Three Years of Recovery from a Blood Clot

Three Year Recovery Cover

Three years ago, my life changed forever in ways that I could have never of imagined before that day. I had just kicked off a new marathon training season by running about two miles with my best friend and although I was slightly discouraged (my knee hurt again and I was out of shape), I was looking forward to what was going to be a great season.

I stumbled through the weekend, my supposed-knee injury getting worse by the minute. I had no idea anything was wrong besides overdoing it on my run Saturday. I didn’t know the symptoms of DVT and PE, even though I had heard of both before. By Sunday afternoon, I couldn’t speak in full sentences, couldn’t lay flat and couldn’t walk. By late Sunday night, I was in the ICU of the hospital with an extensive DVT behind my left knee and a PE in my left lung. I was lucky to be alive as it was and nowhere near stable. I was in the worst pain I had ever experienced in my life, I was scared and I had no idea what was happening.

In the coming days, I was diagnosed with antiphospholipid syndrome, an autoimmune blood clotting condition, and eventually placed on blood thinners that were injected into my stomach. I left the hospital with an oxygen tank and a wheelchair. In the coming weeks and then months, I lost my job, many friends, what remained of my self-confidence and any hope I had that things would get better. My relationships with the people that mattered most, mainly my husband, became strained, and I hated myself and my body that had carried me through countless half marathons and physical accomplishments for what it did to me. I sank into a deep depression, uncertain of the future and uncertain that I even wanted to live if this was how the future was going to be. Physically, everything hurt and I was making slower than slow progress; mentally I was incapable of finding any hope in my situation and emotionally I was a shell of the person I had once been. In my eyes, I was unrecognizable. And, I never, ever thought things would change.

And I was wrong. I have come long way in three years of recovery and in the beginning, I thought nothing would ever change. I write this post so that you too may know there is hope for recovery and while we all must adjust to a new normal, that doesn’t mean we cannot make progress, heal, find happiness and become accustomed to the changes we have faced.

Physically

Out of the woods and into…another woods. Critical Care Becomes Longterm Care.

At three years, I consider myself physically healed, for the most part. In the beginning and for the first six months of recovery, I vividly remember being in constant pain. My leg hurt, my lung hurt and it hurt to do anything. I begged for someone to chop off my leg (I was serious) because it hurt so bad and I could not fathom any relief. I cried all the time as a result of the pain. It was the worst pain I have ever felt in my life, and I never hope to feel it again.

Physically What Has Changed: I am no longer on oxygen and I no longer need a wheelchair, either. The pain in my leg is all but gone on most days, although I feel like I deal with more overall fatigue and pain. I do not have chest pain anymore and if I did, it would concern me enough to visit the ER. My leg still swells and compression stockings are part of my everyday wear (although I have been wearing them about three days a week lately with my doctor’s knowledge). The severe purple and brown discoloration in my leg has decreased immensely, much to my surprise. I get my INR checked via blood draws every 6-8 weeks, compared to twice a week in the beginning. Day to day, I do not get fatigued as easily (for example, walking up the stairs), but I do notice when I get fatigued, it lasts longer and is harder for me to get out of, even with rest. I can sleep for 12 hours and still be exhausted. I take warfarin, aspirin, vitamin k, folic acid, synthroid and progestin-only oral contraceptives, all under advisement of my doctor. My menstrual cycles are incredibly heavy (which my doctor believes is due to my birth control and blood thinner), and I have painful side effects that pretty much keep me sidelined for the duration of my cycle, which is unpredictable in length. I’m not as sensitive to touch as I was in the beginning, and I once again enjoy physical affection and a healthy and regular sex life with my husband. The blood clot in my lung is gone and my lung function has retuned to normal – I am out of shape. I walked a slow 5K (3.1 miles) mid-May and I was able to do so comfortably, without any shortness of breathe or long recovery period. I understand more than ever the importance of movement and blood flow, and I am fortunate enough to have a standing/sitting desk at work so I move up and down throughout the day even when I can’t get away from my desk to take a walk.

