Dan Capobianco Tells His Blood Clot Survival Story

Categories: Patient Stories

I am a 56+year old male.  I have occasional asthma, primarily exercised induced.  If I notice asthma symptoms while working out, I can usually push through them and finish the work-out, although I do use a bronchodilator when I need to.

I am an avid martial arts devotee – black belt in one style, brown belt in another style (working to black).  I do some weight work (not heavy lifting), occasional pull-ups and about 30 push-ups every other day for strength training. I typically train for about two hours 3 times per week.

Martial arts involve repetitive kicking and punching. We punch and kick a heavy bag to develop power in our techniques.

Recently, I noticed what looked like a big purple bruise on my left outer bicep, which I ignored. The next day, I noticed my left arm was a little sore, but I attributed it to my routine of pull-ups and/or karate.  Once again, I paid no attention.  Five days later, my arm was still sore and noticeably swollen, but it was not really painful and I was able to move it in all directions.

I went to karate on that day anyway, and did a full 2 hour work-out without noticeable aches, pains, or shortness of breath.  I worked up a good sweat, which is normal.  During that particular practice, I worked on the punching bag.  The next day, my left arm felt sore and was sensitive to touch from my left elbow up to the center of my armpit.

I could feel the vein underneath my armpit, and it felt like a rope.  I thought I pulled a tendon, so I took it very easy on my left arm while I exercised two days later.  This was another 2 hour work-out, and other than being slightly winded by the end of practice, I did not feel any discomfort or pain.  My breathing returned to normal within a few minutes after the practice.  That same evening, my left arm was noticeably swollen, but there was still no pain.  It still felt like muscle soreness.

My left armpit was very swollen and the vein under my armpit still felt very rigid and very sensitive to touch. I saw my doctor ten days after my first symptoms, and she ordered an immediate ultrasound of my left arm.  It showed a “massive” blood clot in my subclavian vein.  My doctor sent me immediately to the Emergency Room which was on the next floor.   The doctor there ordered a CT scan that showed 5 clots in both sides of my lungs.

They also did a heart ultrasound that was normal, as were my blood pressure and heart rate.  I was not experiencing any chest pain or shortness of breath, despite my diagnosis of pulmonary emboli.  Nevertheless, I was immediately admitted into the hospital and began low molecular weight heparin and Coumadin® treatment that night. The final conclusion is that my clot was “idiopathic,” which means there is no specific cause.  I was discharged two days later.

I do not know exactly when the blood clots broke off and traveled to my lungs, or how many days I was actually walking around with a pulmonary embolism.  I’m not even certain when my “massive” blood clot developed. All I know is that I had blood clots in my lungs that got everyone’s full attention, mostly my own.

I have no abnormal issues with my blood-no familial or genetic predisposition to blood clotting, nor is there is any family history of blood clotting.

I have already seen a blood specialist. She had nothing more to add to my very limited understanding of this. I am planning to get a second opinion.  No doctor is willing to advise me as to how soon I can resume my normal work-out schedule. At this point, I have been on blood thinners for almost three weeks.  I have read that “within 2-4 weeks” I can likely begin training, but I am sitting this out until I can get more definitive medical advice.

I am trying to get answers from my doctors.  I have been reading like crazy.  Thus far, doctors have dismissed my questions because they tell me that blood clots very rarely happen to “healthy” athletes.  I see blood clots as a serious issue that does not get enough press.

I believe that there are many people like me out there who may think they have a routine sports injury when in fact they have something much more serious.  I feel very fortunate that I had my symptoms checked out, even if I did wait for a number of days.  This is like having a ticking time-bomb strapped to your chest.  From what I read, there is up to a 30% chance of the bomb going off and killing a patient with an undiagnosed pulmonary embolism.  What if I didn’t go to the doctor?  I definitely would have continued going to the gym according to my usual routine. Would I have made it?  Would I be around to write my story?

Take Home Messages

  • Seek medical attention for symptoms that seem like a muscle pull or soreness, especially when they seem to get worse, since DVTs often appear in that way.
  • Persist in asking questions of your healthcare provider if you think you are not being heard, or your questions seem unanswered.  It may help to write them down and to have a close family member or friend who can help you get answers.

