Luckily, My Story Ends With Hospital Discharge — Kaila Butler’s Story

Categories: Patient Stories

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On October 2Kaila Butler5th, 2012, I called my boyfriend to come and pick me up from work, despite living just a 10-minute walk away. The bad shoulder and back pain I had been dealing with in recent days turned into a sharp stabbing sensation throughout my body, leaving me breathless and unable to walk more than a few steps at a time. I pride myself on my ability to walk things off, and I have a very high tolerance for pain, so it made me very anxious thinking that it was a bruised rib. I had hoped that my boyfriend would take me home and put me to bed, but at his insistence I ended up at the Emergency Room at Burnaby Hospital instead.

The ER wasn’t insanely busy that night, but there were enough people ahead of me that I was worried when they pulled me into the back room almost immediately for testing. They started running tests on my heart to make sure I wasn’t having a heart attack. After they ruled a heart attack out fairly quickly, there was still something about my heart rate that worried them. I was immediately sent in for a chest X-Ray and blood work. I kept asking the nurses to just pop my rib back into place and send me home, but was told I needed to stick around for the results of my blood tests because my chest x-Ray was all clear.

During my entire ER experience, I couldn’t quite shake the feeling that everyone was tiptoeing around me. At around midnight, less than three hours after getting to the ER, I was given the most awful shot of blood thinners and then sent home. I was told the shot in my arm was preventative and that it was highly unlikely there was anything wrong, but I would have to go back the next day for a CT scan.

After a sleepless and very painful night, I went in for my CT scan. I was hooked up to an IV and told to lie still while a machine took scans of my lungs. It hurt so badly to lay flat and breathe deeply that my body was convulsing.

A resident in the waiting room was telling me I was likely dealing with bad muscle bruising in my back when the CT scan results came in. His face dropped while he was reading them and he excused himself quickly saying, “I think you may have a pulmonary embolism.  I’ll be right back.” He went across the hall where I could hear him and the doctor arguing about why I hadn’t been admitted or seen by a specialist. There were phone calls placed, more blood thinner shots administered (this time into my belly) and a few hours later I was admitted into the cardiac ward for monitoring. I spent the next six days in that bed, not allowed to get up to use the washroom, not allowed to shower, and closely watched. I had a fever and accelerated heart rate. I was asleep most of the time.

Luckily for me, my blood clot story ends with being discharged from the hospital. I spent the next 7 months on oral blood thinners, and I still deal with anxiety, some chest pain and shortness of breath, but it was determined that my pulmonary embolism was caused by my birth control pill and not other risk factors. I can’t say I live without fear that it will happen again, it’s incredibly hard to bounce back after being treated so fragile to living a normal life again. I cannot say enough good things about the nursing staff that took care of me. They always had a smile on their face, they always stuck around to chat, and they didn’t fuss about my boyfriend staying the entire 6 days in the hospital with me.

After having nurse after nurse and doctor after doctor tell me how lucky I am to be alive, all I can do is agree with them and continue to live my life as full as possible.

Author: L F

34 Responses to "Luckily, My Story Ends With Hospital Discharge — Kaila Butler’s Story"

  1. Jessica Phillips
    Jessica Phillips Posted on December 23, 2014 at 11:47 pm

    Praise God for your survival!!
    Great job sharing your story–I know first hand that it is not easy to share because you have to face the reality of what happened!! Your anxiety will get better…

    God is Good
    Merry Christmas!!
    Your Fellow Blood Clot Survivor,
    Jessica Phillips

    • Alli
      Alli Posted on March 31, 2016 at 7:22 am

      I read your story and got chills as to how similar our experiences were. I was diagnosed on October 25, 2013 exactly one year after you and was also sent home from the ER also to then have a PE. I was admitted the next day for a week. Although my story continues with multiple surgeries I am happy and healthy now. I do have a changed perspective on life and a greater appreciation for things. I will be on blood thinners forever but grateful for life. I don’t let this experience dictate my life anymore as my anxiety has diminished over time. I applaud you for your courage to share your story.