Physically What Hasn’t Changed: Antiphospholipid syndrome is, at this time, a lifelong disease and it requires constant monitoring that I have worked into my regular routine. I get regular blood draws, visit my doctor about every three months and see some other doctor (endocrinologist, OBGYN, dentist, eye doctor, etc.) every month. The doctor appointments feel more normal as I have entered a non-critical state of my care and do not require constant monitoring. I’m still not back to running (or exercising) regularly, but I have my sites set on training for a half marathon next spring (did I just say that?!). I have leg swelling from time to time, especially at the end of the day; my left (DVT) leg is slightly larger than my right leg and my clot has calcified behind my left knee.

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Lifestyle

Don’t sweat the small stuff…because it is really the big stuff!

Three years ago I lost my new job as a 9-1-1 Dispatcher three months after my PE, and I was completely devastated. I had worked for two long years to get the job, during which time I lost my Mom, my biggest supporter, and I was certain starting a new career was the start of a new life for me. I knew Mom would be proud of me, and I was proud of me too, for the first time in a long time. While I tried my hardest, I just could not learn a new job (especially an intense and stressful one) while also recovering from a PE. I had setback after setback in my recovery, including pleurisy and extreme anxiety, which greatly impaired my decision-making and rationing skills. The medications I was on greatly impacted my ability to sleep, concentrate and remember things. In the end, it just didn’t work out. And, I sank into the worst depression I have ever encountered in my life. I could not see a way out, there was none.

What Has Changed in My Lifestyle: I now have a full-time job back in the non-profit field doing work I succeed at. I never thought that would happen again. It took me 16 months to find full-time employment and the experience of being unemployed and kicked down at every turn was really damaging. Financial instability was the worst. I am working through the damage done to my self-esteem and self-confidence very slowly. It is hard for me to trust not only myself, but also people I do not already know. I am healing, though. I no longer run half marathons or lift weights or visit the gym. I just can’t get back into running since my PE. I prefer to be outside more and choose to take a walk or sit on the porch rather than go to a movie. Nature is more meaningful to me now, and I appreciate things like the park, sunsets, the ocean and the woods more. I crave being near natural things. I dress up – a lot more. Wearing colorful clothing is important to me.

What Hasn’t Changed in My Lifestyle: My diet hasn’t changed tremendously. While total elimination has not worked for me, I try to limit the amount of grains, dairy and sugar I eat. I prefer to eat as close to paleo as I can, but do not follow it exclusively. I still eat regular amounts of vitamin k rich vegetables, I eat cranberries and I drink alcohol in moderation.

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Psychologically and Emotionally

Just because it’s hardly talked about, doesn’t mean it doesn’t exist. The psychological trauma of DVT and PE is real. 

The psychological and emotional impact of a DVT and PE and recovery from these events is the one thing I am not fully prepared to talk about. I am still working through this aspect of recovery, and it still has a strong influence over my life. Talking about it helps. Connecting with others helps. And, because of those things, I will do my best to convey my struggles and progress with you.

What Has Changed Psychologically and Emotionally: Where to begin? It seems like everything has changed for me on this front. I believe that because I am still processing what happened to me, I suffer from a high level of anxiety and fear on a regular basis. I am very quick to get angry and very quick to shut down in the face of personal adversity. My hypervigilance about suffering from another clot has decreased in regards to myself, but I am convinced that everyone around me who has a leg pain or trouble breathing has a DVT or PE, and I recommend they all go to the ER. There is no “could be” for me, it “is” a blood clot. I’ve identified some pretty specific triggers that either make me angry, confrontational or sad and they include, “That’s a bummer,” “This thing/time/place/etc. is different,” and “It’s not that bad.” Because it’s not a bummer (it’s so much more than that), this is no different and it really is that bad in my experience, at least. I have discovered that I need support in being a source of hope, inspiration and information for so many other survivors, and I have discovered that I need to readily seek out that support. For as much anxiety as I have, some things just do not matter anymore. If you don’t like me, I’m okay with that. I have more consequential things to worry about now. I have developed an irrational fear of heights. I am fully aware I could (and I might) die at any second, but I continue living my life.

What Hasn’t Changed Psychologically and Emotionally: I continue to overcome difficult things in my life and persevere through tough times, but I do not embrace positivity, and I do not believe a positive outlook is the key to healing. I am realistic, honest and straightforward and with that, I move forward, but I am not necessarily a positive person all the time.

