You Survived a Blood Clot…Now What?

 

When I suffered from a DVT and PE in May 2012, it was completely unexpected and unlike anything I had ever experienced before. I had never been ill, never been to the hospital or had surgery. I was not prepared for the physical pain and long process of recovery. I was especially not prepared for the emotional and psychological burden of such a traumatic event. Every aspect of my life was changed as a result of surviving a blood clot. But, now that I survived a blood clot, what was next? Here are a few things I have discovered during the recovery process that are important for recovering, healing and ultimately moving on with the gift of life we, as Survivors, have been given.

Do not let anyone tell you what you should or shouldn’t do.

The words should and should not have become a detrimental necessity of the English language so it seems. It’s toxic, it’s invasive and it seems we all do or say it to some extent. I know I am guilty of often thinking “I shouldn’t feel this way,” “You should find out about,” or “I should have.” What’s the big deal with shoulding, you ask? (Yes, I made up a word, just now). It’s a one-way fast-track guilt-trip seeded in self doubt, to say the least. By dwelling on our shortcomings and failures (which is what we do when we say should), we tend to not look for solutions or take the necessary steps for action to improve our situation.  Do not let anyone, including yourself, tell you what you should or should not be doing when it comes to your health. If you wish you would have  done something differently (for example, ask more questions from your doctor in the beginning), you may say “Next time I will” or “In the future I plan to” or “At my next appointment I will ask what this means for my overall health.” Not shoulding yourself will allow you to take steps that help you to ultimately feel better about yourself and your health. And when it comes to someone else and his or her treatment – you are not them and he or she is not you. We may face common issues or diagnoses’, but at the end of the day, only you and your medical team can decide what is right for you.

Find a medical team.

While I do believe that one doctor can make a difference – even save a life – I also believe it is important to have a medical team to treat your after surviving a blood clot. And, in reality, you probably already have a team forming. Treating a blood clot is not simple by any means and while your hematologist or general practitioner or vascular surgeon may be your main point of contact for follow-up care, keep a team of professionals at your disposal. This way, when something comes up (or goes wrong) you have a team of varied specialties and therefore hopefully talents) at your fingertips already.

Here is what my medical team currently looks like as an example. I have a hematologist who handled my case in the hospital. He is my primary contact for managing my blood, antiphospholipid syndrome, warfarin management and anything new that may pertain to my blood or ongoing condition. For everyday problems (or what I think are everyday problems (like a sore throat), I start by seeing my Primary Care Physician who is a DO. I regularly visit the outpatient lab at the hospital to have my blood drawn to check my INR levels. I also have a rheumatologist to handle any current or new autoimmune concerns (at the direction of my hematologist) and I have an endocrinologist to monitor what has been a lifelong thyroid condition. I also have a pharmacy that I use consistently and am comfortable asking the pharmacists there questions about over-the-counter or prescription interactions. Even though I do not see all of these specialists all of the time, they are there if I need them or have a concern. I have built a team I am confident relying on if I need something or have a concern.

Find and build a team of doctors you trust your health to. For a list of common specialists seen after a blood clotting incident, visit here.

Gather your resources.

Just like building a medical team is important, it is also important to have a pool of resources to help you through the recovery process. This could include things like books, websites, personal contacts and in-person or online support groups; not to mention things like assistance with food, housing, insurance, prescriptions and medical expenses. What people often do not understand is that the effects of a blood clot are devastating and often far-reaching.

When I suffered from a blood clot in 2012, I was not prepared for the fallout. I lost my job, my insurance, my income – everything – and I was not prepared for the financial, emotional, physical and emotional fallout. I already didn’t feel good and on top of it all – I lost it all. That is not something one can easily rebound from. I began gathering my resources from the beginning. I inquired about financial aid at the hospital (you would be surprised most people qualify for something), searched for prescription assistance programs, asked for help in searching for jobs, let my family help when they were able, cut the cable and phone bill, etc. Anything that I thought would make a difference in my situation and relieve the pressure of trying to live with a debilitating injury/illness, I did. Resources exist and yes, many are hard to obtain, but there are some out there. If you can’t buy food, visit a local food pantry or church. If you need help keeping a roof over your head, search for a housing assistance program in your area. If you can’t afford your medication, ask your doctor’s office if they have a social worker available to help you navigate the hurdles. This is not to say any of this is easy, but it is at least worth gathering what resources you can, when you can.

Build a support network.

