It is clear no matter what the numbers, dvt and pe have become a major public health risk in the United States and has ranked as high as third in mortality rates following heart disease and cancer, yet it is virtually unheard of in the general population. Blood clots, including those of the leg (deep vein thrombosis/dvt) and those of the lung (pulmonary embolism/pe), affect upwards of 600,000 Americans each year. In the United States alone, one person every minute will be diagnosed with dvt and one person every six minutes will die of pe. One in three people will die from complications of a dvt, such as a pe and two will survive, sometimes battling lifelong complications. For those that survive, there is anger, frustration, pain and guilt; yet, there is also hope, eventual understanding and places like the Blood Clot Recovery Network to share our stories, educate, empower, encourage and enrich.
In June of 2012, my life was forever changed by a blood clot in my calf (deep vein thrombosis/dvt) that broke free, traveled through my veins, then my heart and lodged in my left lung (pulmonary embolism/pe). The blood clot was believed to be the result of antiphospholipid syndrome (aps), which caused a complete autoimmune meltdown. Everything changed for me – my view on health; my previously active lifestyle; my job; my relationships with other people in my life; my relationship with myself and my outlook on life over all – just to name a few things. In the days, weeks, months and even a year after my clotting incident, I often found myself searching the internet and other resources for every ounce of information I could find out blood clots, clotting disorders and what to do next. One year later, I am still recovering, still learning and still fighting to gain back either what I had or what I didn’t know I needed in a daily fight to regain control of my life.
I started the Blood Clot Recovery Network blog and website to begin not only journaling and sharing what I have experienced and learned, but to help others who are also moving through the blood clot recovery process. It is by far one of the hardest things I have ever had to do, and I often hear others say the same thing. Recovery seems never-ending and many people that suffer from a blood clot, including myself, will have to face lifelong effects and even continued medical treatment. We don’t have to face these challenges alone.
Welcome to Blood Clot Recovery Network.
In healing there is hope and you are not alone,
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I also have suffered with dvts and pe’s and constantly seeking any info I can find. May I join?
Yes, Pat! Welcome to BCRN. I was and still am constantly seeking information, especially from others who had been through what I did. Be sure to sign up for emails so you don’t miss a post. I am glad to have you as part of this community and thank you for stopping by.
Got my bracelets today! The day we are burying my dear friends 31 year old daughter from pe. Didn’t know this was here, but so glad it is!!! Thanks so much!
I am glad you got them, Joy! I am so sorry to hear about your friend’s daughter. It reminds me again just how precious our lives are and how lucky some of us are to still be here after a PE. You and your friend and her family are in my thoughts. I am saddened by this loss. I hope you stop by BCRN again! Thank you for your support.
Hi Sara, I have been a long term survivor of an unknown blood clotting factor, many many DVTs, TIAs and PEs, I have been on every kind of thinning treatment only to fail on every one of them, either by not getting to therapeutic levels or getting yet another clot…I was diagnosed with thorasic outlet syndrome and had a major surgery and a stent put in my sub clavian vein. I was just released from the hospital for bilateral multiple PEs, even tho it has been 10 years since I had my last DVT… I still have no diagnosis and Now a whole bunch of new questions concerns and yes terrors. For years I have been on 650 mg of aspirin daily and thought that was the end of my clotting story… Then I recently started lower limb swelling extreme knee pain and over all swelling and shortness of breath, well .. 3 days later I am at home, with breathing treatments and more of the great unknown…thank you for this website. I am sure I will be all over it in the coming days.. Just one more note… I am a non smoker medical professional
Hi Tera! I am so glad you stopped by, welcome. I am glad to hear you are a medical professional too and concerned about PE/DVT – thank you for sharing that. I wish you the best as you head down yet another road to recovery. I know how long, frustrating and yes, terrifying it can be. That is one of the reasons I started this site – so people could share their experiences and fears and we could learn and help one another through mutual understanding and support. I felt so alone after my diagnosis, I did not want others to feel that way too. Please keep us updated on your progress and I hope they can find a cause for your clotting and not to mention a therapeutic treatment for you. Best to you and thanks again.
Hi Sara,
Thank you for the feed back and response.
I add this information as advice to be your own best advocate, you know your body better than anyone and if something is wrong, you need to speak out and don’t let anyone tell you that its all in your head.
