Are you ready to participate in the #STOPTHECLOT Virtual 5k?
My CLOT BUSTER #StopTheClot polka-dots have been ready and are INSPIRED all around because Blood Clot Survivor CAN DO ANYTHING!
Join us virtually to run, walk, jog or even cycle to support NBCA. Participate from any location at any level of athletic ability. Run your own race at your own pace and time it yourself. Register here: https://bit.ly/3io2qWg #stoptheclot
It has been a super busy and exciting month becuase of the preparations needed for the Virtual 5K. The CLOT BUSTER #StopTheClot polka-dot goods are selling out and we are shipping ALL OVER THE COUNTRY. Very excited to see all the places where the polka-dots will be out and about so that we can CELEBRATE all Blood Clot Survivors as well REMEMBER all those we lost along the way. Blood Clots can indeed happen to anyone but being to reover in whatever way your body allows you too is what inspires me everyday.
Speaking of inspiration... October's Athlete of the month has a truly inspiting story. I am very excited to be able to share this story with all of you. Donna has been very gracious in sharing her story with us and I can't say anything else other than Read On!
"I was on top of the world. I just finished my third Leadville 100 mile race in August when my life was turned upside down. It started with a nagging pain in my forearm that just would not go away. I was in top shape, but the week after the race I still did not feel quite right. I had had some minimal swelling in my arms and hands during the race, which was nothing too abnormal for me; I thought it was due to hydration. I thought my continued labored breathing was just exhaustion from a hard season of ultra-running. It never dawned on me that I could be so active and have something be seriously wrong.
I have always been active and athletic. At 45, I am a dedicated long-distance runner. I have run more than thirty ultra-marathons and they have taught me to pay attention to my body. This time I could not put my finger on it, but I just didn’t feel well. I was exhausted, having trouble breathing, and struggling with pain and the use of my arms. I was having trouble breathing on my morning 7 mile runs and even when driving over mountain passes near my home in Colorado. I went to the doctor, explained my symptoms, and asked for blood work and a referral to an orthopedic specialist for my arm pain. She diagnosed my arm pain as tennis elbow. When the blood work came back normal, she thought I just needed a break from running.
However, things kept getting worse. I was now having trouble using my left hand at all, and my strength was going. I blew it off as tennis elbow and thought maybe I was just getting old. I kept saying it just needed time, so I headed off to another 100 mile run and then another. I never felt quite right and kept consulting with my doctors, but they could not identify a problem and just kept treating me for tennis elbow and exhaustion.
I finished the Across the Year 100-mile race in January and felt awful. During that race, my arms swelled to twice their normal size and could not fit into my gloves. My breathing was much more labored than usual. It was a hard race for me, but I thought, “Well, sometimes races are hard.” As the days went on after that race, though, I felt like a truck had hit me. This pushed me to once again to contact my doctor and insist on more tests. I explained that even though I was still running 50-70 miles a week, I did not feel right and it was getting worse. We discussed my arm swelling once again. They were stumped because I had it in both arms, and now the swelling was rearing its head on the shortest of runs. The trouble breathing was also catching up with me.
On an 8 mile walk, friends saw my hands and said that it was much worse than they had imagined. They insisted I go to the emergency room. I again called my doctor. Six months after the original appointment, and despite monthly appointments and contact, she had no new input.
I went to the emergency room. Both my d-dimer and chest x-ray came back normal, so they were just going to send me home. Luckily for me, however, I come from a family of physicians, and I called for their thoughts. My sister-in-law knew that I had not been doing my normal activities, even though I was doing more than 90% of the average person’s activity level. She said she thought I might have Thoracic Outlet Syndrome. She told me that it’s rare and often the blood clots are in your arms and chest. She recommended that I demand an ultrasound to check for DVTs and a CT scan for other clots.
I brought my concern to the doctors in the emergency room. They thought it was extremely unlikely. They were not happy to be questioned and thought it was unnecessary, but I refused to leave until they did an ultrasound. They finally sent me back to get one.
(The reason I share this part of the story is that if you don’t feel right and you are in tune with your body, you may need to fight for the care you need. Be persistent. Don’t stop until you get answers. You know your body and what is right for it.)
As soon as the ultrasound tech started, I knew I was not going home that day. It took a long time. She was measuring and taking photos of numerous clots. Some had fibrosed down and had caused permanent damage to my vascular system. They had obviously been there for a long time.
That day my life changed dramatically. I started treatment for the clots. I was diagnosed with Vascular and Neurogenic Thoracic Outlet Syndrome and referred to a vascular surgeon.
“ is categorized as disorders of the upper extremity, which are caused by compression of the brachial plexus and subclavian artery or vein by bony, soft tissue or muscular anomalies as they emerge from the thoracic outlet. Vascular TOS usually occurs in young patients and athletes who are involved in repetitive overhead motion, such as swimming or baseball.
Symptoms in the upper extremity are a result of thromboembolization (clot formation & dislodgement of the clot), and include arm fatigue, distal ischemia (lack of blood supply) of part of the hand in more than 50% of cases, Raynaud's phenomenon, or stroke.
My journey is not over yet, and my arms are not fully recovered due to permanent fibrous scarring in the veins. I am an art teacher and artist, so the use of my arms and hands is a critical part of my every day life. I am fighting to get back out there to run and enjoy the great outdoors. I need to reclaim all the parts of my life that bring me joy and peace.
I don’t know that if I had heard of other extreme athletes getting clots, I might have recognized my symptoms. After all, my doctors did not, and the emergency room was ready to send me home. After all the appointments and research, though, I know now that what I was experiencing are classic VTOS symptoms. I am incredibly lucky that a clot never dislodged and caused further damage or even death. My biggest message here is to listen to your body and fight for your care. My road to recovery has been long and full of up and downs, just like a 100-mile race. I just keep moving forward, listening to my body, so I can live the life I was meant to-- climbing mountains and running through the trails in Colorado.
To keep my spirits up after surgery and help my recovery, I recently power-walked 200 miles to complete the Destination Trail 200-mile challenge with my boyfriend. This summer, even in the midst of COVID, I was able to get back out and run a marathon that reaches 13,191 feet of elevation. To make it even more poignant, I summited the pass with a fellow blood clot survivor. I also completed the Leadville 100,000 vertical foot challenge in 8 weeks over the summer. I attempted a 50-miler, but my arm swelling is still an issue. I had to take frequent breaks, but even with that I completed 38 miles and 4,000 feet of gain that day with the help of some amazing friends.
Although my life has changed, I am now part of an amazing community of survivors. I know that my story may be able to help others. I am adapting to my new circumstances, and I will be back on the Leadville 100 trail and other ultra-races courses sharing the story that Blood Clot Survivors can and will do ANYTHING their hearts desire. So, get back out there and follow your dreams!"
Thanks you for reading.
The Clot Buster