I’m sitting in my comfy chair watching tv. Every now and then I stretch my legs and do a few ankle roles. Sounds simple but now I think about it. Every hour. Because last year at this time ( oddly around the time of World Thrombosis Day Oct 13) I was diagnosed with a DVT- deep vein thrombosis in my calf and now, stretching is not just something to do when I feel like it. It’s something I do every hour to save my life.
Well that’s a little dramatic, but you get the point. It’s strange that something that you never gave a second thought to suddenly is top of mind. I’ve become oddly focused on how my leg feels, all of the time.
Walking my dogs each morning typically my focus is “true crime podcasts”, but with each step I take I am aware of every tiny twinge, or feeling in my leg.
Engrained in my mind are the words the emergency doctor uttered before realizing I had two clots, not one, “If you feel it behind your knee then get back here- that’s where it will lodge before breaking loose- and you don’t want it to go any higher or then you’ll be in trouble.”
Her words bounce around in my head often.
When I get out of bed in the morning and I step down onto the floor I’m focussed — you see that’s when I first felt the oddness in my calf. It had appeared out of the blue, no warning. Perhaps I’d pulled it in the night? No.
I walk about 10 km a day, sometimes more, and I exercise a bit- nothing major, so there wasn’t really a reason to have a strain, but I elevated it that night, rested, and hoped it would get better. It didn’t.
The next morning it was the same.
That’s when I recalled my doctor mentioning something about calf pain just after I had renewed my birth control. She said if I ever felt any pain or a pull there to get it checked out right away. It could be a sign of a blood clot, which is a known risk with being on birth control. But at the time I never though “oh, that’s what it is” I glossed it over completely at the time.
Day 3 – I took action. I headed to a walk in clinic, told them I was on birth control; they did a d-dimer blood test and booked an ultrasound for me that afternoon. I basically spent the day at the hospital waiting to see what the results of all the tests would be.
Around 4:00pm my emergency doctor told me that I had two small clots in my calf, and at my age, 45, contraception was off the table forever, and I had to report to the outpatient for at least a week to receive injections of heparin. And I was to start on blood thinners right away. Bam. My life changed instantly.
When I finally made my way home to my husband (where I had asked him to wait), I collapsed into his arms crying.
To be honest, I was more upset about going off the pill than I was about the life threatening blood clots. It’s strange what goes through your head when you receive bad health news, but that’s what I thought.
We had only been married two years and I felt cheated, all of a sudden. Cheated out of a freedom that two newlyweds should have. And I was scared at the speed at which I had been thrust into a world of pills that caused bleeding, bruising and hair loss, with no real idea if they would even work.
For the next three months I became an expert in blood clots- what they are, how they work, and what the drugs do. I joined a few survival facebook groups but they only succeeded in making me feel worse because so many people had much more serious side effects and conditions than I did. Reading a thread from some women talking about their first menstrual cycle blood thinners-how it would be like a never-ending flood for days. Woman after woman chimed in on their horrific time.
I panicked. I ran to the store to stock up on every pad, tampon, and cup I could find, terrified that I was going to be left writhing on the floor awash in blood and pain. But the day arrived and nope. Nothing of the sort. Just a usual run of the mill event for me.
It was just that I had forgotten that their experience wasn’t necessarily going to be mine.
I think people tend to do that when faced with a health crisis. You want to hear that you aren’t alone, but it’s hard to disconnect yourself from their pain.
People were very helpful, but after awhile I realized that there was almost too much information and I needed to pull back from them. I had become a “numbers person” from checking my blood levels each week to compare with theirs and I was living day to day instead of planning ahead and that can be a terrible place to be mentally.
I often hear that when a person has a life threatening event they have an epiphany and they suddenly feel like they should seize the day, change their life in some way. But I didn’t really feel that. I didn’t have that “ah ha” moment everyone talks about. What I did feel was that I needed to take charge of my health properly.
I read up on the latest techniques being used, left the groups, stopped checking my results every week and instead – waited on my doctor and my hematologist’s pronouncements instead of guessing for myself and followed the drug protocols. After 3 months my clots were gone and I was off the drugs.
People said I was lucky.
In my case, birth control pills fall under a reversible risk factor and so the likelihood of having another one is low. That’s my case. No one else’s.
Even though I’m off the blood thinners I still use biotin and collagen shampoo to keep my hair thicker. I still wake up after having bad dreams thinking my leg is aching – and sometimes it is. In hot weather my foot swells a bit from a touch of post thrombosis aching.
Forever I will follow the suggestions about stretches daily and precautions when I’m traveling. I am aware of what I have survived and I hope to never go through it again.
So, why did I share this? Well, because it’s good to share stories about your inner struggles with other people, and often strangers are easier to speak to. They aren’t invested in your personal life, but maybe they have had a similar experience and don’t have any family or friend support….they just don’t want to feel alone.
I think that you can read the story of someone else and you can think “ hmm, that’s interesting” and then you will go on with your day. Until you actually experience it you won’t really understand the emotional and physical toll something like this might take on you. But it might make you little more mindful about invisible illnesses. And maybe, when someone comes to you to listen… you will.
BIO: Rachel Sentes is a professional writer. She has been a dinner theatre actor, cake cutter, daycare worker, preschool teacher, karaoke host, bookstore manager, dog rescuer, and most recently, a publicist running her own business gal-friday publicity. Her husband, family, and dogs keep her going every day.