I will be the first to tell you, people generally do not understand first, what a blood clot is and second, what the recovery is like. It is important to start building a support network early on. Searching for my own support during my recovery is how Blood Clot Recovery Network began. It is crucial that you reach out to other people who can relate to what you have been through – because they have been through it too. But, even if you are not comfortable reaching out to people you do not know, build a support network of people who care about you be it family, friends, fellow survivors and/or an online support group. You can join BCRN’s private Facebook group, or find more online support resources here. Having at least one other person to support you unconditionally in your recovery is important. If you don’t have that person in your life, please find support here, at BCRN.

Recognize your recovery is expansive. And listen to your body.

Recovery does not happen overnight – or sometimes even days, weeks or months after a PE and/or DVT. Physical recovery from a blood clot take anytime up to two years (or more or less, depending on the individual) and sometimes the emotional recovery from a blood clot can taken even longer. Physical and psychological complications can be long lasting and far-reaching. In the beginning of my recovery, I wanted to “get better” right away, and it was hard for me to understand why I didn’t feel better in a week or two – or even a month or six months or a year down the line. Recovery takes time. And your body is very good at telling you exactly what it needs – or does not need. Throughout your recovery, listen to your body. If you try to go back to work, walk around the block or go back to the gym and you are struggling with fatigue, more complications or pain – your body is probably telling you to rest. A DVT and especially a PE causes micro-damage, sometimes to organs like the heart or lungs,  that the body has to heal. Healing takes a tremendous amount of resources and energy from the body.

Put yourself first.

For the first time in maybe my whole life, I had to learn to put myself first during my recovery – and that was not easy to do. I had to say no to things like meeting up with friends for dinner, a phone call to catch-up, cooking, cleaning the house and running errands. I had to say no to things that made me unhappy or uncomfortable – including people who did not support me during my recovery. It was very hard to put myself first, but it was a necessity. You have to come first during your recovery. Learn to say no and if you have things that need to get done in a given time period, ask your support network for assistance or advice. As you begin to heal, you can start to do things that you used to do or take on more tasks, but in the beginning, don’t be afraid to say no, or yes, and focus on yourself.

Work on finding your new normal.

Everything changed after I survived a blood clot and finding my new normal is an adjustment I am still working on to this day. Even more so than adjusting to what is the new normal, though, is recognizing that things can no longer be the same as they were – because I am not the same person coming out of this survival as I was going in. I have faced more pain, fear, uncertainty and failure than I ever thought possible. I have survived something many people do not. I have to live with the burden of a lifelong and complicated illness that I am still unsure of what the outcome will be. Do I have to give up the life I loved and the things that made me happy? No, I do not believe I or anyone does, but I do have a new perspective on life that is different than the one I had before. I have different limits, different expectations, different fears and a new appreciation for the life I have now. A blood clot changes everything. Give yourself the time and patience you deserve to adjust to that fact.

Never, ever, ever give up.

There is hope for recovery. Just over two years out from my blood clot, I consider myself physically recovered although I still face complications from time to time and will always have to manage my medication and risks that come with that. I still face the emotional burden of what happened to me, but I am working on it little by little. I wanted to give up so many times during my recovery, but somehow, I always managed to hope for a better tomorrow. I am passing that hope on to you. You can recover. You can make improvements. You can find support and love. Find something you are passionate about and keep your sights on a goal. For me, if I can help one other person going through the struggle of recovery, I know my own struggle was worth it. Find what makes you happy, what drives you – your children, your family, your career, your pets, your love of music or art, your creativity, your friends – anything – and hang on to the hope that in that happiness, you will succeed.

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

Comments

  1. Sue Bucina says:

    Sara! That is OUTSTANDING!! Kudos for an excellent presentation of Recovery!!! Thriving, not JUST SURVIVING!! My heart and hands and SO MANY PRAYERS go out to my family of survivors! You’re AWESOME GIRL!!! Thank you for sharing! ❤️

    • Hi I am also looking at a wornine from work for time off sick I did go back to work after my first clot now I have a new clot and off work agame with antiphospholipiid and back pain .
      yOur bit on re cover is so true I find myself getting so tired by the afternoon it makes me so mad and frustrated

    • Thank you so much, Sue, this warms my heart on this cold and disheartening evening! It has been a long day. I appreciate you reading and for your continued support. Thanks again for stopping by!

  2. Adolfo Gomez says:

    Thank you so much for sharing your thoughts. This helps me so much!

