Patient Story: Running Down A Road to Blood Clots by Rachel McCulloch

This patient story “Running Down A Road to Blood Clots” was written by Rachel McCulloch for the Blood Clot Recovery Network Blog.

It was October of 2015 when I got to run one of the biggest and most important races of my life, which was the Nike Women’s Half Marathon in San Francisco, California. The day of my race was amazing, inspirational, and in the end, I finished in pain with a knee injury. Flash forward to January of 2016, the pain had started to slowly intensify in my left knee, and I couldn’t take it anymore. After visiting my orthopedist, it was determined I had torn my meniscus and would need to have it surgically repaired. I was scheduled for arthroscopic surgery on February 2, 2016.

I was told it would be a super easy surgery and even easier recovery. I went into surgery and came out with no complications and feeling pretty good. The day after my surgery would be the day my life would change forever.

I woke up that morning with a very swollen foot and calf. I didn’t think anything of it, and attributed it to the surgery and the wrap that was protecting my sutures. I brushed off the swelling and went to my first physical therapy appointment that afternoon. After my physical therapist assessed my knee, she told me she was more concerned with the swelling and redness in my calf and foot.

My physical therapist told me I needed to go to the emergency room. My dad drove me straight to the ER and after being taken back for an ultrasound, it was discovered that I had a deep vein thrombosis, or DVT, in my calf. I was immediately put on Eliquis. I was able to go home after a few hours in the emergency room, but I had to go back the next day with shortness of breath and dizziness. After having a chest cat scan done, I was diagnosed with multiple blood clots in my lungs and was admitted to the ICU for further observation.

I remember clearly that first night in the hospital as I reflected on my life. In a matter of a few months I had gone from a very healthy active 29 year old woman to a very sick individual facing a life or death situation. I kept thinking, “How could this happen to me?” The doctors were able to run blood work in the ICU, which eventually revealed the true cause of my blood clots to be factor V Leiden, a genetic blood clotting disorder.

“Wait, I have factor V Leiden?,” I thought, “The same disease my grandma and grandpa have.” Why had this not been found earlier on in my life? Why had I not taken any precautions? What if I wouldn’t have run that race at all? Then maybe I wouldn’t be in this situation.

All of the whys and what ifs won’t change the fact that I had this happen to me. My life has changed forever, but I don’t look at what happened to me as a negative. I try to always remain positive.

Life is a precious gift that can be taken away so fast, it’s best to look at all of the good things in life and put the negative stuff behind us. The one question I get asked all the time is if I still run, and of course, the answer is yes.


Editor’s Note: Thank you, Rachel, for sharing your story with BCRN. Connect with Rachel, or share your thoughts, in the comments below.


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Patient Story: A DVT at 25 by Carrie Smith

Smith, Carrie blogIn January 2009, I was starting my final semester as a senior in college. I was almost 25 years old and I was told I needed a total hip replacement in my right hip. I had several problems with bones on the right side of my body since birth and knew eventually I’d need hip surgery, but a total replacement surprised me. It was hard to accept, but since I was in constant pain and walking with a cane, the surgery had to happen.

I had my total hip replacement in May, two weeks after graduation. The surgery went well, but didn’t go as planned. The doctor had tried to lengthen the leg a little bit too much (as I had one leg shorter than the other) and he tore the sciatic nerve. The next day, I had another surgery to repair the nerve and a rod was placed into my femur. Recovery looked gruesome and it was.

The next few months were trying. On top of the constant pain that I was in (both from the nerve and my replacement), I was having relationship issues with my current boyfriend. I became depressed and angry. To get me out of this slump, my best friend at the time suggested a spontaneous and secret trip to Vegas, which was four hours away from where we lived. This was mid-August. We took the trip and it was one of the greatest nights of my life, even though I was hobbling on crutches the whole time.

A couple of days later, I had severe pain in my left calf, about three inches from my groin. There was also bruising, which was confusing because I hadn’t hit my leg on anything. I told my physical therapist about it and she sent me to the ER. I am a very stubborn person. I hate going to doctors, hospitals, etc. I’ve spent so much time in them, I try to “stick through the pain,” if I can. I think my therapist knew this so she told me that I couldn’t come back to therapy until I was cleared by an ER doctor. My mom took me in right away. After an ultrasound and waiting for six hours later, it was just before midnight when the doctor came in. I laughed because I was so sure that he was going to tell me nothing was wrong and to go home. He said I was going to be admitted immediately and put on blood thinners. I had a deep vein thrombosis or DVT.