  2. Anita
    Anita Posted on December 30, 2014 at 2:20 pm

    Your story is very encouraging to read about. My adult son is going through the same thing and to complicate matters he suffers from Sickel Cell Anemia. Its been about a month since he came home from the hospital after being in there for several weeks and he is still on medications. He has lost a tremendous amount of weight and tires very easily. Of course, we (his wife, 2 teenage children and me) are worried about him. It’s a slow process, I know. We stay in prayer and he has improved. I pray that you continue to do well and stay healthy. Thank you for sharing. God’s Blessings.
    Anita

  3. magi
    magi Posted on January 1, 2015 at 2:50 am

    Hi I know what you went through. I had pains in back shoulder and side. I went to A&E I was rushed in and a bed found for me. I had a blood clot in each lung and pluerisy in right lung. I,m scared to eat and have to watch my soft drinks and I am getting fat but scared to exercise. I,m still on warfarin but hope this end in February. I think mine was caused by flying and sitting on coaches for 4hours.but I was still active, taking long walks and swimming.

  4. Etta
    Etta Posted on January 4, 2015 at 3:48 pm

    Hi. Until I came upon this site I was thinking, somehow, that I was the only one with pulmonary embolism. Mine was diagnosed on December 10, 2014. I spent 10 days in the hospital. Although I’ve been having near fainting spells for years, I never took it seriously until the night I blacked out. I had gone to the bsthroom and the next thing I knew I woke up underneath the bathroom sink which terrified me. I knew I was in trouble and knew I needed help. I managed to call the ambulance, they rushed me out and after tests I had the diagnosis…PE. On top of that I have congestive heart failure and because they wanted to rule out a heart attack, they did an angiogram which, though my arteries were clear, one of my blood vessels isn’t lying right which is causing, as one doctor put it “you’re making your own blockage.”

    They put me on Heparin. I was discharged on Coudamin. Then just a few days later after getting tested with the Coudamin, it was found that I wasn’t clotting…at all. Back in the hospital again for a couple of days.

    I’m still baffled as to how this could happen because I’m very active even with the heart failure. As my friends say “you’re never still.” True. I go to the gym every week, spending at least and not less than two hours each time, walk almost everywhere I go. I just don’t understand it. Now, according to the doctor, my gym days are on hold and when I go back, I can’t do what I normally do as in heavy weights, etc. It sucks. I’m trying to think positive realizing, according to the doctor, I could have died. His words? “You came in time, it would have killed you for it’s big.” Wow. Still trying to wrap my head around that. Yet, silly me, most of what I mostly think about is how to get my life back with this thing, especially the gym.

  5. Consuelo
    Consuelo Posted on January 7, 2015 at 6:31 pm

    Wow, your story reads just like mine! I workout pretty regularly so when I had this consistent Charlie horse feeling in my calf I didn’t pay it too much attention because I just figured it was muscle strain. Fast forward to the week before Thanksgiving and I’m having the chest/back stabbing pains and like you I thought meh…bruised rib and I tried to just walk it off but then I couldn’t breathe. The Monday before Thanksgiving I finally go to the ER, after a round of blood work, chest x-rays, and a CT scan the doctor rushes in and says we have to admit you immediately…admit me for what it’s just a bruised rib dude. The doctor then proceeds to tell me you have two large clots in your right lung and one small one in your left lung…cut to me looking totally dumbfounded and scared to death. They immediately started me on a high dosage of Heparin, they also kept taking blood every 3hrs because my levels were so out of wack and to top it all off they couldn’t get my heart rate to regulate. The doctors and nurses all kept saying how lucky I was and that I came just in time because it could have killed me.

    So like the previous poster Etta, my exercise now consist of moderate to brisk walking (when my breathing allows)…no more vigorous cardio or weight training for me at least for the next six months. So now my life consist of taking Eloquis, compression socks (oh did I mention my legs keeps swelling…now that’s sexy), and a very low sodium diet. I just want to be normal again, but thank God I’m alive.

