December Athlete of the Month

Time to Celebrate!

2020 is coming to and end.

May this Holiday Season be filled with all the joy and serenity you need to get ready to keep on keeping on!

Hard to imagine what we all have been through this year and what we have left to go.  

The turn of the new year is not going to solve all of our on-going problems but there seems to be a glimmer of hope in the horizon that we slowly will return to some sort of normalcy.  What will this new normal look like? I don't have any clue but I can tell you this... We will for sure continue to spread awareness about blood clots and blood clotting disorders along with continuing to CELEBRATE ALL BLOOD CLOT SURVIVORS.

That is about the only normal that I can hold on to for the moment.  My CLOT BLUSTER #StopTheClot polka-dots may not be actively racing but for sure they are actively out doing what they can to make new connections and bringing folks into this community to perhaps find some support while they are navigating the challenges of their very own blood clotting incident.

The goal of this space is to celebrate all levels of ability because we all walk together through our experiences of overcoming the unknowns of survival.

December's Athlete of the month sure has an interesting to share and I am so very thankful to Michele for her willingness to share this wonderful write-up that I am certain you will find engaging as well.  Please read on and be inspired to overcome!

I have always loved hiking and taking long scenic power walks or jogs. Luckily, I live in Sonoma County, California where, between the redwoods, the coast and the vineyards, there is no shortage of natural beauty to enjoy. I find that it clears the mind, and is the best remedy for the typical anxiety or depression that most people experience from time to time. It’s also an activity I have always been able to enjoy with my young son, Hunter. Unfortunately, due to an injury obtained 6 years ago from parkour gone wrong (a story for a different time), I started to slowly develop arthritis in my left ankle. When I couldn’t even walk without pain at only 30 years old, I realized that I needed to take some drastic measures. It seemed so silly that a random accident like that could have such a negative impact on my quality of life. So, in January of 2020, I had had an elective ankle surgery to fuse the ankle that was, at that point, riddled with arthritis.

At the time of my surgery, I was on hormonal birth control pills. I also had a family history of blood clots, although I did not know it at the time. Due to my age and the fact that I was relatively healthy, no anticoagulation therapy was ever discussed with me. The surgery went well, and I was placed in a splint for two weeks to allow for swelling. During those two weeks, I had little to no mobility, as the pain was very intense and I was told to ice and elevate. Shortly after I had the plaster cast placed on my leg, I noticed a change in how my calf felt. I experienced new onset throbbing and swelling, as well some discoloration of my toes. I called the advice nurse who told me to come in to have the cast removed and reapplied. When I went in, my podiatrist informed me that the swelling and pain was common, and that it would dissipate soon enough.

A couple days later, I woke up to a dull ache behind my right shoulder blade. I assumed I had slept in an awkward position (if you’ve ever had a leg cast- you know what I’m talking about), so I did some stretching and foam rolling throughout the day to try and relieve the pain. As the day went on, I started noticing that the pain got worse with inhalation. By about 9:30 PM, the pain was so excruciating that I couldn’t breathe without crying out in pain. Luckily, I was recovering from surgery at my parent’s house. My mom, who works in cardiology, told me that it sounded like symptoms of a blood clot. She told me we should go to the ED to get it checked out. I reluctantly agreed, and I’m glad that I did!

On my way to the hospital I called my paternal grandmother to ask her if she had ever had a blood clot, as I had briefly remembered hearing about it a few years prior. She confirmed that yes, she had, and that my aunt had as well. When I arrived at the emergency department I had the information I needed to share with the nurses and treating physician. I told them about the surgery, the swelling, the birth control, the family history and the shortness of breath that I had just started experiencing.

One EKG, chest x-ray and chest CT later, I was greeted by a physician that bluntly told me, “You’re not going to die, but you do have several blood clots in your right lung.” I had developed a blood clot in my leg called deep vein thrombosis, which had broken off and traveled to my lungs causing a pulmonary embolism. I was prescribed Eliquis and admitted to the hospital. I was confused, however, when the pain and shortness of breath continued to worsen after starting the prescribed medication. The doctor told me that it was likely from scar tissue caused by the lack of blood flow to some portions of my lungs, and that it would soon go away. I had no idea that it would get worse before it got better, or that it would take months until I got any kind of relief.

