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My name isbloodclotstoryamyreck Amy Reck, I’m eighteen years old, and a student at Michigan State University. I had suffered a DVT (deep vein thrombosis or blood clot in the leg) last year, and found out that I have not only May-Thurner Syndrome, I also have Factor V Leiden. This is my story:

Two years ago in May, the week before I got out of high school for good, I was admitted to the University of Michigan hospital to undergo treatment of a DVT. I was only seventeen, so the major thought was that my birth control pills caused it.

However, after further investigation, it turned out that I had May-Thurner Syndrome (MTS) and Factor V Leiden. MTS is where a vein in the leg is compressed by an artery in the leg, which increases the risk of a DVT in the left leg.

Factor V Leiden is a common genetic condition that makes it more likely for you to have a blood clot.

My doctors talked over the options with my parents and I (since I was a minor), and we decided on the use of Thrombolytics, or lytics for short) (tissue plasminogen activator or tPA, for example). This treatment involved catheters being inserted into my veins to emit powerful medicine that dissolved the clot.

The treatment was scary and painful. At one point I had three different catheters in my veins: one down from my neck, one down my groin, and one up the back of my knee. I remember various parts of the procedures when they inserted them because I was not completely knocked out – only heavily medicated. It was extremely scary. I do not think there was a day in the hospital when I didn’t cry.

Along with the various catheters, I had IVs dispersing blood thinners as well. The count of tubes in my body at one point was 8. I was released after six days in the hospital, with Lovenox, Plavix®, and baby aspirin. I had to give shots of Lovenox into my stomach for a month and a half until my blood was thin enough to start taking Coumadin® instead. I have two stents (mesh tubes used to keep the veins open) in my leg where the vein was compressed. I will have to get a Venogram (X-ray tests of blood flow) three times more to check the stents and make sure everything is flowing okay before I am free and clear to live a completely normal life.

Being at college is hard; Because of my blood thinners I bruise really easily. Of course I am underage so I’m not allowed to drink; But if I chose to drink I could get dangerously thin blood. Other than those few set backs, I’m living a normal life, I get my INR checked once a week, and have learned to not be afraid of needles. I cannot take hormonal birth control for the rest of my life, but that’s easy to overcome thanks to the IUD.

The experience was scary and awful, but I learned that I am stronger than I thought I was, and that I can get through anything with support from my family.  I just want to open up the channels of communication to anyone who has had to go through what I did. It was scary and I wish I had someone to talk to that went through the same thing I did.

Take Home Messages:

  • Teenagers do get blood clots. Blood Clots can affect anyone at any age.
  • MTS is rare, but it can happen and people usually don’t know they have it until they get a DVT in their left leg.
  • Factor V Leiden is not rare, but people usually don’t know they have it until they get a DVT or PE
  • Taking hormonal birth control increases your risk of blood clots, especially if you have Factor V Leiden.
  • Blood clots change your life a little but make you stronger.
  • Family support is very helpful when you go through the experience of a blood clot.
Author: admin

5 Responses to "Amy Reck’s Blood Clot Story"

  1. Andrea
    Andrea Posted on May 9, 2014 at 7:04 pm

    Hi Amy!
    I’m a student at the University of Michigan, I was also treated at the Umich hospital. In February, I had DTV in my left leg as well and multiple pulmonary embolisms. I am still currently being treated with Xarelto. My doctors initally thought my clotting was due to birth control as well, but I am now also being testing for May-Thurners syndrome and thrombophilia disorders. It is a high probability that my clotting was due to May-Thurners. I was wondering how the procedure was for you? Also, I am getting an IUD as well. I’m still choosing between the progesterone or copper IUD. I was wondering which one you chose? I’m really afraid of more hormones, but I know that the copper IUD can make bleeding worse (especially on blood thinners). Any info you could provide me would be great!
    Thanks,
    Andrea

  2. Patricia
    Patricia Posted on May 13, 2015 at 6:25 pm

    Hi, Amy…..
    I also have had a DVT due to May-Thurner Syndrome. It has altered the things I can do, such as enjoying long walks or garden chores. I’ve become very dissatisfied about the lack of information about how to minimized further damage to my leg. I wonder how you are progressing since your crisis. I hope the news is good…. Please share with me…

  3. Connie
    Connie Posted on April 14, 2016 at 6:43 pm

    Hello to all of you. My May-Thurner syndrome was discovered in 2011. By this time I had 15-20 blood clots in my left leg over many years. I live in Montana so it took a while being in a rural area. The last clot I had was in my right leg, this was so bad my leg had turned BLACK. They said it would need to be amputated or use TPA (this is called a blood clot buster) they give it to patients who are having a major heart attack to break up the clot There is a chance I would have had a brain bleed. In my case it worked for me. It dissolved the clot and two stents were inserted in my abdomen. About 6 Months later I was sent to the Mayo Clinic in Mn. and two more stents were inserted in my abdomen where the veins crossed. I have also had a blood clot that was removed from my right ventricle that took up 75% of that ventricle. All of this is a blood condition that most of the females in my family have. So far I am the only one in my family that has the May-Thurner Syndrome. Even my 11 year old granddaughter has had her first blood clot when she fell off her school bus on October 30, 2015. My 15 year old granddaughter has been diagnosed but no clot yet.

  4. Patricia
    Patricia Posted on July 23, 2016 at 8:19 pm

    I too, suffer crom MTS. I had clots on my left leg off and on for years…. 15 years to be exact. The doctors assumed, because I had been in an accident at 19, when the first was discovered, that it was the cause. Then I almost died while giving birth to my daughter at 25. They assumed because of pregnancy, I had problems with constant clotting. Needless to say, 15 years of suffereing 2-3 per year, I caught a break, with a great doctor in Tampa! He took q5 minutes and had me diagnosed and a plan to correct the issue. I had the mesh placed in my groin…. I have been clot free for the last 6 years, although I have had so much damage to the vein from all of the clots, once per month I get achy when the blood tends to thicken a bit.

  5. Gg
    Gg Posted on August 12, 2016 at 2:48 am

    Amy,

    I developed dvt’s in my inferior cava 30 years ago. I have been on Coumadin for 30 years. I see a hematologist at MSU Clinical Center. I hope everything goes well for you. Please feel free to ask me any questions.

    GG