Smith, Carrie quoteI was devastated. I was already deeply depressed and to have to spend three days in the hospital sounded horrible. Even though my hip replacement surgery had been months before, because of the crutches and DVT, I wasn’t allowed to get up from the bed by myself. It was humiliating going to the bathroom with a nurse beside me. I felt like a child. The doctor said I was lucky that it hadn’t gone to my lungs or my brain. I hadn’t even heard of a blood clot before. It was hard to believe that it could happen to me. If I hadn’t said anything to my physical therapist, if I would have ignored the signs and symptoms, I could be dead. I knew the risk I was taking when I took off to Vegas, being in the car for four hours one day and four hours the next day. Even though my doctor may have told me, I don’t really remember him warning me that this could happen.

This DVT could have been prevented. I was unaware and didn’t know all the facts. I think everyone should be educated, especially after having major surgery. Wear the compression socks they suggest, do the exercises, and take caution when traveling. The simplest second thought could save your life.


Top 5 ways to prevent dvt

Thank you, Carrie, for sharing your story with BCRN. Connect with Carrie in the comments below. 


Read Top 5 Ways to Prevent a DVT from Forming to learn more about blood clot prevention.


Visit How to Share Your Story to share your story with Blood Clot Recovery Network.

World Thrombosis Day 2015: Join the Global Movement to Stop Blood Clots & Save Lives

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In just less than two weeks, the world will come together to celebrate World Thrombosis Day on October 13, 2015. World Thrombosis Day seeks to increase global awareness of thrombosis, including its causes, risk factors, signs, symptoms, evidence-based prevention and treatment; and ultimately strives to reduce death and disability caused by the disease.

What is World Thrombosis Day?

Founded in 2014, this is the second year for World Thrombosis Day (WTD) by the International Society on Thrombosis and Haemostasis (ISTH) in response to requests for a focused global awareness day on thrombosis. Each year, the WTD campaign centers around a specific area of blood clot awareness that has the potential to greatly impact the community and through increasing knowledge, hopefully reduce the risk and associated deaths that occur each and every day because of blood clots. Each year, blood clots affect more people than AIDS, breast cancer, and automobile accidents combined. Blood clots clots can, and do, affect anyone – from the very young, to the elderly to professionals to athletes to women to men. In the U.S. alone, up to 900,000 people each year are affected by blood clots in their legs and 1 person dies every 6 minutes due to a blood clot. The statistics are staggering.  

What is VTE?

Venous thromboembolism or VTE is simply deep vein thrombosis (DVT) + pulmonary embolism (PE). A blood clot that forms in a deep vein (usually in the leg or arm) is a DVT and a blood clot in the lung is a PE, which occurs when a DVT breaks free from a vein wall, travels to the lungs and blocks some or all of the blood supply to the lungs. PE can be fatal due to this obstruction. DVT and PE together are called VTE.

Why does it matter?

The positive news is, blood clots and the deaths that result because of them, are preventable. This year, awareness will focus on hospital related deaths as a result of VTE (deep vein thrombosis + pulmonary embolism). Being in the hospital is a major risk factor for the development of VTE. Up to 60 percent of VTE cases occur during or after hospitalization, making it a leading cause of  preventable hospital death. Patients who are hospitalized are at an increased risk for developing blood clots because of decreased mobility due to bedrest or recovery; or who experience blood vessel trauma due to surgery or other serious injury. In the U.S. alone, more than 540,000 hospitalized patients develop VTE and the procedures with increased risk are:

  • Orthopedic surgery (e.g., total hip or knee surgery)
  • Major general surgery (especially involving the abdomen, pelvis, hip or legs)
  • Major gynecological surgery
  • Urological surgery
  • Neurosurgery
  • Cardiothoracic surgery
  • Major peripheral vascular surgery
  • Chemotherapy for cancer treatment

I did not realize how important it was to understand your risk in regards to hospitalization and VTE because I have only been in the hospital for a DVT and PE. I have never been hospitalized for any major surgeries or injuries. I currently have a family member who is in the hospital for major surgery combined with cancer treatment and I was fortunate enough to be present in the hospital room when blood clots were being discussed. Risk was assessed and my family member was prescribed twice daily injections of lovenox to prevent blood clots. Prior to the surgery, a filter was inserted to hopefully prevent any PE complications after the procedure. Seeing the pain my loved one is already going through because of the diagnosis, I suddenly realized why it is also important to consider blood clots. With all of the things to worry about in terms of diagnosis and longterm recovery, I feel relieved that the hospital has skillfully and thoroughly done the best it can to reduce the risk of blood clots. Because my blood clot happened so suddenly, it mattered to be to see a different side of treatment. Blood clots and the pain and distress caused by them, can be prevented.