I ended up at the ER again on Halloween,yes it was another PE and I couldn’t breathe, almost passed out several times, they thought I was having a panic attack.. I knew better,, any way, the outcome here is that after demanding to be seen by a vascular surgeon, they did an angiogram and balloon angioplasty to open a stent I had placed 10 years ago in my sub clavian vein, which the medical profession now know is not the best idea, well it turns out that stent was fractured and over 70% blocked, it was causing my blood clots and damage to my heart, they managed to open it to a semi normal diameter and I can tell you that I haven’t felt this good in a long time, I knew it was blocked but didn’t push hard enough to have it checked when I was in the hospital the first time. Be your own advocate. Trust your own intuition and stand up for yourself.
I will be on blood thinners forever and I am going to face a major surgery to replace my subclavian vein that has been destroyed by this stent, but for now, its working and I am good. I am hopeful that the recovery from the PE’s wont take too long and I will get off the abuterol inhaler soon, but I just wanted to say as a cautionary tale, please, know your medications, know your history, write it down, carry it with you, make sure your mate or family know it, and fight for you. God Bless Tera
Hi Tera! You are welcome. Thank you for stopping back by! 🙂
This is very valuable for us to hear, combined with your story – “I add this information as advice to be your own best advocate, you know your body better than anyone and if something is wrong, you need to speak out and don’t let anyone tell you that its all in your head.” Thank you.
I am sorry to hear you were back in the hospital with another PE?! That is one thing I have not experienced and obviously hope not to- I wish none of us did! I am so glad you were an advocate for YOURSELF and got the attention of someone who could help. Wow, Tera! I cannot believe your story. I will be sending you best wishes for your surgery and recovery and I hope this can keep you from facing any new clots in the future. Please be sure to let me know how you are doing. I’m thinking of you!
And thank you so much for your thoughts and advice. It is important to share and hear!
Take care.
This is the best discussion website on DVT and PE that I have found this far. I have read all posts and found them so helpful for me in generating a list of questions for my dr.s and understanding that what I’m feeling and going through is rather common compared to others with these conditions. Thank you to everyone who has posted and shared this far-I have found comfort in hearing everyone’s stories.
Here’s my story:
I’m Kathryn, 30 yr, and I am new to fighting the DVT and PE battle, but have had asthma and allergies since I was a kid. I was previously taking Yasmine and had taken it for sometime with no notice le negative side effects. I lead a rather active lifestyle, and have an active job (I work with kids who have special needs and problem behavior). I am however currently overweight (I’m 5’8″ so it hides fairly well-but this was a reality check for me to loose those unneeded lbs!) and have been for a few years-I think the result of a lack of cardio/weight lifting exercise, stress (I’m nearly finished with my Ph.D. Program…ABD status), and I seem to have had weight gain associated with my previous use of Yasmin and Lexapro.
For one month my left calf hurt like a bad Charlie horse; I’m a bit of a hypochondriac so I thought I might have had a blood clot (DVT), but kept ignoring that thought bc I thought I was just over-reacting. About 3 wk into the calf pain, I went to an urgent care clinic because I was ill with a respitory infection for about a wk and thought perhaps I needed antibiotics. I was seen by a PA. He diagnosed me with asthmatic bronchitis. When I told him about the leg pain and my concern about a blood clot, he laughed at me and explained there was no way I had a blood clot because I would be much worse (he said I should have swelling or a bulging from my leg). I explained that the pain was severe and I had been limping, and had no reason to suspect a pulled or strained muscle as he said it was. Feeling relieved and a bit silly, I went home and took my prescribed cough suppressant. A few days later I began antibiotics because I continued to feel more sick. Another day later, he started me in steroids because I reported that “I just can’t breath and feel like sown thing is stuck in my chest-I felt like I needed an expectorant.” But he said no, it was probably that my airways were tight and steroids should do the trick.
