on the use of hashtags in an app he’d just introduced me to. Thank you Instagram for bringing us together to share in this journey. Look at where we were then and where we are now. What was once a solitary, lonely path traveled quietly and alone is now one stumbled, limped, gimped, walked and the quiet now filled with open discussion that only true friends can share.
Together we now have Words To Run By as we’re both Living-Not Just Surviving (like how I did that?? Lol)
Hi, my friend! YES! It has really been two years, sometimes it feels like not at all and sometimes it feels like so much longer. It is strange how the body and mind work to remember and forget (and keep remembering?!) certain things. For example, I forget exactly what the pain of my DVT/PE felt like so I credit my Dad with saying one day, “Write this down now because you never know, it might help someone someday,” and I hope it has! My brain has forgotten exactly what it felt like to have a PE, but I can tell you I remember it was THE WORST pain I have ever felt in my entire life. I’ll be going back through my journal entries for some more inspiration to keep writing…..
I have also been reflecting on the time we’ve shared and getting to know one another through first Instagram, the wonderful world of blogging, then Facebook, emails and texts – and hopefully a race someday when we’re both seeing better days (which I know we will)! I am very grateful to call you my friend, and I am grateful for the talks we have shared about the similarities – and the differences – in our lives. As a complete stranger, you were there for me in the beginning of my recovery and I was certain 1) I was alone and 2) I would never, ever get through it. I hope I can be just a little bit of the inspiration to someone else has you have been to me.
Here’s to more Words and Living as Survivors from both of us! 🙂 Have a beautiful Sunday.
What a powerful story and testimony. You are def blessed and God has awesome plans for you. When I was 29 I was dx with Colon Cancer…not something a 20 something thinks of for sure. At 45 now, it’s pretty incredible to see how I’ve been a part of such an awesome plan and purpose HE had for me. Blessings! 🙂
Hi Sara! I am writing to thank you very much for being such a strong advocate for DVT. I am still running, and after recently completing a marathon (Erie Presque Isle on 9/14), I noticed that my left leg was not recovering as expected. It was very sore and my left ankle was extremely swollen. I went to the doctor; he ordered an ultrasound, and they found a clot in my “superficial” vein, called SVT. Treatment is daily asparin, heating pad, (going OFF the Pill, since after all, I will be 40 in two weeks) and compression socks. I probably wouldn’t have done anything about this if it weren’t for you and your reminders! THANK YOU!
Thank you for your post… I have just seen your blog (from facebook with the blood clot recovery network) and I will say… I am scared to death of another DVT and PE…. I went through so much with it and continue to see the side effects of it…
Thank you for your positive perspective of the post and survival of it
Hi Ashley! Thank you so much for reading. I also worry about another DVT and was just in the hospital yesterday to have a scan because I was afraid that is what I had. It did come out negative – this time, but you are right, it is something I always worry about. My best to you in your recovery. Again, thank you for reading!
Sara,
Thanks so much for all of your efforts…my world was turned upside down 8 months ago with acute bilateral pulmonary embolism. I am 54 and had no risk factors…the doctor in the ER told me, my son and my husband I would not make it. My vitals were 84 Spo2 and heart racing 165 bpm which they were unable to stop. They then administered a clot buster. Needles to say it was very effective yet can also be very dangerous. For eight months thins have been improving steadily and just had a check up with my family practioner…he said everything looked great.
Yesterday, for the first time I experienced shortness of breath just walking down the hall…is or can this be common?? I was pushing myself very hard two days prior…it is so scary.
Thank you for reading, Denise! I am very glad you stopped by and thank you for sharing your story. I found I had shortness of breath off and on throughout my recovery, especially if I was active. I would monitory it for signs of something serious, though as shortness of breath is not something to take lightly. If you ever can’t recovery with rest or you have chest pain, please seek medical assistance. I am so glad you are here to share your story, and I wish you the best in your continued recovery. Wishing you and yours a very happy holiday.
Hey Sara,
This sounds that you are very brave and I can’t imagine how much hard this for you. Yes, this is true that most of the people doesn’t know about PE or DVT. So thank you sooo…. much for helping other and awareness about PE or DVT is most important to beat them.