What can you do to help?
  • Take the Pledge and share. If you or a loved one is going to be hospitalized due to major surgery, illness or injury, be prepared discuss your risk and preventative plan with your healthcare provider. Taking this pledge can help remind you to do so if you are ever in that situation. 
  • Get involved on social media. Share, chat, tweet (details about the official chat below), discuss and show your support. These tools, including badges, banners and headers, will help you do just that.  
  • Share your story. Are you a VTE or blood clot survivor? Take a selfie, fill out this printout and share across social media. Be sure to include the hashtag #WTDay15 and #StopDeadlyClots.
  • Involve your own community. Explore, download and distribute WTD posters and flyers to help raise awareness in your corner of the globe. Talk to your loved ones about their risk.
Where will I be?

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  • World Thrombosis Day Twitter Chat on 13 October at noon U.S. ET. Use the hashtag #ClotChat to participate in a discussion about hospital-associated VTE. Follow @thrombosisday and @ClotRecoveryNet on Twitter for details.
  • Exclusive social media and blog posting on October 13. Don’t mis it. 

There is hope for healing and you are not alone,

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A Survivor Speaks: The Trip of a Lifetime by Lori

In 2010, I experienced pain in my calf, which I thought was a charley horse and ignored for several weeks. When my leg and foot began to swell, my husband insisted I get checked out. I went to a walk-in clinic and was immediately sent to the ER. I was diagnosed with a DVT in my lower left leg. I was shocked! The doctor said it was caused by birth control pills, which I had only been taking for about six months for the hormonal benefits. I spent five days in the hospital, followed by two months of bed rest. After six months, my doctor took me off Coumadin, despite being diagnosed with Factor V Leiden.

Fast forward to February 2014. My husband and I were going to New York City for a romantic Valentine’s Day weekend. The week of our trip, I wasn’t feeling good. I had been working out very hard with a trainer and also tried a new exercise class. My thighs hurt, but I thought I just over-exerted during my workouts and pulled a quad muscle. I got light-headed one time when I got up from my desk at work, but I paid no attention, thinking I just got up too fast.

On Valentine’s Day, my husband picked me up at work to go to the airport for our flight to New York. We parked and started walking to the terminal. Suddenly, I had to stop and rest every few feet. I wasn’t having any pain or shortness of breath, but for some reason, I just couldn’t move for more than a few steps. After what seemed like an eternity, I made it into the terminal. When I did, I had to sit down immediately, as I suddenly could no longer breathe. Someone nearby noticed my distress and called an ambulance. My blood pressure dropped to 75, my heart rate was over 170. I went into tachycardia and was rushed to the nearest hospital.

I had two PE’s in my right lung, four DVTs in my left leg, and my right leg was completely blocked from my knee to my groin. Instead of going to New York City for the weekend, I was now fighting for my life. Due to the amount and severity of the clots, I was transferred to the ICU. After a few days with no improvement, I underwent a procedure where catheters were inserted behind both knees and a clot busting medicine was dripped through my veins.  It didn’t work. My feet turned blue, the nurses had trouble finding a pulse and I was scared. The doctors then went in again and basically “scrubbed” the clots from my veins. I spent the next five days in ICU, urinating blood and unable to move. I finally began to improve and was moved to a regular room, where I stayed for another week while they tried to get my INR to a therapeutic level.

It’s now five months later and I feel pretty good, other than some chest pain and extreme fatigue from anemia. I think about how lucky I am and that I got to the hospital in time. At times it’s overwhelming to think how close I came to dying. I also wonder though, why I survived and others don’t.  It’s hard to not overreact to every ache and pain, but also remember how important it is to get things checked out. It’s a delicate balance. I’m happy to say we finally made it to New York City over the 4th of July weekend this summer! I was anxious about flying, considering my close call but I made it! I don’t like the fact I’ll be on Coumadin for life, but each time I take it, I remind myself that I have been given another day to live and that I’m a survivor!

Thank you, Lori, for sharing your story with BCRN!