  6. Stacey
    Stacey Posted on January 11, 2015 at 12:47 am

    On December 10, I was misdiagnosed with pneumonia due to feeling out of breath when walking a few steps. Was put on an antibiotic & given an inhaler. A week later I was feeling worse. Ended up in the ER where a blood clot was found in my lung. I was given a shot of Heparin in my stomach and admitted for observation. The moment I got to my hospital room and was getting into bed, my feet felt numb especially my right one. A nurse tried to find a pulse on that foot but couldn’t. Another nurse was called in and she couldn’t find one either. The pain in my right leg was excruciating! My leg changed to a bluish color. They rushed me to ultrasound where a long, large blood clot was found in one leg and a cluster of clots in the other. I was rushed to surgery to remove those. I don’t remember this, but I continued to complain about pain in my right leg around my calf. I went back into surgery where they made 2 incisions in my leg to relieve the pain and swelling (fasciotomy). I also had some pooling of liquid at the incision by my groin where they removed the blood clot. I spent 4 days in Critical Care and 3 days on the surgical floor. I was in the hospital over Christmas. I’m home now. I use a walker. I had had my leg wounds stitched up the day of discharge but had the stitches removed a few days ago cause they were causing more problems and irritation. I had had a wound vac on the incision by my groin which was wonderful! The draining has subsided enough that the surgeon moved the vac to the top open incision on my leg. My right foot has been numb since being admitted to the hospital but now I have actual pain in my toes! If something slightly bumps or even touches my toes it sends me through the roof! Hope that doesn’t last long!! Disappointed by the misdiagnosis but know things could have been worse.

  7. Luann
    Luann Posted on January 12, 2015 at 7:21 am

    I praise God not only for your survival but that you and others are speaking out and trying to inform others of the warnings signs and causes of pulmonary embolism and DVT. My 32 year old, daughter-in-law was being treated for bronchitis in December. She died on January 2, 2015, after being in a coma for many days. This very bright, health conscious, young woman was a distance runner and athlete. Who would have thought that she would have died this way. She had only the risk factor of using hormone based control. Please continue to get the word out. I think that woman need to demand to be tested for clothing factors before using hormone based birth control. Doctors need to be more thorough when patients present with shortness of breath. Ask more questions, do you have leg cramps, back pain….please. We are devastated by the loss of this bright, young, woman. Please keep speaking up.

    • Consuelo
      Consuelo Posted on January 16, 2015 at 7:49 pm

      My condolences to you and your family for your tragic loss of your loved one.

  8. Jenna
    Jenna Posted on January 13, 2015 at 2:58 am

    It is so good to see a community of people that are going through the same thing! Although this is unfortunate, it is good to see that there is a support group out there!

    I am starting a blog about my experience and would really appreciate it if you could check it out!
    https://bloodisthickerthanwaterr.wordpress.com

    Please do not hesitate to comment/leave feedback
    Thank you so much!!!
    Jenna

  9. Jane
    Jane Posted on January 16, 2015 at 9:30 pm

    I am glad I found this website. I am 46 years old and in fantastic shape or so I thought. I went into the ER on December 16 and left on December 19 with a small PE. I had breathing problems, my collar bones hurt, my shoulder blades hurt, and I had some jaw pain, too. I thought I was having a heart attack.

    After various blood work and tests, the doctors are calling this a mystery. As, I am not at risk for a PE. I am not on birth control, don’t take hormonal replacement drugs, and there’s no genetic clotting in my family. So, with this health scare, I can only say that I am grateful for being alive and the lesson is ALWAYS listen to your body.

    Thanks.

  10. Annette
    Annette Posted on January 23, 2015 at 2:10 am

    My story of blood clots and pe in both lungs. Was 9 years ago. I only had what I thought was rib pain and dizzy at times. Er diagnosed and so shocked this was happening. My only risk factors was being overweight. I was tested for everything with no reason found. So still on warfarin. Six years ago my lower legs swelling and redness. From initial problem I have now post thrombotic syndrome. So in summer have to elevate legs constantly.

  11. Ara
    Ara Posted on January 25, 2015 at 1:55 am

    OMG I have AFib and was considering stopping my blood thinner. Not any more. Thanks for your posts.

  12. Mary
    Mary Posted on January 25, 2015 at 11:32 pm

    Thanks for all these comments and stories. The history of blood clots in my immediate family started when my eldest daughter (18yrs) was diagnosed with a clot in her brain (the transverse venous sinus) after being admitted to the er with headaches and seizures. She had been prescribed the wrong type of birth control pill. She was found to have Factor V Leiden clotting tendency. She is well now and has a young baby boy. A few years later I had some minor clotting in my right leg and left arm.I was also found to have the Factor V Leiden gene. A few months after that i had chest pains that felt like I had pulled a muscle. The ER Dr. gave me some pain medicine but this did not help and I felt worse a few days later – lying down was very uncomfortable so I was trying to sleep sitting up. After coughing up some blood in the morning, I returned to the ER where a chest X-ray revealed pulmonary edema – fluid around my lungs. I had no fever or chest infection, so a CT scan was done. This revealed several clots in each lung. I was surprised at this as pain had been on the right side only. Ten days later in hospital I had been stabilised on Coumadin and I was allowed home on rest. I now take Asprin as preventative. A few years ago, another of my daughters had a major pelvic clot after prolonged study for her final high school exams. Her entire leg on that side was bluish, swollen and painfull. She is now well and is training for a 14 Km running event. I have taken the precaution of having my five daughters tested for clotting tendencies in case this information is needed in the future.

