Dealing with Depression

Ever since you’ve had your blood clot, you’ve been feeling a little down. Maybe you don’t enjoy the activities you once did (either because you can’t do them or don’t feel up to it), you feel alone, are easily discouraged, emotionally charged and cry or react at the drop of a hat – literally (don’t worry, I cried for several hours over spilling spaghetti sauce in the kitchen once shortly after my PE). Maybe you feel hopeless, like no one cares and even wonder if life’s going to be like this from now on, why not give up? It hurts to move, get up, lie down or even breathe. No wonder you’re depressed when you spell it all out, right? Dealing with depression after a blood clot is not uncommon, yet, it is uncommonly talked about.

Experiencing a DVT or PE, brings a lot to cope with, both physically and emotionally. Clot Connect, an organization seeking to increase knowledge of blood clots, clotting disorders and anticoagulation by providing education and support resources for patients and health care professionals states, “It is normal to feel shock, anxiety and fear following the diagnosis of a blood clot”  on their FAQ page. Let that sink it for a moment before reading on. You are normal for feeling this way.

In fact, it has been noted that high levels of anxiety, depression and psychological stress are reported among patients with DVT and/or PE, but very little research has been done regarding the psychological implications of surviving a DVT and/or PE. The anxiety, fear and depression that can be quite common after a blood clot can be attributed to many factors including, but not limited to the fact that a patient survived a life-threatening event, limited mobility and daily function, the lifestyle impact of being placed on a long-term blood thinner, decrease in quality of life, and fear of a clot returning (which can happen). There are few resources available regarding the emotional and psychological concerns that accompany a PE and DVT. I have included the ones I know of here:

The National Center for Biotechnology (NCBI) information also notes that “although thrombosis is rare in the young, [it] can cause severe psychological distress that influences the quality of life and the coping capacities of patients [Source].”

If you are feeling depressed, anxious, scared or unsure about all that has happened to you during and since your DVT and/or PE, here are my top tips for dealing with depression.

Tips to Help You Recover From the Emotional Effects of DVT and PE
  • Remember you are not alone. Blood clots are a common medical condition. It is estimated that 900,000 people in the United States develop DVT and PE each year [Source].
  • Talk to your doctor.  He or she may be able to direct you to other resources or provide anti-anxiety or anti-depressants. Even if you do not think your primary physician will understand your concerns about depression, still inform him or her about your feelings. It may also be beneficial to seek out a referral to a counselor or psychologist as an additional support for what you are going through. Do not be afraid to ask for help!
  • Understand post-thrombotic syndrome and do what you can to prevent it.  One of the long-term, and potentially upsetting, effects of DVT is post-thrombotic syndrome (PTS) and it is not in your head. Find out more about PTS, including the emotional effects and how to help prevent it.
  • Seek out a support group. Finding support is important when dealing with recovery from a blood clot. While some in-person support groups do exist (ask your doctor if there are any near you), they are rare. You can join BCRN’s private support group on Facebook. Also, visit here to find even more support groups.
  • Learn about your condition. What you went through was a significant and even life-changing event. Learning about what happened to you through reading, relating to others and talking to your doctor and others can help you to feel empowered, calm and knowledgeable about what did happen and what your recovery might entail. Don’t know where to start? The list of resources on the left-hand column of this page is a great place!
  • Know that your condition is treatable and manageable. Be confident in your treatment plan by discussing it with your doctor and any trusted friends or family members you may have. Connect with other survivors who have been where you are now.
  • Write your feelings down. A daily or weekly journal of how you felt, what you did, progress you made or challenges you faced can help you to see how far you really have come over time. Writing, even if it is only a few sentences a day to express a particular emotion or event, is very helpful in releasing your feelings and giving value to them. Consider writing down and sharing your entire blood clot story. What you feel is important and sometimes it just feels good to get it out of your head.
  • Have patience with yourself. Recovery takes a long time and it’s not easy. Know what you are okay, you are doing what you can and you are right where you need to be. Something as simple as walking to the bathroom or making a sandwich is enough for one day. If you are struggling to get back to where you were pre-blood clot physically and emotionally, remember it takes time and it is different for everyone.
  • Be kind to yourself. You are loved. You have been though a lot and your body and mind have been faced with a catastrophic incident. It is okay to feel the way you do from time to time and it will take some time to adjust.

Please remember, if you are facing thoughts of self-harm or suicide, please call 911 or seek other help (such as a hospital emergency room or doctor’s care) immediately.

If you are thinking of suicide, The National Suicide Prevention Lifeline is a 24-hour, toll-free, confidential suicide prevention hotline available to anyone in suicidal crisis or emotional distress.

Remember, even if it seems hopeless, suicide is not the answer.

Share your story. Have you felt depressed since your blood clot? How have you dealt with depression?

