Blood clot recurrence is something that happens. It is true that blood clots can happen more than once to the same person. The fear of blood clot recurrence is not at all uncommon if you have experienced a blood clot. You are not alone in wondering if – or even when – a blood clot will happen to you again. While some people only experience one clotting incident, myself included, some people experience many clotting incidents or even continual clotting, which is frightening to think about. Whether you have had one clot or nine clots, the fear of blood clot recurrence is valid because blood clots are dangerous and they can even be deadly. Blood clots cause physical trauma, pain and discomfort as well as emotional and psychological stress, depression and anxiety. Wondering if a second, third, fourth or tenth blood clot will happen to you, only increases the sometimes already-present emotional discomfort of surviving something that one in three people sadly do not.
In the initial days, weeks and months after my diagnosis, I worried about a second blood clot all the time. I was fearful that every twinge, pain or unusual feeling was another clot moving through my body (presumably on its way to my heart or lungs) – and I was certain that clot would be the one to claim my life. The fear consumed me and at times I could barely eat or sleep. I felt alone in my fear and I wondered if I was overreacting, further emphasizing the thought that I should keep my fear to myself. No one understood, I was certain. So, not long after my initial diagnosis, I found myself trapped in a vicious cycle of worry and and fear of a blood clot recurrence.
For days, weeks, months and even years I worried, the everlasting fear of a recurrent blood clot was at the forefront of nearly all of my thoughts. It hurt, it took its toll on my physical and emotional health – I was tired and anxious – and I feared there was no way out.
Then one day, about four years into my recovery, I realized I wasn’t afraid of getting another blood clot anymore. It was a miracle, it had to be. That was the only explanation as to why a fear I had held on to for so long was seemingly suddenly gone – without any extra encouragement on my part. Of course I prayed, pleaded, cried and wished for the fear to go away, but it hadn’t for so long, so why now?
It was then that I realized, I had also come to understand a lot about blood clots – and even more importantly, a lot about myself – in those same four years. What scared me the most about my blood clot was that I had no idea it was happening: I didn’t know my risk, I didn’t know the symptoms and I didn’t know how I could have prevented any of it. From there, I was able to determine that – armed with knowledge and the passage of time – I had some very valuable tools to help me face, minimize and nearly eliminate my fear of blood clot recurrence.
How to Minimize the Fear of Blood Clot Recurrence
Know Your Risk for Blood Clots
One of the most important things you can do to help prevent blood clots is to know your risk for blood clots. I had no idea I was at risk for a blood clot taking birth control pills with estrogen until a blood clot happened to me. Learn about your risks now.
You are at increased risk for blood clots if you or a close family member have had a blood clot before; you have had recent major surgery; you have an inherited clotting condition; have cancer; are immobile for a long time (confined to bed, long-duration plane or car trip, etc.); are pregnant or have recently given birth; or use estrogen-based birth control pills or estrogen for the treatment of menopause symptoms.
You could also be at risk be at risk for a blood clot if you: have a hospital stay, major surgery such as abdominal or pelvic surgery, knee or hip replacement; have major trauma such as an auto accident or fall; live in a nursing home, are immobile, have leg paralysis, are on bed rest for three or more days or are over 65 years old; are on a trip for over four hours by plane, car, train or bus; have active cancer or chemotherapy treatment; have a bone fracture or cast; are taking estrogen-based birth control pills, patch or ring; are taking estrogen for the treatment of menopause symptoms; are pregnant or have recently gave birth; have had a prior blood clot or family history of blood clots; have heart failure; are extremely overweight; or have a genetic/hereditary or acquired blood clotting disorder.
Once you know your risk for blood clots, you can work with your doctors to determine what steps you need to take to help prevent blood clots. For example: I am at risk because I have had a DVT and PE and I have antiphospholipid antibody syndrome, an autoimmune clotting condition. For these risk factors, I take a long-term anticoagulant as part of my treatment plan. I am also at further risk if I sit for long periods or become inactive. For these additional risk factors, I make sure I move around during the day, take extra precautions on long trips and do my best to eat well and exercise.