  13. Madie
    Madie Posted on January 28, 2015 at 7:47 am

    HIi

    Wow thank you all for the stories. I have been looking for a type of support group after being diagnosed in 2013. I was just 2 months into my new job when my left leg started cramping during the nights and i just thought that is was maybe from changing from restaurant work to an office job, until the 5th of march when my legged swell doubled the size it normally is. My mom immediately took me to hospital that night and I was transferred still not knowing what was wrong with me.

    I knew something was wrong when the 3 specialist were waiting for me and immediately ordered test, being woken up at 3 in the morning with the results that I had DVT (4 blood clots from my calf up to my abdomen). It was a shock to my 23 year old life when my doctor said that it was the biggest clot in my calf he has ever seen.

    I was in hospital for 10 days, on strict bed rest for the first 5 days and on Coumadin shots and warfarin pills. I was on the blood thinners for 7 months after being discharged, I dont think anybody knows exactly what goes through your mind during that time. I was so yooung and scared, after being discharged in 3 months time i lost 3 relatives who died from blood clots. I did the clotting tests and luckly it is not a genetic because while I was in hospital my dad was also diagnosed with blood clots.

    But today I am better, I have PTS ( Post Thrombic Syndrome) and is living with it the best I can, my leg swells and pains some days, I drink aspirin once a week but I am trying to live my life fully. I was one of the lucky ones things could have been so different for me if I had not gone to hospital that night. My family has been the greatest supporters through this time

  14. Maria
    Maria Posted on January 30, 2015 at 1:31 am

    It does help to hear other peoples experiences. i have had 7 dvts and 2 pulmonary embolisms my most recent 3 weeks ago. I went to a and e with the unmistakable signs and was sent home with a chest infection luckily I refused to back down as I knew what was wrong my gp listened and although on warfarin for life a clot still formed. Very different treatment here in Manchester uk as I was sent home with heparin and self administered and told to rest. I do worry every day if the next clot will be the end but feel blessed that I’m here to tell the tale. I am 40 now was diagnosed at age 13 with anti thrombin 3 deficiency. My biggest fear is that my 2 boys have inherited the gene. Trying to get them tested

  15. Lisa
    Lisa Posted on February 20, 2015 at 10:59 pm

    I was diagnosed with DVT/PE on Dec. 2, 2014. I thought I had pneumonia. I had been to my doctor and an urgent care for the shortness of breath and cough and tried steroids, inhalers, antibiotics and more. A few hours after leaving the urgent care, I was in trouble with severe pain through my ribs and shoulder and finding it really hard to breathe. My husband took me to the ER where they discovered the PE and DVT. I was released from the hospital after 2 days and started on Xarelto.

    Genetic testing revealed I have some genetic components to my clotting problem along with the birth control pills.

    Today, I got the all clear on the DVT. I’m clot free! The action plan to keep it that way is to stay on the Xarelto for up to a year and then decide if I can switch to low dose aspirin therapy. Sounds like I’ll be on some sort of blood thinner for life due to the genetic issues. I’m also trying to become a fan of compression socks since I sit a lot at work.

    • Jonathan
      Jonathan Posted on May 3, 2015 at 8:56 pm

      Hi there, I was just wondering if the shortness of breath cleared up and how long did the clot and shortness of breath last for? Thank you