A few days later (Nov 6), I returned to work. I didn’t feel very well, but had already missed several days of work and I didn’t want to miss more-my clients were missing out on therapy and I didn’t want to keep canceling on them. So, at this point, I had calf pain for one month and a respiratory infection for two weeks. During my first day back to work, Nov 6, 2014, while engaging in some heavy physical activity at work I became sweaty and very out of breath. I though, maybe I returned to work too soon and was having an asthma attach or that my bronchitis developed into pneumonia. I’m a bit of a work horse and also needed to ensure the safety of my client; therefore, I used my abuterol inhaler (a lot) and tried to push through the breathing problems. But, within one hour’s time, I wa unable to talk or hardly stand because I was struggling to breath so much. My coworker said I looked like I was going to pass out. I had to hand off my client (something I would never normally do) and excuse myself. I thought, wow, I haven’t had an asthma attach this bad since I was a young child! I thought I need to rest, catch my breath, use my inhaler, and is be fine. Well, I wasn’t. I was still in denial that I was having a serious problem. I waited until I could walk, then packed up my things and got in my car. I had to take break in my car before I could drive. I kept pushing myself. I went home. And pushed to take my dogs out, and relax in bed. My whole attack started around noon. By then it was about 2:30 and I decided I really needed help. I though, maybe a nebulizer tx so I pushed myself to get in my car and drive back to the urgent care clinic. I called them ahead of time and let them know I was really struggling and needed help as soon as I arrived. But, I still waited about 45 min before I was seen. Meanwhile I did all my asthma breathing tricks with no relief. I sat in the waiting rm panicking. Finally, I was called back by around 3:50pm. The nurse took my vitals and appeared concerned as she obtained reliability measures. She put my on a nebulizer tx, but my vitals kept dropping. She yelled, “I have a patient in distress here!” Finally, I saw a dr. He hooked me up to oxygen with a full mask. He did some reversals of oxygen levels and the higher the level of oxygen correlated with slightly improved vitals-but not with significant improvements. He informed me that I needed to get to the ER stat and he wanted to call an ambulance. I was still in denial that something severe was going on. I kept saying, “it could be pneumonia, no?” He appeared vey concerned and said he thought it was a PE or and infection of my heart. but I refused an ambulance and called a co-worker to bring me to the ER-I was still denying how serious it was.
When I arrived at the ER I was quickly put on oxygen again (per my urgent request-it gave me a ton of breathing relief) and then rather quickly brought to a room. I had blood work (d-meter…I think that’s what I was called, new to the terms), EEG and /or EKG, x -Ray, then CT scan with dye. I have terrible phobias of needles and medical procedures that are invasive-so I was absolutely terrified. At one point, I walked a good bit to a restroom and returned. A moment later three dr came in my rm. one dr said he was shocked because he saw me walking back from the restroom and he didn’t know I was the same patient whose CT scan results he was reviewing at that moment. He said I should not have been capable of moving around, or even talking, or sitting up, based on what he saw in my results. (Enter more fear for me here). The dr explained that I had a very large clot that was blocking both of my lungs and that the right side of my heart was double the size it should be because it was working so hard to pump blood. They informed me they needed to act fast. The radiologist present said he was scheduled to go home, until he was called to review my results and he wanted to take me to the radiology operating rm. and get stated by midnight. He said he wanted to be aggressive with this bc I was young and the clot was very large (saddle pulmonary embolism). I was terrified, but I could see that I had to allow the dr.s to act fast to save my life (hard to even admit it was that bad) as they said. I think I was still in shock and denial about everything going on. I was given some happy meds, but they needed me awake and alert so I could follow their instructions and inhale at various times during the procedure. (I should note. This catheter directed TPA was described to be much more safe and effective than IV TPA because it is directly right at the lungs and it is a lower slow dose that the IV). They took me back and inserted a catheter in my groin. (Forgive my poor terminology-still learning about all of this). They fed the cath. Into my lungs and heart and injected radioactive dye to investigate. It was a very strange feeling-I felt it moving in my lungs and I felt it poking my heart (I was alert and awake for the procedure). Them they placed the catheters in my lungs to deliver TPA. They stitched me up and sent me with the catheter directed TPA to the ICU. I should note, as soon as they finished the procedure (while still in radiogy) I began coughing up very large amts. of blood. They was pretty frightening-I was lucky to have a great nurse who helped keep me calm and gave me the auction tube to to keep clearing the blood from my mouth. I felt like a vampire with all that blood in my mouth…gotta have some sense of humor during all this-right? Well, in the ICU, I remained in the TPA and a pain med until about 2pm nov 8. At that time, I returned to radiology for more exploring in the lungs, for removal of the TPA catheters, and for placement if a vena cava filter. This time, they didn’t give me “happy meds” unil 30-min in. I tried asking but this team was not as attentive to my anxiety as the previous team. This time was terrifying and I felt so alone and helpless. If I could do it all over, I would have demanded that the med orders for “happy meds” were written prior to them bringing me down to radiology-not way being 100% alert for that procedure. They kept telling me this was much easier than what my first procedure was so I should need anything. I 100% disagree. My advice is to stand your ground in advocating for yourself and to demand a supervisor if you are not heard (that’s what i wish I did). I returned to ICU, this time on IV heparin. Once stabilized, I was moved to a respiratory unit (that same day-nov 8). I felt like crap! I had pain in my lower right abdomen and back (side where Catheter was inserted). An X-ray was done and they said it was gas. I still think it was more than that bc I still have severe back pain (sharp, sudden, shooting). On nov 9, I was taken off the IV heparin and started Xarelto. I was very afraid of the options for blood thinners (mom mom has taken them due to blood clots post cancer surgery and she had horrible side effects from all). I chose not to so lovenox bc I didn’t want to give myself shots everyday. I chose not to so kumadin bc I didn’t want constant blood work and monitoring. I was afraid of Xarelto bc I have heard horror stories about people “bleeding from everywhere! Anally, orally, from eyes, nose, etc). But, for me, I decided to risk the Xarelto.