It is important to note that in 30 percent of patients there is no known cause for blood clots, also called idiopathic. While this is scary in terms of understanding your risk, there are still important things you can do to help ease your fear of blood clot recurrence: recognize signs and symptoms of blood clots and take steps to help prevent blood clots.
Know the Signs and Symptoms of Blood Clots
One of the scariest parts about my blood clot experience is that I had no idea what to watch out for in terms of signs and symptoms of blood clots – so I did not know I had any until it was almost too late. Had I known that I was at risk taking birth control pills with estrogen and that severe pain in my leg and difficulty breathing when laying down were symptoms of a DVT and PE, maybe I would not have waited so long to get help.
A blood clot in your leg or even arm may lead to swelling of your leg or arm, pain or tenderness not caused by an injury or that does not subside, skin that is warm to the touch or skin that is red or discolored. Call your doctor if you have any of these symptoms.
A blood clot in your lung can be life-threatening and may result in difficulty breathing, especially when lying down, chest pain that worsens with a deep breath, coughing or coughing up blood or a fast or irregular heartbeat. Call 911 or go to the nearest emergency room if you have any of these symptoms.
Take Steps to Help Prevent Blood Clots
The good news is, there are many things you can do to help prevent blood clots. Besides knowing your risk and recognizing the signs and symptoms of blood clots you can take some fairly simple steps to help prevent blood clots.
Talk your doctors if you have any risk factors for blood clots, including a family history of blood clots and together, devise a treatment plan. You can also talk to your relatives about your family’s history of blood clots. Before any surgery or procedures, talk with your doctors about blood clots to take preventative measures. If you are confined to a bed either in a hospital or at home due to surgery, illness or paralysis, talk to your doctor about ways to prevent blood clots. If you have been sitting for long periods or are traveling long distances, get up and move. Take steps to maintain a healthy weight, don’t smoke or quit smoking.
Do I still worry about a blood clot happening to me again? Sure, I do. I think that is a very natural part of surviving something that other people do not. I worry from time to time. However, what I can also tell you is that my fear of blood clot recurrence no longer consumes my thoughts and my time. If I think about it at all, it is a passing though, most usually connected to a specific memory about my blood clot or recovery.
There is hope for healing and you are not alone,
Sara
Reader Writes In: Are you worried about another blood clot? How do you handle your fear? What tips for facing the fear of blood clot recurrence can you share with others? Share in the comments.
To learn more about what it feels like to recover from a blood clot, visit here.
Are you suffering from depression after a blood clot? You’re not alone. For some tips to deal with depression after a blood clot, visit here.
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I’ve just reached the 6 month mark of recovery & every day was a struggle. I was still getting pain, worried if a clot had moved, were anymore being created. People constantly asking me, are you ok, should you be doing that? Had me constantly thinking do I have more? It got to the point that I was certain I had more clots due to swelling, pain & breathing.
My doctor organised for me to have a ct scan. It turns out, I’m clear of all PE & DVT clots to everyone’s amazement. The issues I have been experiencing have been anxiety attacks.
I haven’t got them totally under control yet but knowing what’s happening inside my body has helped me gain perspective & given me the freedom to get back on my feet.
My advice is talk to your doctors, tell them what your experiencing & ask what are your options. Sometimes just talking about it help, other times maybe a follow up test to see what is happening on the inside.
Thank you for this article. I’m at my 3-month mark. Still on Xarelto. Sometimes I get panicked when I’m feeling the urge to cough again and feel chest heaviness after walking a block. I’m paranoid that the clots in my leg have somehow traveled again. Each day it becomes less constant in the back of my mind. Unfortunately, every ache/pain makes me worry now.
Thank you so much for this article. I am almost 2 months PE and I still have some level of anxiety which is impacting my ability to sleep. On the bright side though, I find that I have become braver because of my brush with death! I now speak my mind more freely and am now more focussed on my dreams. I believe I have been given a second chance…which I have no intention of wasting
I’m still in hospital with first PEs and DVTs. Reading about experiences, fears, etc., has helped . Right now I’m being weaned off of Heparin and 2nd dose of Coumadin . My INR is 1.07 so have away to go. Getting educated. Accepting the game changer. Glad I survived and decided to go to ER when I was extremely short of breath after walking 40 ft. Very grateful for loving supportive husband. I’m exhausted time for nap.
