Patient Story – Tara Robinson’s Blood Clot Survival Story

Categories: News,Patient Stories

The personal story below is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including the patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact info@stoptheclot.org with questions about this matter.


Tara Robisonimage001 was startled at age 20 by 21 blood clots in her lungs. She was misdiagnosed at first, but her persistence in seeking further care saved her life.

In June 2010, I felt a pain in the right side of my upper chest that I thought at first was just gas pain.  I woke up the next morning feeling as if I was in the middle of a battlefield, because I was fighting attempts to sleep, because chest pain was interrupting my sleep, and I even had sit up to sleep. Certain moves worsened the pinching that I felt in my chest.

Nurses I knew told me that it was probably just a pulled muscle or my gallbladder. I felt miserable, so I left work early to go to the nearest medical center. I had a cough, stuffy nose, and this stupid pinching pain in my chest that hurt every time I coughed o breathed in. After waiting hours at the medical center, the doctor listened to my lungs, took an X-ray of my chest, and had me move my arms.

He sent me home with a diagnosis of a possible pulled muscle in my chest, and he ordered an X-ray that showed nothing significant.  He noticed some congestion in my lungs, but said it was not serious. Little did I know at this time that my symptoms were signaling blood clots in my lungs.

Four days later, I finally went to the Emergency Room (ER) because I felt even more miserable.  It took fewer than five seconds after the doctor told me that a CAT scan showed that I had 21 blood clots in both of my lungs for tears to flow down my face, for the ER to become a blur, and the thoughts in my mind blotted out any noise. I felt terrified.

Blood clots? They can be fatal. I’m going to die. I’m going to die. Mommy, help me! Why won’t they do something? What’s going to happen? What does this mean? I have college to finish, the perfect man to marry, a family to create.

Ultrasounds were done on my legs to try to find a source for my pulmonary emboli (PEs), although there was no evidence of a deep vein thrombosis (DVT).

I felt my mom’s kisses on my forehead as I stared out into the hallway. My mom looked at me and with the bravest voice told me, “You’re going to be okay, baby.” How did she know? What would help me? Minutes after the doctor left, I w as surrounded by nurses.  Pinch! I felt an IV placed in my arm. Very rapidly, I was placed on blood thinners and told that I had to stay in the hospital. Pinch! I received a shot of blood thinners in my stomach that burned like a bee sting, and I was told I would have a bruise, since blood thinners may cause one.  I was on injected heparin for ten days and Coumadin® for six months.

I also tested positive for factor V Leiden. After one night of bed rest and sleeplessness, my primary physician came.  He was extremely shocked by what was happening to me, and told me that he was relieved that I went to the ER, because my age (20) led healthcare professionals to first diagnose a pulled muscle or a cold. From that I have learned: Rule #1: Listen to your body. Rule #2: Do not stop fighting.

Looking back, I waited way too long to go to the ER. I am so thankful that my body was able to keep up and keep me safe.

My life has changed.  I work harder for what I want and know I deserve.  I value each and every interaction I have in this world. When you realize you are lucky to be alive, it changes things.  It changes the way you say I love you; it changes the way you smile, the way you think, the way you live.

So here I am now writing this story to inform others of the importance of listening to their body.  I am grateful and thankful that I am here today to write this story.  I was on oral contraceptives when the episode occurred, which added to my risk, and which I have stopped taking.  Had I known I had a clotting disorder I never would have taken any oral contraceptives and I believe that women need to be aware of the potential of clotting disorders adding to the risk of blood clots.

Blood clots are terrifying and can develop without any warning signs and be unpredictable in their impact on the body.  I will not lie, I wonder what is going on inside my body and if a clot is going to strike again.  I need to stay motivated to use as many preventive measures as possible. Stories like mine and the other brave individuals who tell their stories need to be shared. National Blood Clot Alliance is a phenomenal organization and should be utilized for its resources, awareness, and support.

Take Home messages

  • Get care right away in the ER for chest pain or shortness of breath.
  • Don’t delay in getting another opinion if your symptoms do not go away.
  • Birth control pills pose a risk for blood clots, and an underlying blood clotting disorder increases risk.
  • X-rays do not detect lung clots.
  • Pulmonary embolism (PE/lung clot) and deep vein thrombosis (DVT/leg clot) are misdiagnosed as something else at times.
Author: admin

60 Responses to "Patient Story – Tara Robinson’s Blood Clot Survival Story"

  1. chad o
    chad o Posted on October 24, 2013 at 10:45 pm

    Tara your story is almost identical to mine. I thought i pulled a muscle in the gym and after a week the pain in my rib got worse. I went ot the doctor and was prescribed pain killers and muscle relaxers for the pulled muscle. It seemed to work for a short time but then the pain came back even stronger this time with severe pain in my chest and in my calf. I went to the hospital this time and they did a cat scan and told me i had two large blood clots one in each lung. This situation has completely changed my life and im in fear that i will have to be on bloodthinners for the rest of my life. Unfortunately i know if i go off of them i can develop another clot. The hardest parts for me is the complete diet change and going for blood work all the time. i’m just now feeling like myself again after almost 6 months being diagnosed with this disease. A lot of times i still get very depressed and its soo hard to know what to eat and feel like you can go out and be one of the guys. Before this i only thought old people in their 70’s or over got blood clots. Never did i think a young athletic guy(0nly 34 yrs old) would get it. Atleast i know im not alone and young people have to deal with this to. Take care and continue the fight. Your a great inspiration. God bless

    • jenni
      jenni Posted on April 20, 2015 at 5:03 am

      Your story is similar to mine. I was 33 years old, had pneumonia, and I was in the hospital bed ridden for 1 week. I asked my doctor if I should continue my orthotricyclen (birth control) pill and he said yes. We’ll I obviously didn’t need It at the time and these doctors areally only human and we are there experiments because one week later I ended up with what felt like a sprained leg or pulled muscle. I went to my doctor for follow up and he didn’t check my leg just said you probably pulled a muscle, so I didn’t question him. I continued driving and walking and me leg started feeling heavy and harder to walk. I took ibuprofen and went to bed early. The next morning I went to the Er. My husband had to almost carry me cause my whole leg sole up, sure enough I had a blood clot. I was told I would be on blood thinners for th he rest of my life. When I saw my doctor again, he says I never though you would get a blood clot because you are too young. That’s nice I ghou g t, this could have been prevented. This has ruined my life. I’m Glad To Be alive. Here it is 8 years later and I have a blood clot same leg again. I was off blood thinners for over 7 years. But this episode felt like I was always getting bad cramps on my calf, couple days later I noticed my leg swollen, red and hot. I went to er and after all the testing, I’m glad I listened to my body I knew there was something wrong, but deep down was hoping it wasn’t serious, but it was.