  3. I’M NOT ALONE!!!! Thanks so much for sharing, I finally dont feel alone.

    • BRENDA, NO, YOU ARE NOT ALONE!! I am SO glad to hear you do not feel alone and I hope you will not be a stranger here. Welcome to BCRN and keep in touch. So glad you are here with us!

  4. john sanders says:

    thank you, finding information and expectations has been hard to find. The only support group any where close is at Shady Grove Adventists in Maryland, next one is December

  5. Maricatherine Mullaney says:

    I am in tears…I am over 5 years out since my PE and I can relate to what you said and it touched me in a visceral sense. Thank you so much for all you do. You keep hope alive and that is so important! The emotional piece for me was worse than the physical, even though the physical was something I would not wish on anyone else, the emotional part is something I still deal with every day. Do I think about the fact that I had an idiopathic clot everyday? Yes. Am I going to let it rule my life? No. It is hard sometimes, but I am so grateful to be a survivor. Thanks for all you do Sara.

  6. Beverly Neal says:

    Thank you. You said everything that has been on my mind for two years. I wish I could have read something like this when I was first diagnosed. I had never felt more alone in my life. The pain I had post DVT was extraordinary. The doctors didnt understand. Unless it is for my monthly protimes, I don’t rely on my doctors. I have discovered that they don’t have the answer and as you said, I have learned to figure out my own body. I live with post thrombosis pain daily, but decided it isn’t going anywhere and ran out of excuses for nit working out and getting back into shape :-). I keep emotions under control until I read a testimony from wonderful people such as yourself and then I just cry and feel better knowing I am not alone. I am going to workout now.

    • Hello… just been diagnosed with a second cloth. How are you doing? Does it ever get easier.. thanks

      • Rick Rockhold says:

        Hello Ana,
        I don’t know if it gets any easier or not. My son, over the past 5 years, has had a clot in his leg, in his lung, and now in his liver. My wife and I are worried sick. I just wanted to let you know you’re in our prayers and hopefully things will get better. This BCRN has given us much hope.
        Take care, Rick and Penny

  7. Had my first in 97, dvts, 3, right leg, several PE’s, ,30 days in the hospital. Listed as terminal, was placed on coumiden, since then I have thrown clots while on coumiden, eventually put on fondaparinux, so long as I take the current dose, 5mg, no clots. Why do I throw them? No answer, all the test come back normal. I exersice daily, don’t smoke, don’t drink, but every day I get up and live .

    • Thanks for that last line. You’ve encouraged me. I try to appreciate everyday and it helps. Monday can be a hard day to go to work. But, then, I give myself the pep talk. “You have a great job that your good at. You are relatively healthy, and your blessed to be alive to go to that great job. So, shut up that negative Monday talk, and go and enjoy your day.” Most of the time that works, but sometimes I fall into the fear and let it creep in. I used to think it was self pity, but I now know it’s fear.
      So, thank you for the reality and encouragement.
      And, enjoy the day!

      • Hello Tricia and thank you for your post! This brings a huge smile to my face. Thank you for encouraging ME! I had a rough Monday. I was back in the hospital because I thought I had a DVT (I did not, thankfully, and was sent home), but it was scary. Reading your words of hope are a true blessing. I hope you enjoy this week!

  8. Dave hale says:

    It’s nice to find people who have gone through the same trauma as myself,it’s such a horrible illness,I my case it turned out to be genetic,all the people who go through this also suffer with all the emotions that go with it,with the advance in research and brilliant websites like stop the clot a lot more information is out there.

  9. It’s been two years since my clot. I’m back to working out & doing martial arts. I push myself everyday to keep moving forward. In a way I’m smarter now. I don’t workout like a mad man anymore. I listen to my body, & I don’t over train anymore. It’s been a tough road to go down, but you can’t stop living! Great post!

  10. Thanks for sharing. All of this is new to me. I especially like your advice about not allowing others to dictate what you should or shouldn’t do. I don’t think people in general understand the seriousness of blood clots. I was a walking time bomb. I am so grateful to be here.

  11. Courtney O. says:

    I survived a saddle pe july 30th, 2014. The doctors told me this kind is usually not found until an autopsy. I’m so lucky to be alive. The realization that I have a purpose makes me grateful but knowing I need to find what my true purpose is, can be a burden. One of the things that has helped me in my recovery is educating others about the leading cause of preventable premature death. I have shared my story on fb. Posted articles and educated my co-workers and friends, even posting my own column on my company’s internal social media site. I believe that knowledge is power and knowing about the signs, causes and risk factors for dvt’s and pulmonary embolism can help us survivors heal and prevent others from suffering or dieing from this.