Recovery is a process. One with a clearly defined beginning and end named then and now. Then being my life before my PE and now being my life since then. There is no middle ground. Time is crucial and matters greatly to me. There is no time to waste. Recovery is difficult, painful, lonely and confusing, but there is hope. Hope that we do not remain the same and as we heal, no matter how little, we progress through the process of time.

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

Comments

  1. Jennifer says

    Thank you for this post. I’m 35, and just two months post-PE, and it is so healing to hear stories from others who really do understand and can relate to what this is like for me.

    I’m so sorry for what you’ve been through, but so thankful that you shared your experience so that I, and I’m sure many others too, can have a better expectation of what the future after PE might be like.

    Prayers for your continued healing!!

    • I am 5 years healing and I made progress but then I fall backwards. Only have a 2 minute walk. I have done rehab but I’m not progressing like I wanted to. I’m 74 and never giving up. On xeralto for life.

  2. Thank you! I finally have a support group! Xo❤️

  3. Words cannot express my deep gratitude for this post. I will be at the three year mark in September and can relate to almost all you shared. Thank you.

  4. Hi Sara,
    I too have been improving. Because I am doing a lot of things to naturally thin my blood, I decided to stop coumadin last week. Yes, I am a little nervous about this, but am making sure I don’t sit too long without getting up and walking around. I would suggest you get off artificial thyroid medication. It only treats T-4. Try Armour thyroid or Westhyroid or Naturthyroid. Those treat T-3. Check your temperature. Find out about Wilson’s Temperature Syndrome, (Dr. Wilson.) Get your vitamin B12 and folic acid levels checked. I recently had my levels checked and found I was low in vitamin B12. I now take methylated B12 and I am able to absorb this vital vitamin. I also have an inherited blood clotting disorder. I have the MTHFR mutant gene. Consider taking bio-identical hormones. I suggest looking for a doctor who is a member of the Academy of Anti-aging, Regenerative Diseases. This could make a HUGE difference in your life. Luckily, my partner and I found one in our area. He is saving our lives. My partner also has the MTHFR gene and is being treated for the beginning stages of Parkinson’s Disease. As you know, when you don’t have your health, your life is greatly diminished. (the other Betsy – 71 years old.)

  5. Nicole P says

    June 18th of this year is my 2 year anniversary of my surgery for a massive saddle PE and right heart failure because of it. That was by far the most difficult thing I have ever gone through in my life. And I believe it will always be the most difficult thing; I have a lot to experience yet; I am turning 26 this year and am so thankful I get to celebrate yet another birthday! I found out I have 2 different blood clotting disorders: prothrombin 20210a gene mutation and protein c deficiency. Unfortunately warfarin did not work for me and I started taking xarelto which has been a lifesaver for me and has been so fantastic I would never go back to warfarin. Similarly to you I had other lung complications after my surgery. I was out of the hospital 4 days after my surgery and within 48 hours I was back in the ER and found out I had developed pneumonia. To this day I fully believe that whenever it hurts just a little bit, or I even feel anything at all, when taking deep breath it is due to lung scarring.

    After experiencing this in my life I have definitely began to appreciate the little things and am thankful for every day that I get to spend on Earth with my loved ones. I really hope you do not have to experience anything like that again!

  6. Angela Massey says

    I have survived 6 DVTs and 4 PEs, BG the grace of GOD. Does anyone else try to keep there blood under control by natural methods instead of blood thinners?

    • Hi Angela,
      I believe it is important to get away from all chemicals if you can. Last week I stopped taking coumadin. I am drinking lots of water. Start with two very large glasses as soon as you get up. I am taking Natokinesse, Arginine, Berberine, horsechestnut. I sleep on a grounding pad, which helps thin the blood. I use an infrared sauna almost every day. Get your vitamin B12 levels checked. Because I have the MTHFR gene which is associated with Factor IV Leiden, heart disease, autoimmune disease, Parkinson’s and Alzheimer’s, I was not absorbing vitamin B12, which is crucial. I now take a methylated form of B12, which I believe will help so many people as well as me.Traditional doctors know nothing about this. It is so bloomn’ easy! You can find it online. It is important to get exercise, water, water, water and a healthy, organic diet. Cut the sugar down to a little bit once a week. Get off artificial hormones and thyroid medication. (My partner was able to get off all his heart medications: statins, (No one should be taking statins,) and blood pressure medications. It works!

