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!

 

A Survivor Speaks: Without Notice by Kimmi

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I never imagined it would ever happen to me, but it did on Oct 27, 2009. A massive bilateral pulmonary embolism happened to me. I remember that afternoon. I had no symptoms, except not being able to breathe. It was a struggle to go from my bedroom to my bathroom without having to stop to catch my breath. I went to an emergency doctor appointment and the doctor thought it was asthma. She gave me a breathing treatment and an inhaler. I went home and got in bed.

Next, I received a call from the hospital to come in immediately for a chest CT with contrast. I did, and after I was finished and on my way home, I got a call from my doctor who said to go back to the ER because I had massive bilateral pulmonary embolism. I rushed back and they were ready for me. Doctors and nurses, all rushing in with oxygen, lovenox shots and IV’s. They seemed to be panicking. I was given Morphine twice. I heard the doctors talking outside of my room, “put her on the pulmonary wing and take her vitals until she passes.” I was given a 30% chance to live.

And I did live….I lived….I survived. I was put on lovenox shots for ten days, then Coumadin. After four months, I was taken off the medications, tested and cleared. I thought to myself I just cheated death. I told myself never again would that happen to me.

But then it did. 

On Oct 27, 2013, I was ready to board the jet to go to see someone, someone that is and has always been my life, besides my son. She asked me to get a chest x-ray because I was having trouble breathing. She could hear it.  I was stubborn, but went to ER hoping to get out fast so I could board the jet.

The doctor wanted a chest CT with contrast because of my PE history. I agreed but asked him to hurry. I had the CT done and waited back in my ER room. The doctor came back pretty fast and he sat and said “Well Kimmi,” and I thought “sweet, I am bailing.” Then the words that crushed my world came out of his mouth, “Sorry, but we are going to keep you for at least five days. You have massive bilateral pulmonary embolisms again.”

I remember putting my hands on my forehead and crying, “No it’s wrong read it again.”

He said, “I can show you.” My head was spinning. What do I do with my son? We are supposed to get on a private jet. The doctor, who was so kind and compassionate, said,  “Kimmi you know you would of died if you got on the jet. You worked in the medical field, you know. You know it, don’t you?”  I said, “Yes, I know I would of died if I got on the jet.”

This time it was worse – the pain, the fear, the constant worry that a clot would pass through my heart and into my lungs again. I am now a lifer on Coumadin. It is harder to keep my INR within range and I still feel pain in my calf that had the clot in it. I still experience shortness of breath and my o2 sats are at 86% most of the time. I am terrified, but I can’t live in that fear everyday. The stress is too much.

I want to say be aware know your body, don’t ignore the signs. Because clots kill, and all of a sudden at that. I am blessed to be here. I pray for those that survived like me, for those that didn’t get the chance too, and for those going through it right now.

I want to thank my very special someone  for saving my life that evening. If not for her, I would not be here today; ALIVE, BREATHING AND LIVING. I love you with all of my heart and soul.

Kimmi (From California to Colorado where the doctors said I could never live)

Editor’s Note: Kimmi is a published author and has written a book of poetry about about life, loss, loneliness, appreciation and love called Layers of my Soul. You can find her work through Barnes & Noble and Amazon. You can also connect with Kimmi on Facebook or in the comments section below. Thank you, Kimmi, for sharing your story with BCRN!

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Six Steps to Reduce Your Risk of DVT while Traveling

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Many of you will probably be traveling this week for the Thanksgiving holiday. If you’re like me, maybe you’ve been reflecting on the things you are thankful for this year. I am thankful to be over a year into my recovery without a second clotting incident, and I am thankful that my INR has finally stabilized. I am thankful for friends and family who have been there to pull me through some hard times this past year, and I am thankful for doctors who listen to my concerns and are genuine in my care. Above all, I am thankful to be alive after the DVT/PE that almost claimed my life in June 2012. While I have a lot to be grateful for, when it comes down to it, I also worry about things that I didn’t have to prior to my blood clot. As many of you know, DVT diagnosis changes the way we must look at sitting for long periods of time, such as when we are traveling. Read on to learn six steps to reduce your risk of DVT while traveling.

Over 43 million Americans are expected to travel over the Thanksgiving holiday this year (www.clotconnect.org) and one thing is for sure, we all do a lot of sitting over the holidays! While the overall incidence of travel-related blood clots is relatively low, there is an increase in risk with any form of lengthy immobility, including when seated for a prolonged period of time when traveling by car, bus, train or plane. In general, clotting risk increases with the length of travel time (the greater the travel time, the greater the risk) and with the addition of pre-existing risk factors.

However, just because you have a history of DVT or are worried about increasing your risk, does not mean you have to give up traveling this holiday season. You can still travel while taking some very simple precautions!

Six Steps to Reduce Your Risk of DVT while Traveling *

  1. Move More! Get out of your seat and walk the aisle when permitted on a plane or stop frequently (every hour or so) when traveling by car. Flex your toes, ankles and knees when sitting down. You could also raise your heels with your toes on the floor; and then raise your toes with your heels on the floor – anything to keep circulation moving while you are sitting.
  2. Drink plenty of fluids, mainly water. Proper hydration helps to decrease your risk for a DVT. Be sure to avoid alcohol and caffeine on long trips as well.
  3. Wear loose clothing and comfortable shoes.
  4. Do not cross your legs. Crossing your legs can interfere with circulation.
  5. Wear compression stockings while traveling. Especially if you have a history of blood clots.
  6. Be aware of blood clot symptoms. The symptoms of DVT can include swelling, usually in one leg; leg tenderness or pain; red or blue tinted skin discoloration; and/or leg is warm to the touch. The symptoms of PE can include sudden shortness of breath; chest pain that may feel like a stabbing sensation or get worse with each breath; rapid heart rate; and/or an unexplained cough sometimes with bloody mucus. If you experience any of these symptoms, get medical help right away.

Share your story. What are you thankful for this Thanksgiving? Are you worried about traveling post-DVT? What precautions are you taking to stay safe on the road?

There is hope for healing and you are not alone,

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* Travel tips compiled from Clot Connect and Stop the Clot. Check out these pages for more travel tips.