I’m just past the one year mark of my 2nd PE. If I can recommend one thing it’s to remember that everyone is different and you are not alone. You have survived a trauma which is life-threatening and may reoccur. Do what you need to do to work through your anxiety, depression, anger, fear, etc. Take the time you need to continue to recover physically and mentally. Seek professional help if managing becomes difficult. Read about people on this website. Survivor stories are such a good reminder that you are not alone and that there is support. Knowing that what you are experiencing is a normal and common response to the trauma you have survived is a relief and can even be empowering. Good luck on your continuing recovery. God Bless.
I was diagnosed with a saddle PE back in June of 2014 and was min or hours away from dying the doctors said the PE was as big as a grapefruit they told me. I wanted to ask is it just me or does anyone else not feel the same after all this I still hurt a lot and so tired all the time I am in an out the ER some many times I think I am going to have to buy the staff Christmas presents there are days like to today I am so tired and hurt so bad. I am on blood thinners the rest of my life but my INR is never the same it is either a 1 or sometimes all the way to a 6. I now suffer from pancreatitis at times. Will I ever feel normal again.
Always take care of yourself, Ken. Read, read, read about other’s experiences and what worked for them.
I had large clots in a calf and both lungs, but no pain. One morning I woke with my leg feeling as though it’d fallen asleep; but I tried walking to wake it and felt faint after 12 steps. Several attempts later the calf felt OK-slightly pinkish, but I couldn’t get around. An hour later my Auntie took me to the ER. My education on clots had begun!
Eliquis is what they put me on for a year, then I lost my insurance so now I self-medicate with time-released aspirin. Never got to get tested a year later as the Dr. wanted–owell. God’s in control!
Changes I’ve had to make are that I eat mostly from the produce department, and walk a little more! I’m a driver so I now see how imortant that is!
I definately should exercise more to build lung capacity back up, and realize that now 1 year after the fact!
I drink lots more water now-plain water.
Life after clots may be different, but it’s also a good wake-up call to strive for better health!
May God bless your journey!
In the last month I have had a bloodclot in the same leg as the one that led to a PE in 2013. I knew the cause of the first one but the latest one is a complete mystery.
After the PE in 2013 I changed jobs to work locally, stopped long haul flights and reduced risk factors of driving distance and stopped endurance running. Having done this it still came back.
Luckily this is not a PE but it is still scary knowing this repeated. I am a healthy active person now on Apixaban for life. Am coming to terms with this.
Did they check to see if your clots are hereditary
Thank you for this article Sara! I would ask you to add the cause of my bilateral PE last March to the list of risk factors:
men who take synthetic testosterone, for example, in the form of Andro-Gel.
It would follow well upon the estrogen risks for women.
Tom
It’s been about weeks 4 and I think about it daily. I misread warning signs for about a month and ended up in the hospital with a dvt, bi-lateral pe’s and a lung infarction. I work out frequently and thought the pain/soreness was due to the workouts. My inr is now at 2.5. I wish I knew then what I know now, especially since my brother and daughter went through this quite a few years ago. Yep, it’s a family thing. Peace and healing, friends.
Thank you Sara
Thank you, So much for writing this about blood clots. I had gotten blood clots in my lung and I was scared horribly scared. The feeling of the nurse rushing in the E.R room where I was and just telling me I have to give you this shot right now in your stomach. I just had my daughter and six weeks later my blood pressure shot up really high 150/80 it was so bad I was seeing spots in my eyes because of the pressure. Then I started to get a muscle cramp pain in my upper back around my shoulder blade area and I thought nothing of it, But I waited told myself it would go away that maybe I picked up my daughters car seat wrong and pulled something. But I was really wrong, I was in so much pain I told my husband to rub it and it still wasn’t going away and then when I went to lay down I couldn’t take a breath in. It was like I had to fight to breath when laying down. Next thing I know I’m going to the hospital and got a scan and then the nurse rushing in with the shot. Like I said horrible feeling in the world. My daughters were there and husband and I was just crying and crying. It’s going to be two years now since that has happened and I still have that fear I seem to over think every little muscle cramp and everything. The horrible worried feeling still hasn’t gone away. I had my doctor re-test me on those special blood tests and everything came back normal. All they tell me that I can do is be active stay active and take my baby aspirin as a prevention. I know its hard to forget it but I know if I’m stressing about it I’m wasting my life stressing about it, Its just hard to bare with the thought. Prayers, Peace and Love Always….