    • Arianna
      Arianna Posted on October 23, 2015 at 10:34 am

      Tara you story is so similar to mine. I was diagnosed at the age of 20. I was diagnosed on 9/23/14 I was at work. I was a housekeeper at the time and i noticed to even sweep back and forth I was so out of breath. I didn’t know what was going on. My chest hurt and I felt like I couldn’t catch a breath. I use to donate plasma so when I got off work i went to donate plasma and sometimes it would make me feel a little weak. After I got done I went to Walmart and I had noticed my arm went numb and I got really dizzy, VERY HOT, and I felt like at any moment I was going to pass out. I put everything down and hurried to my car I didn’t want to pass out in Walmart I would have been embarrassed. I got to my car and put the AC on full blast and I couldn’t drive. Finally I was able to drive and I went home laid down and still felt absolutely horrible! I finally called my mom and told her to take me to the ER. On the way there I told her never mind turn around and take me home. I didn’t feel like waiting forever in the ER and I was convinced they would say nothing was wrong. Luckily my mom forced me to go. After 7 hours of waiting I finally got called back and I told them my symptoms and they did a CT right away. Not long after that a nurse came in and told me to change in to a gown. I didn’t understand why I had to. Only to find out the Dr’s came in right after that and broke the bad news. I have multiple blood clots in both lungs. My eyes watered up and I looked at my mom who looked at me and we didn’t know what to say. They immediately gave me a shot in my stomach and admitted me in to MICU. I was terrified. My mom called couldn’t stop crying. To top it off when they took me to MICU it was the same room where my papa was in a few month before when he was fighting for his life. Blood clots do not run in my family the cause was from my birth control pills also. I got off them right away. I was told I couldn’t get pregnant because my baby would be deformed. 2 months later I got pregnant and was mortified. Not only was I scared because this was my first baby but because of what the Dr’s told me about having a deformed baby. Before I got pregnant they were going to the the D dimer test and the genetic test that December but I got pregnant so they had to push it back. I had to switch from Coumadin to lovenox injections through out my whole pregnancy. Today I have a healthy and happy 3 month old little boy. Monday 10/19/15 I finally had my first appointment with my internal medicine Dr and they did the D Dimer test and Gentic test. It takes about a week to get the results. As of now I’m off blood thinners and I couldn’t be happier about that. Hopefully my results come back and I get good news. Like you I’m ALWAYS worrying when I feel an ache or pain that it could be a blood clot. I’ve been off blood thinners about 4-5 days and I’ve noticed the past two days and I’ve notice a little chest pain but no shortness of breath. Now I’m constantly thinking the worst. I pray it’s not a blood clot and everything is okay. So glad I was able to read your story! I felt so alone. When I would go to my appointment when I was pregnant the student Dr would see my first and then my Dr and the student Dr’s always freaked out when they would read my chart about my PE’s. I would always hear “your lucky to be alive” numerous of times and it brings me to tears thinking of what the out come could have been. Sending my love!

      • Arianna
        Arianna Posted on October 23, 2015 at 10:39 am

        Oops made a few spelling/grammar errors. Darn auto correct!

    • Vickey Weiss
      Vickey Weiss Posted on January 24, 2016 at 2:58 pm

      I have a history of pulminary embulisms after a knee replacement and because the work comp adjustor failed to send the home heath nurse out to draw blood for an INR. I am 57 was in an accident two weeks ago (and while i felt a bit banged up), I was okay until 3 days ago. I went from a 4 to a 9 on the paint chart. Before when I had the PE’s before i really wasnt in pain just short of breath, weak and dizzy. That was 6 yrs ago, The Doctors were unable to stabilize me on Coumadin during a secondary hospital stay a couple of months after they dissolved the clots. after 6 weeks they convinced my work comp company into paying for me to be on Lovenox, which is outrageously expensive. My comp case is closed and I am having to self pay for all my medical. There was a conflict between physicians. One said that once you have a PE you are forever predisposed to develop more clots leaving me permanently on Coumadin, and twice weekly labs. A few years later I changed doctors and he says that blood thinners are only necessary post surgical. The PE’s did not appear to be an offshute of a DVT. The pain feels like a broken rib but I don’t know why it took 2 weeks to appear. Appantently Clots can be very painful also dependng on the location size and other variables. i have beenin so much pain that holding my phone with my right hand is miserable. I am in the midst of a personal crisis and I am afraid if I go to the ER the will admit me and I will lose my dog and everything I own. I usually have an INR of 1.0 to 1.3 unless on coumadin in which case it has gone as high as 6.4. In other post I read that there is a gentic type test to determine whether blood thinners are needed. I am going to the ER later today to determine what is wrong. if anyone knows the name of the test to determine if you need blood thinners please let me know. Also anyone with any tips on utiliizing Coumadin without the crazy ups and downs.

    • Rachel
      Rachel Posted on May 13, 2016 at 10:23 pm

      Your story is identical to my friend. She has now been admitted the hospital after numerous times of being brought in by ambulance than told she had a pulled muscle or flue virus. That had been going on now for 3 weeks. The day she went in the ambulance had been to her home and said her vitals were fine. So needless to say she was not brought into the hospital. That same day the ambulance was called in once again and this time she was admitted into the hospital where she is now. My friend is 70 years and it is not something to play around with. They diagnosed her with blood clots in her lungs and in her legs. She is now being injected in her belly with blood thinners and has now gone on Warphine for the rest of her life. She is lucky to be alive. She is still week, and has problems breathing and her cough you swear she has an infection in her lungs. I am happy she complained otherwise she may not be here today. She still is not out of the woods yet. I am praying to God every day that she soon becomes healthier

    • Hope Garcia
      Hope Garcia Posted on June 26, 2016 at 2:35 am

      Imy story us different I’m 37 yrs old I did go to the ER 3different times finally the third time got me admitted in the hospital I had phomonioa and blood clots in both of my lungs I’m not on any birth control pills so I’m still waiting on getting blood work done to find out what the cause of them. When I was 9 my mother fractured her pinkie toe the put a full legged cast on her 2 weeks later she was complaining of short ness of breath pain in her chest the Dr ingorged her symptoms she passed away at the age of 33 from the cast being so tight it caused her to have DVT and PE anyways I was scared when the Dr told me that I had PE in both of my lungs not sure if I’m gonna be on blood thinners my whole life but for now it is for 6 months if I would not have gone back to the ER I may not be here now to share my story

  2. Judy
    Judy Posted on October 30, 2013 at 4:34 pm

    Hi till today I thought it was just me that suffered from DVT at a young age.
    I got married in 31st of August 2002 age 20. I flew to bancok the next day for our hunymoon after 3 days of shopping flew to puket what turned up to be the worst 5 days of my life
    From day 1 I had chest cold simptems I felt a pain in my lungs by the 2nd night I was hesterical in the hotel room screaming in pain from my lung to my ribs to my back I would stand under hot shower to relive some of the pain. I was rushed to er they couldn’t work out what was happening to me so I was sedated for the remaining of my time their I was sedated then put back on a very long flight back to Sydney (just imagin how much pain I was in)
    In Sydney I was rushed to hospital and again they couldn’t work out what it was I was injected a dose of Hepron and sent home . For two days I was in so much pain then I woke up the following morning with pain in my leg to the point that my husband had to carry me to the bathroom and back. When both our mothers visited that day they put their Mediterranean olive oil theory to the test. They massaged my legs with it (please don’t go their) with in hrs my leg swell up so just imagin an average size 10-12 girl with one legg that looked like it belong to a size 22 lady. Not to mention the pain and burning sensation. Then I decided to go to the medical Center as soon as my doctor who had no I dea what was happening he spotted me trying to walk down that long corridor he yelled out to the receptionist to call an ambulance and rushed to me he sat me on a wheel chair and said dose it hurt to breath? I said to much he took a deep breath and said young lady the ambulance will take you emergency know I have requested for dvt Doppler I guaranty you you have clots he said its unusual for someone of my age to have this but he said it wasn’t uncomen
    From that day till 2005 I was in and out of hospital in picked and tested on like some lab rat I kid you not I gained well over 15 kilos my vegetables wer slowly elemenated from my diet at one point I was unable to walk with ought a walking frame one problem after another in 2005 I was seen by a herpetologist and he was shocked at the way my case was handled all my blood group was clean the only thing that could have provoked this could have been the pill plus a tlight he said well two choices keep going or lets stop all the meds I was taking everything and see what happens. So I did in 2005 I stopped it all I was told I couldn’t have children as during the past 2 yrs I developed POS in 06 I had my first son in 08 I had my second both wear c section and only during and six mth after birth I was on clexain injections ( boy did I brus) in 2011 my son said something about my sergical compression stockings something along the lines of him being so worried that I’m in constant pain I took them of and never put them on again
    Know I’m a mother of two up till a week ago I was running a very demanding cake decorating retail store on my feet for almost 18hrs a day I have swelling in my leg I can not prevent that it the damage left behind from so many clots at different locations calf back of my knee thighs groins just to name a few. The waight dosnt help I’m still unable to jog Runn or go down on my knees however recently I have given up work moved to qld between 9-2 I plan to work on my self I find swimming in heated pull helps with my leg alot I was always told to be off my feet legs up I was never told to excercis
    To hear that other 20 year olds have lived the pain that I have makes me fill I’m not alon (what great start to my marriage that was)
    Lesson to take is please listen to your body have faith no matter what religion or background you are be greatful your alive keep yourself healthy dont take the pill.