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

 

Comments

  1. Hi Sara,
    Thanks for sharing that blog post with us all. One thing I’d like to add is seek the advice of a psychologist. I had a blood clot the length of my leg 3 years ago which was diagnosed in the middle of Argentina due to a crazy mix of a high altitude trek on the inca trail, food poisoning and a really bad contraceptive pill. I don’t have to be on thinners every day, but I’m in a stocking for the rest of my life (I’m 28 years of age), have Post Thrombotic Syndrome and I do need injections to fly over 5 hours. I didn’t realise how much I was struggling with the memories and the fear surrounding how I got DVT….I couldn’t work out why I felt like I wasn’t as sociable as before the event, felt like I couldn’t hold a long conversation, and was just ridiculously stressed all the time. I finally got my act together and went to see a psych and was diagnosed with Post Traumatic Stress Disorder. I went through the treatment around 6 months ago and can honestly say that it is the best thing I have ever done for myself. There are still lingering fear and anxiety issues that I’ll continue to work on, but I feel 100% better than I was earlier this year.

    • Hello Caitlyn. Thank you so much for stopping by and reading the post, and also for taking the time to share what happened to you. I really value what you have to say and think it is extremely important.

      I have heard of people facing PTSD after a blood clot, but like so many other things, I don’t think it is widely talked about or recognized. I do, however, think it is so important to put out there for others who may be struggling.

      Thank you, Caitlyn. Wishing you the best from here on out. And by the way, completely awesome that you hiked an Inca trail. Wow!

  2. Hello Sara, at last I have found this website. I have felt absolutely alone since I had my large Pulmonary Embolism 4 years ago. I still have severe pain at the site in which my initial pain started before I knew I was having a PE. I waited over 24 hours with significant pain and difficulty breathing before I sought treatment.I spent five nights in the hospital, and my second night after being treated is when I endured the most pain, it was truly unbearable, I was praying for death. I still have NOT been able to find answers to some of my questions. Above in your post I read about Post Throbmbolic Syndrome for a DVT. Where can I find more detailed information for Post PE Syndrome? I have read quite a few articles for post thrombolic and am frustrated of the lack of material for what I suffer from on a daily basis. I have been seeing a psychologist for a couple of months now, and she is quite sure that I do have PTSD. I am so appreciating the mental health aspect that I have just read above. I also take a narcotic daily to help relieve some of the pain upon breathing and deep breathing. I am also being treated for major depressive disorder. This has completely turned my life upside down. A couple of general medical doctors I have gone to look at me like I am crazy or just exaggerating my pain. The couple of responses that I have gotten from doctors is, “well I have never heard of anyone having this much pain years after a PE. I have always been a hard worker, have a master’s degree, loved my job…….to this past year of having to resign from my dream job, because of the chronic pain upon exertion of daily activities. I will continue to explore this website, but would so appreciate any information you could provide so I may become more familiar with blood clots. Thank you for any time you may be able to throw my way!!

    • Hello Dawn and welcome! I am so glad you found this website too. Please excuse all of my late replies and getting back to you. Thank you so much for writing!

      My heart really goes out to you, hearing your story, Dawn. You and I have similar stories and please, please know you are not alone. I was in severe pain during my PE and I too prayed for death. I had never felt that kind of pain or feeling before. I remember my leg hurt so bad, I just wanted them to cut it off, if that would stop the pain. I did not care if I was an avid runner and my legs were important to me. I just wanted my pain to stop.

      PTS and PTSD sound like some things you might be experiencing. Both can be common after such a traumatic incident and again, my heart goes out to you. Are you wearing compression stockings? I am two years post-PE and compression stockings have helped my pain to some extent. I have found the pain has lessened over the last few months greatly, and in terms of leg pain, I seem to have more good days than bad days.

      Here is my post on PTS, if you have not seen it – it also offers some additional links about PTS –
      http://bloodclotrecovery.net/post-thrombotic-syndrome-is-not-in-your-head/

      Here are some posts about depression and dealing with DVT/PE, although not about PTSD in particular (which I do hope to write more about), these may help for the time being-
      http://bloodclotrecovery.net/7-steps-to-feel-better-about-yourself/
      http://bloodclotrecovery.net/dealing-with-depression/
      http://bloodclotrecovery.net/get-inspired-7-steps/

      I hope all of these can help in some way. Also be sure to check out the National Blood Clot Alliance at http://stoptheclot.org

      Keep in touch and thank you so much for writing. Welcome!