Awwww Cassandra. Your experience is almost exactly Identical to mine. Initially I wondered if I was reading a post I might have written a couple of months ago and forgotten all about it. I had PE when my baby was 3 weeks old, my husband even massaged my shoulder etc, eventually was rushed into hospital because the pain will not go etc. Tell you what, count your blessings and tell yourself you survived for a purpose and most especially for your newborn. I had mine in September 2017 and I am back to normal after completing a 3 month treatment. Suffered with anxiety related chest pains post my embolism but I gradually started exercising /walking after completing my treatment and since then the residual pain was completely gone. Thank goodness my blood tests came back negative for a blood disorder too. I have succeeded in casting the anxiety away and since I vowed to enjoy my second chance at life and make the most of everyday with my kids and family, the anxiety is gone. I understand how you feel and I just want to encourage you to be as optimistic as you can, stay active, avoid dehydration and keep yourself healthy and all should hopefully fall into place. Peace! Eileen
2 years ago i had dvt left knee.I was on xarelto 3 months.Last month diagnosis left knee popiteal dvt plus pe right lung 2 weeks in hospital on heperin drip now back on xarelto.Never thought dvt return nobody in family has had one.Im very fortunate to still be alive.
Thank u i thought i was the only one trapped i her fears i was so scared to speak them out as people around me start thinking i am exaggerating nd that its not a big deal i had a dvt 40 days after childbirth i still suffer from pts whose symptoms might be mistaken with a new clot i just recieved my lab resukt yesterday i have factor v leiden mutation and protein s deficiency i am even worried more my d dimer us 510 and normal range is 500 um scared actually
Six days ago I had a superficial thrombophlebitis in my arm, than a couple of small ones in my hand and wrist. I have been trying to get a doctor’s appt. after having gone to the E.R. initially. I agree that the fear is great, thinking that you might be having them and not know. I have no risk factors except being over 60. I am hoping to get an appt. today. I have not been sleeping well since it happened, sweating and itching, don’t have any answers.
Why did they not admit you??
I was diagnosed with a pe about 5 weeks ago. No family history and dr’s think it was caused from my birth control, which I am now off of. They did a sonogram on my legs and no clots there. They think it was a fluke thing. I’m on eliquis for 6 months now. Then the hematologist will run blood work to make sure I don’t have an anti clotting disorder, which they don’t think I do. This had turned my world upside down. I have extreme anxiety and depression. I’m on meds now for that. Any positive feedback would be greatly appreciated.
Literally going through the exact same thing, wasn’t feeling well back in May and had heart palpitations out of nowhere I went to the er they told me I had to blood clots in my right lung. I’ve been on eliquis since and I’ve never had anxiety but I do now, I’ve been to the emergency room multiple times since and fear everything physically painful now, I went to a cardiologist to make sure my heart is fine and it is, the blood clots went away but I have to stay on eliquis for six months, same as you…the doctor will then test my blood to make sure I don’t have a blood clotting disorder, these past weeks have been depressing and stressful to say the least, I just pray that this is also a fluke and I can go back to living my life
What’s ur update, how was the ur last doctor visit? What did the test results reveal, and were u able to go back to life before the blood clot?
Thanks:
Nine years i was diagnosed with clots in both lungs and left leg. Last year I was diagnosed with clots in both lungs again. This week a clot was found in my right thigh. I am on warfarin , my INR was 3.6 this week. This was the highest number, normally it has been1. something . I thank God for working thru the Doctors amd my knowing the symptoms.
