Deep Vein Thrombosis

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    Maggie Goodman

    Life Lessons From Children and Deep Vein Thrombosis Recovery

    It started with my having to stay with my parents. I had deep vein thrombosis (DVT) in my right leg, and the hematologist wanted me on strict bed rest.  I was required to elevate my legs, and was also taking a blood thinner. If it weren’t for my 3-year-old niece, C, staying with my parents too, it would’ve been a very long weekend for me. Originally, my husband was standing up in his best friend from the Navy’s wedding. Since the wedding was in New York, we decided to turn it into a vacation and add on an extra few days to do some sightseeing. That ended up not being possible, my husband stated that he wasn’t going to stay in New York any longer. He was going to take the train back the following morning so he could arrive before noon to pick me up from my parents’ house and take me home. Once I settled in at my folks’ house, C and I started playing a few games and chatting with each other. Later on, I was able to go downstairs for dinner — provided I didn’t sit for more than an hour. Afterwards, everyone went into the living room to watch a movie. It was then that my niece asked me why I had large white socks on and used a cane. I told her that I have a really bad “boo-boo,” so my doctor wanted me to wear them and take medicine so I’d get better. My niece got very quiet and suddenly walked up to my leg and gave it a quick kiss. She asked if it was all better now. I explained to her that it will take time for my leg to heal, but her kiss made my heart feel better. After that, she asked my mom and sister every day if I was healed. They had to explain that I still needed to take my treatment and stay off of the leg. C was persistent because she really wanted my “boo-boo” to go away. At my last checkup, Dr. R. went over my recent Doppler results with me. She stated that my clot was finally gone, but I would have to be on the medicine for the rest of my life. I was so happy that I rushed home to call my sister. I asked to speak with C and told her the great news. I could hear my niece yell out to my sister, “See, Mommy, I told you — a kiss does make the “boo-boos” go away!”

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    Living With Pain and a Post Thrombotic Syndrome After Blood Clots

    I’ve worked so hard over the past few years as an advocate for fellow blood clot survivors to help them navigate their personal health and recovery journey. What I haven’t done is shared enough about my personal experience with chronic pain, including post thrombotic syndrome, and disability following my battles with blood clots. First of all, let’s go over what blood clots are. Blood clotting normally helps prevent us from bleeding too much. A blood clot, however, forms when your blood thickens too much. Blood clots that form in the veins are known as deep vein thrombosis. If the blood clot breaks off and travels, it’s known as an embolus. If the embolus travels to the lungs, it’s known as a pulmonary embolism. It’s important that we all discuss our individual risk factors and the common symptoms of blood clots with our doctors. If you are concerned you might have a blood clot, get immediate medical attention. Blood clots are a leading cause of death and disability worldwide and the third common cause of vascular death after heart attack and stroke. In the U.S., many blood clot survivors will develop post thrombotic syndrome, which is often a long-term complication that can increase your likelihood of being granted disability. If you suspect you might have post thrombotic syndrome, consult with a knowledgeable vascular specialist. I was first diagnosed with blood clots in March of 2013, when I was 11 weeks pregnant with my son. The blood clots were pretty extensive, going from the right side of my pelvis across to the left side and then going down my left leg and behind my knee. I had been experiencing lower back and left hip pain for at least a couple of months, believing it was because of the pregnancy, I brushed it off. The day I was diagnosed I was in excruciating pain and could barely stand up, let alone walk. I was given no pain medication when I was released from the hospital and was told I could return to work in a couple of days. There was no way I felt comfortable returning to work, as I was still in excruciating pain and could barely walk. My obstetrician decided to put me on strict bed rest for the duration of my pregnancy. A week after my diagnosis, my husband took me back to the emergency room because I was in even more pain than I had been. The doctors in the ER were so understanding and kind and prescribed me a pain medication that they said would not harm my unborn baby. It didn’t alleviate all of the pain, but it helped me handle it better. Several weeks later, my husband and I were excited to be having a more intensive ultrasound for the 20th week of my pregnancy. While the sonographer was checking the baby’s measurements she was making small talk to help keep us calm. She asked what brought us to a high risk obstetrician, so I started telling her about my blood clot diagnosis and my experience. Things immediately spiraled downhill as she objected and dismissed my concerns about the pain I’ve been dealing with, because she’d experienced a superficial blood clot in her lower leg the previous year and she adamantly insisted that blood clots don’t cause pain and I was faking. She had the audacity to bring one of her coworkers in to back her assault on my symptoms, which completely shocked and overwhelmed me. I left their office thrilled at finding out we were having a baby boy, yet completely crushed that a complete stranger basically called me a fake and a liar. Fast forward to March 2014, which was when a knowledgeable interventional radiologist diagnosed me with May Thurner syndrome. That explained a lot of what was contributing to my ongoing pain. May Thurner syndrome is the compression of the left iliac vein by the overlying right iliac artery. I had to have clot busting surgery consisting of thrombolysis with tPA and mechanical thrombectomy followed by a lot of painful ballooning of several veins to help open them up. I also had stents placed in the iliac veins to help improve the blood flow. The knowledgeable specialist made a tremendous difference in my quality of life, because not only did he improve my health, but he understood what I was going through and he confirmed that my pain was real. Several months later, the vascular specialist I’d been seeing diagnosed me with post thrombotic syndrome. I’d been suffering from ongoing pain even though he’d removed the blood clots and improved the blood flow in my lower body. I was constantly in pain and both of my legs would swell whenever I was on my feet. I was incredibly uncomfortable sitting in a normal position, even for a short time. I also couldn’t wear anything on my legs that had an inner seam going down the left leg. I can’t lay down with my left leg laying flat, as it increases my pain. I can’t stand or sit upright for long periods of time. I’m most comfortable laying down with my legs elevated, but even then I’m still in pain. I barely sleep most nights, often waking up due to pain, if I’m actually able to fall asleep. Since my blood clots, I have not had a pain-free day, even with medication. I slipped into a deep depression. Throughout the last seven years since my blood clots were diagnosed, I’ve had a few medical professionals dismiss my pain issues. Thankfully, I’ve found even more medical professionals that believe me, including a few that completely understand the pain I have and what contributes to it. In January of 2017, I was awarded disability, due to the pain and mobility issues I’ve experienced since my blood clots. I’ve been working with a knowledgeable pain management specialist who has been helping me with controlling my pain issues. I work with a knowledgeable hematologist to keep my risk factors for developing blood clots under control. I’ve also been working with a therapist to help me deal with my anxiety and depression issues I’ve been battling since having blood clots and pain issues. If you’re dealing with chronic pain issues, please know there is support for you out there. If you’re battling with blood clots or post thrombotic syndrome, know that I understand what you’re going through and there’s support for you. Talking about the pain and how it affects all aspects of your life is so incredibly important. Don’t hold it in and don’t let others dismiss it or you. Your pain matters, and so do you. Follow this journey on MT Survivor Mama