Read more patient stories here

Author: admin

19 Responses to "Dan Capobianco Tells His Blood Clot Survival Story"

  1. David Proctor Posted on August 27, 2013 at 4:29 pm

    “Idiopathic” clots of the subclavian vein in otherwise healthy and athletic people is often due to position-dependent traumatic compression of the vein in the costoclavicular space (between the first rib and the collarbone), known as Venous Thoracic Outlet Syndrome. If left un-definitively treated with short-term anticoagulation there is a significant chance of rethrombosis in the future and subsequent permanent damage to the vein. The definitive treatment is the surgical removal of the first rib. Removal of this rib prevents further damage to the vein and thus subsequent thrombosis. Full athletic recovery is expected in 3-6 months. Dan may want to find a specialist in Thoracic outlet syndrome to be evaluated.

  2. Mark Posted on March 27, 2014 at 4:30 am

    I left the hospital last Monday, March 17, 2014 after several symptoms appeared. I did not recognize the earlier symptoms of becoming out of breath and labored breathing gasping for air. I have PTSD and suffer from major anxiety attacks regularly. I dismissed the week long event to the existing conditions. However swelling in my right leg caught my attention. My left arm from the pivot point down to just above my biceps has been hurting for about a month or two. The pain is similar to the pain in my diagnosed DVT. I still don’t know if it’s related. However the hospital did an immediate CT Scan and before it was even complete the technician rushed me back and spoke directly to the doctor before the scan was prepared for viewing. I have a massive Pulminary Embolism over both lungs. I was in the hospital from Wednesday to Monday until my INR reached 1.5 where I was released to outpatient care at the VA. My levels shot up to 4.15 and afte 3 days of not taking Warfarin it dropped to 2.25. Now I’m on a set schedule per doctors orders. Will check every 2 weeks until later – them once per month.

    Had my brother not recently gone through this I might be dead. Both of us are reasonably healthy. I’ve become less mobile due to various symptoms from my military injuries. But I thought I moved enough to prevent blood clots. There is no genetic evidence shown from testing. But one nurse said that is not absolute. I know 3 in my family that have gone through this. And I suspect I should stay on anticoagulants longer than they tell me. I have a 9 year old, 13 year old and 19 year old that need a daddy. If for no other reason that has been what keeps me fighting for my life, even through PTSD. This just adds to the list of anxieties.

    I can’t get straight answers from doctors. It’s either too risky to say “get active again” or they really don’t know. Enough nurses have advised not to over do it. So I’m in a sort of limbo. I am just going to go as my body allowed hoping I don’t dislodge a clot. Hoping to naturally absorb the existing clots. But any future symptoms I will report immidiately to my doc at the VA. They put me on a high priority list. Being a 100% disabled vet puts me at a financial disability and I have to take what I can get. I just hope and pray they don’t kill me.

  3. Keisha Posted on May 30, 2014 at 3:45 pm

    I am a 31 year old female who was recently released from the hospital with a DVT. I was put on both Lovenox and Coumadin in the hospital. Since my discharge 2 days ago, I have been put on 5mg of Coumadin at home.Like Dan, I have a subclavian blood clot and experienced nearly the same exact symptoms. The day I began to notice the symptoms (arm swelling, discoloration of my arm, etc) I had just finished a Crossfit workout. I had little to no trouble pushing through the entire workout. I stay active by doing Crossfit 4-5 times a week, so this blood clot was a complete shock. My general practitioner is equally as shocked due to the fact that most subclavian blood clots are trauma induced. My doctor is referring me to a vascular specialist so that I can see if Thoracic Outlet Syndrome was a causal factor. He has also ordered blood tests to see about the numbers and presence of certain enzymes in my blood. As for working out, he said to wait a few weeks until I get back into my normal routine. For right now I am just doing cardio and will get back to lower body lifting in 2-3 weeks. I do not plan on doing any upper body lifting until I see my specialist and can discount Thoracic Outlet Syndrome.