  16. Jean
    Jean Posted on February 25, 2015 at 12:54 am

    Thank you to everyone who has shared their experiences. In January 2012, I was suddenly seized with a violent stabbing pain in my mid-section, violent diarrhea and bleeding, and vomiting. When this continued for an hour and a half, I was rushed to the hospital in an ambulance. I was diagnosed with ischemic colitis which occurs when there is a narrowed or blocked blood vessel to the digestive system. It was a blood clot. I had never heard of a blood clot that would shut down my GI system and cause such awful symptoms. I’ve been told that I was lucky not to have suffered any organ damage or failure. A smart GI doctor ordered the genetic blood tests which showed that I have Factor V Leiden with two mutations. I took 325mg aspirin for 2.5 years and then suffered another attack in September 2014. I am now on Coumadin. I struggle with the daily diet reminders (I used to eat tons of spinach, broccoli and other vitamin K rich veggies) and stay on a pretty strict regimen, but my INR still fluctuates and my hematologist has been increasing my dosage slowly.Now I am getting prepared to start the home INR testing next month. Are any of you doing the home testing? What has your experience been?

  17. Amanda
    Amanda Posted on March 2, 2015 at 7:00 pm

    Reading some of your experiences makes me feel not so alone. I was diagnosed with PE in both lungs after I blacked out in my bathroom on February 11th. The paramedics had to do CPR because my heart was beating but I had no pulse. I was taken to the closet emergency room and that is where they performed all the tests (Echocardiogram, chest xray and CT) and found a huge blood clot in my right lung and a smaller one in my left lung. I was then transferred to a bigger hospital and spent 2 nights in ICU and 5 days on a regular floor. I had heparin drip and coumadin and started on Lovenox. I had to take Lovenox for 4 days after I went home. Now I am on Coumadin therapy and because I have Spina Bifida and use a wheelchair, I will most likely be on it my entire life. I am now wearing compression stockings and I am having a lot of anxiety about what I eat. I know you have to be careful of Vitamin K but no one has given me a straight answer on how much, etc. It’s been 3 weeks since it all happened and I am feeling mostly back to normal except for fatigue and some pain in my right lung. I am a school teacher and plan to head back to work this week, but I’m wondering if I will be able to handle an entire day of working without extreme fatigue. Even though I have Spina Bifida, I have been an exceptionally healthy person until this last six months. It scares me. I know the blood thinners will keep the clots away but there is still a level of anxiety about it. Even though I am still trying to adjust to all this, I am most thankful that I am alive. If my husband had not been home when I passed out, I am not so sure I would be.

  18. Alice
    Alice Posted on March 11, 2015 at 10:11 pm

    Just out of hospital,have small pe in left lung and right lung is infected, I am on 30mg of xarelto per day ,I have at the minute cramp in my left leg and keep thinking it is my imagination.is it just early days after have been so sick

  19. Donna
    Donna Posted on March 18, 2015 at 4:45 am

    thank you everyone for sharing your stories . mine are like many of your stories, I had been to the hospital before with a possible heart attack but they sent me home ok .then I started having shortness of breath after going back they discovered it was PE. not knowing exactly what that meant I didn’t realize it was so fatal . the right side of my heart was having problems as not able to push enough oxygen to my lungs . they thought I was having congestive heart failure , I was not in my heart and up checking out okay

    I’ve been out of the hospital for 5 weeks and still on coumadin and oxygen . very frustrated and extremely fatigued and did not felt up to doing anything . I keep waiting for the energy to come back and its just not there . I find myself reliving the situation and getting depressed and frustrated with how long the recuperation . don’t get me wrong I am very grateful to be alive is just everywhere I looked and have read I should be feeling better by now I’m only 48 just seems like I should be able to heal . read an older gentleman that it took him a year to feel normal . if anyone has similar stories to share with me I would appreciate it as suffer from depression and I really don’t want to get worse .

    looking for some hope

  20. theresa
    theresa Posted on March 18, 2015 at 12:26 pm

    Im a 48yr old women who has several upper DVTs. I started not feeling well 4/14 upper back pain felt like my bra was very tight several drs visits all blood came back fine but blood in urine. Continued not feeling well several visits and continued blood in urine brought me to CT and found acute appendicitis w/ gangrene 4 days in hospital in end of may 5/14 still not feeling right several visits to dr brought me to October still complaining tired, just don’t feel right and still upper discomfort. Im stressing to dr I don’t think his assumption of gastro might NOT be the diagnosis.

    Well beginning of 10/14 I started experience severe increasing neck and upper chest discomfort felt restricted got worse 3 times in 5 days in drs office point of crying hurt all the time when breathed, laughed, going up stairs to point of crying all day still dr. telling me he tested me blood and urine other than traces of blood in urine Im fine. I woke up on with my left arm twice the size red and hard as a rock and went to emergency room no longer see that dr.