  3. It was early morning on June 13th when my 26 year old son, Mark, woke up with severe chest pain and difficulty breathing and called me and told me he was on his way to the ER. I was almost there when he called again to say that they already released him (less than a 1.5 hour visit) and he would be waiting outside for me. He was told they found nothing wrong with him and that he was a healthy 26 year old:( Fast forward to June 26th when we took him back to the ER after he called us and told us he passed out at work and went to an Urgent Care Center and they told him to get to the ER right away because of a potential life threatening blood clot:( He was admitted to the hospital on on 26th with a very large DVT, encompassing his entire left leg, and 2 PE’s (one in each lung) were discovered, the CT scan also showed damage (necrosis) to his left lower lobe of his lungs, most likely the result of his chief complaint that took him for help in the first place on June 13th. I can’t even imagine his pain and how scared he was in between the time of his misdiagnosis:and his admittance to the hospital:( I heard later that he told his best friend Chris he feels like he is dying but they told me nothing is wrong:( So sad:( After being released from the hospital in just 2 short days of him being admitted it became our mission to find out why he developed blood clots in the first place since the hospital had no clue and would not draw clotting factors since he had no predisposing factors that would put him at risk., other that he smoked. Then I wrote this letter to William Beaumont Hospital: July 14, 2014

    Dear Mr. Shane M. Cerone:
    Our 26 year old son, Mark A. Shives, sought help at William Beaumont Hospital’s Emergency Center in Royal Oak when he woke up gasping for air accompanied with severe chest pain on the morning of June 13, 2014.

    It is saddening to have to write a letter in attempt to make certain that his experience will not be shared by any others presenting to your facility with chest pain only to be discharged within 2 hours and return 13 days later with an Acute DVT the length of his left leg, 2 PE’s (one in his right upper lobe and the other in his left lower lobe), and with “Focal opacity in the base of the left lower lobe most likely representing Infarction measuring 2.2 x 1.5 x 2.6 cm”. This localized area of dead tissue is most likely the result of his chief complaint upon arrival to the WBH EC on June 13th. And if diagnosed properly, could have been the prevention of 2 other life threating and potentially fatal embolus and very large DVT that he is thankfully recovering from now. In his own words to one of his best friends, “they said nothing is wrong, but I feel like I am dying’. We are sad to know of his helplessness that transpired because of his misdiagnosis.

    Chest pain is a source of major concern and not to be dismissed! As a former EC Registered Nurse, I understand that there are three huge acute life threats that present with chest pain that are Acute MI, Pulmonary Embolism and Aortic Disasters. These life threats represent the three conditions that must always be “ruled out” when the primary complaint is indeed chest pain, even if there is an absence of known risk factors and the patient appears, as your staff stated, ‘healthy’ otherwise.

    Mark returned to WBH EC on the evening of June 26th after a syncopal episode at his employment late that morning followed by a visit to an Urgent care who advised him to proceed to the EC with a possible DVT. Once the complete bilateral lower extremity venous duplex ultrasound was complete, and the definite diagnosis of a very large DVT was confirmed, it truly was unreal the hesitance for the order of the CT scan to diagnose the impending PE’s and necrosis to his left lower lobe. We were told that he would take home a script to schedule his CT on an outpatient basis when he was discharged from WBH. Which was less than 48 hours! Mark’s Registered Nurses that were assigned to him during his stay and the Attending Physician that presented upon his discharge on June 28th were not in agreement with such a short observation period related to the severity of Mark’s case. Further investigation into his stay is being instigated.

    There are other mishap’s that have taken place throughout this entire ordeal. Such as one of the discharge Diagnosis of Leukocytosis, which should have been picked up on his first EC visit that presented elevated WBC’s. Discharge on June 28th show normal WBC count that would discount a diagnosis of Leukocytosis at his time of discharge. Another diagnosis of Cannabis abuse is also listed. Mark admits to recreational use, but in no way has stated that he abuses any drug. Since his diagnosis of Acute DVT and PE’s he has discontinued his tobacco use, as listed in his discharge diagnosis as “Tobacco Abuse”.

    It is our opinion, knowledge, research and experience, that if no cause is apparent for the sudden onset of chest pain and difficulty breathing and a patient is under the age of 45, a diagnosis of possible Thrombophilia and Leukocytosis, at the very least, should have been presented in his discharge diagnosis from his first visit on June 13th, ensuring further prompt assistance and professional care that could of lessened the severity of the present and future state of Mark’s health.

    Additionally, having a letter placed on Mark’s bedside table after his admission to 9N stating he was being treating as an outpatient was certainly not expected, as he was being treated as an admitted patient to WBH with a Heparin IV drip and Dilaudid IV push for pain for the diagnosis of an extremely large DVT and 2 PE’s. The staff we spoke to about this were all in agreement that this additional burden of stress is affecting quality of life and care, this form is just dropped off by a hospital employee with no explanation to the patient. One would think William Beaumont Hospital would strive for better patient relationships and care management than what was exhibited in this instance.