  4. Karen Posted on June 11, 2014 at 6:08 pm

    After having my first child I developed varicose veins. These are pretty normal for women to get and I had no issues with them except for how they looked. When I had my second child the fireworks started. Within a month of conceiving I started having trouble with phlebitis. My aunt had two DVT’s and this was in the back of my mind. But all initial blood tests showed I had no clotting issues yet the phlebitis persisted. The doctor insisted the reason I was getting phlebitis was due to the varicose veins. At one visit I said, “I’ve had varicose veins for 5 years, why am I getting phlebitis now?” The doctor stopped and looked at me a minute. He decided to run another set of tests this time on proteins. I got an answer, when I’m pregnant, or have surgery, or take birth control (I never took birth control after my first child), or have a significant injury, my body’s S protein drops and this is the protein that helps un-clot my blood. So, my body clots normally however there are times when my body’s ability to unclot is compromised. My aunt never had this test and we reason that it is most likely the same for her. Doctors don’t always think to run this test and it will only show up if it’s happening. After I had my daughter the protein came back up and I was able to stop the fragmin and heparin shots that I had to learn to give myself for nine months. Food for thought.

  5. K Valcovic Posted on July 17, 2014 at 11:58 am

    Hello
    I am a 39 year old runner and cross fit enthusiast! 13 years ago I experienced a subclavian clot! After many tests and referrals it was determined to be thoracic outlet syndrome!
    However just recently I have been doing more intense cross fit style workouts and developed a blood clot in my right hand! Resulting in another full work up! This time they diagnosed me with a PFO (patent foramen Ovale) “hole in heart”
    The cardiologist however is still puzzled as to why I am throwing clots to arms and does not feel it is related?!? Am currently on 6 months of blood thinners and allowed to resume workouts! However dr’s still have no clear cut answers!
    It’s scary to have no anwsers but I see some similarities between both Dan and keish’s stories
    Would love if either of you have gotten anymore answers
    Please feel free. To email me
    Take care
    Kyla

  6. Aaron S Posted on July 18, 2014 at 2:39 pm

    I’m a 38 year old man. I had something similar happen 22 days ago. Like the others on this thread, I am very active. Most relevant, I strength train using the Starting Strength program. (After 7 months or so on this program, I’m on what’s called the Texas Method. This is all documented online.) I also run about 30 miles a week and do mobility work for about 30 minutes a day.

    Three weeks ago, my right arm swelled up and turned almost purple. This was Thursday. I went to an urgent care clinic. They thought it might be a bee sting and gave me some steroids. The swelling went down a good deal over night. The next day I went for a run. After about 3 miles my arm was huge. The 3 miles back were not pleasant. The swelling wouldn’t go back down, so I went back to urgent care. They immediately sent me to the ER, since I showed signs of compartment syndrome.

    At the ER, they thought I might have a torn bicep tendon. Ultrasound found clots in my basilic, axillary, and subclavian veins. One of the ER doctors said that he’s heard of this thing happening in volleyball players. . . . They put me on Lovenox injections as a bridge to rat poison (aka ‘Warfarin’). I was on Lovenox for about 10 days before my INR got above 2.

    My primary didn’t look at my arm. He just said: “Standard treatment is 6 months of anticoagulants. If it happens again, you are on Warfarin for life.” That’s about it.

    I started doing some research. Luckily I found a very helpful post by Dr. Prewitt on the Starting Strength forum from back in 2009. The thread is here:

    http://startingstrength.com/resources/forum/archive/index.php/t-13346.html

    This thread noted that upper extremity (UE) DVTs are more common in athletes that you might expect. I started doing more research. One of the best things on the topic for the uninitiated is now about 12 years old. It’s an article in Circulation by Joffe and Goldhaber. You can read it here:

    http://circ.ahajournals.org/content/106/14/1874.full

    They advocate a more aggressive approach to treatment in the young and active. They push for thrombolysis early. Unfortunately, I didn’t get this treatment at the ER. I didn’t know who to talk to until it was too late. After two weeks, I found an Interventional Radiologist (IR) who does lots of this. But since my swelling had gone way down after about 18 days and I’m out of the 14 day window, he didn’t think it was worth the risk of internal bleeding and a hospital stay. (I started wearing a basketball sleeve after two weeks. It helps. The IR gave me a script for a stronger compression sleeve. I haven’t picked it up yet.)