  3. Greg Jarosch
    Greg Jarosch Posted on November 4, 2013 at 6:46 am

    If you have the time to lie flat on your back with your legs at 90 degress against a wall, shut your eyes and relax for just 10 – 15 minutes a day, every day, you can make it through life and give the 7/24/365 machine we call our body a well earned rest. Just 10-15 minutes. Don’t get up fast, take it easy. But for the rest of the waking day whether sittting at a keyboard, in a plane, a car or anywhere seated give the body a break, twitch those muscles, if you can stop and get out and just walk a little. Would it be great if on long haul flights there was a treadmill bolted down and passengers could walk 10 minutes at a time, or car or office seats had built in massagers! No blood clotting, like nervous stress and tension when not under load is not fun and not normal. Keep moving, keep eating as little as you need, not as much as you want and sleep easy – the rest will take care of itself. Good tidings.

  4. Sarai
    Sarai Posted on November 7, 2013 at 11:25 pm

    Hey all! I’m Sarai. (Pronounced like Sara). I’m 15 years old. I was recently diagnosed with blood clots also. I had some in my lungs, some in my right leg, and some throughout my whole body. I was on the pill to manage my PCOS. The doctors think it was the pill that caused it. Yep, i’m now on comadin. I get my INR checked twice a week. I’m not gonna go into details about what happened because I’m pretty sure y’all don’t wanna be bothered by that. But anyways, I just wanted to say take care of your body. If your gonna go on the pill, be very careful. And I’m glad most of you all are okay and everything will be okay.

  5. Jacqueline
    Jacqueline Posted on April 8, 2014 at 12:44 am

    My pe started out as a bad chest cold and turned into a fever, horrible sounding cough and eventually coughing up blood. I realized it was time to go to the er when I was unable to lie on my left side. Upon arriving at the er, they suspected I pulled a muscle or I had pneumonia. They were going to send me to chest X-ray and send me on my way, but couldn’t give me pain meds Bc I drove myself to the er. Not sure what made the er dr reconsider discharging me, but decided to order a firm blood test. That test came back positive (can be positive for many reasons, incl pregnancy or stress) they sent me to get ct scan. Minutes later, er dr told me I had a clot in my lung and that I would be admitted to hospital. They told me they were so glad I decided to come in and not ignore my body. The only explaination for a 29 year old women, is that I took birth control and I was a previous smoker. Never into wildest dreams, would I have imagined the outcome of that er visit. I still have pain in my chest, 1 year later. I have been to the er once already and they did not find another clot. They chalked it up to having a damaged lung. But who out there with a blood clot, can honestly say thr every pain and pinch you feel, doesn’t scare the life out of you!?! I hope every person listens to their body and never second guess yourself it feel like you shouldn’t get a 2nd opinion, it could save your life!

  6. Jill D
    Jill D Posted on May 6, 2014 at 4:34 am

    My daughter also felt that she had pulled a muscle from working out. She told me one day that it hurt to breath. I told her to take Ibuprofen and that she would be fine. The next day she said “mom, it hurts a lot when I breath”. I immediately took her to the ER. Thankfully we had a great ER dr who immediately told me he though she had blood clots in her lungs. He was very upfront with me and my daughter. CAT scan results and blood work showed that she definitely had blood clots in her lungs. My daughter was a non-smoker, but recently started taking birth control. I honestly believe the birth control pill caused her clots. She was on Coumadin for 6 months. She had to get her INR checked weekly. It was a nightmare. We had genetic testing done, and she has no clotting disorder. I can only blame the birth control pills. Please be careful. I know BC pills can be effective and can work well, but in the wrong person, they can cause major health problems. Just be careful!!!

  7. Lucy
    Lucy Posted on May 12, 2014 at 12:44 pm

    Hi, I am 20 and recently and 2 weeks ago had my appendix removed. The day after I had suspected DVT and within 2 days it was confirmed I had several clots in my lungs following this I was on oxygen for 4 days. I know have blood thinning injections and will be on Warfarin for the next 6 months attending the hospital twice a week. People do need to be made aware and my only risk was that I was on the pill. I am a non-smoker and now been impacted for the rest of my life. It makes me realise how things can change so quickly and how precious life is.

  8. Melissah
    Melissah Posted on October 30, 2014 at 6:38 am

    Hi i also have several blood clots in my lungs and also an extremely large one from my ankle to my armpit. I was taking hormone replacement for the last 10 years and I was misdiagnosed for over a year before someone thought of doing an ultrasound. My leg was the size of an elephants leg and i could not walk…. original diagnosis of this was that i had fluid retention and did not drink enough. The next symptom i had was really bad shortness of breath for no reason which i just woke up with one morning. My doctor and several others i went to told me i had emphysema and put me on emphysema medication and fluid tablets which actually made the blood clots be restricted by the veins and artery and nearly killed me. I was hospitalised for 3 weeks and still having daily INR tests and injections of warfarin six months later. The drs at the hospital say i am lucky to be alive as most large blood clots like mine are only observed in autopsys. I will be on warfarin for another 5 years.

  9. Melissah
    Melissah Posted on October 30, 2014 at 6:44 am

    By the way i am a non smoker and had not been on any flights whatsoever which apparently are the major causes of DVTs and PEs. If i had listened to my GP i would be dead now. I urge anyone with swollen limbs for no reason, shortness of breath, pain in chest especially when inhaling to go to the emergency dept at your nearest hospital, dont bother about your GP as most will look for simple causes before even thinking of anything serious. I even went to a strange dr for a second opinion and was asked if i was on mental treatment for anything as he believed i was been a hypochondriac……. i have since gained satisfaction from this doctor as i went back to see him after and took the hospital;s letter with me to show him. He was deeply apologetic and said he would not be so flippant next time and i told him yeah there wont be a next time with me becos i am not coming to you again.

  10. Ken
    Ken Posted on January 17, 2015 at 6:29 pm

    Hi all, was recently diagnosed with deep vein thrombosis all throughout my left leg. Like everyone else I thought it was just a muscular strain. I’m extremely active individual and consider myself to be in very good shape. So naturally I start to think why me. No risk factors or anything only thing I can think of is the five hour flight I recently had home from the United States. Currently I am taking Xeralto which I heard is somewhat controversial and I am awaiting an appointment with the specialist to determine why this happened. In the meanwhile it is so nerve-racking to think of the possibility of being a butt dinners for the rest my life. I came across this website because it really helped me cope with the stressors I am currently experiencing. All I know is I had to force myself to go to the ER as I was stubborn and in denial that there is anything wrong with me. I am extremely fortunate that I went when I did as of course as you all know if you turn into a pulmonary embolism. I definitely found this blog very comforting as I know whirls to return to you as this isn’t exactly something I happens to many people especially under my circumstances with no significant trauma her extremely long flight. At the moment just a little scared and confused keep you guys updated with what’s going on.

