Three years ago, my life changed forever in ways that I could have never of imagined before that day. I had just kicked off a new marathon training season by running about two miles with my best friend and although I was slightly discouraged (my knee hurt again and I was out of shape), I was looking forward to what was going to be a great season.
I stumbled through the weekend, my supposed-knee injury getting worse by the minute. I had no idea anything was wrong besides overdoing it on my run Saturday. I didn’t know the symptoms of DVT and PE, even though I had heard of both before. By Sunday afternoon, I couldn’t speak in full sentences, couldn’t lay flat and couldn’t walk. By late Sunday night, I was in the ICU of the hospital with an extensive DVT behind my left knee and a PE in my left lung. I was lucky to be alive as it was and nowhere near stable. I was in the worst pain I had ever experienced in my life, I was scared and I had no idea what was happening.
In the coming days, I was diagnosed with antiphospholipid syndrome, an autoimmune blood clotting condition, and eventually placed on blood thinners that were injected into my stomach. I left the hospital with an oxygen tank and a wheelchair. In the coming weeks and then months, I lost my job, many friends, what remained of my self-confidence and any hope I had that things would get better. My relationships with the people that mattered most, mainly my husband, became strained, and I hated myself and my body that had carried me through countless half marathons and physical accomplishments for what it did to me. I sank into a deep depression, uncertain of the future and uncertain that I even wanted to live if this was how the future was going to be. Physically, everything hurt and I was making slower than slow progress; mentally I was incapable of finding any hope in my situation and emotionally I was a shell of the person I had once been. In my eyes, I was unrecognizable. And, I never, ever thought things would change.
And I was wrong. I have come long way in three years of recovery and in the beginning, I thought nothing would ever change. I write this post so that you too may know there is hope for recovery and while we all must adjust to a new normal, that doesn’t mean we cannot make progress, heal, find happiness and become accustomed to the changes we have faced.
Out of the woods and into…another woods. Critical Care Becomes Longterm Care.
At three years, I consider myself physically healed, for the most part. In the beginning and for the first six months of recovery, I vividly remember being in constant pain. My leg hurt, my lung hurt and it hurt to do anything. I begged for someone to chop off my leg (I was serious) because it hurt so bad and I could not fathom any relief. I cried all the time as a result of the pain. It was the worst pain I have ever felt in my life, and I never hope to feel it again.
Physically What Has Changed: I am no longer on oxygen and I no longer need a wheelchair, either. The pain in my leg is all but gone on most days, although I feel like I deal with more overall fatigue and pain. I do not have chest pain anymore and if I did, it would concern me enough to visit the ER. My leg still swells and compression stockings are part of my everyday wear (although I have been wearing them about three days a week lately with my doctor’s knowledge). The severe purple and brown discoloration in my leg has decreased immensely, much to my surprise. I get my INR checked via blood draws every 6-8 weeks, compared to twice a week in the beginning. Day to day, I do not get fatigued as easily (for example, walking up the stairs), but I do notice when I get fatigued, it lasts longer and is harder for me to get out of, even with rest. I can sleep for 12 hours and still be exhausted. I take warfarin, aspirin, vitamin k, folic acid, synthroid and progestin-only oral contraceptives, all under advisement of my doctor. My menstrual cycles are incredibly heavy (which my doctor believes is due to my birth control and blood thinner), and I have painful side effects that pretty much keep me sidelined for the duration of my cycle, which is unpredictable in length. I’m not as sensitive to touch as I was in the beginning, and I once again enjoy physical affection and a healthy and regular sex life with my husband. The blood clot in my lung is gone and my lung function has retuned to normal – I am out of shape. I walked a slow 5K (3.1 miles) mid-May and I was able to do so comfortably, without any shortness of breathe or long recovery period. I understand more than ever the importance of movement and blood flow, and I am fortunate enough to have a standing/sitting desk at work so I move up and down throughout the day even when I can’t get away from my desk to take a walk.
Physically What Hasn’t Changed: Antiphospholipid syndrome is, at this time, a lifelong disease and it requires constant monitoring that I have worked into my regular routine. I get regular blood draws, visit my doctor about every three months and see some other doctor (endocrinologist, OBGYN, dentist, eye doctor, etc.) every month. The doctor appointments feel more normal as I have entered a non-critical state of my care and do not require constant monitoring. I’m still not back to running (or exercising) regularly, but I have my sites set on training for a half marathon next spring (did I just say that?!). I have leg swelling from time to time, especially at the end of the day; my left (DVT) leg is slightly larger than my right leg and my clot has calcified behind my left knee.
