Melissa’s story

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MelissaMy name is Melissa, and I stumbled upon Stop The Clot® Facebook during my research for more information on blood clots in an attempt to find others who experienced the life-altering experience of surviving a blood clot. I was a healthy 25 year-old, who ran numerous half-marathons, sprint triathlons, and I am also an active Crossfitter. I never in my wildest dreams thought that I’d battle life-threatening blood clots in my calf (deep vein thrombosis/DVT) and lungs (pulmonary embolism/PE).

However, I noticed lingering calf pain in my left leg in September 2011. There was no swelling or redness, but it hurt so much during the night that the pain woke me out of a dead sleep. I got out of bed to elevate and ice it, since I assumed it was just a muscle strain from my workouts. My calf pain lingered as weeks went on, though less intense, so I continued to exercise, as well as walk on it for 12-hour shifts  three days in a row, because I am a nurse assistant, a role that requires me to be on my feet and walk a lot.

My boyfriend and I had to pack up our house in Northern Michigan to move downstate, since he was being transferred to another office. That night, I noticed what felt like more gas pain in my left shoulder and lower left backside that I more or less ignored. The next morning, we packed up our (thankfully) small house, which involved moving heavy boxes, lifting, and packing our car. I then drove 4 hours to my parents’ house downstate, still feeling what I thought was persistent gas pain. When we dropped off a few things at my boyfriend’s parents’ house, my symptoms prompted me to tell his dad that I felt as if I was having a heart attack. I woke up that night with dire pain in my lower left back. My instinct told me something was very wrong, so I knocked on my parents’ bedroom door in the middle of the night to tell them what was going on.

My mom and dad had no idea what it was, but they stayed up with me, massaged my back, went to the 24-hour grocery store to buy Gas-X at 2:00 AM, and applied heat to the area. Nothing worked, so I went back to bed, tired and exhausted.  At 7:00 AM, I woke up with the same sharp pain in the same places. After about a month of pain in my calf, shoulder, and lower back, I finally decided to go to the Emergency Room (ER). The ER doctor confirmed from MRI results that I had two pulmonary emboli (PEs) in my left lung. A Doppler of my left leg found the initial blood clot (deep vein thrombosis/DVT) that triggered my PEs. I will never forget the doctor’s face when he told me about my PEs. My life has changed forever since then, in some ways for the better.

I tested positive for heterozygous Factor V Leiden and Factor II blood clotting disorders. I stopped my oral birth control pills immediately because they carry risk for blood clots, and was started on Coumadin®, which I took for 6 months.  The catch is that Coumadin® can sometimes alter test results for certain blood clotting disorders, so I plan to be re-tested for Factor II in the future.  My hematologist recommended against life-long Coumadin®, because he attributed my use of hormonal birth control as the primary cause of my DVT and PEs.  I trust him, and am so thankful to be free of Coumadin® therapy now. This has been hard for me, because I realize that I am no longer protected by blood thinners and although that thought scares me a little bit overall, I’d rather be free from taking medication, and make lifestyle modifications to prevent any future clots.

I continue to exercise daily, I wear compression stockings when I know I have to sit around studying or traveling for long periods, and I move around more frequently, given that I am in school and study for hours each day.

I am currently a 26 year old nursing student at a community college in northern Michigan. I believe my DVT/PE experience will help make me a more compassionate nurse, because there is nothing more supportive and reassuring than a caring, knowledgeable nurse to help patients in need.  I have just lived through a life-threatening experience, so can relate to the fear some patients feel with any illness. I have cared for a couple of patients with blood clots. When I teach a patient about  blood clot awareness upon discharge, it not only comes easy to me, I feel as if I make a positive connection with them based on similar experiences.

I want my story to help encourage others, and tell them that I was fortunate to survive. If you think you have any symptom of a blood clot, do not wait to seek care, even if you are unsure about what is going on. I truly don’t know how I am alive after delaying almost one whole month to seek medical attention, but I thank the good Lord daily for blessing me.

Do not let your blood clot experience define you; let it be a part of who you are.  These wise words are from my friend Dana, a survivor of a cerebral venous thrombosis related to her use of birth control pills. Stay positive, lead a healthy lifestyle, and listen to your body. Spread awareness about blood clotting risk.