    • Courtney O. says:

      Oh, and I invite other survivors to visit thisisserious.gov and also the cdc has a secyion about dvd survival stories. Please join me in bringing awareness on blood clot awareness day in march and world thrombosis day on oct 13. Let’s do our part in spreading the word. God Bless!

      • Thank you, Courtney! I have This Is Serious listed on my site as a resource, but I do not think many people know about it. I would also love to pass it on again on social media as a reminder so thank you for that. I hope you were able to participate in some awareness on WTD14.

    • Hi Courtney and welcome to BCRN. Thank you so much for being here and thank you for sharing your story. This is not the first time I have heard about an autopsy being the place a PE is discovered so I know there is much truth to that statement. I am glad you and I are both here to talk about it along with so many other Survivors. What you have said is spot-on and something I would like to pass on to others as well. You are right about raising awareness and you and I share a passion in that mission. Thank you! If you ever want to further share your story with BCRN, I would love to know more of it – http://bloodclotrecovery.net/how-to-share-your-story/ Thank you again – together we CAN make a difference!

  12. Donna Ratliff says:

    I was diagnosed with a DVT on August 26 and two PE’s a week later. On September 9th I was hospitalized for complications with breathing. I am on Xarelto and it has taken the full 7 weeks to feel somewhat normal again. The fatigue was the worst thing and learning that I can’t do everything. Climbing stairs still bothers me but I am able to bend and stoop again. I hear stories of much longer recoveries and while I am no where near out of the woods, I am encouraged by your stories and support. Thanks for your posts.

    • Hello, Donna! Thank you so much for sharing your story and for being a part of this community. I am glad you are recovering and hope you continue to have more good days than bad ones. Recovery is so different for each individual and I know your story will bring hope to others who may be struggling where they are in their recovery right now. My best to you as you continue on your journey and keep in touch!

  13. Hi to all
    I was feeling bad all of April (2014) tired and short of breath and my Doctor thought I had a bad chest infection as I also had high BP which I NEVER have.
    Two days later another doctor admitted me into hospital and I had a chest xray which was CLEAR so they said it was a bad chest infection with bronchitis and they would keep me in over the weekend.
    Next day Pulmonary Specialist said I sounded worse and put me on Predisinole.
    Two days later I told him to take me off it cos my hands were shaking and I was not feeling better. He agreed and said he would send me for a CT with contrast.
    Within 20 minutes of being back in my room the Specialist was there to inform me that he can’t believe I WALKED into hospital and that I was very very sick.
    Both of my lungs were full of LARGE bloodclots.
    I was taken straight back down for an U/S of my legs, which was clear, and an Ecchocardiogram which showed a stretched right Ventricle and my Cardiologist said he couldn’t understand that I didn’t have a heartattack or be dead.
    I was put on blood thinning injections and was in hospital for two weeks.
    When my INR was stable I was put on Warfarin and because the clots were idiopathic I will most likely be on them for life.
    It is six months later now, I still get VERY fatigued depending what I do and do get chest pains on and off.
    It’s an emotional Roller-Coaster and if it wouldn’t have been for Sara’s unselfish support I don’t know where I would be, emotionally.
    I don’t smoke or drink, am very active, am 67 years old and nobody knows WHY this happened.
    Ten weeks ago I had another scan and the clots are still there but my heart has improved a little.
    Thank you all for your blogs and support, the best of health to you all,
    Regards Monique, from Australia

    • Hello, Monique, my dear! It is always a pleasure to hear from you and I do appreciate your kind words about me and this site. I am so glad to have you as a part of it, truly. Thank you for sharing your story because I know you will touch someone who may be going through what you have and for providing encouragement!

      I am glad to hear you heart has improved, and I am hoping it continues to do so. I know I am FOREVER slow on responding to my emails, but I have not forgotten you and I appreciate your continued support of me in my efforts to raise awareness and help others. Talk to you soon!