    Community Voices
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    Sam Perry

    Discovering and Treating My Thrombosis

    It started as a sharp pain that shot through my right leg and lower back as I climbed out of the pool during a swim meet, exhausted but exhilarated by the thrill of competition. The intensity was shocking, almost debilitating. But it passed, and the next day I was in the pool again, pushing myself to swim my best. Yet my breath wouldn’t come, my limbs felt sluggish and I put in one of the worst performances of my college athletic career. In most stories, the moral comes at the end. But let me give you the bottom line right away. I should have gone directly from the pool to the emergency room. Instead, it would be weeks before I learned I had a blood clot deep inside my leg running from my hip to my shin, and that it had come close to killing me. Today I know all about venous thromboembolism, or VTE, because that experience 20 years ago eventually led me to take a job with the International Society on Thrombosis and Haemostasis (ISTH) in North Carolina. I’m the campaign manager for World Thrombosis Day, which is observed globally every October 13 to raise awareness of blood clots. I now know VTE is a leading preventable cause of death in hospitals and a serious health concern for pregnant women and people with cancer and heart disease. I know it’s a health risk for people like me who have a genetic variant called Factor V Leiden. Factor V Leiden makes it easier for blood to coagulate, increasing the chances of developing a dangerous clot that blocks flow in a vein or artery. It’s most common in people of European ancestry; about five percent of Europeans and Americans of European descent have it. Of course, as an otherwise fit 19-year-old college athlete, I knew none of this. I just kept practicing through the pain. When I went to the team doctor, he didn’t find anything wrong. But as time went by things got worse — I started coughing up blood and had trouble sleeping. That’s when I learned two important lessons: listen to your body and listen to your friends. After two weeks, I finally let my friend Kelly drag me to urgent care, where the doctor sent me straight to the emergency room. In the hospital, my right leg swelled to twice the size of my left. A CT scan quickly revealed the enormous blood clot growing there for who knows how long. I had waited so long to seek help, the doctors worried I might lose my leg or even die. They called my parents, then tried a medicine that breaks up clots. When that didn’t work, surgeons removed as much of the clot as they could. I still have four inches of blocked vein in my right leg. After the surgery, I was sure my swimming career was over. I had to take blood thinners and wear a support stocking. I felt like a person four times my age. But I worked hard to regain my stamina and swam well enough during my last year at East Carolina University to be nationally ranked. Eventually, my doctors told me it would be safe to go off blood thinners. For a while it was. But 10 years after the first one I had another clot, which built up around the four-inch stretch of blood clot the surgeons had been forced to leave behind. Several pulmonary embolisms (PEs) formed when pieces of clot broke off and traveled to my lungs, blocking their blood supply and starving my body of oxygen. Now I’m back on blood thinners, and the support stocking is a wardrobe staple. I have constant leg pain, but I have continued running marathons, teaching cycling classes and scuba diving. If anything, I figure the exercise helps prevent another clot by keeping my blood flowing. For 20 years, I felt like I was the only person who had ever gone through such an ordeal. But since I started working with the World Thrombosis Day campaign, I’ve met countless people just like me. Knowing there are other people who have gone through what I did motivates me to make sure that no survivor of thrombosis ever feels alone. It may be unusual for a young, healthy person to experience a clot, but there are many of us who have. And the more people who know about our experiences, the more likely they are to get help immediately if it ever happens to them. I sure wish I had.