    I went to the Hospital and first received a what the ER is for sermon from the ER dr. and how I didn’t belong there. I explained I was having trouble breathing walking up the stairs which made the er doctor from hell do a chest CT with diagnosed me with large upper DVT in jugular, subclavian down my left arm. Two thrombolysis performed in hospital after 12 days sent home on lovenox 100 mg 2xs day. with referrals to Many many dr appts who ruled out genetic blood disorders been to Boston (no help) and many NYC drs. at Mt. Sinai, NY presbytarian, sloan, Ive seen two hematologist (1 at NYC sloan cancer ruled out had full body pet scan) 3 vascular surgeons, two interventional radiologist and a bunch of drs including two gynecologist, gastroentronolgist, urologist, no one can explain why I got these clots and have formed more since on blood thinners. Now taking Xarelto.

    The Mt Sinai interventional Radiologist said I have an enlarged chest stone (sternum) with arthritis causing the veins in the chest cavity to be restricted and contributing to the clots, but most of the speciality (vascular, hematologist, interventional radiologist etc) think this is a complication but NOT the underlining cause they think I have some kind of coagulation problem that might not yet be known.

    Im reaching out hoping anyone might direct me somewhere to get my condition out there that maybe someone somewhere might read this an possibly offer me some help, research avenues to turn?

    My left arm throbs all day feels like someones squeezing it very hard and still swollen since 10/14. Im now wearing compression sleeves on both arms 10 hrs a day which is causing excruciating pain in my left arm only. I feel restriction in my neck/throat if I sleep/lay on my sides or lower my head downward cant comfortably lay on the arm rest of the couch or pillow without constriction in my throat upper chest area.

    Any information anyone could offer would be greatly appreciated, my neurologist recommended I send my story anywhere I can in the hopes that some dr. or patient might offer some information and she feels my problems are way beyond Long Island NY drs.

    I reaching out to anyone who might lead me into any direction of information to help me with a diagnosis and possibly be in a study regarding blood clotting.

    Theresa

  21. Nora Peevy
    Nora Peevy Posted on April 1, 2015 at 6:01 am

    I suffered multiple pulmonary embolisms after I broke my foot. I suffered in horrible pain for two weeks and kept telling my podiatrist something was very wrong, but he didn’t listen. Finally, he made the connection about DVTs and swelling in casts. I had a huge DVT.I was in the hospital for a few weeks. Thankfully, a hematologist admitted me, saved my life by listening to me saying I couldn’t wait two weeks for an appointment as ax new patient, and diagnosed me with a genetic blood disorder at the age of 35. My father recently passed from multiple strokes and brain trauma. We never had him tested because was already on warfarin for his heart and lung issues. But the rest of my immediate family tested negative, so we’re pretty sure, given the circumstances he had the gene.

    I thought I was the only young person out there like this. Nobody in the hospital told me how serious my condition was. I guess they didn’t want me to panic.

    I have tested at home. My meter is easy to use. The first few times sticking my finger were scary, not cuz of the needle or the blood, but because I didn’t know how much it would hurt to do myself. It’s really not bad. I’ve also had multiple surgeries and have learned to give myself the lovonox shots. Those do hurt and leave large bruises on my stomach, but I usually haven’t had to give those for more than a week, including after surgery as part of that week.

  22. Nora Peevy
    Nora Peevy Posted on April 1, 2015 at 6:12 am

    Theresa,

    Has your doctor ruled out auto immune diseases? Have you tried seeing a rheumatologist? Also, I have thoracic outlet syndrome and that can affect your bp and cause horrible pain, including moving your head around and raising your arms. It’s very rare and you need a specific xray with your chin tilted up at a certain angle. The xray will show if you have a set of small ribs connected to your collar bone. They can press on your nerves and arteries. My doctor had never seen a case in his practice and joked about how unlikely it was to have it. But when he put my xray up, I knew my collar bone didn’t look right. Lol I had surgery to correct it and still have some small issues from time to time, but my bp is stable again and I can move my head and arms around without excruciating pain. Almost forgot. Another symptom is terrible pain at night in your back and neck and even your arms sometimes. I couldn’t lay in any position and sleep. Good luck finding out what is causing your issue. You might want to see if your insurance would let you go out of network as an exception, since you have not gotten a diagnosis, yet. The Mayo Clinic in Minnesota is very highly recommended for cases that can’t be diagnosed.