  14. This is such a great site! What drives me stark raving mad is why is it doctors are so hesitant to help us discover is the blood clot has dissolved or is still there?
    I was diagnosed two years ago. Thought I had bronchitis, for two weeks with a hacking cough; then a severe pain to my rib cage I thought was a muscle strain from the coughing; finally I got dizzy one day almost passed out and realized this was serious. Went ER and yes I had the feeling of doom. I knew I was dying. I told the ER staff in fact, that I was dying…each breath felt like a hot knife stabbing me in my chest so severely that I couldn’t breathe. They had to give me morphine because I couldn’t stand the pain and could not lay down on the gurney…Went to Xray and there was a PE in my lung. NO reason why it was there. Had no trauma, no surgery and no long time travel. My legs were clear. Doctors were baffled…but amazed I was able to drive myself to the hospital ( 8 miles from home)–did Coumadin for about 3 months and now 2 years later I still feel the effects that warned me of something at the beginning of my PE crisis: tired, tightness in my chest. I just want to know if this thing is still there…but they wont do xray because of the radiation exposure…please somebody give me a recommendation…I can’t take this not knowing!

    • Dave hale says:

      Hi Gwen,I have had two pulmonary embolisms,my first one was 8 years ago when I was foundtohave a clotting disorder which was genetic,at that time they said I did not need to stay on warfarin,guess what two years later I had another.As you say I have never had any scans to see if any clots are about,like yourself you do worry about different aches and pains,the best thing I ever did was to buy myself a coagucheck meter so I can monitor my own bloods,this is a horrible illness and groups like this enable you speak with people who have the same condition

      • Thank you Dave…yes the not knowing is the worse!! I am going to my Primary Care doctor this week for a followup and I will investigate the Coagucheck meter.

        • Good luck at your appointment, Gwen. Thinking of you!

          • Wow Sara! This site is surrounded and blessed by angels. Went to my primary care doctor yesterday and had a list of things to ask her about followup care with specialists that I got from your site. Before I could even part my lips, she ran down a list of lab work and specialists she was scheduling me for: radiologist, cardiologist and hematologist!!! Bam!!
            I did three labs and blood work (D DIMERS) yesterday and will see a cardiologist early next week.
            Thank you from all of us who have found a true friend in recovery to get us through this.

          • You are very welcome Gwen and again, thank you for being here! I hope your visits at the specialists go well and you find the answers to provide the best course of treatment possible. I am glad you are receiving follow-up care like this! Thank you again and keep in touch.

      • Thank you for being here and for sharing your experience, Dave!

    • Hi Gwen and thank you for reading – welcome to BCRN! I understand your fear, most definitely. Were you ever checked for clotting conditions, genetic or autoimmune? If not, those tests can be performed by a hematologist and may provide some insights. Here are some other risk factors that can contribute to clotting, if any of them may make sense to you – http://bloodclotrecovery.net/blood-clot-basics/dvt-risk-factors/

      I would think after two years they would do another scan. Typically they like to wait about 6 months or so, so that does not make sense to me either! Can you ask for another opinion somewhere, especially since you are having some symptoms that concern you? I agree with a history of PE, you should not have to wait and wonder if it will happen again.

      Thinking of you and hoping you can find answers and comfort. Again, thank you for being here.

    • I know how you feel..I am just a week from being discharged from hospital for a saddle embolism and a large dvt that I didn’t even know was there. I finally have a specialist who says she does repeat CT, echo and u/s at 6 months to ensure the clots are gone. I will not feel totally safe until I gave these tests. I still get SOB, weak and clammy and the odd heart discomfort but was told that these feelings may happen as the clots shrink. I hope you find a doc to retest you.

  15. Donna Mills says:

    Hi Sara, Just had my 3 months post dvt/pe leg ultrasound and I no longer have the dvt. Primary doc says I can stop taking xarelto, but I am waiting to see what the pulmonologist says. I want to stop, but I also feel a little nervous about it. I have chest heaviness that has continued to come and go as wenll as leg tightness if I go to work without compression socks. I am so thankful to be aluve, but boy isbthis stuff scary. I am hyperaware of everything that happens to my body. So hard to tell if I should be worried. I hope you are well and I wish everyone continued progress on their journey.

    • Hello Donna! That is great news that the DVT is no longer there – I am so glad to hear that! I think it is very normal to be worried about stopping blood thinning medications as I have heard that from many people here, and I also understand your concern because I would feel the same way. I think it is good you are getting a couple of opinions on the matter. You are right, this is very scary and YES, I can perfectly describe a state of “hyper” awareness that I have had since my PE and DVT. I do think we learn to gauge that awareness (and pain) as we go, but it is very, very hard. I am still working on that after two years and still take some pains and feelings very seriously, and I think I always will after what I have been through. Thank you so much for sharing about you too! Keep in touch.