    • Susan
      Susan Posted on March 1, 2016 at 6:18 pm

      I’m a 30 year old female I have a total of 9 clots Right now an 8 in my lungs an one in my heart with has already caused a heart attack I also have hyperthyroidism with it an it’s causing More problem s I now take over 14 prescription s a day an very scared that my life is not going to be a very long one I have yet to see a bit dealing with Everything at one time is there’ anyone that can give me something to have a little hope I know God is there r I would not be alive my name is Susan thank u

  11. Malinda
    Malinda Posted on January 18, 2015 at 4:36 am

    I had a DVT in my left leg, I diidnt know that at the Time. In 2009 I just had a little baby girl, I was at home and in the bed room I had been having pain in my leg for a couple of days I though that I was walking to much, but then I got up to go to the kitchen and could barely walk I made itto the couch and had to call 911 cause I couldn’t walk at all, the paramedics carried me down 2 sets of stairs and got to the hospital and they told me I had a DVT I had to take lovnox shots for a while and staied in te hospital for 2 weeks when I went home I was still on walfaien.

  12. Leah
    Leah Posted on February 15, 2015 at 4:59 am

    Hi everyone. I just got done reading all your posts. I’m 41 years old and I have had 3 PEs. I am currently house bound, on 5 liters of oxygen 24/7 and on light bed rest. I’m very happy to be here and have the opportunity to share with others who have been though the same thing as me. I also would like to offer my support and advise to anyone who needs it. I guess I can be considered the veteran here. Lol!

    My first PE occurs in 2009. Two weeks before, I had flown from California to Florida to visit Family. I thought I was having a heart attack. I ended up having one clot in each room. I ended up taking Coumadin for six months and doing my INR sometimes once a week, sometimes twice. For some reason I have a hard time remaining stable on Coumadin. My second PE was 2011. I had just had surgery. I don’t remember a lot about that one because I had other complications from the surgery as well and was miserable. The only thing I remember is that they did the CT in the middle of the night, told me there was nothing wrong, sent me home only to call me several hours later to tell me to come back to the hospital because another radiologist looked at the scan and saw one blood clot. My third occurred Christmas day 2014. I was misdiagnosed twice. Once I was told I had asthma and the other time I was told that even though he saw nothing in the x-ray the doctor thought it might be pneumonia since I have gotten that every year for 12 years. so I have been hospitalized 2 times since my diagnosis nearly 3 weeks after onset symptoms. During my second admittance to the hospital it was determined that I would go home on oxygen. I did okay with lugging an oxygen tank everywhere a first. Then I started having a great deal of difficulty breathing again. I should have been admitted that time too because I had even more clots than before. The doctor was a major jerk, but now I have a home health care nurse twice a week.

    It is scary when this happens. Physically and mentally. I’m glad you all made it, but take care of yourselves. I do not carry any genetic markers for a blood clotting condition. I will be on Coumadin for the rest of my life.

  13. Stephanie
    Stephanie Posted on February 23, 2015 at 10:46 am

    This story just took my breath away. I was hospitalized in 2009 for 8 days with PE. I too was misdiagnosed by an immediate care facility with possible pneumonia or pleurisy. I was given strong antibiotics and sent home. The pain only worsened. I couldn’t do anything. It was paralyzing. I finally went to my primary and she sent me to the hospital right away. A CT scan told them all
    They needed to know and I was admitted immediately. There was no sign of DVT. It was a very scary moment in my life. It is VERY important to listen to your body! Get 2nd and 3rd opinions if necessary.

  14. Stephanie
    Stephanie Posted on February 23, 2015 at 10:48 am

    And like you the doctors attributed my condition to oral contraceptives.

  15. Ciara
    Ciara Posted on March 9, 2015 at 5:24 pm

    Hi everyone ,
    I’m 22 and have multiple clots in both my lungs , I developed them in 2014, It all happened in one year, and so many of them. I’ve been put on on the new drug Xarelto. I still clot while on this drug though. The doctors are baffled. Which makes everyday so scary. At the moment I’m very depressed and struggling to come to terms with this. The doctors say I’ll be on this medication for life, with my young age, the amount of clots even when on treatment I’m at high risk for stroke and a heart attack . They only seem to pop up in my lungs though. I wanted to ask how do you deal with this ? The thought that at any moment I could drop is nearly killing me itself. Because my clots won’t go away I have constant pain in my lungs which makes it difficult to decide when shouldn’t and should head to the ER. I can’t talk about this with my mam because she goes into a crying fit. My friends are there for me but don’t understand why I’m so scared all the time. I have a great job which I used to be the best at but ever since this I cannot work as hard, I get weezy and out of breath and become overwhelmed with chest pain, which usually means I spend whatever spare time I have in the hospital making sure I’m not about to die.
    Does anyone have any suggests or does anyone else feel like this even?

    • Sarah Barga
      Sarah Barga Posted on May 17, 2015 at 6:00 am

      Ciara, I feel the EXACT same way. I’m 20 and was diagnosed with a PE a few months ago, I’m ok Coumadin for at least a year but possibly life. Our anxiety sounds the same so if you ever just want to talk email me!! I feel the same way my friends are there for me but they do not understand why I freak out bc they have no idea what I’m dealing with! Sometimes I just feel helpless but I’m glad to know I’m not alone

  16. Erica M
    Erica M Posted on April 2, 2015 at 2:01 pm

    I too had this happen to me back in 2012. I had pain for a couple months. Kept getting worse. I had everything from a cold, to a pulled muscle to pleurisy. I was being treated but not getting better. There was a really good hospital next to my job. Felt like I was having a heart attack and went there. They ran blood work which showed signs of clot and when they did the xray, there they were on my right lung (which is strange cause the pain was on the left side). I was put on heparin and kept in the hospital for 7 days then lovenox and coumidin. A year of weekly blood test and constant changed to coumidin dosage. To this day I am always terrified when ever a pain hits. I just had a really sharp pain at my desk and decided to google it and came across this site. I was on birth control when this happened before. I am not now and was tested again last week for clots, negative thank God. It is scary but we made it many do not. God bless you all.

  17. Ray
    Ray Posted on April 16, 2015 at 8:48 am

    I accepted that I was going to die a long time ago.. But not from this. So no, I don’t worry about my dvt and the several clots I had on each lung. I cut my xarelto at six months and never looked back. Sure it’s hard to breathe when it’s 95+ where I’m at… But at 29 stress will kill you faster if you’re not genetically predisposed to clotting.