      When I travel long distances by plane, I will wear support stockings and take my grounding pad with me, as well as my supplements.

    • I have used Nattokinase but never gone off some sort of meds. No doctor has been yet willing to try.

  7. Thank you Sara, for your post. I can relate to many of the points that you addressed. It has been 10 months since I was hospitalized for an extensive DVT in my left leg that extended from my ankle to my groin. A follow-up ultrasound four months ago revealed that I still have a permanent DVT in my groin, around which the external iliac vein has contracted. I have post thrombotic syndrome and my left leg is slightly larger than my right leg. Like you, I lost my job and all of my friends; it seems that they do not understand why my recovery is taking so long. The lonliness and isolation cause me to feel depressed most days. I live with fear and anxiety daily. I worry that I will have another DVT. I worry that I may have a fatal bleeding event from the anticoagulant that I am taking. I worry that I will not be able to find employment before my savings account is exhausted. I worry that I will never again feel healthy and strong and have a productive, rewarding life.

    In addition to Xarelto, I take a number of supplements to reduce fibrinogen and clear the debris left in my veins by the blood clots including serrapeptase, nattokinase, lumbrokinase and turmeric.

    I agree with you that having a DVT or a PE is not a “bummer;” it’s so much more than that.

    • Thanks for your story! Sounds so familiar. Would love to hear more!

    • Hi Deborah my name is Deb and i am from the UK and totally understand how you are feeling. I am also 10 months into my post PE i had a very large unprovoked Saddle embolism on both lungs. I am now on xarelto 20mg for the rest of my life as i am at a very high risk of getting another clot i am 54 years old. I still get regular chest pain which reduces me to tears and often feel exhausted. My heart echo showed no damage but i worry about damage to my lungs and do not know how to find out about this. I also worry about a major bleed and if i will ever work again. I just wanted to say to you we have survived this and need to keep moving forwards. I take one day at a time and have a wonderful mental health nurse who has helped me so much to get threw this. Surround yourself with people who care and support you and stay in touch with this wonderful website that offers so much information and help. Hugs and blessings.

    • what is your daily dose of xarelto? at what dosage do you take nattokinase and how do you monitor it with taking the xarelto at the same time?

    • what is your daily dosage of xarelto and what dosage of natto do you take daily? how do you control the amount of natto with the xarelto?

    • How are you doing now???

    • Susannah says

      Deborah I feel the same way right now.. alone and struggling to stay afloat with all of this. people don’t get how much this impacts our lives and what the chronic pain feels like.

    • I thought I’d like to try the serrapeptase. I to am in my 5th year trying to recover but I have copd also. It caused me to have ptsd. I was in an induced coma for a week while they injected held in in me. I guess I was a fighter

  8. You. Are. Awesome. This really captures the highs and lows of the last three years so well, Sara. You really are amazing 🙂

    • Thank you so much for what you said and for stopping by! <3 I know you have been with me on this journey and for that, I am grateful.

  9. I was on synthroid for years. It does no good. The tsh levels your regular doctor looks at are incomplete. There are many other tests that need to be done to determine if you are hypothyroid. See a functional MD and get a prescription for armour thyroid, or westhroid or naturthroid thyroid. Take iodine supplementation. ( I take 100 mg/day).Stay away from synthetic hormones, (use bio-identical).Drink plenty of water , eat organic, healthy foods and continue getting exercise. Deep breathing is very helpful.

  10. Two months out from a bilateral PE and this Blog is so helpful and healing. I am suffering every day from the trauma, pain, , loneliness and disability of all this. I was on Nattokinase and clotted and am now a Xarelto lifer but my Hemo had never heard of Nattokinase and could not advise me what to do… My heart may be damaged, and my hip was destroyed by this clot. I feel my life is over and none of my family care what nearly happened to me and what is still happening to me.. It is nice to be with people that understand.

