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.”
“The recovery we see from this, from people who have been through something like you have, it takes some time. A long time.”
“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,