  18. Autumn
    Autumn Posted on April 18, 2015 at 10:50 am

    Hey everyone I’m in the same boat. I am glad I’m not alone but then again I wish no-one would need to go through all this..
    My story is really long..so long story short.
    I had my first baby age 21 three months past got on bithcontrol was on it for a month…woke up one morning and I went to walk but couldn’t pain was awefu in my right legl..I called my bf (husband now) to come home. Took me to doctors they said I has siatic pain from pinched nerve..they gave me exercises to do and muscle relaxers sent me home. Next more I went to stand up even worse pain but in my left leg now..so I did the exercises..didn’t help..went through most the day criing and throwing up…pain was bad. That night I wasn’t any better took my temp 102..my mom in law made me go to ER..I had to have my bf and his dad carry me it was to awful to walk.
    Got to ER to find out I had a solid blood clot from my ankle up to my belly button. …with only two veins open. I was taken to hospital in city and all they did was put me on pain killers blood thinners and PT. They kept me for about 5days made me walk on my leg with it swollen 3-4x its normal..pain pain pain..that’s all I can say. Then yhey sent me home.
    Once home for 2days my pain and swelling only got worse I called but they told I would be fine..then i went in for inr check the nurses wouldn’t let me leave without being seen..that doctor told me I was just depressed and wanted pain killers. .so my sis and I went back to my home. Thats when I sat down and triied to get up but couldn’t move either of my legs the pain had become even worse.
    My sis made me go with my dad to the other hospital in the city’s ER. The did test and everything..I need surgery my blood clot had moved up farther and one of my arteries in my left leg had moved so it was laying on my veins not allowing blood flow..test came back factor 5 leiden..
    Well after two surgeries a filter and stent were passed then a week or 2 in intensive care..my pain and swelling started to go down and I was finally able to hold my baby again.
    Went home a couldn’t walk or carry wnything for a month then I slowly went to a walker to cruches then to limping. After my blood clot reduced i got the filter taken out of my lungs.
    I know have to wear stocks everyday and I am still on blood thinners two years later..they honestly will not tell me if I will ever be off them. My INr never stays in one place no matter what I do its either to thick or too thin even though I don’t enjoy all the crap I need watch out for with have a DVT and being on blood thinners. .I am really happy to be alive and not miss out on my loved ones lives.

  19. Amanda
    Amanda Posted on April 21, 2015 at 11:36 pm

    Hi! As most everyone else on here I to suffer from pe!
    I was on bcp for over 13yrs. I was at my obgyn and she fussed at me for my blood pressure! That runs in my family and I know I have hBP and I will always have it. So she sent me to a pcp. I never went to any other dr because I didn’t feel the need to. I have always felt fine and don’t really feel any different today. So when I went to pcp they put me on BP meds. Once I started them I became short of breathe and dizzy to the point were I couldn’t walk up stairs and would black out. So I went back and they thought maybe it was an allergic reaction. So they switched to a different kind and said try that! Well didn’t get no better so that when they started running all sorts of tests. Chest xray, ekg, CT scan and blood work….lots of blood work! That’s when a radiology tech said I should already be dead and then was admitted to hospital. They claimed that both main pulmonary arteries in my lungs were full of clots! They put me on shots and pills and more blood work. After my stay there and them doing nothing but observation and administering my hourly pills, I was still on shots and cumadin. Daily finger picks to check levels and trips to pharmacy to get more drugs! Finally they sent me to a blood specialist and changed me to xarelto. Took that for couple months and then more blood work. My last visit to blood dr said I was healthy and to quit taking all the drugs. And still I don’t feel no different than I did before this mess. They say it was due to taking birth control pills. Needless to say I don’t take them anymore! But also I have always had really bad busted veins in my legs. And I have always asked every dr I have ever seen about them and they just said it was nothing to worry about and nothing to do about it. even stranger is I beleive I can “feel” the clots moving in my legs. The Dr’s just look at me like I’m crazy but I swear I feel them. But you can’t stop living and having a life. Just smile and keep moving!

  20. Amy B
    Amy B Posted on April 24, 2015 at 4:51 am

    Hi there my names Amy and I’m 16 years old from Cornwall England. Like most of you on here, I have suffered a blood clot and several pulmonary embolisms, I won’t go into huge detail about my story because we are all similar with misdiagnosis in most cases by the looks of things. I’d just like to comment to say that it is so reassuring to know that I’m not the only one that has been through this and at a young age too! It really helps to know that I can talk to others that have been through the same ordeal and who ubderstabd exactly how it feels. Thank you

  21. Sandra
    Sandra Posted on May 4, 2015 at 10:03 am

    My 21year old daughter was in hospital with a severe asthma attach, when the wheezing stopped and her oxygen levels didn’t improve they did other tests and have discovered that she has blood clots in her lungs. I’m still reeling from this news and my daughter remains in hospital. She now has to decide which medication to take, three choices, injection, warfarin or another new drug, she has asked me to ask you guys for any advice, pros and cons. How is this going to effect her life. Not sure how long she will be in hospital, her oxygen levels have to significantly improve first.

    • Sarah Barga
      Sarah Barga Posted on May 17, 2015 at 6:05 am

      I’m 20 diagnosed with PE 3 months ago, tell your daughter she’s not alone and things have already started to get better for me. I can already run 3 miles again without stopping just 3 months after having this. If she ever wants to talk tell her to contact me because it’s nice to talk to someone who knows what I’m going through!

  22. Adrian Collins
    Adrian Collins Posted on May 18, 2015 at 1:12 pm

    Hi guys I just found out Friday that I have P.E . It started off with a bad pain on my right side from my arm to my back. The next morning I woke up with a cold, which I knew was going to take a while to get rid of. Because I also have a heart condition so regular cold meds dont work well with them. But by last Wed the cold got real bad and I knew something was not right. So I went to the doctor n who sent me to the ER because my heart rate was to high. After all the blood test and Xrays the doctor told me I needed to take a CAT Scan. Thats when I became worried they didnot admit me they gave me Xarelto to take . I also have to go to a lung doctor and to my doctor to get on Coumadin and to get my blood checked every week. It is a scary thing because I have three kids the ages of 15,8,and 1. So all I can do is think about how I dont want to leave them in this world. I am so glad I found this website and read some of you guys stories. It lets me know that I am not in this by myself and there is support. I am 32 so it makes me look at life different. The nurse told me that I have to be careful because I can bruise easy and if I get a simple cut I can bleed a lot.. Now I have to get use to this along with the heart condition that I have .Do you have to change your diet when you have this? It is so new to me. I just pray that I will be here to raise my kids. My oldest walk across the stage in two years and I don’t want to miss that for anything in the world.

  23. Lakayla Doxie
    Lakayla Doxie Posted on June 1, 2015 at 4:23 am

    Ken, your story is very similar to mine. I had no risk factors at all and to tell the truth I very rarely ever even get sick with a cold. All of a sudden I couldn’t walk around a single block without having sharp chest pains and shortness of breath. My close friend who’s an Rn said ” Schedule an appointment today because your daughters need you in their life.” I’m so thankful to this day that she said that one sentence because that’s what made me go to the doctor. That same day that told me that it was Pulmonary embolisms and put me on Xarelto, which I may have to be on for the rest of my life. My primary physician told me that I have Protein S Deficiency, which may be hereditary. I’ve scheduled my 12 year old daughter an appointment for tomorrow and just praying for the best. It’s comforting to know that other’s know your struggle. I was only diagnosed on May 4, so all of this is new to me. But it’s very humbling when several doctors tell you that you’re lucky to be alive. It’s starting to make me look at life differently and realize that I’m not inevitable. My prayers are with you all and your families. And please take care of yourselves.

  24. Michelle
    Michelle Posted on October 19, 2015 at 4:41 am

    My husband was admitted to the VA Medical Center with many lung clots yesterday. The largest became a sharp pain 48 hours prior. He naturally keeps his blood thin already with vitamin e, and fish oil, at age 71 he takes no daily medications, only vitamins, minerals and herbs. I stopped pharmaceuticals in 2001 when a internal medicine doctor told me there is a natural equivalent to every prescription. Use food as your medicine it works great! Turmeric works like anti platelet, ginger, avacado, berries, chilies, cherries, have the same ingredient as asprine. Vitamin. E a natural blood thinner. Good food sources tree nuts, whole grain wheat ( if not GMO) a few dark greens like spinach, fresh organic pineapple has bromelain, apples, buckwheat, oranges, grapefruit, lemons, limes, onions, and teas are all natural ways to dissolve clots and keep you blood thin without prescriptions. Also cbd and thc capsules or tincture keep the vessel walls clear of plaque, flexible, and blood flowing.