Author: admin

15 Responses to "Melissa’s story"

  1. Jennie
    Jennie Posted on July 18, 2013 at 5:21 pm

    Your story rings very similar to mine AND my sister! We both had the very same thing happen to us within a 2 year span – mine first and then her’s 2 years later. Factor Leiden V (which is not tested prior to going onto BC) + oral BC = multiple PE’s. We both however are on coumadin for life though because of the risk associated. I did try to come off of it on my own awhile back and because of anxiety of another potential clot and slight pain which was not typical – I panic’d and went right back on it. I still to this day get nervous about it and this was 9 years ago! Thankfully, my INR’s are maintained, always on 10mg per day and checking of blood once a month. I too prefer to be without medications all together, but even with a healthy lifestyle, panic sets in. Unfortunately, my children too have Leiden Factor V so an in-depth convo with my daughter (when she is of age) on the topic of BC will be mandatory. Thank you for your article. While its quite an exhausting and scary experience to go through, it is refreshing to know others among my age group understand.

    • Jay
      Jay Posted on May 26, 2016 at 11:12 am

      I had pain in my calf last week, went doctors he said its muscular pain. Then for a week I have pain in my left upper chest and shoulder. I went to the doctor he ch class my oxygen level and said its not PE as my oxygen level was 100%. I don’t know if I should go to emergency or not?

  2. jean
    jean Posted on July 18, 2013 at 5:34 pm

    I, too, had the same diagnosis. However, I was on Premarin for menopause, which is what they attributed my clots to. Only problem is that when something like you have shows up genetically, it doesn’t matter whether you take hormones or not. I know – I reclotted after years of stopping hormones and with an INR of 4.5! Don’t be too quick to ward off warfarin – when you test positively genetically, it’s a whole different ballgame. Be careful if you get pregnant please 🙂 Good luck!

  3. t
    t Posted on July 18, 2013 at 9:18 pm

    Thank you for sharing your story, Melissa. I had a PE a year and a half ago and am very thankful for the positive outcome. When mine happened, I ignored the symptoms for over 24 hours before getting help. Now I’m only on low dose aspirin and feel anxious anytime I have pain in my chest, which happens often due to acid reflux. It’s hard to get over the fear of getting another clot and the fear of looking silly if you go to the doctor for the pain. I don’t have any answers for you ladies, but I encourage you to keep going and stay healthy. We understand your pain and fear.

  4. JIna Lindstedt
    JIna Lindstedt Posted on August 7, 2013 at 2:15 am

    What do you recommend for birth control? I have a 20 year old daughter with FVL hetero?

  5. fiona
    fiona Posted on August 11, 2013 at 8:07 pm

    Thankyou for sharing your story, I was diagnosed with pe in both of my lungs, I know I am lucky to be alive and feel like I am getting my life back, for a year I told multiple doctors that something was wrong, my asthma had gotten worse to the point, that I realise now that I could hardly breathe. I thought I was extemely lazy and felt ashamed, I mean I am only 42, but each time the doctors told me that if I lost weight my breathing would be better. A month ago it came to a head when I was hospitalised after having five seizures ( I had no oxygen going to my brain when standing) in one morning, by evening they gave me my diagnosis it was a relief on one hand and a life sentence on the other. I guess I should be more grateful for the second chance I have received, now if I feel something is wrong when I go to the doctor I expect something to be done and if I feel like I am being ignored again I will get a second opinion life is too precious to take chances with.

  6. Carla
    Carla Posted on August 23, 2013 at 1:48 am

    Melissa, we have a very similar story. I’m also from northern MI and was in my freshman year at CMU (2005) when I thought I was having issues with my pacemaker. My chest felt funny and it was difficult to breathe so I immediately went to the ER. They actually treated me for dehydration and sent me home but called the next morning to return. Turned out I had a bunch of clots but they were only in my lungs. Because of how many, I was on bed rest in ICU for a week, followed by the same six months of Coumadin. Doctors attributed my clots to taking birth control (I’d only been on it for a couple months) and I also tested positive for Factor V Leiden.
    I think it’s great you’re going into nursing. My first night in the ER/ICU was very scary. One nurse told me about a nursing student that ignored symptoms and died from clots before she could get checked. I later asked another nurse if I might die and her response was “I can’t answer that.” Needless to say it was not a great experience but that’s another matter. Lol
    Thank you for sharing your story. I just found this site and have never met anyone else with Factor V.

  7. Greg
    Greg Posted on September 20, 2013 at 10:17 am

    I have a very similar story albeit I am a 29 year old guy!
    I was playing indoor soccer one night and after the game I went out to dinner. During the meal I was apparently acting a little distant and I had no appetite. I started to get an ache going from the top of my right shoulder down to my abdomen. I didn’t think much of it thinking I must have aggravated something playing sport.