    The benefits of thrombolysis are still unclear. The most recent literature survey suggests that early lysis reduces the rate of post thrombotic syndrome to 40% from 60% or higher if you are just treated with anticoagulation. There is a helpful literature review here, but most of it is on lower extremity DVTs:

    http://www.bibliotecacochrane.com/pdf/CD002783.pdf

    If you follow the footnotes and do some research, you’ll see that you can read the bulk of the literature on this topic in a long weekend. There isn’t very much. Most of it is freely available without a university library. And most of it is pretty easy to understand. (There isn’t much statistics and what there is you can learn quickly if you’d like. Since most of the literature is on case studies, there isn’t much math. Study the anatomy and learn the jargon. You don’t have to learn much. But you will notice that the terminology is not standard. . . .)

    I have a great hematologist and am still waiting on some of my blood work. I also have an appointment with a cardiologist scheduled. We’ll see.

    The four most important questions are:

    (Q1) What caused this?
    (Q2) Will I recover?
    (Q3) Will this reoccur?
    (Q4) When can I start exercising again?

    Right now I don’t have answers to any of these. (Q1) I fit the profile for Paget-Schroetter Syndrome (PSS) [aka Vascular or Venous Thorasic Outlet Syndrome (TOS)]. I need more tests, but my pulse is obliterated when my arms are out and up, as in a pull up position. . . . The standard bracing maneuver for lifting (shoulders back and down) is in fact one of the tests for TOS — the costoclavicular maneuver. That can’t be good. . . .

    The wikipedia page on TOS is helpful:

    http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome

    I saw an orthopedist who didn’t seem to appreciate the fact that there are non neurological forms of TOS.

    (Q2) The recovery rate is unknown. There are few studies on this. What there is suggests that I have a roughly 65% chance of getting PTS. But the PTS literature tends to treat the condition as binary, when it really comes in degrees. And there seems to be nothing that has checked for limitations on strenuous exercise. The studies tend to focus on largely slothful people and are mainly concerned with whether they can drive to work and bathe. That’s a pretty low bar. I can do that and won’t be very happy if I don’t improve. Even if the collaterals, the secondary routes of venous return, take over, they will not likely be able to handle the job of returning the volume of blood that gets sent to my arms during presses and pullups. Then again, people who are very active before DVTs might do better. But there isn’t any good data to back this up.

    (Q3) The recurrence rate for this seems to be high if it is indeed PSS. Some places are very aggressive here. UCLA, Johns Hopkins, Urschel at Baylor, and others seems to push for a quick decompression. This typically involves a first rib resection and sometimes a scalenectomy (the removal of you anterior and medial scalene muscles). This is pretty extreme stuff. They appear to have great results. And I’ve read about lots of success stories, but it scares me. My IR suggested that I wait for a second occurrence before going under the knife. The complications can be awful — nerve damage, soft tissue injury under the arm, chronic never pain in the neck. . . .

    Washington U has a great page on the surgery:

    http://surgerydept.wustl.edu/TOS_Patients_Venous.aspx

    (Q4) My IR suggests that I avoid all upper body exercise for 6 months! The thinking is that the movements likely caused the problem. If I keep at it, I won’t give the veins the chance to recover. . . . I already lost 10 pounds in muscle from bed rest, so this doesn’t make me very happy. I’m doing leg and core work now. I’m going to start with some long walks and then try running next week. We’ll see. . . .

    Good luck to everyone. It’s sad, but good in a way, to know that there are others facing the same problem. I’ll post back as my treatment progresses.

  7. Beth Posted on January 9, 2015 at 11:24 pm

    Hi Dan,
    My name is Beth and I am 40 years old and just had my second DVT and PE on Dec 11th. I had my first ones at 26 and idiopathicly, no reason except trauma and I did have a Greenfield Filter placed to catch any future clots I could possibly get. Well here I am with the biggest question of I have a filter and that is supposed to stop clots from going to my lungs, so why didn’t it work and why did I almost die on my bathroom floor? I would love to talk with you further, mostly to be able to support one another and help with information from our personal experiences and maybe help one another out! I am having a possible clot in my arm now, having that checked out tomorrow and anyone I can have in my life that truly understand blood clots,PE and the anxiety that comes with it! Please email me at banderson7709@gmail.com
    Thanks Dan and I hope you are feeling well these days.
    Sincerely,
    Beth