    Community Voices

    Pushing Through for Two

    On 3/7/13, at 11 weeks pregnant, I was diagnosed with a DVT in my left thigh. The vascular surgeon that diagnosed me initially thought I was going to lose my leg. Luckily, that didn’t happen. I was kept for two days, put on Lovenox, and told I could resume all normal activity by the start of the new week. Trouble was, I was having a heck of a time walking and had such radiating pain from my lower back and left hip all the way down my left leg. So, my OB ordered strict bed rest and referred me to the Maternal Fetal Medicine group at McLeods. There I was told about genetic testing for clotting disorders, but they didn’t do any of it. They were mainly concerned with the fact that I was over 35 and pregnant, so they ordered blood tests to check for anomalies with the baby. None were found. After that, I had an ultrasound at 20 weeks, and I was having just as much pain and trouble walking as the day I was diagnosed with my clot. The ultrasound tech informed me she had suffered with a superficial clot in her calf the year prior and that I just needed to quit being dramatic and faking and that I shouldn’t be having any issues this far out from diagnosis. The MFM agreed with her!! Needless to say I haven’t been back to them since. I was then referred by my OB to a vascular surgeon that placed an Option IVC filter in June 2013. It was to be removed within 6 weeks of delivery.

    Fast forward to September of 2013. I had been switched to heparin at 36 weeks. Around day 10 of taking heparin, I awoke at 4 am to very strong cramps. I got up and went to the bathroom to discover I was bleeding. My husband rushed me to the ER, as we’re luckily just a few minutes away. I was monitored for several hours until my OB finally arrived to find me bleeding too much and passing rather large clots resulting in an emergency csection. I was put under general anesthesia for the procedure, and found out after I woke up that I had a 20% abruption to the placenta and a very healthy 6 lb 13 oz baby boy.

    In mid October 2013, I had a follow up ultrasound to check how the DVT was doing. The ultrasound tech informed me that my clot was from my knee to my groin!! I had NEVER been told that!! The ultrasound showed minimal improvement, so treatment stayed the same. My vascular surgeon attempted to remove my filter, but it had tilted and was becoming embedded in my vena cava. He decided it really needed to come out as he was very concerned the filter would puncture my vein, and referred me to an Interventional Radiologist at MUSC. Another ultrasound in January 2014 showed no change to the DVT in my left leg. My hematologist decided that since there was no change, that I should come off of the lovenox and should leave the filter in. She said that when I clot again, as she was sure I would, that she would then put me back on thinners. I asked about genetic testing (she had done some, but I’m still uncertain which ones), but she blew me off. I told her I was scared to come off of Lovenox with such a large clot in my body, especially since I was still having significant pain and a lot of trouble walking and unable to sit for long. She said it’s Post Thrombotic Syndrome and I should talk to my PCP about getting meds for restless leg syndrome. I asked her about May Thurner Syndrome, because I had read that it could cause significant pain like I was experiencing. Again, she blew me off. I immediately knew she was NOT the doctor for me and that there’s something wrong. I called the interventional radiologist I had been referred to and told his nurse what was happening. She put me on hold, and in less than two minutes he was on the phone ordering me to continue the lovenox and that his nurse would be calling me back in a day or two to schedule a ct scan to check the status of the filter. He also told me he grabbed a copy of my ultrasound from October 2013 that was sent to him, and from what he saw (without me even getting to ask him yet) it looked like I could have May Thurner Syndrome, but additional testing was needed. On January 17, 2014 my filter was removed. We were told it generally takes 30-45 minutes to remove one, but it took 3 hours because it was so embedded. I was brought back March 6th for a venogram, where it was discovered I do in fact have May Thurner Syndrome. When he went in to place the stents in my left iliac vein, he discovered my left and right iliac veins were completely occluded. He decided to put me on a stronger dose of lovenox for a month to see how it would do and would decide then how to proceed. I asked him what made him think another month of lovenox would do anything, considering I’d already been on it for a year and so far there was no real progress. So, he decided to get aggressive. He brought me in the following week and did thrombolysis, a thrombectomy with the Angiojet, angioplasty and placed two stents in my left iliac.