  11. Thanks for being so honest about the emotional aspects of your blood clot.

    I did not feel validated until I saw a psychologist. My regular doctor just poo pooed the idea that I might be emotionally upset. The psychologist said it is very common to have depression or other symptoms right after a blood clot or heart attack. He told me that they do not really understand why this is so. Most people who have clots suffer more emotional problems than some people who are diagnosed with terminal cancer.

    I must say this suprised me.

  12. Sara it sounds like your telling my story, to a T!! Ten plus yes.and still having problems, especially with my breathing. My lungs are so scarred from the multiple clots that I had. It was the worst time of my life, I almost died!! I had so many PEs that it was impossible to tell. They told my husband it was so bad that they couldn’t believe that he hadn’t found me dead in bed,or just period! The anxiety is an everyday struggle for me. And I’m always waiting for it to happen again. I have changed my diet dramatically for the better but I’m so tired of all the meds,but I am off the blood thinners. I see a phycologists and phyco Dr.on a regular basis, it never ends for me. One day at a time, life is short, Live it!?

  13. Hearing all of you that have experienced this condition doesn’t really make me feel better. I guess I just want my old pre DVT/PE life back. I’m a 54 year old bodybuilder at 265lbs that suffered from a bilateral DVT and PE in my right lung. Before this I was deadlifting over 500lbs and leg pressing over 800lbs. I was at the national/pro level in this sport. Last February I experienced a 14 inch blood clot in my left leg. The surgeons placed a IVC filter to prevent a PE. The filter was placed improperly and I ended up with a PE anyway. Within three days of the filter placement I had another clot in my right leg from ankle to groin. I will be going back for the third time to UCLA to have the clots cleared. Hopefully this will be the last time. I’m currently on Eliquis 5 mg 2x per day. I’m also taking Serrapeptase and Nattokinase 4x per day on an empty stomach to hopefully dissolve existing clots. Swelling has improved but still present. Not sure if my life will ever be the same. This has been a very frustrating and depressing condition. I’ve been an extreme athlete my whole life and haven’t learned how to cope with limitations. I just hope for the best and try to push on. Best of luck to all of you.

    • I had DVTs and bilateral PE about 3 years ago. I have Factor IV Leiden and have been pharmaceutical free for about a year and a half. I have had doctors tell me they know of no natural way to thin the blood. (If they don’t know about it, it doesn’t exist.) I am taking 2,000 Fu Nattokinese twice a day, and am happy to report blood stains on the cotton ball after blood has been drawn for tests. That did not happen with coumadin, even when it was well regulated. It’s very scary to initially go off coumadin or other drugs recommended by conventional doctors; it takes a lot of courage. I also make sure to stay hydrated. I pay close attention to my hydration, and if I feel a little pain in one of my legs, that feels like the start of a clot, I take more natto and drink more water. I will not take any pharmaceuticals. I am a healthy, active 73 year old woman.

  14. Susannah says

    Joseph, if you’re still out there.. when you said you were going to UCLA to clear the clots was this using CDT? I’m an athletic 52 year old woman who had a “minor” arthroscopic knee surgery, got my complaints dismissed 2x by the ortho and ended up with full bore clots in all my major deep veins in my left leg. I just saw an IR today at UCSF.. they want to wait until I’m 6 months out and do a cat scan and ultrasound to see if I am a candidate for intervention.. I’m 5 months but my last scan showed occlusions in my femoral, common femoral and external iliac. I’m getting anxious about getting help. I wish they had done TPA on me from the beginning.. my clot ran my whole thigh into my groin and behind my calf. Did you have something like this condition and CDT to clear the clots? Like you I just want my life back.. my leg hurts all the time.. I am finding the most relief swimming and swim up to 3000 yards. walking is hard but I do a lot as well.. I use to race bikes.. have raced paddleboards and swum open water.. not ready to be disabled.

