I never thought in a million years something like this would have ever happened to me. It’s one of those times when you know something is wrong, but you just can’t put your finger on it. You feel it in your bones and in the back of your mind, a sort of heaviness. Physically it feels like you’re getting the flu along with a tension headache. The worst part is knowing it’s coming, but unaware of how intense it’s going to be. I remember being in so much physical pain that being in the hospital was the only place I felt safe, every other place felt like a death trap. I knew in the hospital I could fall asleep and I would wake up the next day.
I remember gripping the metal bars so tight that my veins were popping out of my wrists. It felt like some one was digging a bullet out of my calf with a fork. After the ultrasound, the ER doctor told me I had DVTs, 3 blood clots in my calf. I was so relieved to hear that my pain had a name. I even remember taking a deep breath and saying “thank god”. Knowing is half the battle right?
But there was so much I didn’t know about blood clots. None of my family or friends had ever suffered from a clot. I knew the basics of blood clots; people can get them on long international flights, after some surgeries and from birth control. But I had done all 3 of these things for years and never had any problems. I had been on birth control for over 15 years, flown internationally over 8 times and had 3 minor surgeries. And I was an active healthy person!
Backstory: I had a bone spur in my big toe joint that was removed (a simple 20 min surgery) 8 days prior to the diagnosis of blood clots. The surgery is called a cheilectomy and is done to stop or delay further arthritis and cartilage loss and range of motion in the joint, which can lead to needing a fusion.
The symptoms of my blood clots didn’t fit the typical symptoms. I didn’t have any swelling, numbness, tingling, or warm sensations or warm to the touch in my calf. The on and off pain actually felt like a sciatic nerve pain in the middle and lower part of my calf and sometimes would run up the back of my leg. It felt like a tight muscle and nerve related. I noticed that my ankle was slightly swollen, but didn’t hurt and I figured it was because of the surgical boot I was wearing.
Within 24 hours the pain was consistent, so I made an appointment with my foot surgeon. She was completely unprofessional and told me that the pain I was feeling was completely abnormal to this type of surgery. I told her that my foot didn’t hurt and that it was my calf muscle and asked why my ankle would be swollen. She bacially told me that she didn’t know why I was in so much pain and referred me to a pain management doctor and said “I’m not trying to scare you…”, Too late, I’m already terrified! “But you might have RSD sydrome”. And of course the googling started…
As I left her office with tears in my eyes and regretting my toe surgery I started on my way home. That night the calf pain got so bad that no pain meds could touch it. Finally, my husband and my mother took me to the ER. After leaving the ER at 2am with Xarelto (blood thinner) and a pair of compression socks, I went home to get some rest. I took the next day off from work. When I returned to work I made sure to walk around as much as possible to keep my blood flowing. I got home around 5pm and proceeded to take my boot off. I looked down at my calf and it was HUGE. I couldn’t believe how swollen it was especially since it had been 8 days since my toe surgery. I was now on day 2 of blood thinners and my calf wasn’t swollen when they first found the initial DVTs. My husband assured me that it was just because I had 3 blood clots in my calf and the increase movement I did that day.
I elevated and iced my calf for several hours and it was still very swollen. I decided to stand up and change positions on the couch. All of the sudden I felt very out of body, cloudy not blurry vision, confused and sharp chest pains. My husband kept asking me to explain what I was feeling. I just kept looking at him and knowing the words I wanted to say but couldn’t get them out of my mouth! I stood up and became very dizzy and the chest pains were consist and sharp. I thought to myself, “maybe I’m having a panic attack?” I mean it’s been a rough and scary couple of days. But the chest pains were so sharp — maybe I’ve having a heart attack!!
My husband decided to rush me to the ER again — this time they did a full body CT scan and found that I had just suffered from a PE or Pulmonary Embolism. They kept me in the ICU for the next day and monitored me closely. When they released me I was terrified to go home — what if next time we couldn’t make it to the hospital in time…??
Reflecting and merging ahead…
1 month – scared all the time that if I didn’t move enough or moved too much that I was get another DVT or another PE, even though I was on blood thinners. Went back to the ER two more times because of weird swelling or redness in calf or chest pains — they were both false alarms BUT you never know — so you have to go!
- Wear your compression socks no matter what! I wore them to my brothers wedding and every day to work and I’m a 35 year old fashionista! 🙂
- Adjusting to the blood thinners and the weird still not documented effects add to the anxiety and also the risk of internally bleeding if you bump your head or fall — since your body can’t do its natural clotting because you’re on the thinners. Sometimes I felt like I wanted to strap a bunch of pillows around my body and hope for the best when I would go out into the world.
- Your veins hate you and so do the people that have to poke them to get blood. Your blood is like water now and so it’s hard to get a vein and when the nurse does — sometimes they “dry up” literally the nurses termed it this way — like a water well. One of my veins “buckled and blew” which I imagine is something that can happen to mechanics while working on a car.
2 months — anxiety decreases and sleep increases, but sometimes anxiety increases if I had a weird symptom in my leg. Still wearing my compression socks.
3 months — was comfortable with having only 2 glasses of wine here and there while on my blood thinners and also had to watch how many glasses I had because if I had to take Tylenol that day for a headache or something — read the back of the Tylenol bottle for limitations on the consumption of alcohol for liver damage. Also, got over the fear of cutting myself and blooding to death — but still was careful with knives and had my husband handle the sharp objects when available.
4 months — had a Doppler done and all DVTs were gone — continued on blood thinners for 2 more months because of the PE.
6 months — Off the blood thinners — another phase of anxiety that I’m no longer protected from killer blood clots and once I stopped the meds that I’ll get another clot and die — that took me about 10 days to get over!
8 months — I look back on this experience and think to myself “what if I would have ignored the signs, I could have died!”. I’m pretty much back to my normal self!
My advice to people who have or haven’t had a blood clot before:
- Anyone can get a blood clot – despite their health.
- Young people can get a blood clot.
- People can die within seconds or minutes of getting a blood clot.
- People can also live after having blood clots.
- Not all blood clots have the classic symptoms that you read on WebMD or that a doctor tells you.
- Listen to your body.
- You can have a blood clot and it just feel like you pulled or torn a muscle.
- Had surgery before and never had a clot? You can still get one — especially with any type of orthopedic type surgery.
- Not all people that get a blood clot will get another clot again or have an underlining blood disorder.
- Some will get a blood clot and then find out they have a blood disorder and are subsectable to clots the rest of their lives.
- Some people will have to be on blood thinners the rest of their lives.
- It’s common for a person that has just suffered from a blood clot and is currently on blood thinners to return to the ER multiple times after the initial diagnosis because of anxiety, strange or new symptoms and the possibility of getting a PE or another clot.
- Some will develop scar tissue in the vein after the clot has dissolved –causing swelling or other symptoms that might be permanent.