I was 33 when I had a PE. It’s been three months.Thank you so much for posting this. It truly makes me feel less alone. Im sharing my experience below in case someone feels alone or is curious about other experiences: I went to ER w intense pain in my right flank area. I had felt pain for about three days prior (really bad when I layed down) but it was unignorably painful by the time I went to urgent care. I assumed it was stress but when I felt pain in my lower rib area when I took a deep breath that’s when I decided to leave work and get it checked out. The resident at the ER thought it was a kidney stone. Thankfully I went to urgent care before and the doctor there called the ER and told them to get me a catscan. They found a small blood clot in my right lung. I had been on birth control for 3 years and I eventually found out I had factor 5 leiden. My entire family is healthy w no history of clots so learning this scared me terribly. I’m on Eliquis (they swear by these new drugs) and will be on it for life. I hate the fact that I can’t test to see if it’s working but appreciate the ease compared w Warfarin. I’m constantly afraid of another clot despite the medication and me walking 5 miles a day. I really hope w time I’ll get over it but this has been a terrifying experience. I always associated blood clots w sudden death and live in constant fear that I’ll drop dead from a clot. Im learning that most of the time people do not drop dead. In fact my discharging doctor was very flippant about the whole thing, said he wouldn’t even have admitted me to the ER bc my oxygen levels were so good and everyone is entitled to a “one free blood clot.” He blamed my anxiety for why I was admitted. This attitude made me more anxious about doctors but I’m learning to trust my hematologist and accept this. It’s a process but I’m trying.
Lulu, how are you feeling? I was diagnosed in August with PE’s./Dvt I’m on xarelto. I get aches in my back that make me nervous! Everything makes me nervous. Prayers we all heal..
I was diagnosed with a dvt in my left groin and a less severe clot in my right groin and multiple clots in my lungs. Clot presented when my left leg was painful to walk on when I got out of bed, looked down and my leg was swollen and blue. Went to A&E and had a Ct scan which showed up the clots. I’ve been on Edoxaban since July 2019, the only possibly cause is the pill but I’ve been given the choice to stay on the blood thinners for life which I think with ease my anxiety. I often suffer from pain and aching in my left leg which causes no end of anxiety, drs have put this down to post thrombotic syndrome. I’ve had all bloods and even a ECG to check blood flow and no conclusive reason for the DVT/PE, I was 33 when it happened. I have 2 children and no issues in pregnancy. I’m still working through my anxiety and reading through similar experiences in a big help x
Me too just over one year mark. I still have anxiety and lose sleep. It does help to read that I am not alone. I am working on the diet and exercise.
I am coming up on two months since my unprovoked PE. I don’t have a single risk factor for a PE, not one. all the follow up tests and screening to determine the cause came back clear. I am now suffering sever left sided low back pain – I haven’t injured my back and don’t know the cause of the pain. I work out but have been going slow since my PE and haven’t worked my back; just arms and legs and used the elliptical. I am sure it’s muscular; however the last time I thought I had muscular pain I ended up in the ER with a crash cart on standby in severe distress from a PE. I am freaking out a little, not gunna lie. If I develop any other symptoms I will head to the hospital. I am on blood thinners so it’s not likely a clot but that doesn’t stop me from worrying.
Had dvt in right leg they put a stent in then a year later got dvt in left leg caused by stent put in right leg nervous it will keep happening on blood thinners for life and compression stocking for two years
Hi everyone
I suffered extensive bilateral DVT all the way up to my heart. I was 6 months pregnant and had a still birth. After delivery I developed blood clots. Delays in addressing my issues made it more severe. Now after 1 year to my astonishment the clots are still there in my IVC. No blood clotting disorders were found in me. They said it was pregnancy related.
I am planning to get pregnant again and my doctors have made a plan for me. I am scared like anything as I don’t wanna go through that time again. Has anyone planned a pregnancy after a DVT incident? Or pregnancy while on blood thinners? If yes please share your experience so that I can overcome my fear and plan a pregnancy now.
As a driver I’m seated a lot, but the floor doctor at the hospital told me to rock my feet (up on toes and back on heals with toes going up). He said the calf doesn’t know you’re sitting and that this mimics walking!! I take my fears as a reminder that I will fight them tooth & nail–and no matter where I am sitting I rock!