How to Recover After a Blood Clot

Here are my strategies to help promote health and healing after a blood clot.

After my blood clots, I felt like a fish out of water – literally and figuratively. I could not breathe without an oxygen tank, and I also felt like I had no knowledge of what happened to me, or knowledge of what to expect during my recovery. I had no idea idea how to recover after a blood clot. Those feelings of inadequacy and frustration are some of the most devastating ones that I have ever experienced. I felt like I had lost all control over my life, and I had no idea how to regain control again.

Recovery from blood clots is different for everyone. It can take weeks, months, or years, and some people struggle with complications that last even longer. My recovery was extensive – it took a couple of years – and I will be on anticoagulants long-term to prevent further blood clots. During my recovery, I often wished I had a plan to help me through it. While no singular plan exists for recovering from a blood clot, because of how varied recovery can be from person to person, there are some simple strategies that I have learned that can help you promote healing and recovery in your life.

How to recover after a blood clot.

Here are my nine strategies to help you move through blood clot recovery to a healthy – and hopeful – outcome:

1. Find a doctor who you can trust. One of the first, and most important things, that you can do during your recovery is to find a doctor who you trust. You should have no doubts that your doctor has your best interest in mind and will help you heal. If you don’t have a doctor who you consider a good partner in your care, find a new doctor. It is okay to get a second – or even a third – medical opinion about your health situation.

2. Follow your treatment plan. The standard treatment for blood clots are prescription medications known as anticoagulants, or blood thinners. While these medications don’t actually thin the blood, or dissolve blood clots, they do help to prevent new blood clots from forming, or old blood clots from breaking apart and traveling through the blood stream, which can lead to a life-threatening pulmonary embolism. The most common reason for a repeat blood clot is not following a treatment plan. Take your medication as prescribed and follow your doctor’s instructions. If you have questions, ask. Remember, you should feel comfortable communicating with your doctor at all times.

3. Understand your situation. Blood clot diagnosis, treatment, and recovery can be overwhelming – especially if you don’t know anything about blood clots. Take some time to learn about your situation, whether it be basic information about blood clots, clotting disorders, or even ways to prevent blood clots. Seek out information in books and online, but make certain that they are reputable sources, such as patient advocacy organizations, medical journals and academic publications.

4. Listen to your body. It can be difficult to know what’s normal and what’s not normal during recovery from a blood clot. Always listen to your body and what it might be trying to tell you. If you have new or worsening chest pain, shortness of breath, or headaches, always get in touch with your doctor right away. If you don’t know if what you are experiencing is normal or not, ask your healthcare team to help guide you.

5. Make overall healthy living a priority. Recovery from a blood clot can feel like pure “survival mode,” especially in the beginning, but don’t forget to take care of all aspects of your physical and emotional health. Try to eat healthy, drink plenty of water, move around when you can, sleep, relax, rest, and do a few things that you enjoy, even if they are small activities. If you’re getting ready to start a new eating or exercise plan, be sure to touch base with your doctor before you do.

6. Recognize there may be obstacles. It is often said that healing is not linear, or does not go in a straight line, and that’s true for healing from blood clots too. You will have days when you feel better, and then perhaps worse again. It’s important to understand that your recovery may have ups and downs, but if the hardships start to outweigh your progress, make sure you talk to your healthcare team about it.

7. Connect with your peers. It’s not uncommon for the people closest to you – your family and friends – to be equally confused and overwhelmed by your recovery. In fact, they may not understand what you are going through, and they may not understand that healing can be a lengthy process. It’s important to connect with people who do understand, and who share your experiences. You can find peer support groups online, on Facebook, and sometimes even in person. When searching for support groups, make certain that they are dependable, trustworthy, and expertly moderated.

8. Get professional help if you’re struggling emotionally. Recovery from blood clots is not just physical. It’s not uncommon for people to feel anxious, depressed, isolated, overwhelmed, angry, sad or stressed after a blood clot. Some people experience even more powerful circumstances, like grief and post-traumatic stress disorder. If you’re struggling psychologically after a blood clot, reach out to a professional counselor or psychologist.

9. Always remain hopeful. No matter how overwhelming recovery from a blood clot is, it’s important to remember that recovery is possible. Never give up, and never stop hoping that there will be better days ahead. Celebrate the small improvements and acknowledge the setbacks. In the end, you will emerge, perhaps even with new inspiration for experiencing the things that matter most to you.

Remember, there is no right or wrong way to recover, and your experience may be entirely different from the next person’s experience. It can be a long journey – and there may be some frustrating setbacks – but recovery is possible. Ultimately, most people do recover from blood clots, and they do go on to lead normal lives, even if they have to take long-term anticoagulants to help prevent future blood clots.

Recovery resources to get you started.