  8. Kelly Posted on February 19, 2015 at 6:11 am

    Hi,
    Thank you for all the valuable information. I was recently diagnosed with a DVT in my right Subclavian vein. I was given an Ultrasound in the ER and that is where the diagnosis took place. They gave me a shot of Lovenx and some Wararin pills and sent me home with orders to return to the ER the following day for another injection and pills. With a followup appt with my doctor on Monday. During that appt. I was told that I would be on Warfarin for approx. 6 months and to stay home from work for a week with my arm elevated and that was basically it. I had a bunch of questions which a very few were answered as my time had run out. During the course of the 6 months on Warfarin I was followed up by the Anti – Coagulate Clinic that Kaiser has. They would call me with my blood result tests and adjust as needed. During this time as I researched DVT’s I found out about possibly having an extra rib which could lead to this unexplained DVT, I did request an Xray and my Doctor complied….they found that nothing was wrong in the rib area. I also had to ask for an Ultrasound followup at 6 months to confirm if the DVT was still there or not. Thankfully it appeared as much as they could tell that it was gone although they could not see some areas and the Radiologist even noted twice in his report that it would be nice to have the ER visit Ultrasound copy’s to compare. When I asked my Doctor if I should get them she said it was not necessary. So here I am off the Warfarin and hopefully DVT free but I am worried because I never got any form of testing to see what may of caused this. And there are no more Doctor Appt’s set up. I still feel funny feelings like freezing and swelling in my arm but I do realize that they may residual feelings from the DVT. I should mention that I live in Hawaii where health care is not any where near comparable to the mainland so I am anxious that I am not getting all the testing that I should of. It seems like people that I have seen on various message boards with this have gotten followup testing done to try and get to the bottom of why this DVT formed in the first place. I am a 54 year old women, I had no trauma to that area, I do not exercise like you do but I do walk and Yoga occasionally, I do not smoke nor am I obese so I just dont feel good about not at least trying to find out the cause. Did all of you get followup testing done? Any input would be great 🙂 Thank you!

  9. Grace Posted on June 16, 2015 at 4:59 pm

    Check out this website. Athletes who use their arm in repetitive shoulder actions often see this syndrome

  10. Laura partridge Posted on December 28, 2015 at 4:37 pm

    My son has a slightly different problem as he has been told he has a massive blood clot that runs from his chest to his groun and through the liver which is struggling to cope. On warfarin for life and may need liver transplant in the future. He is only 30 years old! Can anybody help with more information

    • mayne Posted on January 16, 2016 at 2:48 pm

      I have been diagnosed with Budd chiari syndrome,,,,Liver blood clots on zarelto and much better than warfin….been 2 months and no inprovement as per ct scan…..

  11. Gin Posted on January 6, 2016 at 11:31 pm

    I am a 55 year old female in relatively good health, except for a paraesophageal hernia I was suppose to have surgery for yesterday. In August I developed a terrible pain in my upper right arm. It felt like it was on the bone. I did not swell or bruise. My doctor told me it was a muscle strain. Every single night I would wake up in excruciating pain in my entire arm. Only getting out of bed and moving around helped. The arm hurts all the time. In October I asked to see my doctor. Again he told me it was a muscle strain and gave me Motrin. This did not help either. As my surgery was approaching and no relief from the pain and urged my doctor to do more, I couldn’t imagine recuperating from surgery in so much pain. I had a CT scan on a Thursday, Friday I was called and told to get to the ER immediately as I had a blood clot in my right arm. I was sent home with the usual anticoagulants. Just yesterday I’m finally to the correct level. My surgeon postponed my surgery, sorely needed surgery, because of the clot. How could my doctor let me go more than 4 months in so much pain? I was told it’s because I didn’t present with the right symptoms. Still you would think he would try to find the source of my pain. I got a new doctor. I asked her about the treatment and she told me they don’t treat it, they just leave you on medication. Thanks to this article I did find a treatment – thrombolysis. I suggested this to my doctor but have not heard back. Here I was walking around with a clot for 4 months – which could have gone to my lungs at any time. I’m deeply disturbed by my doctors lack of concern.

  12. Gin Posted on January 6, 2016 at 11:33 pm

    Kelly – I have Kaiser as well. I believe they sweep things under the rug rather than spend the money. I’ve experienced this the entire 20 years I have been a member. It is disturbing.