  23. Nora Peevy
    Nora Peevy Posted on April 1, 2015 at 6:18 am

    Theresa, you might also want to see an infectious disease specialist. And check into certain types of nerve drugs used to treat fibromyalgia, spinal pain, etc. Do you have a neurologist and a pain doctor? They might help you. Bio feedback is sometimes covered by insurance as well.That’s learning to lower your blood pressure by deep breathing meditation, essentially. I’ve seen some people I know do really well with pain control.

  24. George Ngugi
    George Ngugi Posted on April 11, 2015 at 3:49 pm

    Thank you all for sharing your experiences. I was admitted in hospital after chest pain and shortness of breath, but they treated me for Pneumonia with Amoxylin and diclofenol. After a night they discharged me, but I almost died that night at home, could hardly breath. The following morning I started a 6 hour journey by road back to my country (I work in a neighboring country. I was so sick in that shuttle. Thankfully I arrived in Nairobi, went to see my cardiologist and was promptly admitted in Intensive care with PE. He told I was very lucky to be alive, and for the next 8 days they treated me and ran tests round the clock. They didn’t find any clots and now I am on 20mg Xarelto per day. I have no idea for how long I will be on medication. I thank God that i’m here, because I came to realize how close to the edge of life I stayed for a couple of days. I believe I lived for a reason, and I’m living my life just valuing every moment and asking God to make use of me now that he gave me a second chance. May you a;; live loong fulfilling post PE/DVT lives

  25. John Motch
    John Motch Posted on May 17, 2015 at 11:31 am

    Hi, my name is John and I’m 66 and I live in the UK

    I noticed that most of the posts are from women. Don’t know why but I know women have higher risk factors. My PE happened about 8 weeks ago but I was only diagnosed three weeks ago. I started to feel short of breath and had a pressing feeling in my sternum and a dry cough. This went on for about 5 weeks and everybody kept telling me it was anxiety. However, the shortness of breath started to get worse even though the anxiety was getting better so one day I took it into mynown hands to ring the emergency services. A paramedic was with me within 10min. At first he thought I had heart problems so he did an ecg which showed up as normal. When I told him how both my parent had died young due to heart disease, he decided to send me to A&E. When I arrived i had another ECG which again showed as normal. I also had a chest X-ray which again showed as normal. However some of the numious blood tests I had showed some signs of something else so one of the consultants wasn’t convinced it was a heart problem, but maybe something a bit more sinister. That’s when I was send for a CT scan wirh iodine injection. When the consultant came back I was gob smacked, he said I had numious blood clots in my lungs which was why I was feeling out of breath. I was immedetlly put on heparin and warfarin and stayed in hospital for three days. After I came out of hospital I had to inject myself with heparin and carry on with the warfarin tablets. The injections weren’t that bad and never hurt at all once ingot over that initial fear of sticking a needle in yourself. Also unlike the injections the nurses gave me which left massive bruises my own injections left none. After three weeks out of hospital my breathlessness has virtually gone and and I’m now on a steady dose of warfarin. I was getting my blood tested twice a week but now that my INR appears to be stable at around 2.5 I’m only getting tested once a week. I went for a 2.5 mile walk yesterday and felt OK. I should point out that maybe the reason my recovery has been so quick is it took 5 weeks to be diagnosed, by which time maybe my body was already dissolving the clot. Drugs like warfarin and heperine dont dissolve the clots they just reduce the risk of more occurring,mits your own body that reduces the clot

    Where it came form in the first place nobody seems to know as I never had a DVT. However, I do have a history of valocoise veins and phlebitis, so I’m sure that’s a factor. Clots can also come from bit breaking off tumours so I recently had a lower body CT scan.