      • Donna Mills says:

        Hi Sara,

        I’ve been off the blood thinners for two days and I actually feel more energetic and haven’t had any of the chest heaviness that I usually experience at the end of the day. I am a little less nervous about being off the meds. I am going to meet with a homeopathic practitioner to get some guidance for a dietary plan to keep me in the best health possible. I will let you know how it goes. Healthy wishes to everyone!

        • Hi Donna! Thank you for the update. I hope your appointment went well and you have found a suitable health plan. I would be interested to know what the homeopathic practitioner thought, I have thought of seeing one myself. Wishing you health and happiness this Thanksgiving. Enjoy and keep in touch!

          • Donna Mills says:

            Hi Sara,

            My first visit with the homeopath was basically a therapy session. She asked many questions that helped me see the patterns in my behaviors that cause stress and anxiety. It really helped relieve my anxiety and I am making better health choices. She used all of this information to order a homeopathic remedy that I took for the first time last night. I don’t notice anything different yet, but I do think the benefits of homeopathy are based on its reliance of you really evaluating how you feel and how you treat yourself. If you decide to go, make sure you choose a practitioner that encourages to use homeopathy in conjunction with your MD and not shun traditional medicine. I don’t know where you live, but I live in the San Diego area. Wishing you a wonderful Thanksgiving.

          • Thank you for this information, Donna. I am very interested in homeopathic remedies and yes, in conjunction with my MD. I want to look into it more and find someone who can help in my area. I am in Ohio. Keep in touch and let us all know how it goes. I will look forward to hearing form you. Thank you and talk to you soon!

  16. I just found your site and it’s nice to hear about others in the same situation. I recently developed a DVT while giving birth to my son. Sent to the emergency room a few days after returning home with pain and they looked for a clot and missed it. They mentioned I could go for another scan if I wanted to “be really thorough”. Well, I did and they found it. Fast forward 3 months and I have just completed treatment and the clot is gone. Balancing breastfeeding my newborn with the shots, warfarin and other problems (mastitis) that arose was challenging to say the least. The whole thing is just scary. I’m beyond happy to be clot free. I now know I have a genetic predisposition for it and can live my life with that in mind. I’m grateful that I “wanted to be really thorough” and went for that follow up. Baby is now 3 months old 🙂

    • Wow, Lori! Thank you so much for stopping by and sharing your story with us. I can’t believe they gave you the option to be “really thorough,” but I am so glad they did! That is unbelievable that someone did not just suggest you have another scan if they weren’t sure, you know. I am so glad you and your little boy are healthy. I know there are many ladies here who can connect with you and what you shared and again, I am thankful for your insights. Take care and Happy Thanksgiving to you and yours. May you continue on your journey to health.

  17. Hi. I am now into my 6th week being home from hospital recovering from my PE. Some days are really hard to cope with and I just have to keep taking one step at a time. Deb

    • Dave hale says:

      Hi Deb I know that you are in your early days of this horrible illness but things will get better,not sure where you are from but after my first clot in 2006 I had a test to see if any family history of clots,it seems that my MuM who passed away in 94 had a clotting history,I would assume that this test which takes 3 months will prove if there is any family history,I am on warfarin for life and it’s something you live with.Initially every ache and pain you think the worse ,in the UK its a case of blood tests until they get the right balance,being on this website is great because you will get lots of good advice,so good luck and keep in touch
      Dave

      • Hi Dave thank you so much for your reply. I live in UK. Have had extensive blood work done and yesterday another CT scan. Both parents had blood clots. Going to talk to a nurse today about where i go from here. Stay in touch all info very welcome at this time. So glad i found this website. Deb

  18. This was beautiful! Put in to words what I’ve been thinking since my bilateral PE in November.

  19. Thank you! Thank you! Thank you! 5 weeks ago I was sent to th ER and diagnosed with a large clot in my right leg and multiple PE in my lungs. I was shocked when my team of docs said months to heal. 5 weeks later and my leg is still swollen and psychologically I’m struggling. I will win this battle, but I’m surprised at how ill equipped I was for it.

  20. Denise Goewey says:

    I am new to this site and am grateful for it. I was diagnosed with an extensive DVT in my left leg and multiple PE’s in both lungs. Although I understand I am lucky it wasn’t fatal and have been assured that I should be out of danger of forming new clots, I still am afraid of the existing clots moving or new clots forming. I am taking warfarin (alternating 5mg and 7.5mg) and have been out of work since I was released from the hospital on 12/22. Today I saw my PCP and was told she was very pleased with my progress and that she felt I would only be on warfarin for 1 year, not the rest of my life. Yet she said my condition was still fragile and I am out of work for another month, at least. Although I had no symptoms with my lungs, I am experiencing some numbness in my leg. Is anyone else experiencing this? And do you know why?