  13. Paula Warke Posted on March 23, 2016 at 6:32 pm

    Hmmm, Dan this is worrying that you never were offered any surgical treatment and lose your radial pulse. I had UEDVT due to TOS diagnosed last September. For 9 months leading up to it I had loads of pain and problems. My shoulder was constantly aching from my neck to my outer shoulder, my muscles were all in knots, I regularly was short of breath (worse when exercising, but could come on any time) and my arm was going “dead” using the mouse at work. What bothered me most was that my sports performance was decreasing despite my efforts to improve. I had to stop rock climbing, and any caving or hiking really aggravated the pain and intermittent swelling/red arm that I had. I noticed my arm was starting to swell a little, then had two long haul flights within two weeks. I think there was already clot, and this significantly worsened it, because I couldn’t lay flat and sleep for all the pain I was in. three weeks later I woke up to my arm a huge red balloon – twice its normal size. This was after four days of hard work and play (I’m a geologist, so often my field work is very physically rigourous and the day before I had been carrying around sample containers and sample bags that weighed over 20kg each – since I’m lazy I was carrying one in each arm to “balance” myself”). This was just after I had been caving one day, swimming in the sea the next day, and had been for a long run (when I first noticed my arm swelling in particular). Doctor took one look and sent me straight to ER where the clot was confirmed with ultrasound and I had emergency radiology procedure to insert catheter into the clot and two days treatment with clot busting drugs, followed with a five day heparin bridge. I had multiple PEs during this time (they were painful, but not as much as my arm was, but weirdly they caused me to cry uncontrollably = vagus nerve response it turns out) and I was referred to a specialist vascular surgeon who is allegedly the UK top man in vascular TOS. He didn’t want to operate – why I still don’t know. But six months later I’m a mess. I cannot cave, rock climb, or even do my job properly. Field work is mostly out unless there is someone to carry things for me. Even working at my desk too long really aggravates my arm – red and puffy now just from using the mouse for one day. I’ve battled with my GP and the vascular surgeon to try to get someone to do SOMETHING to no avail. So sadly I find my self in a position that I now have to circumvent our wonderful NHS and pay for a private second opinion, because I’m pretty sure this isn’t getting better on its on, and my quality of life would be infinitely better if I could even hold up my arm long enough to dry my hair, let alone return to all the outdoor activities I love so much. It is a nightmare, and I feel for anyone who sees their athlete status slipping away. I hope you find some resolution – and I hope I do too.

  14. Paula Warke Posted on March 23, 2016 at 6:34 pm

    I should add that I had three months of physio (private and NHS) and saw an orthopaedic surgeon three days before being admitted to hospital and even he didn’t diagnose properly, so it isn’t a simple or straightforward thing!

  15. Faye Posted on May 10, 2016 at 6:06 pm

    Is it normal for a blood clot to form in your arm after the nurse had administered heperon and an antibiotic at the same time?

  16. Renata Posted on July 6, 2016 at 6:28 pm

    It’s good to read all the stories. Like Dan and Keisha I have deleloped DVT in my left arm and PA (excactly the same symptoms as described). I am 45 year old personal trainer and fitness instructor. After teaching one of my classes my left arm became full and noticiblly bigger. No clear causes for this clot have been found. I need to know why and how this happend. Reading this is helpful.

  17. Jennifer Posted on July 12, 2016 at 3:18 am

    I’m curious if any of the females who’ve had DVT in their arms and who also are athletic have had the doctors simply chalk it up to birth control. That’s what has happened to me. I was on Safyral and I had a blood clot on July 7 in my right arm. My activities leading up to the clot included a long run, heavy gardening activities, and canoeing. I originally thought my swelling and soreness was a torn or strained muscle, but a network of veins showing on my arm and chest led me to believe something else was happening. I went to the ER, and an ultrasound confirmed the clot. I was admitted to the hospital and treated with blood thinners. I’m now on a 90-day course of Xalrelto. I still cannot raise my arm, although it’s only been a few days. I suspect that my activities may have led to the clot rather then my BCP, or maybe it was a combo of both. I’m trying to investigate further but I need a referral to see a hematologist or thoracic specialist. It’s frustrating because the attending physician simply assumed birth control and was unwilling to explore it beyond that. Have you guys and gals regained full functioning of your arms?

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