  25. Kellie Holm
    Kellie Holm Posted on November 12, 2015 at 10:32 pm

    Thank you Tara for possibly saving my life because after reading your narrative, it convinced me to go to the local ER to be checked.

    I was battling a cold/bronchitis for a month. It was so ill and out of breath. I went into 3 different walk in centers to get checked. The first just noted I had a virus, the second time I was given antibiotics for bronchitis, and third time I was given the dx of a rib contusion. I awoke one night and I had this horrible pain from my shoulder to chest plus racing anxiety. I attempted to calm myself for about 45 minutes using deep breathing so I could center myself emotionally. It wasn’t working. I then just googled my symptoms and your story came up about getting to the ER for shortness/chest pain and don’t delay a dx. I thought they were going to brush me off but they gave me a xray and it came back fine. Then they gave me a CT scan only to find a PE in my left lung. They put me Xarelto so I will be taking it for 3-6 months. I also had faith that I would be okay because others have had similar experiences and they were okay. Thanks for keeping me positive and being an inspiration for getting checked.

  26. Eddarwin Coleman
    Eddarwin Coleman Posted on November 20, 2015 at 2:39 pm

    I just want to thank you all for posting, it’s good to know that I’m not alone out there. November of 2014 I to had blood clots fulled in both lungs, what a life changing experience the doctors told me that I had reach the ER just in time . They proceeded to put me on meds like many of you all and finally I was told to stop taking them six months later. Here it is a year later still wondering if I will get clots again. It’s just a scary feeling but I keep my faith in God and keep in contact with you guys now that I know im not alone. Love you all and thanks for all the stories and advice.

  27. Seen it all now...
    Seen it all now... Posted on November 21, 2015 at 2:47 am

    Wish I had found this site earlier; I might have saved my sister months of suffering. She has had severe, debilitating rib pain for months, went to multiple doctors who just basically blew her off, and finally ended up having a seizure which landed her in ICU. Next day an artery ruptured in her intestinal tract and she received more than 30 units of blood over the next couple days. She also suffered 2 heart attacks in hospital. Through it all she continued to complain about pain in her ribs. The cause of the seizure was never determined and she was sent home after only 9 days, in extremely weak condition. The pain continued. A week and a half after being released, her blood pressure fell to 60/40 so her husband carted her back to the ER where a CT scan–FINALLY–was ordered on her lungs, revealing a significant number of clots in both lungs. She’s back in the ICU and I am beyond disgusted with doctors.

  28. Dylan Wiperi
    Dylan Wiperi Posted on November 29, 2015 at 5:49 am

    I’m 32 was hit by a car bed ridden in hospital felt short of breath ct scan showed I had multiple blood clots on the lungs when the doctors told me I would have 2 injections a day for a week and a Dabigatran pill twice a day for 6 months didn’t sink in till started reading everyones stories about how we could fall over dead heart attack or stroke now I am so stressed it ain’t funny

  29. Lori
    Lori Posted on December 8, 2015 at 1:36 pm

    Young or old(er), when something is not right,always listen to your body, I am older, but healthy, … so out walking my pups, for a typical outing with the pups, enjoying a brisk walk in the autumn air,When all a second felt as if I had been hit in the right rib cage with sever “certalized:” intense pain, Managed to get home ,while struggling, just to breathe,& to remain calm,leaned against the counter, forcing to grasp air ,while trying to remain calm, wishing for me to breathe ,and focusing in my mind to breath, just to be less painful… on goes the story till I forced my husband to call the Dr.s.. again a long story shortened.. Am so glad we went to the ER, I am recovering because we went ..and am alive, because I listened to my body, that something, was not right… live healthy, love daily and may God Bless you all , lol

  30. Tina
    Tina Posted on December 26, 2015 at 4:07 pm

    Hi Tara. Thank you for sharing your personal story. It has made me realize that I am not alone and being from Africa, I am so lucky to have got the medical attention required by anyone with DVT/PE. Mine is a different story coming from a different setup as I live with my small family in Rwanda (East Africa). I have always been a healthy, hardworking mother until April 2015 when I became pregnant with my third baby. At 7 months, I was put on bed rest due to signs of Preterm Labour. I had the baby girl, Kiera at 8 months on 23rd November 2015. The baby was in NICU from 24th November due to Respiratory distress and I was discharged from the hospital on 28th November leaving her in hospital and having to pump and take breast milk for her twice a day. Everything seemed fine except the abnormal swelling of my legs and feet. I didn’t seem to feel that my right leg hurt a lot because I had the wound from my C Section to worry about. On Saturday 29th November 2015, my house maid accidentally put black pepper in my tea instead of ginger and when I developed a cough that night I thought it was due to black pepper so I left it to take care of itself. On 30th November, I bought some cough syrup and started taking it fearing that my very bad cough would stop me from seeing my baby in Neonatal Intensive Care Unit. That night I started wheezing from my right side of the chest and having very bad chest pain while breathing in. I had sudden shortness of breath and difficulty sleeping so had to sit at an angle of 90 degrees to feel some relief. At 2am of that night, I nearly died when I was trying to go to use the toilet. I could not stand on my 2 legs and had no oxygen at all. I woke up my aunt who was around to help me during childbirth. She said I am having a cold and I should cover myself well as usually at 3am this side of the world becomes really cold. I listened to her and covered myself but this didn’t help take away the chest pain. I called my husband who is doing his Masters in Internal Medicine in UK and explained my symptoms and he advised me to talk to a doctor. At around 6am on 1st December, the first GP my aunt spoke to advised that I should rush to the ER of King Faisal Hospital, Kigali which we did by 7am. The GP who saw me in the ER order that blood be drawn for test (Full Blood Count) and a Chest Xray be done. She also called the Internal Medicine department and an internist was sent to have a look at me and my signs. After the xray results came out, a CT scan was ordered as well as a right leg doppler ultra sound. The CT scan showed that I have Pulmonary Embolism, Pulmonary Edema and Pneumonia and the doppler showed that I had DVT in my right leg. I was immediately admitted and started on medicines for thinning blood, for edema and antibiotics for pneumonia. I stayed in hospital for 10 days treating the blood clot in my lungs while my baby was still in intensive care. This was the most trying moment of my life. Sometimes I wanted to cry but I could not even get a drop of tears. Someone died from the clots and left a newborn baby in the maternity wing of the hospital while I was alive and my baby’s health was improving so I didn’t have any reason to cry instead I had to be grateful to the great medical team at King Faisal Hospital, Kigali for the swift medical care and attention and to the almighty God for giving me another chance to live and raise my 3 beautiful daughters. This experience has changed me in many ways and I keep worrying that what if this happens again and I am not able to get the signs right and I die leaving behind my youthful husband and young children. On 23rd December a follow up CT scan was done and it revealed that there is an old clot in my pulmonary artery which hasn’t dissolved but Drs assured me that it will dissolve slowly and won’t cause any harm to my health. I pray that I don’t develop a new clot as this is always my worry. I am also on Warfarin and I have to have my INR checked every week. I have changed my diet to exclude everything rich in Vitamin K. I am adjusting to the new me because its the only way I will live a clot free life. I am planning on looking out for other survivors here in Kigali and sensitizing others about PE and DVT. I believe I was spared for a purpose and I am happy that I will be healthy again to be able to talk to many people about this condition. Be blessed and Happy New Year 2016 to you all.