    The whole thing has all been a bit of blur really as it all happended so quickly. I still rack my brains where the clot came from as I need to make a decesion at some stage wether to come off the warfarin. after listening to some of these posts sounds like I’m one of the lucky ones, but I never take anything for granted as I know I had a lucky escape. I wish everyone well and speedy recoveries. All the best, John

  26. sherri brinkley
    sherri brinkley Posted on May 28, 2015 at 5:49 am

    ok, thinking maybe someone will see this. I have an artificial /mechanical heart valve. I had an endoscopy a week ago and had to go off of my warfarin and take lovenox shots prior to this procedure. I had an abdominal ultrasound 2 days ago….which was 24 hours after I started having very sharp, very much pain when I breath deep…spreads up my shoulder and neck on the right side. He told me that they wouldn’t see an pulmonary embolism on that ct unless they were looking since my GI dr was ordering it. (?)…I am on warfarin daily and he said…all they will treat it with are bloodthinners and you are already taking them…..
    It was a bit better this morning. now…almost 1 a.m….I have a massive headache, my ears are ringing and my side/back hurts so bad I yell out when I breath deep. My big problem is that local hospitals know I take pain meds and dismiss me as a pain seeker and if I go in without a real issue it just feeds their assumptions. Last time they basically laughted at me, gave me antiinflammatories that I am not allowed because I have kidney disease and when I pointed it out, laughed and said…whoops, guess I shouldnt have given you that….walked out. Came back and told me to just go home and take my pain pills. I went home and was up all night in pain with a fever of 104. I cannot deal with this treatment….but, I wanted thoughts from people who know.

  27. kristie
    kristie Posted on December 8, 2015 at 12:45 am

    omg!!! on 10/9/2012, I was having should pain, back pain, heart pain.and left arm pain. I was pacing in my house trying to shake it off and waiting for my roommate to come home. I was absolutely terrified to tell anyone I was having heart pains. Then I started to have trouble breathing. Every hour it was getting worse. I drove myself to the hospital and waited the in the emergency room to be called back. Finally i was called back and with in a hour diagnosed with blood clots in my lungs.. I will never forget hearing that. I thought that my life was over. The blood doctor came to see me, and reassured me there is hope. I was also taking birth control pills, Levora. I was lucky to be diagnosed so fast, as another young lady had been treated the night before … for the same exact thing. I did go into a very dark depression. Thankfully I am seeing the light… Life is short, live it to the fullest!! Always remember to tell your loved ones that one you LOVE them. Spread compassion to everyone!!

    I am so glad that you were treated and recovered!! Sending you lots of happy warm wishes!! ♥♥♥

  28. Mimi
    Mimi Posted on December 9, 2015 at 2:47 am

    I had knee replacements in 2009. When I was coming out of the anesthesia on the second surgery (right knee) I had a PE. They kept me in the hospital 3 days longer than normal until I begged the docs to let me go home. I hate long hospital stays. I’m so spiritually sensitive and the hospitals are full of spirits. They sent me home on Coumadin. I had to have blood tests 3-4 times a week and they kept changing my dosage because they couldn’t get my blood to settle down to the proper viscosity. After 6 months I begged them to take me off the Coumadin because I just couldn’t stand all the poking and changes and time in the lab. So the doc put me through a bunch more tests and found I didn’t need the Coumadin anymore and took me off. FINALLY! When the PE hit, it robbed me of half my breath. I woke up once on the trip to the CT scanner, and didn’t wake up for quite a while after that. I don’t remember much of that day other than what I’ve written here. I can certainly say I hope it never happens again. I pray for us all that we overcome the horrible maladies that encompass PE, and especially for those that aren’t able to get off the meds. Good luck to all of you.

  29. Kaila Butler
    Kaila Butler Posted on December 10, 2015 at 9:15 am

    Oh wow! Hello everyone, I’m the girl from this story. I didn’t realize there had been so many comments on it or I would have looked sooner. Thank you so much for sharing all your stories with me, they’re inspirational.

    I am part of a very supportive Facebook group that I think would benefit many of you, if anyone is interested on being invited please reach out to me on Twitter @Kaila_Butler (it’s less private than my Facebook, which I reserve for friends and family).

    My thoughts are with all of you as you heal!

  30. Heleneh
    Heleneh Posted on July 11, 2016 at 10:10 pm

    Hi,

    Reading your stories gives me a little comfort and I am looking for a little after hospital advice. I went in yesterday with shortness of breath and the found a tiny blood clot on my lung, they keep saying how small it is… They started me on a shot in my stomach and cumidan. They did sonograms on my arms and legs, those came out fine, an echo, that came out fine, chest X-ray, that was fine etc. so they sent me home today with my shots to do for 5 days and my cumidan to take. My anxiety is really bad because I am scared something is going to happen now that I’m not being monitored. Please help