Amanda Liimatainen’s Blood Clot Story

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Amanda Liimatainen was caught by surprise when she was diagnosed with a DVT, even though her mother had a pulmonary embolism at age 46, and she tried to make healthy choices to prevent them.

My mother, who is a nurse, had a pulmonary embolism (PE) when she was 46 and I was 16.  After her treatment with blood thinners ended, she had 2 deep vein thromboses (DVTs).  She is now on Coumadin® for life, yet is still a heavy smoker.  Her father died from a clot in his mesenteric artery at age 63, so blood clots affect three generations in our family.

In summer of 2010 I noticed pain in my left leg.  At first, I thought it was no big deal, since I’m a mother of 2 active boys.  It hurt for a week and went away, and I didn’t recall straining a muscle.  When the same pain returned, I felt it for two weeks before I did anything about it.

I thought I knew the classic signs of a blood clot in the leg, since I work in Nurse Recruitment, although I am not a nurse.  However, I didn’t have swelling, warmth, or tenderness at the site, or any symptoms similar to my mother’s.  Fortunately, I called a friend who is a Nurse Practitioner and asked her opinion on whether I should see my primary care doctor or an orthopedist.  She recommended that I see my primary care doctor, and suggested that I request some additional testing for blood clots, because she knew my family history.

I made an appointment, and they did all of the tests my friend mentioned, including an ultrasound.  I was irritated that an ultrasound was done, because I so certain I didn’t have a clot, even though I knew deep down to err on the side of caution.  I’ve been tested previously for genetic blood clotting disorders, and was told the tests were negative, as were my mother’s tests.

I observed all the elderly patients in the hospital waiting area, and felt very out of place, since I was only 34 years old.  I chatted about medical stuff with the Vascular Tech, who said he was glad that I came for the ultrasound, because I had a clot behind my left knee.  You could have knocked me over with a feather.  I was terrified and very angry, because I was young, fairly active, quit smoking ages ago, and had stopped taking birth control pills, in an effort to avoid repeating my mother’s medical history.

I was scared that a course of lifelong Coumadin® lay ahead of me.  On top of that, I was scheduled to fly from NC to MI for a 2 week vacation on the shore of Lake Superior with my family two days later. I knew more than the average person about blood clots because of my mother’s experience, and I challenged my doctor to make a treatment plan that would permit me to go on vacation.  He knew I was a compliant patient, so worked with me to accomplish this.

I took injections of low molecular weight heparin for 17 days, and started Coumadin® 5 days before my return to NC.  I saw my doctor the day I came back.  I was on Coumadin® therapy for 6 months and wore compressions hose during my entire vacation on the beach.  My INR was kept under reasonable control because I continued to learn about food interactions and kept my vitamin K intake steady.  I even helped my mom learn these things to keep her INR stable.

My blood was sent to the Mayo Clinic for testing, and I am still negative for hereditary clotting disorders.  I’ve had 4 major surgeries and a significant injury while I was pregnant and never had a clot before this.  There is no obvious explanation for my blood clot, other than my family history.  I had no event or condition that increased my risk for a deep vein thrombosis (DVT).  In reality, I have a suspicion that I might have a yet undiscovered clotting disorder.

I have two wonderful boys.  I almost lost my mother when she was 46, and I had a clot at 34.  I worry about my children.  They share my DNA.  It is likely that I will experience another clot, unless I do something about it.

I exercise more and I wear compression hose while I work at my desk or when I travel more than 3 hours by car or anywhere by plane.

I am participating in a clinical trial for a new blood thinner that could potentially replace warfarin or low molecular weight heparin.  I am participating for my children, my mother, and me.  If it’s approved, I hope that my mother can take it because so far it’s much kinder to the body without any need to watch any food interaction and any worry about drug interaction is minimal.  I might need to take it in the future and if my children develop blood clots, it’s may be another treatment option for them.

My advice to others:

Listen to your body.  Pay attention to symptoms and seek treatment quickly.  Pain is not normal in the leg.  Even if you think it is nothing, you may be surprised, as I was.

Take Home Messages

  • See messages from patient at the end of her story.
  • History of a blood clot in birth family (mother) may increase risk for blood clots.
  • Travel over 4 hours poses risk for blood clots, whether by car, bus, train, ir plane.  Walking and heel toe exercises are prevention measures.
  • Compression stockings prevent complications of DVT, specifically post-thrombotic syndrome.
  • Denying or minimizing symptoms is a typical human response, even though this patient was aware of her mother’s clotting history.
  • Creating a dialogue with your doctor to make treatment realistic to one’s current life situation promotes adherence to treatment.
  • The main take away about vitamin K with warfarin is to keep amount of dark green vegetables or other foods high in vitamin K that you eat steady or consistent.

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2 Responses to "Amanda Liimatainen’s Blood Clot Story"

  1. Dana
    Dana Posted on April 16, 2016 at 5:05 pm

    My mother passed away 11 years ago at the age of 38, my uncle her brother, was diagnosed with factor V a when he turned 38. Than my younger sister found out she had it too a year ago when she had a cesarean done for the birth of her son. I used to be afraid I would get them too. Than I moved on. The past month ive experience the worse pain in my legs. My gut tells me its not muscles plus been no injury. Ive been tested twice. But my hospital thinks they know my pain level. Nothing helps ease pain when it happens. Nothing. And they keep refusing to do an ultrasound on me. My primary doctor who I used to love has treated me like a paranoid yuppie. He does nothing too. I am just really needing someone to tell me I’m listening to my gut but with no results. My mom went for help several times too bc she had her PE and passed away. I’m also experiencing moments of walking to another room with no way to lose breathe and yet I get a heavy chest short air and start coughing and I can barely stand on my leg I even collapsed yesterday in front of my daughter and cried in pain for 20 minutes before I could get back up. My feet go numb and my toes feel cold like it’s cold only on my toes but nowhere else. I have very little swelling. Normal skin color. They can’t feel the bulges like I feel and my skin is normal where it feels. I’m depressed I’m getting no help. I live in a secluded county in the country and my car is in terrible shape from a wreck 6 months ago that I wasn’t in my husband was on his way to work. But I’m depressed bc even if it isn’t blood clots they do blood work and than tell “nothing is wrong” there’s no getting to the issue. They refuse my wish for an ultrasound.

  2. Deanna Marsden
    Deanna Marsden Posted on July 8, 2016 at 5:00 am

    I’ve had many superficial clots over the years. The last two years have been the worst with clots. I’ve had the genetic testing which was negative, but my sister and my moms sister both have had clots as well. I’m now wearing compression stockings and my vascular doctor says I probably have refiux of the veins. I recently had an iv for a procedure and ended up with superficial clot from the iv. I recently went to have blood drawn in that same arm and got another superficial. I can actually feel the blood flowing in my legs, its so strange. I’m also RH negative so I don’t know if that has anything to do with it. I’m not on blood thinners, just a regular aspirin daily.