    • Susannah,
      It has been a long time since I checked in with this forum and I just saw your post of May 24th and want to respond to you. I want to share with you and everyone else reading this forum that it is possible to perform thrombolysis on chronic DVTs that are years old. Unfortunately, many physicians are so busy caring for their patients that they don’t have time to keep up with developments in clinical research and hospitals are very slow to modify their protocols for treating DVT patients. Many hospitals refuse to attempt thrombolysis with TPA unless the DVT has traveled to the brain, the heart or a lung; i.e., they refuse to use TPA unless the DVT is life threatening.
      I was hospitalized September 14, 2014 for an extensive DVT in my left leg that extended from my ankle to my groin. According to protocol, the hospital refused to attempt thrombolysis with TPA because the DVT in my leg was not considered life threatening. A follow-up ultrasound in February 2015 confirmed I had developed post thrombotic syndrome and had chronic DVTs in my external iliac vein, common iliac vein and common femoral vein.
      I was not willing to live the rest of my life with post thrombotic syndrom and on June 28, 2016, I was admitted to Holy Name Medical Center in Teaneck, New Jersey for mechanical/pharmalogical thrombolysis with the EKOS System plus TPA by Doctor Kevin Herman. The EKOS System uses ultrasonic energy to help the TPA penetrate the blood clots so that only one quarter the usual amount of TPA is necessary. This combined approach greatly reduces the risk of unwanted bleeding and enables very hardened years old DVTs to be lysed. The EKOS System was kept in place via a catheter in my leg for 24 hours, together with a TPA drip at one quarter the usual amount. A follow-up venagram the next day confimed that ALL of the thrombotic material had been cleared from my veins — ALL DVTs were dissolved.
      I was a participant in the ACCESS PTS Chronic Deep Vein Thrombosis Study; however, this combined treatment is FDA approved and is performed by some physicians as routine, standard of care and is covered by most medical insurance. If you go to http://www.chronicdvtstudy.com, you can read about this combined treatment and access a link to find physicians who utilize it as their standard of care for both acute DVTs and chronic DVTs. You can also be referred to a physician by contacting Sally Ludeman, Manager, Clinical Projects, EKOS Corporation: ekosclinical@ekoscorp.com.
      I had an advantage that most DVT patients don’t have; I have worked on anti-thrombosis clinical trials for more than 20 years so I knew were to look for a treatment for chronic DVTs. I began my search at http://www.ClinicalTrials.gov.

      • Susannah says

        thank you.. so I saw a vascular surgeon who said I may have May Thurner and there is no reason to wait but I don’t think he does EKOS. he mentioned they may do an overnight thromobolysis but that once I get the stent placed my clots should continue to dissolve.. do you know? I feel so anxious with all the wait and see crap.. Stanford has taken 4 weeks to get back to me.. I had uploaded images to their site..said they’d call to schedule, called and they said they needed a referral.. waited.. then they said they needed images and I told them they had them for 3 weeks.. arghh.. they said they were reviewing them but then my PCP office called and they said they were waiting for a venogram.. never was told. UCSF had me waiting until 6/14 for scan. I am now having one on 6/6.
        I’ve been in contact with Dr. Garcia back east but I think my Aetna will not cover his procedure as it is experimental. I wish the clinical trails were going on..

        • Susannah:
          Please contact EKOS at ekosclinical@ekoscorp.com to be referred to a physician near to where you live. The EKOS system is NOT experimental; rather, it is FDA approved and is being used as routine, standard of care treatment to thrombolyze acute as well as chronic DVTs. The clinical trial that I participated in was a post-marketing trial, meaning that the EKOS system was already FDA approved at that time. I have Aetna insurance and my entire three day hospital stay for the thrombolysis was covered by my Aetna insurance. My total cost was less than $400.00.

          • Susannah says

            I’m having the cat scan on Tuesday with a vascular surgeon here. it says ultrasound thrombolysis but he said he didn’t do EKOS so I’m confused. I contacted IR at UCLA hospital and am going to send my results to a Dr. Stephen Kee who is on the list. there is no one on the list in the bay area.. I live in Oakland.

            It’s great to hear you are doing well. It gives me hope.

          • Susannah says

            ok I’m emailing to see if there’s something nearer me I’m missing..