    Thank you in advance for your valuable time and consideration when looking into this important matter.
    Regards,
    Paul and Rhonda Nesbitt
    ***they have yet to respond to my letter other than it would take time to review his stay and that someone would get back with me by the end of August. It is September 22nd and still no response.

    It took 3.5 weeks to get an appointment and gain results from his Hematology appointment and assessment to confirmed he had an increased factor Vlll level. Talk about a sudden life changing event for him! Our next step was to follow up in 3 months to identify if there was any permanent damage that may have occurred to the valves in his left leg because of the severity of the clot, recheck his blood and reevaluate the condition of his lungs.

    Then he committed suicide by hanging on August 18th. I truly believe he was suffering from PTSD, and was so scared…I was and am, too. We spent so much time together these past months as I tried to research all that encompasses, the whole person, diagnosed with such a life changing disorder.

    Thank you for writing this article, it helps make better sense of such a horrible ordeal.

    • Hello Mrs. Nesbitt. I am thankful you are here and deeply sorry for the loss of your beautiful and young son, Mark. I know no words can convey how my heart breaks to hear of this tragedy and the loss of such a young life. My deepest condolences to you and Mark’s surviving family and friends.

      Thank you also for sharing the letter you wrote to the hospital with this community. It is well-written, passionate and conveys what so many others have gone through and maybe cannot express themselves. The reality is, PE’s are SO often misdiagnosed, yes, especially, as you said in younger patients or patients who do not fit the “stereotypical” patient who has a blood clot (older, immobile, etc.).

      I know that I cannot provide adequate comfort for what you must be going through, but please know you are not alone in losing your child as a result of a blood clot. I have conversed with other families, recently, who are in your position – the pain is real, raw and I know how deeply you love your son based on what you have shared here.

      It is my hope for you that the hospital responds and you can find some comfort in the weeks, months and years to come. I appreciate you speaking out about what happened – and it is my hope we can someday change the way people think about and handle blood clots. No one should have to die as a result of this – especially in fear and uncertain about the future. It is my hope you can find peace in your heart that your son’s story may shine a light on someone else going through such a devastating and lonely time.

      My deepest condolences and warmest thoughts to you and yours. Thank you for having the courage to share your’s and Mark’s story. His will not be forgotten by me and others who read it here. Peace to you.

  4. Amy McDonald says:

    Thank you for the wonderful article. It’s been 15 years since I had my “big” clot and I went through most, if not all of the emotions you mentioned. Probably the worst was not knowing if things would get better!
    But for me, they did! I found myself becoming stronger both physically and mentally; determined to do all that I could to get back for my then-young children and my husband. At first, I couldn’t walk to the mailbox at the end of our short driveway, had double-vision, ridiculous muscle pain throughout and so much more. But day by day it all got better!
    Stay strong! I guess I feel like we’ve looked tragedy and bear-death in the eye and we are better for it. Most People don’t understand; that’s ok because there are many who do:)

  5. I’m glad to have found these resources because I have felt so alone and feel like nobody understands me. I was diagnosed with a DVT in September. Since it is my second DVT in that leg and there is a family history, I recently saw a hematologist who said I am on blood thinner for the rest of my life. It is a major life change and I’m having a hard time coping with it to the point of being very depressed that it is affecting my life. I am on anti-depressants and it’s helping. It’s still hard to get out of bed in the morning though. I have a really hard time facing the day.

  6. Other than the fact that this blog let’s us know their are others who feel the same I think it is important to share so people start to be a ware of this devastating problem, I had a freak accident in my house , I fell of my office chair and landed me and the chair in such awkward fall that my pelvis felt on fire from the impact, later at the ER they kept injecting me with pain killers and try to stand me up and I couldn’t move , I was admitted in the hospital for 8 days, I was released with a diagnosis of :blunt trauma to the lumbar, today’s later I faint and fall in my bathroom, half my body in the tub and the other outside the tub. When I was rushed to the hospital they sent me back a few hours later saying I just have pain from the falls, rushed again to the hospital and finally they found clot in my lung and was admitted for 4 days and now I’m on a blood thinner and have all the above symptoms and I’m depressed. But hanging there.

  7. Thanks for this marvelous post, I am glad I detected this web site on yahoo.

  8. I am in remission of both Non Hodgkins &B/C & i was very confident of a positive outcome. My P/E however (multible small ones) have left me in a state of shock. Fear. & depression. I am too frightened to go on trips as i was.. do any of you still travel without fear?? Thanking you.. Joy ps-i am 74

  9. I had a DVT last year June. I’m so worried that the second DVT will come again. My doctor told me it would reoccur again. I still have the post thrombotic Symptoms of DVT, I’m on compression stockings I got varicose veins the time I had my DVT. I just feel sad that it has to reoccur and be on blood thinners for life

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