    During the night it got worse and I found it hard to sleep but I hadn’t of yet had any difficulty breathing and I wasn’t tachycardic. I took some anti-inflammatory medication in the morning and went to work. I own a supermarket so was doing quite a bit of manual labour throughout the day and the pain was still in the background but not by any means unbearable. Later that evening (still at work) I started to have difficulty breathing and the pain grew stronger and sharper. I started sweating, tachycardia set in and every breath in was painful – I had no idea what was going on. It took 3 hours to go from not feeling very good to being in the worst pain I’ve experienced.

    I went to ER that night (it took 3 hours to see someone) and it took much effort to get in and out of the car without having back spasms. I got a chest x-ray only and they send my away with a diagnosis of pneumonia and a course of antibiotics.

    Over the course of the next 4 days my breathing wasn’t getting any better but the chest pain did occasionally subside. But there were occasions where I had the sharpest and worst pain in my chest (much worse than the night I went into ER) which made me stay perfectly still as even the slightest movement would cause huge amounts of pain through spasms (the longest time I was unable to move was for 1.5 hours).

    It became harder to move around as even walking from my bedroom to the living room was leave me out of breath. So I went to my GP and he told me to go back to the ER to get more scans. This time I was admitted (after another 3 hours) with a heart rate of around 160. I had another x-ray but the CT scan confirmed I had had a major PE and spent a week in the HDU followed by a few more days in the ward. I was initially on Clexane which was used to bridge me into Warfarin (Marevan).

    I also tested positive to Factor V Leiden disorder so was told to take Warfarin for life. 6 months later, I’m going to see a hematologist to see if there is some other medication I can take which doesn’t require monthly blood tests (such as Apixaban). I obviously wasn’t taking birth control pills, have never smoked and did not show any symptoms of DVT which makes my case a little more unusual.

  8. john
    john Posted on March 17, 2014 at 1:02 pm

    Thank you for your testimony. I have had pain in my legs off and on for a few years. I am factor V Leiden heterozygous and have known since my brother found out about five years ago. Never had a Pulmonary embolism and definitely do not want one, but also don’t want to be on coumadin forever. Any side effects like nosebleeds or no intense exercise or are there better times to be on coumadin?

  9. alison rainey
    alison rainey Posted on May 29, 2014 at 12:31 pm

    Hi I looked up your site as I have recently tore a muscel in my calf slipping of my bed . It wasent really really sore to begi with but after 3 weeks I aggravated it again then after 3 days it has started to swell badly I now cant put my foot to the ground 🙁 with a lot of red blue bruising in my foot and ankle. I went to the hospital they said it was diffinatly a tore calf muscel and they put a strechie bandage on it and give me crutches to use and to keep it up hibher than my heart ss it could turn into a blood clot 🙁 .I am now doing this but have to get up from time to time as I have a family !but im afrsid I dont notice if it is turning into a clot can you help me in what to look out for I my case please ? Worried xxxAlison Rainey Northern ireland xx

  10. GG
    GG Posted on March 12, 2016 at 4:32 am


    I read your story and it is similar to mine. I too grew up in Northern Michigan, actually the UP! I now live and work in the Detroit area.

    I am 46, I had grossly swelling in my calves at 17. I was in excellent health and an athlete, I did not smoke. The hospital discovered multiple blood clots in my inferior vena cava, just above the femoral veins. I have been on Coumadin almost 30 years, and I also wear compression stockings. My left calf is still visible more swollen than my right.

    For many years the doctors did not have a clue as to why this occurred. Finally, about ten years ago a doctor at the MSU clinical center traced my fathers service in Vietnam and his exposure to herbicides as the cause. It mutated his genes and he passed this off to us. My three siblings have the trait, but luckily only my brother also developed blood clots. Be well, take care of yourself.


  11. Becky
    Becky Posted on April 6, 2016 at 3:32 pm

    I happened to have stumbled onto this whilst googling. I have both factor v Leiden and prothrombin gene mutation. I had my first femeral dvt aged 16. Second was 9 days post natal with my first child (I was on 20mg heperarin daily). And third when I was 30 weeks pregnant with second child again on heperarin. I have had lots of problems since the worst being constant thrombophlebitis which is painful. All doctors say is it will go away. Well almost 14 years since my first dvt and it’s still here. Today I woke with pains in my calf like a clot but no redness or swelling just warmth and pain doctors are saying its in my head?

  12. Brianne
    Brianne Posted on August 6, 2016 at 6:07 pm

    I too have Factor V Leiden. I am looking for a hematologist in Michigan (Detroit area) who can help me. Do you have any recommendations? Thank you! Brianne