On Nov 10, I was discharged around 2pm and sent home on 15mg Xarelto BID for 20 days followed by 20mg daily for x many days-based in my progress.
Well, here I am (Nov 23rd) out of the hospital (discharged on Nov 10th), taking my Xarelto and so far no major negative side effects. I am now off of yasmine and lexapro. During my first wk home, I had a very heavy period, but that only lasted about 5 days-phew! Over the last few days, my incision line (at groin area) formed a bit of a bump and has opened up (it was never totally sealed, but it’s opened more) and it is bleeding and discharging some clear-yellow pus). It feels a bit hard under the akin in the direction that the catheter went. But, I have been cleaning it and changing the dressing evey 12 and the pus seems to have subsided by the blood is still seeping out-damn blood thinner! But-I think it’s doing okay. I have been wearing anti-embolism stockings (w/ medium 18-30ish graduated compression). My energy levels are slowly improving, but are atill quite pathetic. Last night I went out to dinner and today I drove 3 miles to Dunkin donuts for a coffee and that was a huge accomplishment for me. I was exhausted afterwards, and felt rather dizzy, but it felt good to leave the house for the first time since I returned from the hospital. I still feel some pain and fullness in spots of my calf, behind my knee, and sometimes the back of my thigh. I get super out of breath with any small bit of activity (unloading the dishwasher requires several rests while leaning on the counter) or talking (I gasp for air a lot). Also, I have chest pain and tightness-this I find scary-wondering “did a clot sneak past the filter? Was there a residual clot in my lungs that is blocking my airways? Is this permanent damage to my lungs?” The chest pain seems new, but my overall health is remarkably better than when I went to the ER. I have had a bad headache for 24 hr. I finally made it to the pharmacy (hours after my coffee run today-I couldn’t do both in one trip-not enough energy). I picked up Tylenol (after double checking with the pharmacist) and finally my headache went away. I have a cough-but not too frequent. I also sometimes had an odd pain in my stomach area-right where my vena cava filter is located-it’s an odd achy pain mostly when I lean forward and squish my tummy area.
Emotionally-I feel super anxious, mad, sad, and stressed about all the reasons that people described in posts before me. I’m still out of work and physically can’t imagine returning yet. I am a behavior analyst and I treat problem behavior such as aggression-which I am in no physical shape to manage at this time. This is so frustrating because I am new to my current job, I love my job and clients, and I don’t have paid time off accrued yet-so no paycheck.
I have lots of follow dr. apts. during which time I hope to get answers to my long list of questions (I am prepping a list to being to my apts. so I so don’t forget to ask anything and so I am efficient-I’ll share those later, if anyone is interested and asks for me to do so). I’ll see a: pulmonologist, hematologist, GYN, primary care, and the surgical radiologist. My pulmonologist apt is on Nov 24 and it can’t come any sooner-I need some reassurance about the cheat pain, status in my clots, and opinions on my progress. Also, I hope to get an idea of the extent to which, and when, I might return to work-ugh! I’m afraid of evey little pain I have. I worry bc I tend to push myself (recall my journey to finally getting to the ER-lol, sort of) but now I know that my status is serious and this isn’t something for which I can just push through pain. I’m relived to hear I’m not the only one to report a slow recovery. But also frustrated because I don’t know how much longer my recovery will be or if I will have more attacks or learn of underlying conditions.
I’ll continue to post and document my road to recovery. I hope I can give back to others and contribute to this blog because it has benefitted me to read and learn about commonalities between some of us. I find some people in my personal network are understanding and eager to help with what I’m going through. Whereas, others struggle to understand why I’m in emotional distress and why I can’t do my usual workload in the house and haven’t returned to work yet. I see that it will be a journey and I am greatful to have survived thus far. My best comfort is the belief that I have a purpose to serve on this earth and I survived my first PE for a reason-I have not completed my purpose yet. That gives me motivation to rest and take care of myself so I can return to my path in life and my career of helping others. The hard part will be first learning to truly take care of myself first. As everyone here has pointed out, this condition requires a some patience with our recovery and some kindness to ourselves and our physical limitations….easier said then done. But, I have plenty of couch time to practice that. Meh.