        • Susannah says

          I’ve emailed ekosclinical@ekoscorp.com 2 times without response. I had Dr. Kee call me back and then we were suppose to talk and he hasn’t called me but I know he was going out of town. I’m waiting to hear from the vascular surgeon I saw here on the results of my cat scan with contrast and an abdominal ultrasound to check for May Thurner’s. I understand the doctor here will do ultrasound but in a less aggressive manner and for a shorter time and then I’d be stented. I am still not sure which is the best.. I want the longest term benefit.

          • Susannah,
            It is not correct that once you get the stent placed, your clots should continue to dissolve. Your clots are six months old and rock-hard, at this point, so opening your veins with stents will do nothing to help them to dissolve. A more aggressive treatment which combines a mechanical/surgical method together with TPA is needed to dissolve the clots. Placing the stents will help to improve your venous blood flow, but it will not dissolve the clots.
            I will contact EKOS for you, since I have a relationship with them.

          • Susannah says

            thank you .. .I was trying to see if a Dr. Kuo at Stanford does EKOS. I have a follow up with UCSF on Wednesday but he does not do any thrombolysis either. I am so frustrated by this whole fight to get help. It is really making my anxiety high and I am going in and out of depression.

      • Susannah says

        I see you have the procedure nearly a year after being diagnosed with the occlusions and PTS.. how are you today? I am devastated by this.. my knee which I had arthroscopy on is not rehabbed .. this has been a vortex of shiiiite..

        • Susannah,
          I had the mechanical/pharmacological thrombolysis with the EKOS system plus TPA in June 2016 which was one year and nine months after the ultrasound and diagnosis of my acute and very extensive DVTs in September 2014. Dr. Herman said the thrombotic material was like hardened cement in my veins, but the EKOS system enabled the TPA to penetrate the very hardened clots and dissolve all of them. After the procedure, I had follow-up appointments at 1 month, 3 months and 6 months at which ultrasound scans were done to confirm that my veins were still clear and all was well. I will have my last follow-up appointment on June 26, 2017 which is one year after the procedure. I am much more physically active now, after the mechanical/pharmacological thrombolysis with the EKOS system plus TPA. I have my life back and I have returned to my work in cardiovascular and anti-thrombosis clinical trials.

      • Susannah says

        it sounds like I have a similar situation with external iliac, common femoral and femoral occluded. did you end up having May Thurner’s? did you have to have stents put in? sorry I forgot to ask that before..

        • Susannah,
          I do not have May Thurner’s Syndrome. I did have stents placed in my external iliac vein because this vein had some scarring and constriction that occurred during the one year and nine months prior to the thrombolysis with the EKOS system plus TPA. This is the reason that I keep urging you not to wait; permanent damage to the veins can result.

          • I posted I tried emailing the ekos address and no response. I’m frustrated. I am not waiting.. I had my cat scan on June 6 and have had to call the doctor’s 3 times.. I called again today. the receptionist said they’d get back to me once the doctor reviewed the images and let me know “if” they wanted to see me.

          • Susannah,
            I feel your pain and I believe what you are saying. The apathetic attitude of your doctors is disgraceful; they act as if a leg doesn’t matter, as if it doesn’t matter that you will have permanent damage to your leg veins.

          • Susannah says

            Deborah… I get it.. I’ve struggled and struggled to get timely help.. Stanford never scheduled me .. been waiting since 5/5. UCSF finally wants to schedule me.. another vascular doc I really like is trying to get me in July 3. They are both saying EKOS is not indicated. My illiac vein is scared down to a thread..I have May Thurner’s.. they’ll get through it..balloon it and stent it. I understand you’re doing better and your procedure was delayed quite a bit longer..so I should have hope to come out with better venous return and relief of symptoms… getting anxious. This has been a battle.

            To add to all my stress..I had to see my Ortho for sdi continuation..I called him out on not listening and he gaslighted me with some revisionist bs. Denied my discussion of my mom’s clot and claimed my first call 2 days post surgery was not about my calf..says I was complaining about chest pain due to Tramadol..I clearly remember the conversation and removing my Ted hose to see if the calf was hot and red..I even had someone standing nearby. Re-traumatized by him..hate that he’s so slimy. I can’t take the energy to sue him unless I’m disabled for life..I’d love to..

            Anyhow..just like to know how your year scan went..how your leg is.. wondering if you are on aspirin or thinners after this point..