When I got home from the hospital, I didn’t know what to do. I felt so lost, alone and still in an excruciating amount of pain. I didn’t feel like the trauma I was going through was understood by my family. I didn’t know that post-clot PTSD existed yet, but I knew I couldn’t continue to live in constant fear. This led me to join a pulmonary embolism support group on Facebook. It was through this group that I finally got the relief I needed. I became informed on my condition, received great advice and met some amazing people that helped me get through the hardest time in my life. They explained things to me in ways that no clinician was able to do for me.

Even with all the virtual support I received, the road to recovery was a long one. I saw a hematologist who diagnosed me with two different genetic clotting mutations- Factor 5 Leiden Heterozygous and Factor 2 Heterozygous. He told me that I would need to stay on Eliquis for at least 6 months, possibly even longer. After an echocardiogram, my cardiologist informed me that, thankfully, there was no long-term damage done to my heart. My pulmonologist said that there was some scarring in my lung tissue, but that the clots had dissolved. Through all of this, my chest pain persisted and remained somewhat of a mystery. Post clot PTSD was, by far, the biggest struggle of all. Since I still wasn’t able to walk, I wasn’t getting the exercise that I previously relied on for emotional regularity. Over the next few months, I was seen in the ED two more times, had two more EKGs, chest x-rays and chest CTs. The words “chest pain” with a history of VTE are not taken lightly.

It wasn’t until I was slowly able to start walking again that I got the relief I needed. I started out slowly, walking up and down the hall once or twice with my walking boot. Unfortunately, I realized quickly that it wasn’t just my ankle that needed rehabilitation, but my lungs as well. Walking to the corner and back left me feeling like I had just run a marathon! It was, however, an amazing feeling to be walking again. I felt independent for the first time in 10 weeks. This feeling of freedom lit a fire underneath me. I was determined to get back to my long walks- possibly even hikes! I started walking 1-2 times a day on the creek path behind my house, sometimes only making it a few hundred feet before my shortness of breath got the best of me and I had to turn around. Within a few weeks, though, I was able to walk a mile. Now 10 months later, I’m walking 3-5 miles every few days, and I’m back on some of my favorite hiking trails. I recently completed a walk/jog 5k with the National Blood Clot Alliance’s Team Stop Clot while sporting my favorite New Balance Fresh Foam Sport shoes and Clot Buster’s Running Polka-dot shirt on the very creek path that my recovery started on. My shortness of breath is mostly gone, and I suspect that with more endurance training I can be back to “normal” by the new year.

I am still a part of the Pulmonary Embolism Support Group on Facebook, where I see so many new survivors with the same fears that I had only a few months ago. They want to know if they will ever recover. They want to know whether or not the constant anxiety and fear will ever go away. The truth is, recovery looks different for everyone. It seems to me, though, that determination and belief in yourself is key to making steps in the right direction. I was able to turn my anxiety into motivation and began my patient advocacy journey by raising awareness about blood clots. I have started working alongside the National Blood Clot Alliance helping with fundraising for their many programs and resources. I feel like I have found my community, and it’s one where everyone is welcome, appreciated and celebrated.

This experience has lead me down a previously unimaginable path of self-love (our bodies are capable of just about anything!), strengthened my relationships with my family and friends, and taught me never to take a single breath for granted. I have new goals of traveling (when safe, of course) to Europe, visiting family more often and, of course, sharing my story with anyone who will listen so that I can take this experience and use it for good. If I could save even one life by telling people about the risks, signs and symptoms of blood clots, it will all have been worth it.

A word of advice to my fellow PE warriors: Take that vacation, eat that pizza, do what makes you happy! Most importantly, though, give the support and be an example for others that are unsure about whether or not they will be able to make it to the next day. 

Yes indeed Michele let's eat that pizza after that killer hike! For sure you will have to be my guide for those favorite trails of yours.  We will have to tackle those trails in our CLOT BUSTER #StopTheClot polka-dots!

Celebrate this holiday season that some sort of normal is coming soon.

Thank you for reading.

The Clot Buster