Find A Doctor Tool (United States)
World Thrombosis Day (International resources)
More About Blood Clot Treatment
The National Blood Clot Alliance
The American Society of Hematology
The U.S. Centers for Disease Control and Prevention
BCRN’s Online Facebook Support Group
The National Blood Clot Alliance’s Online Support Group (not on Facebook)
How to Get Mental Health Help

There is hope for healing and you are not alone,

 

 


Reader Writes In: What is the scariest part of blood clot recovery for you? What have you learned during recovery that can help other people? Share in the comments below.


Recovery can take a long time and varies for each individual. Read more about what to expect and connect with others who are also recovering.


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Patient Story: Occlusion in the Pathways of Life by Jordan Stonehouse

Stonehouse, Jordan Circle PicIt was spring 2014 in the beautiful state of Michigan, and I was entering the final week of classes before I could apply to the program of my dreams. Following a painful colposcopy procedure that had me bedridden for a few days, I sat for hours and hours studying for final exams. On a Thursday night, I instantly developed a sharp shooting pain in my left clavicle area. I didn’t give the pain much thought, placed it where it didn’t hurt, and continued to study. Over the weekend, I mentioned the sharp pain to close relatives who suggested stress as the culprit. Being a young, active, and nonsmoking woman, I couldn’t come up with a different diagnosis. I woke up multiple times a night due to the excruciating pain, but I continued to press on and push through. I had work and school to study for.

It was Tuesday, April 22, five days after developing chest pain, when I finally knew something was wrong. I worked a ten hour shift in the Trauma/ER department at a local hospital and was unable to catch my breath after climbing a flight of stairs to my car. I drove home to grab study materials for a Microbiology final that was scheduled for that evening. Again, I couldn’t climb the stairs to my apartment. I became hysterical. Why couldn’t this pain just go away, so I could focus on my school? I proceeded to drive myself to class. I don’t remember much of the exam, only trying to catch my breath throughout and reassuring my classmates that I was fine. Once finished, I walked to my car, stopped for gas and finally drove myself to the same ER I left earlier that day. As I walked towards the entrance, I was unable to breath and started crying for the first time. I was done trying to be strong. I couldn’t make another step. A volunteer quickly followed with a wheelchair and I was ushered inside. A stat EKG showed nothing and a chest X-Ray came up clear. I began to panic. Then, my D-Dimer test came back with a result of 5999 mcg/L, with normal being less than 250 mcg/L. I became numb.

It took exactly two hours for the medical team to obtain a CT scan and locate two sub massive blood clots in my left lung. I also had another clot causing about 80% blockage in the pulmonary valve of my heart. Given the size of these particular clots, I suffered from pulmonary infarction (dead lung tissue) and enlargement of my heart’s right chambers. I was placed on heparin and administered an emergent dose of tPA, a clot busting agent that is used to treat stroke victims, and transferred to the cardiac ICU for three days. Those three days were filled with constant monitoring and echo tests to make sure the clots decreased in size. After a total of eight frightening days, I was finally pain free and able to breathe again.

It took an additional five days for my INR to show up in the normal range. Throughout my stay, birth control pills were the only culprit we could point our fingers at. I was placed on Coumadin and discharged from the hospital with an extensive list of providers to follow up with. I visited anti-coagulation management centers every other day, every other week, then every other month to monitor my blood. I had cardiology appointments every month to make sure my heart chambers were returning to their normal size. In the weeks following my discharge, I had a difficult time wrapping my head around what had happened. I simply chose not to think about it and stayed as busy as possible. When it all caught up to me, I became an emotional mess. I became unable to deal with life. I didn’t feel well and couldn’t explain why. No one had the answers for me and I didn’t know where to find help.

Quote_Jordan StonehouseFortunately, blood work post-Coumadin therapy only showed elevated homocysteine levels, which I treat with folic acid and aspirin daily. But, I still struggle with the daily question of why did this happen to me? I had a plan for my life and was confident that my invincible body could carry me through it all. Now, I face debilitating anxiety and stress every day. I live in fear that I will develop another clot. Optimally, I would just be a normal 25-year-old woman who could manage her hormones with a simple pill and continue life full of energy and optimism. Knowing this isn’t an option for me, I realize I must seek out alternative therapies.

I wish my doctors would have told me that recovery from pulmonary embolisms isn’t easy. I wish I was provided with more information on the emotional and physical toll that these clots take on your body. I wish I wasn’t left to search for all the answers on my own.

I am so thankful to have found a resource like the Blood Clot Recovery Network. I am excited to learn from other survivors and find some reassurance that what I’m thinking and feeling is normal. The support alone will mean the world.

It is a blessing to still be here on this Earth, and it will be something I never take for granted.


Share Your Story SQThank you, Jordan, for sharing your story with BCRN. Connect with Jordan in the comments below. 


Visit Emotional and Lifestyle Recovery to learn more about emotional recovery from blood clots.


Visit How to Share Your Story to share your story with Blood Clot Recovery Network.