  21. Preeti Kang says:

    I suffered a pulmonary thrombus in last june. the problem started with acute pleuritic pain in right lung , which remained undetected for nearly two months .With time I started feeling tired, fever, cough and breathlessness with my pulse rate reaching 148 finally in end August, which was finally detected as thrombus. Doc just commented on seeing me that u r lucky r living. I was admitted and Cath Angio was done the next day. Remained on heparin for a week and now on acitrom 4mg since August. just waiting for a recovery as I do feel tired , exausted. Docs say it will take 1 year to three years to recover. feeling depressed hoping for the good new beginning.

  22. Thank you so much Sara. I read your post and the comments with tears in my eyes. I had multiple bilateral PEs in June 2015 and now recovering. I went back to work in about 4 months and have not had any incidents of breathlessness since I started walking for exercise. I was on Xarelto for 8 months and only just stopped 4 days ago. I have heaviness in my chest and it scares me but I am determined to beat this.
    Liz

  23. Barbara Washington says:

    On Feb.12, 2016 I was awakened with severe pain in my left calf. Tried to walk it off, when that didn’t work, decided I better check with my doctor. He asked me a few questions and advised he felt it was a blood clot and I should go to the hospital immediately and get an MRI. I had no idea of what to expect, didn’t know anything about blood clots, other than the pain in my leg I thought I was fine and didn’t need a wheelchair to go to the MRI department. The next thing I knew I was on the floor and trying to get up, and I heard someone saying they caught me and I didn’t hit my head. I heard them saying how fast my blood pressure was going down and I knew it was serious and a darkness was coming over me. I was intubated and put on mechanical ventilation. I know I am quite fortunate to be able to be on this website and so grateful I found it, that I am not alone. Up until now i had no idea this was an illness that has happened to so many around the world. I didn’t have any symptoms other than the pain in my calf, which I had ignored for 2 weeks until it got unbearable. Thanks to everyone that have shared their experiences and given me some insight about this and hopefully I can overcome some of the fears and learn how to get well.

    • dave hale says:

      Welcome Barbara to our group this is such a horrible illness that can strike at any time,luckily you were in the right place to get it sorted,you will find a wealth of information from people in similar situations

  24. Thank you Sara. I think I will in time learn to cope and accept my diagnosis. I appreciate you sharing your story and helping others. This illness does not define who we are, it just makes us work harder to become stronger. It gives us a better understanding of how precious and fragile life really is. How every day is a blessing and a gift. That we should be thankful for each day. 🙂

  25. Hi, I feel alone in this. I was diagnosed with pe, they said was small, hospitalized for 2 days, did a courtesy follow up the following week and told my recovery would be about 6 months on Xarelta. That was 2 days ago. Now, I feel overwhelmed and struggling to find a doctor to because I didn’t have a primary doctor when I got diagnosed and I’m finding my options for help is really limited.

    I have no idea how often a person should go to doctor’s appointments while in recovery for pe. I don’t know how they can tell a set time for when I’ll be ok again or how they’ll really know. I keep apologizing for being sick to my wife because I know money is tight around the house and she keeps telling me not to apologize and not worry about money, just getting better. I don’t have insurance so I’m being ping ponged around as I’m calling to find a doctor while I’m recovering. I don’t even know what normal is supposed to feel like while recovering from pe.

    • Thank you Sara for the email and informational links. My wife and I appreciate that. We never knew how many people get diagnosed with pe each year. It’s so good you have a site like this that helps people.

  26. Sara,
    Thank you for sharing your story and putting so much information on blood cot recovery on one site. I’m just starting recovery after last weekend in ER and hospital. Thankfully I had previously read articles on warning signs of DVT and PE. My symptoms started on my daily bike ride. By early evening I knew something was wrong, especially because of the shortness of breath. My wife took me to ER and after ultrasounds of legs and CT scan of lungs I was diagnosed. Doctors told me it could have been a lot worse. I’ve read the stats at CDC on the percentage of people who pass away before getting to ER and was shocked.

    And so it begins. I’m in my early 60’s and retired. My doctors believe my lower leg DVT was caused by extended road trip I took weeks earlier. I had even made a point to stop and get out every 1 1/2 hours or so. The clots I have are localized to lower right leg and one lower lung. Lung clots are few and very small. Since starting the drug therapy I feel good.