            Thanks and hopeful to hear back

          • Susannah says

            Oh scan is tomorrow for you.. please update

          • Susannah says

            2 weeks ago I had an intervention that went really well..2 stents were placed after angioget, wire and ballooning…my collaterals immediately obliterated when the illiac and external illiac opened… working on recovery but the difference is amazing already!!!!

          • Susannah,
            I am so happy that you have had the procedure and have experienced such an improvement! I am still confounded though, that the doctors made you wait so long; they could have done the procedure six months ago.
            As for me, my final post procedure follow-up visit on June 26th went well. Going forward, I will continue on Xarelto and have annual ultrasound scans, for monitoring purposes. I don’t ever want to experience another DVT.
            I hope that you are able to enjoy the rest of your summer 🙂
            Cheers!
            Deborah

      • I had the Ekos procedure at UCLA two weeks ago – the DVT (from ankle to upper thigh) was around two months old. They were able to get through, so in that sense it was a success, but so far things have been worse than before. For those who had the procedure, did things get worse before they got better? I need some encouragement. I also have May-Thurner, so I am really setting by hopes on improvement when my Iliac vein is stented.

  15. Susannah says

    re: losing your jobs due to this..

    don’t people get disability for this .. I’m out on it right now from my arthroscopy due to the complication of the dvt it was extended. The doctor I saw today said he would update my PCP about my disability as I have an occlusion in my groin and my job is 100% weight bearing. I don’t want to lose my job but I don’t want to be on my feet 8 hours a day as I am right now.. I will break down.. I have to elevate every hour or so.. also can’t sit for long without pain.. I feel like goldilocks.. my life is on a short leash.. I don’t go far from home so I can lie down.. out for walks and swimming .. out to eat but a movie would be too much..

    • Susannah,
      Please don’t wait! Please go to http://www.chronicdvtstudy.com and be referred to a physician in your area who is skilled in mechanical/pharmacological thrombolysis with the EKOS System plus TPA. I understand that at UCSF, they want to wait until 6 months and do a CAT scan and ultrasound to evaluate you as a candidate for intervention; however, it is essential to perform the intervention as quickly as possible to restore normal blood flow through the veins so as to prevent further permanent damage to the veins. Obstructed blood flow sets up a hypertensive situation in the veins and this increased blood pressure is what causes permanent damage inside the veins and results in chronic post-thrombotic syndrome. The increased blood pressure causes damage to the valves of the veins, resulting in reflux and scarring of the walls of the veins, resulting in loss of elasticity and constriction of the veins. If you postpone an intervention to remove the DVT, you will likely cause more damage to your veins.

      • Susannah says

        I looked up my SSDI benefit and it is is a measly 1500 a month.. I don’t want to even think about going there. I want my freaking leg back. I hate my ortho right now but I need to rehab this knee after I get some intervention. He should have sent me to the ER on day 2 .. or day 8. I’ll never forgive him saying “you just would have been on thinners” in my post ER visit. EVER. now I feel like he won’t touch me or help me, but frankly I can’t see getting this intervention and going back to work right away after all this shiiite. my knee is not rehabbed. I need him to give me at least 6 weeks of PT after this.. this feels like the ultimate cluster F. I went from a person who takes 0 meds, sees doctors very little, had a first time surgery outside of wisdom teeth and has never been hospitalized to this nightmare. I appreciate your feedback on this.. I am so anxious about getting help and all these doctors making me wait and see are pissing me off. my common femoral, femoral and external iliac are occluded.

  16. Thank you for this site. It’s encouraging to hear the stories from others and know that you’re not alone. It was October 11, 2015 for me so I’m nearly three years out. My leg still hurts. I still have little stamina for exercise and can’t keep my heart rate down even when I’m just walking. The physical limitations are so frustrating for me. I’m only 38–I want to play with my kids! I have amazing family support but my doctor acts like I should be completely fine. She makes me feel like a hypochondriac every time I see her. What kind of follow up testing do most people have for ongoing symptoms?

  17. My daughter passed away from lung blood clots . she was42.
    My was not hereditary . it was from being dehydrated. From the flu twice. Xeralto is my life saver

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