Don’t sweat the small stuff…because it is really the big stuff!
Three years ago I lost my new job as a 9-1-1 Dispatcher three months after my PE, and I was completely devastated. I had worked for two long years to get the job, during which time I lost my Mom, my biggest supporter, and I was certain starting a new career was the start of a new life for me. I knew Mom would be proud of me, and I was proud of me too, for the first time in a long time. While I tried my hardest, I just could not learn a new job (especially an intense and stressful one) while also recovering from a PE. I had setback after setback in my recovery, including pleurisy and extreme anxiety, which greatly impaired my decision-making and rationing skills. The medications I was on greatly impacted my ability to sleep, concentrate and remember things. In the end, it just didn’t work out. And, I sank into the worst depression I have ever encountered in my life. I could not see a way out, there was none.
What Has Changed in My Lifestyle: I now have a full-time job back in the non-profit field doing work I succeed at. I never thought that would happen again. It took me 16 months to find full-time employment and the experience of being unemployed and kicked down at every turn was really damaging. Financial instability was the worst. I am working through the damage done to my self-esteem and self-confidence very slowly. It is hard for me to trust not only myself, but also people I do not already know. I am healing, though. I no longer run half marathons or lift weights or visit the gym. I just can’t get back into running since my PE. I prefer to be outside more and choose to take a walk or sit on the porch rather than go to a movie. Nature is more meaningful to me now, and I appreciate things like the park, sunsets, the ocean and the woods more. I crave being near natural things. I dress up – a lot more. Wearing colorful clothing is important to me.
What Hasn’t Changed in My Lifestyle: My diet hasn’t changed tremendously. While total elimination has not worked for me, I try to limit the amount of grains, dairy and sugar I eat. I prefer to eat as close to paleo as I can, but do not follow it exclusively. I still eat regular amounts of vitamin k rich vegetables, I eat cranberries and I drink alcohol in moderation.
Psychologically and Emotionally
Just because it’s hardly talked about, doesn’t mean it doesn’t exist. The psychological trauma of DVT and PE is real.
The psychological and emotional impact of a DVT and PE and recovery from these events is the one thing I am not fully prepared to talk about. I am still working through this aspect of recovery, and it still has a strong influence over my life. Talking about it helps. Connecting with others helps. And, because of those things, I will do my best to convey my struggles and progress with you.
What Has Changed Psychologically and Emotionally: Where to begin? It seems like everything has changed for me on this front. I believe that because I am still processing what happened to me, I suffer from a high level of anxiety and fear on a regular basis. I am very quick to get angry and very quick to shut down in the face of personal adversity. My hypervigilance about suffering from another clot has decreased in regards to myself, but I am convinced that everyone around me who has a leg pain or trouble breathing has a DVT or PE, and I recommend they all go to the ER. There is no “could be” for me, it “is” a blood clot. I’ve identified some pretty specific triggers that either make me angry, confrontational or sad and they include, “That’s a bummer,” “This thing/time/place/etc. is different,” and “It’s not that bad.” Because it’s not a bummer (it’s so much more than that), this is no different and it really is that bad in my experience, at least. I have discovered that I need support in being a source of hope, inspiration and information for so many other survivors, and I have discovered that I need to readily seek out that support. For as much anxiety as I have, some things just do not matter anymore. If you don’t like me, I’m okay with that. I have more consequential things to worry about now. I have developed an irrational fear of heights. I am fully aware I could (and I might) die at any second, but I continue living my life.
What Hasn’t Changed Psychologically and Emotionally: I continue to overcome difficult things in my life and persevere through tough times, but I do not embrace positivity, and I do not believe a positive outlook is the key to healing. I am realistic, honest and straightforward and with that, I move forward, but I am not necessarily a positive person all the time.
Recovery is a process. One with a clearly defined beginning and end named then and now. Then being my life before my PE and now being my life since then. There is no middle ground. Time is crucial and matters greatly to me. There is no time to waste. Recovery is difficult, painful, lonely and confusing, but there is hope. Hope that we do not remain the same and as we heal, no matter how little, we progress through the process of time.
There is hope for healing and you are not alone,