    Thankfully I have good health insurance with drug coverage, good doctors and good family support nearby. Still very concerned about reoccurrence and the changes in my lifestyle as a result of of the clots.

  27. Thank you Sara. You have summed up beautifully how I am feeling right now. I’ve shared your blog with my friends in the hope that they will understand how I’m feeling and coping. Much love to you for saying it so eloquently. xx

  28. I had great support from family, after DVT, after giving birth to my daughter. But often I felt scared and alone. And now sometimes I feel so, especially when my leg hurts. This article brought tears to your eyes … you perfectly described everything that happens to a person after DVT. I sometimes had the feeling that my life is falling apart in front of my eyes, that I’m crazy and weak…here we don’t have group supports, nor we can form our team of doctors. usually I have diferent doctor at each review be, and he does not known myhistory. this all gave me a great sense of insecurity, sometimes it seemed to me they do not know what they’re doing.

  29. Hello
    Thank you for the inspiration. The DVt and pulmonary embolism has been so difficult
    emotionally and physically thete are times I feel lost.

  30. Gary H Steadman says:

    “A blood clot changes everything.” That one line says it all. I just found your site tonight and find myself in tears from the connection I feel to these stories. An ER visit brought my diagnosis five months ago. Extensive DVTs in five major veins of my right leg and so many PEs throughout all lobes of both lungs that my doctor said he couldn’t begin to count them. Today I find it’s the emotional toll, ongoing, which is the least understood by others and most difficult to work through. Thank you for the resource you’re providing here. I think I’ll be back often.

  31. My name is Tiffany. I am 28 years old. I was recently diagnosed with a subclavian blood clot on my left side. My family and I were baffled by the diagnosis because we have no history of blood diseases, there had been no trauma, or anything that would indicate that a blood clot would occur. To make a long story short, the doctors put me on xarelto and it caused severe bleeding. I almost bled to death and had to have 6 blood transfusions. While in the hospital, I developed another blood clot in my brachial vein and several small blood clots in my lower right lung. The doctors are baffled as to why this has happened. I’ve just had the genetic testing done with the hematologist and I am awaiting the results. This whole situation is terrifying. Reading the stories here on this site have helped me begin to come to peace with everything that has happened. Thank you all for sharing your stories and helpful advice.

  32. Thank you for all the great information here. I was diagnosed with PE about eight months ago. Most days, I feel pretty good, but every once in a while, I go through a couple days of shortness of breath. My first hematologist made me feel stupid and like I was worrying too much (I overheard him explaining my case to a new intern and he called me “emotionally unrelaxed”). I have a new hematologist who is wonderful. That said, no one ever told me about the emotional issues that would come from this. I’m just so grateful to have stumbled across this site. Thank you again.

  33. Anna Van Hoek says:

    I came across an article about you in the October 2017 issue of Costco Magazine. I too was diagnosed with DVT in August of 2016. I injured my leg in June then went on a 6 hr flight 2 days later with a boot and a knee scooter. Who knew? It wasn’t until August that I had symptoms. The news was devastating. As a 36 year old I felt like I was 90. I was a very active person and now I suffer from post thrombotic syndrome and my activity is very limited due to swelling and pain even with compression socks. I was on Xarelto from August of 2016 until recently. Due to the Xarelto, I had to have a hysterectomy because it was either die of a clot or bleed to death. It also caused me to have arthritic paid and 20+ lbs. of weight gain. I recently switched to Eliquis and am hoping it helps with the pain and weight gain. I ended up with a filter for over a year which I just had removed a couple months ago. When they did the venogram to place the filter, I had 2 clots making their way up from my leg. One was in my hip and the other in my stomach area. Definitely life changing and very depressing. Thank you for sharing your story.

  34. I was shocked by your writing as is sounded as if I were reading my very own thoughts.

    I just wanted to agree and remind everyone that it does get better. I had a 7 inch clot in my brain (stroke) ten years ago and yes it does get easier. I went through the valleys. I had a headache for 5 years, and the medical bills, and the emotional struggle. I now have an even better job than before, two new lovely children, and my marriage not only healed from the stress but is even better. I left doctors that I didn’t fit with and have over the years compiled a great team. Keep moving forward. Never quit. Never quit. Never quit.

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  1. […] prognosis for surviving a pulmonary embolism if caught early is good, as fewer than 10% of fatal PE cases occur in the first hour of the […]

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