  31. Linda
    Linda Posted on January 10, 2016 at 7:31 am

    Hi there everyone. I was having chest pain also and thought it was gas. I went to my sister Doctor who placed me on metoprolol cuz of my rapid heartbeat.but I still had chest pain. So I went to the hospital and they did all these test, ultrasound, CT scan and X-ray, one dr came back and told me I had a blood cloth in my lungs. So they admitted me and gave a blood thinner shot. The next day another dr came and told me there was no cloth. So why am I still getting this pain. Am still on metoprolol. If I get off it I know my heart will race. Am so scared, I think am gonna go back to the hospital, I am still getting chest pain, and my throat feels funny. I am 41 with no kids. Just don’t know what’s going on:(((

    • KMace
      KMace Posted on January 31, 2016 at 7:26 am

      Find a doctor that will listen to you and dont stop until you do…. most the old doctors wont listen at all…

  32. Patti
    Patti Posted on January 29, 2016 at 10:19 pm

    My husband had been having a cough that wouldn’t go away, then he got to the point when he couldn’t go from his chair to the bathroom without stopping to catch his breath. He had finally given in to go find out what was wrong. The doctor had him do a chest x-ray which came back pneumonia. After taking a weeks worth of antibiotics he wasn’t better. We went back and they decided he needed to go to the ER. They did all the tests and came back with the results that he had clots in both lungs and too numerous to count. He has been losing energy for over a year but we contributed it to his diabetes. Now we know to go see what it actually is instead of waiting. He has been taking an aspirin, (325mg) faithfully everyday for years. If he hadn’t done that he might have been gone long ago.

  33. Kirsty
    Kirsty Posted on January 30, 2016 at 12:21 am

    Ive bin diagnosed today with blood clots in my lungs all started with a fever bad cough an pain in my chest , I’ve now got to have the jab next few days then hav my scan then I’ll be on warfarin. , I’m in bits why did it have to happen to me I’m just glad I’m alive xx

  34. KMace
    KMace Posted on January 31, 2016 at 7:24 am

    Hello everyone…. My wife and I have been going through PE for a while…. she was first diagnosed 13 years ago at age 25. Yesterday she told me that she felt a “familiar” pain in her right chest… Yep- multiple clots again…. last time she was given Heprin and then Comadin. Fast foward to last night….- Here she is visiting me while I’m TDY in Wash. DC. Luckily the ER doctor listened to her and had “some” idea what she was talking about. He gave her a CT and found the clots in her lungs… its been “13” years… but she still has a clotting disorder. That is two times she has beat the clots, but its pretty scary…

  35. Sharon
    Sharon Posted on February 10, 2016 at 11:12 pm

    Hi
    Here is my story—I went to the ear with chest pain 2 months ago.i had a cat scan and they found 3 large blood clots in my lungs. I was a very active person and had NO symptoms. My chest hurts now as I am typing. Does anyone have the same problem?

  36. Brittney
    Brittney Posted on February 26, 2016 at 7:07 am

    You’re all incredibly strong, remember that when having the good days and the bad days that I’m sure we all have. I was diagnosed over the summer with a pulled muscle that they then decided was “pneumonia” despite the fact my d-dimer test was elevated. I could not breathe, it was the most painful experience. Symptoms eased but I was extremely fatigued and little things like walking up stairs left be breath-less. My grandfather passed away on January 31st, 2016. He was my whole heart and courage I love him more than words could ever say. I started getting the same pain thinking it was the pneumonia on the right side now that was going into my back. I’m only 22 years old. I went to the hospital when the pain got unbearable thinking I could get antibiotics and go to work after. But something told me I should go to the hospital and something was not right. D-dimer was elevated, cat scan showed multiple emboli in both of my lungs along with infarction. I was in the hospital for three days and in and out of doctors and tests since. It’s been three weeks out of work and I don’t know what’s worse the pain of losing my grandfather or the feeling of someone taking a bat to my lungs. I am a rare 2% that has two generic mutations for blood clots. Needless to say I’ll be on blood thinners for the rest of my life. I don’t like to think my life is defined by a pill… But without blood thinners we all wouldn’t be alive. I’m depressed and anxious.. What if it comes back… Am I going to die… What happens when I get pregnant or as I get older… All these questions but all we can all do is take life day by day. Everyone at the hospital had said I had a Guardian Angel looking over me, for without the clot pushing against my liver I would have died. The road to recovery is hard but with these sites it’s helpful to know I’m not the only one.

  37. Tammy
    Tammy Posted on March 23, 2016 at 10:43 am

    Tara, I survived PEs and DVTs. It was suppose to be a simple knee surgery. I had my pre op ,the surgeon and I wentered over family history and my lists of medicines. ( btw my mother ,her sister and 3 of my sisters have a history of clots and I was on birth control w hormone replacement) I trusted the dr. The surgery went fine ,I went home and started to recover,so I thought. The next day I just didn’t feel right. I blamed it on everything. I was tired, I was doing to much to soon, the pain meds and by the 3rd day I even blamed my lack of being able to breathe well on a bra that must be to tight. I asked the physical therapist and she said ,probably ly doing to much. Finally mu husband took me to the hospital. After the triage nurse found out my symptoms and what surgery I had with in seconds I was in a bed and surrounded. After a CT scan. The ER doc came in with 3 nurses and while they were hooking me up to what seemed like a million things he explained what happened. He held my hand as tears were streaming down my face and said “You need to thank your nagging hisband, he just literally saved your life! Had you stayed home I’m certain you would not have woke up tomorrow” I looked at my incredible husband and just started crying. I kept thinking about my two beautiful sons. All the things I wouldn’t be there for had I not came into the hospital. I’m off blood thinners unless I am bed ridden, have any other aurgeries, travel and so on. It changed everything. I appreciated life before this episode but not like now. I still do not sleep well and I’m still in physical therapy and I still worry every time I get sick. Life is so precious and so many little things just do not matter now.I’m still angry at the surgeon for ignoring the simple facts in my history which should have made him take precautions. Women so often ignore their bodiea, we’re to busy, we have stuff to take care of. Well ladies we can’t take care of anything or anyone if we are dead so my life lesson is simple,take care of yourself so you can be here to take of others. 🙂

  38. Tiffany
    Tiffany Posted on April 20, 2016 at 1:15 pm

    I went to the ER last night with chest pain, every time I took a deep breath I had that pinch feeling that almost knocked me to my knees!! They did an X-ray and blood tests which showed my enzymes were a tiny bit elevated so they did the CT scan. The doctor said he is pretty sure it is not a blood clot. PRETTY SURE?!?!?! This is my life here!! Are you sure or not?!? I have 2 kids and school I want to finish!! I got a bucket list the size of the dictionary I need to start on!!! Leaving that hospital had me scared to death, my 18 yr old son drove me home, what if I drop dead of a pulmonary embolism in front of him? He would never forgive himself for something he can’t control. I really feel I should get a second opinion but I have no insurance. I also woke up today with a stuffy nose, a cough and it hurt to even breathe at all, not just breathing deep. I don’t remember doing anything that may have caused a muscular pull but I do remember falling asleep standing up halfway while I was studying the other day. Any advice? I’m only 34 but I do smoke, which I’m trying to quit, and I do take adderall which can affect my heart.