Thanks again everyone. And thanks for reading my record-length post! This was the first time that I got to get all of this out and to an audience who I believe will understand what I’m going though.
Till next post, take care fellow PE survivors! 🙂
Kathryn
Hello, Kathryn. And welcome to BCRN. I am very, very glad you are here and can’t thank you enough for sharing your courageous story with us. Thank you!
I must say, your story moved me to tears this evening as I am reading comments and catching up on the blog. I can relate to you in so many ways, it takes me right back to my own diagnosis and what I have been through since then. Thank you, above all else, for your very kind words about this site. Thank you. I struggle sometimes with what to say and what to do and when a post comes along a just the right time to give ME encouragement, it just goes to show that we are all connected here for a reason.
I cannot believe your first doctor laughed and said it can’t be a blood clot. This is why I have become so passionate about raising awareness – even the medical community needs more education about blood clots and how they can effect anyone, at any time. Wow. Unbelievable. What a remarkable your woman you are to be here and share your story as passionately as you have in spite of the pain you are going through. I for one welcome the updates about your recovery and would love to keep in touch. As I stated, I am emotional hearing your story at the moment so I feel like I am rambling, but please know your words have impacted me as they no doubt will help many others.
I want to share a couple of links with you:
– Here is a list of questions I put together for doctors, I would love to hear yours as well! http://bloodclotrecovery.net/first-follow-up-appointment/
– I would love for you to share your story (you can just as it is written above) – http://bloodclotrecovery.net/how-to-share-your-story/
Thank you again and please keep in touch. I look forward to hearing from you. Happy Thanksgiving!
Hi Sara,
I was diagnosed with pulmonary embolisms back in December and was in the hospital over Cristmas. I also had bad pnumonia and 5 fractured ribs again. I was in critical condtion and the doctor wanted me in the ICU, but the nurse told him that they could take better care of right where I was, and they did.
I had just been discharged from the hospital about a week before this from another of pnumonia. My PE woke me in the middle of the night, I was hurting so bad and throwing up, I could barely move. But I laid on my couch for 2 days like that before I had to call my parents to call an ambulance for me. they even stopped & picked up cousin who is a paramedic, he tried to get an IV startedbut couldnt get a vein. They did x-rays, cat scans with contrast and ultra sounds. Thats how they found them. I was admitted & stared on heparin & coumidin, they put me on xerelto twice a day. The day I was admitted, all my immediate family was there about 25 of them. My mom finally told me that they all thought I wouldnt last the night. I dont remember alot about the previous few days, so I didnt care if I lived or not. I wasnt even able to walk by myself, and even when they help me, I would get so short of breath & gasp for air, I have COPD too so its hard for me to breathe anyway so this made breating harder. I have a friend that is a doctor & he said that the fact that I survived the first 10 seconds was a miracle, let alone that I laid with that for 2 days before I went to the ER. Now, Im so afraid that it will happen again coz I still have alot of pain & shortness of breath. I was in the hospital for about 2 weeks & even when I went home, I still couldnt walk on my own & it was real hard to breathe, so my mom & dad brought me up to their house to take care of me & manage all my meds. I am also pain meds & I wasnt taking meds right, too many pain pills trying to get it to quit hurting, so I was way out of it. But now, about 3 a month out, I am doing so much better & feel pretty good. Im able to bath myself without help & walk farther, of course I am on oxygen, but it feels good to be able to do stuff for myself. Im hoping to be able to go home soon, my hubby misses me.
Thanx for this website
Teresa
Hi Teresa. Wow! What an ordeal you have been through and than you so much for sharing your story here. I really hope you can go home soon too, and I hope you start having more good days than not. I will keep you in my thoughts. Thank you so much for sharing your story and for being a pat of this community.
I got a DVT in my thigh about 8 years ago. This clot broke off into both lungs a double PE. Was in the hospital for about a week was started on Coumadin. About a month later was taken off of the Coumadin and within a week I received another PE was tested and found that I have Factor V Leiden a genetic blood clotting disorder. I have a thing to block clots from my legs that was put in during the first hospital stay and before the diagnosis. With my disorder I can clot anywhere in my body not just the legs. The leg that had the DVT has been swollen ever since and I am on blood thinners for the rest of my life. I was not expected to have survived but I did and am doing okay except for the swollen leg that causes knee pain occasionally.