    In July 2014, I started experiencing increased pain and swelling in my groin and thigh area of my left leg. Thankfully, I had an appointment with a different hematologist who noticed my pain and increased difficulty walking. He immediately sent me for a duplex ultrasound. It was determined that I had an obstruction of blood flow in my iliac veins. I was scheduled for another venogram with my Interventional Radiologist for the following week. The venogram showed that my stents had become occluded with clot. My Interventional Radiologist proceeded to clear them out by using angioplasty and then had to place two more stents. I was then told that the 120mg daily Lovenox that I had been taking, failed. After consulting with my hematologist, it was determined that I would be put on Warfarin and Plavix for life. Warfarin is to help prevent me from developing further clots and Plavix is to help keep my stents from clotting.

    I still have severe pain and have issues sitting, but I can walk a great deal better than I was able to when I still had the DVT. My left foot is no longer pink, purple and red. After the plan my first hematologist decided on in January 2014, I’ve learned that I’m very lucky to be here and that I’m very glad I listened to my inner voice instead of blindly following a “trained professional”.

    Moral of my story: Take charge of your care. Be your own advocate. Research everything and ask questions. Do NOT be afraid to speak up and ask for second opinions and so on. It could save your life.

    Deep Vein Thrombosis

    Community Voices

    Can’t win!

    I have had post thrombotic syndrome since my Deep vein thrombosis became chronic 5 months ago, so I have pretty severe scaring in the vein behind my knee and calf. So 3 days ago I began having horrible leg pain again, so I scheduled an appointment with the vascular surgeon...Lo and behold another blood clot! I thought I was finally heeling and the scariest thing about it is I developed the new clot on blood thinners. I just can’t win and the pain isn’t tolerable so pain meds every 4 hours uhg I’m running out of hope.

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    I have been struggling with the my quality of life for 19 years. I feel like I don’t have much to look forward to....I don’t think any of us say oh yay I get to wake up tomorrow in the same or worse pain as I had today. I’m sure my husband and kids get tired of hearing about my pain every day. I have chronic migraines and was having them almost every day, collagenous colitis, acid reflux with hiatal hernia, gastroperisis, inflammatory arthritis, Fibromyalgia, degenerative disc disease. I was in a motorcycle crash as a passenger when I was 16 leaving me with a severe broken tib /fib and ankle and skin grafts, I have had a total disc replacement in my L5 S1 in 2011, both SI joints fused in 2013, and c3 - C7 fused 2013 and 2017, I recently had ankle surgery in October for bone spurs and cartilage damage and a possible strayers if needed to lengthen my calf muscle on the leg that I broke in the accident....what should have been a simple surgery turned into a total nightmare!!! I woke up with the ankle cleaned up and the surgeon cut my achilles in three places (which was never even discussed as a possibility) and I developed DVT (deep vein thrombosis) on top of it. I was clotted from my ankle to my abdomen. I have been on blood thinners since and in and out of the hospital. I had to have like an angioplasty type procedure to try and open the vein. The dvt to my leg has now become chronic, they call it post thrombotic syndrome. I will now be on blood thinners indefinitely 😞 thus makes things I can take for pain very limited. I am going to a pain specialist tomorrow that had given me injections in my neck and back before in hopes that he can help me. I have been gaining weight every day I swear from the inactivity. and now has contributed to me now having sleep apnea as well. The medical bills just keep pilling up and I am drowning!!! I reluctantly filed for disability in 2017 and was approved the 1st time thank goodness. I was missing so much work and my bosses were not very understanding. Sorry for rambling but I have very little support or people who can understand what I’m going through. Has anyone out there had similar things and how have you gotten through it???? I’m hanging on by a thread 😢 Thanks for reading my life story without judgement....I hope

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