    • roseann
      roseann Posted on June 30, 2016 at 6:37 pm

      Tiffany, what happened after you woke up with that cold and so much difficulty breathing? Did you go to the ED again? I’m being tested right now for possible blood clots, even though I have no symptoms like everyone else on here. They are testing because I have pulmonary hypertension, another scary diagnosis.

  39. Regina
    Regina Posted on April 21, 2016 at 1:04 am

    I was in work and left at lunch break to see my GP As l was feeling ill. I was put on Klacid and steroids that Friday and told to stay off work for a week. Early Tuesday morning about 3am l woke up with difficulty breathing and terrible rib pain. I coughed up the tiniest amount of blood in my phlegm. I phoned a nurse friend early morning and she said to contact my GP again which l did and made an appointment to see him at 12 noon. Tried to shower but the steam came against my breath. Saw doctor and he wrote a referral letter for the ER. I said to my GP that l thought l had pneumonia.

    ER confirmed that l had pneumonia and l was hospitalised. Put on lV antibiotics, steroids and oxygen 24 hours a day. I kept bringing up a murky phlegm all the time So the doctor decided to do CT Scan which showed bilateral blood clots. I have a high pain threshold but had NO PAIN to indicate l had blood clots. Was put on Xarelto as blood clots ran in the family. After six months l was taken off Xarelto but l still suspected while on it that l still had blood clots. Doctor was dismissive saying that l was on the approved time limit however within three weeks had clots and a big one one on my right lung which has damaged it for life. As a non smoker l did not fit the criteria for blood clots or cancer. My doctor said l need to tell my siblings that the clots are herediatory. I am now on lifelong Xarelto. The clots have affected my heart and breathing and Asthma was also diagnosed. I am on medication for that now. The whole thing has knocked my confidence. The Xarelto had to be reduced from 20 mg daily to 15 mg daily because l kept bring up blood and has nose bleeds often. My health has improved thankfully. I am happy to be alive as l have three wonderful grand children and want to see them grow up

  40. Regina
    Regina Posted on April 21, 2016 at 1:49 am

    So try and remember each one of us are different and some of us don’t fit the normal criteria and doctors are human and can make mistakes. We have a gut feeling so act on it if you are unsure.

  41. Brett
    Brett Posted on May 9, 2016 at 1:20 pm

    Started having sharp, stabbing pain in my the calf of my left leg this past Thursday. I have had many pulled muscles over the years and knew that this felt different so I googled the symptoms for blood clots in the legs and the symptoms were the same but didn’t do anything about it because I was scheduled to go out of town this past weekend and didn’t want to mess that up. Last night I started having sharp pains in my chest, rapid heart beat, shortness of breath and dizziness and am having the same thing this morning. Googled symptoms for blood clots in the lungs and came across this site. The more I read, the more convinced I am that is what I have but still hesitant to go to the ER. Any suggestions?

    • SW
      SW Posted on May 9, 2016 at 3:03 pm

      Hello Brett. These could be symptoms of a DVT and PE: https://www.stoptheclot.org/learn_more/blood_clot_symptoms__dvt.htm Please seek immediate medical attention because a PE (blood clot in your lung) can be life-threatening.

    • marc fitzgerald
      marc fitzgerald Posted on May 23, 2016 at 1:36 pm

      Go immediately to ER have the test checking for DVT…………….I did recently May 15th – Blood clots in both lungs and my left leg.

  42. Lemon
    Lemon Posted on May 13, 2016 at 10:02 pm

    My story is close to the same as most are. My problems started in ’83 when I was a cop in Texas. since then I have had 8 DVT and 1 PE. I also suffer from Factor V. If you have had more than one clot anywhere make sure you get checked for it. It is hereditary and you can pass it to your children as I did and my parents did me. y daughter has it and now I hope she didn’t pass it to her daughters. I have been on Coumadin, Warfarin, Xarelto (Got PE while taking and 1 month after they removed my IVC filter) and now Pradaxa. I will be on some type of thinner forever, This all started when I was 22 and now I am 54. Make sure you pay close attention to your body’s aches and pains. Over time you will know immediately if there is a clotting problem I also have LOVENOX® injections for when I have to go off thinner for any medical procedures. You can live with this problem but you need to respect it at all times. I travel as much as possible on my motorcycle (against Dr orders of course, LOL) I will not let it stop me.

  43. Salwa
    Salwa Posted on May 29, 2016 at 4:30 pm

    Iv been going to the doctor since last month, telling my GP and telling the doctors in ER i believe i have a DVT left leg. Somedays i cannot even walk i become completely wheelchair bed/bound. I have excruciating pain in my leg calf but since the last 2weeks this pain has been going up to my abdomen back and chest. ALL left sided. Though i dont have any swelling in my legs, my toenails/finger nails have changed NOTICEABLY in colour to a purple/white. My husband has been stressing to the GP he believes i have a DVT. To add to my symptoms the quality of life i am living at the moment is very weak. Constant chest pain which keeps me from sleeping, out of breath just walking to the bathroom? Constant leg pressure and pain, dizzyness etcetc. My GP said to my husband if youre wife had a DVT she would be dead already. And the doctors in ER just felt my leg and said im fine? I feel like im just waiting for my death. I have enquired with a private specialist to have DVT testing done as the NHS here are completely dismissing me. Its so sad how insensitive and careless they can be. Iv been off work for the last 7weeks because i am incapable and can barely work let alone anything else. If it is confirmed i have a DVT my case isnt with birth pills or smoking because i dont take neither. Rather since i had lip fillers i collapsed 4days later and ever since then my symptoms came about. I know injecting into lip filler into a blood vessel can lead to DVT and finally PE and death. But my doctors really do not care. Hence why i am having to pay to be taken seriously. My prayers are with all you guys blood clots are not something light. And my heart and prayers are with all of you. God bless x

    • roseann
      roseann Posted on June 30, 2016 at 6:48 pm

      Salwa, do you live in England or Canada or somewhere that has National Health Insurance? You mentioned NHS. We people in the USA should read your story and never vote for national health insurance, as look at how sick Salwa is, and her doctors don’t care!!! Please let me know what happened later on. How are you feeling now??

  44. Ann Walton
    Ann Walton Posted on May 29, 2016 at 10:54 pm

    Did you sleep all the time?

  45. maxsfbay
    maxsfbay Posted on July 17, 2016 at 1:37 am

    Hi,
    I just got back from the hospital 3 days ago having diagnosed with another PE situation (2 blood clots in my lungs were detected). BTW, I was diagnosed with PE last year April when I fell in my house early AM while coming out of the bathroom, and was transported to hospital via 911 call. Both times i experienced sudden shortness of breath. Had bruised face because i fell on the table flat face and blood etc. Fast forward, my PCP doctor stopped Kumaden/Warfarin after 6-7 months saying that all the clotting tests they did on my blood samples came out to be negative. Well guess what, I got another clot now in my chest and I’m back on blood thinners (Lovenox injections and then will move to Pradexa for rest of my life it looks like).
    Anyone here experienced or has similar story happened to them?
    Stay alert…

  46. Bob
    Bob Posted on August 15, 2016 at 4:15 am

    I’m 72 and I recently started to bleed from all my orifices. I was diagnosed with thrombocytopenia or no blood platelets which do the clotting. That was fixed up and the platelets went back to normal.
    One day a couple of weeks later I woke up and had difficulty breathing and no energy. I went to hospital and they found clots in the lungs. My blood oxygen levels (SpO2) were very low. I am now taking Xarelto (aka rivaroxaban). A later eye examination showed clots on the retinas.
    Apparently when I had the bleeding problems I had bleeds into the lungs and eyes as well as elsewhere. This is all very recent so I haven’t got the full impact yet.