February 8, 2018

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 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 is 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 bloodstream, 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 for health, 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.

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.

Recovery can take a long time and varies for each individual. Read more about what to expect.

Visit my Amazon Influencer Shop to get the products I use to stay healthy and happy every day.

Connect with my online support group for peer support.

Filed Under: Educate, Encourage Tagged With: , , , , , , , , , 1 Comment
July 26, 2017

When should I call my doctor?

After my blood clot, I felt like I could no longer trust my body anymore. After all, I was taking care of it – exercising, eating well and losing some extra weight – when a blood clot from my leg went to my lung and almost ended my life at just 29 years old. I was healthier than I had been in a couple of years, I was happy, and I had no other out-of-control health problems. The very last thing I expected was a blood clot, in fact, I didn’t expect one at all. If I couldn’t trust my body when it was healthy, how could I possibly trust it when I was sick, on blood thinners, and recovering from a mind-blowing event that nearly killed me? I couldn’t. That was almost as scary as surviving something that kills one in three people that it affects. Not only could I not trust my body, I also wondered if I could trust my head: How would I know if I should call my doctor during my long and difficult recovery?

In the initial days after my discharge from the hospital, I was at my hematologist’s office once or twice a week to have my INR checked. I had an appointment with my doctor every month to discuss my treatment and my recovery, and I had a lot of appointments with a variety of other specialists to fill the rest of my very miserable time with. I am very fortunate that my hematologist – and my main point of contact for my care – is very understanding and supportive and assured me early on that no question was dumb, no phone call was a waste of anyone’s time, and he absolutely expected to hear from me a lot as I went through the stages of healing. So, I figured, what did I have to lose? I called him a lot – for everything in the beginning. If I had any pain, unusual feeling, or question, I just called him. I treated it as a non-negotiable part of my treatment plan: Take your medication, go to your appointments, and call your doctor.

He always answered me in some way. Sometimes, his answer was, “That’s normal, you can expect that,” or it was “Why don’t you make an appointment to come see me?” or, one time it was, “You need to go to the emergency room right now.” That time I thought I had another PE, and thankfully, I didn’t. I did have pleurisy, or inflammation of the lining of my lung, which was nearly as painful and required admission to be treated.

As time went on, I started to learn how my doctor would answer me, and I started to learn how my body felt after a blood clot. I started to learn what was “normal” for me, what was unusual for me, and what was downright frightening for me, or sent me into panic mode. Eventually, I noticed I was calling my doctor a little less than once or twice a week, as I learned to manage my health with my own knowledge and experiences. I went from calling my doctor a couple of times a week, to calling him a couple of times a year. I now know when I need to seek help right away, make an appointment, or when I can handle a situation at home, by myself.

One of the questions I hear frequently is, “How do I know when I should call my doctor?” The answer is simple: If you have to ask, call your doctor. That being said, calling a doctor is not easy for everyone – and not everyone has a supportive doctor. If that’s how you feel, there are some things you can do to help you decide if you should call your doctor.

Listen to your body.

You may not trust your body – or you might be really angry with it after everything you have been through – but trust me, your body is smart. Listen to it. Your body is very good at letting you know, most of the time, when something is wrong. If you feel pain or have symptoms that are unusual for you, your body might be trying to tell you that something is wrong.

Work with your doctor, or healthcare professional.

Your doctor is your best resource for understanding your symptoms and what they may mean. Your doctor works for you – and you should not worry about bothering him or her. If you don’t have a doctor who you feel is a partner in your care, take steps to find a doctor who is. You, and you alone, are in charge of your body and your recovery. Talk to your doctor about a plan to manage your health. Can you call him or her? Can you send an email? Should you proceed right to the emergency room for certain things? What symptoms should you watch out for? What symptoms might be normal for you? Work with your doctor to develop a plan of action – no matter how simple – for handling your health questions. My plan was as simple as this: Call my hematologist with any questions I have.

Trust your past experiences.

This ties together listening to your body and working with your healthcare provider. Once you do these things, you will start to learn what is and what is not normal for you during your recovery. For example, let’s say you have a pain in your leg that feels exactly like your DVT, so you call your doctor, and he or she advices you to seek medical attention right away. You automatically know what to do if and when it happens again. If you have pain in your leg that hurts a lot, but goes away with rest and elevation – when your DVT pain did not – you start to learn what that pain means for your body. Maybe it means you walked too much, or worked out too hard at the gym. Simple thoughts like, “This pain is different,” or “I have never hurt this bad before,” are clues that something could be very wrong, and you should call your doctor for guidance. Thoughts like, “This feels familiar, I need to take it easy this afternoon,” or “I have felt this tired when I don’t get enough rest at night” might be clues that a particular feeling is normal for you. If you can’t remember, or if it seems overwhelming to understand your experiences, keep a journal or log book with simple entries about what you feel, when you feel it, for how long, and what the resolution is.

Some Important Things to Watch Out For  

There are some signs and symptoms that you should be aware of – especially once you have had a blood clot – and you should always call your doctor if you question how you are feeling.

A blood clot in the leg or arm (or other parts of the body) is called deep vein thrombosis, or DVT, and is dangerous because it can break apart and travel through the blood stream, leading to life-threatening problems, like a blood clot in the lung. If you experience signs or symptoms of a DVT, call your doctor or seek medical attention as soon as possible.

Signs and symptoms of a blood clot in the leg or arm (deep vein thrombosis or DVT):
  • Swelling in the affected leg, including swelling in your ankle and foot, or swelling in your arm
  • Pain in your leg, ankle, foot, or arm. The pain in your leg can feel like severe cramping, or a charley horse, and often won’t go away with your regular methods of pain relief
  • Warmth and/or tenderness over the affected area
  • Changes in your skin’s natural color (red, blue, white, or purple)

A blood clot that breaks off from the leg or arm and travels to through the bloodstream to the lung is called pulmonary embolism, or PE. A PE is life-threatening because it can block blood flow and oxygen to the lung(s). If you experience signs or symptoms of a PE, go to the emergency room, or call 911, immediately.

Signs and symptoms of a blood clot in the lung (pulmonary embolism or PE):
  • Unexplained sudden onset of shortness of breath
  • Chest pain or discomfort that worsens when you take a deep breath, cough, or even lie down
  • Feeling lightheadedness or dizzy
  • Rapid pulse
  • Sweating
  • Coughing, or coughing up blood
  • A sense of anxiety, nervousness or impending doom

If you are taking blood thinners, you might also worry about unwanted or dangerous bleeding. If you have any questions about bleeding, you should call your doctor right away.

Signs and symptoms of dangerous or internal bleeding can vary greatly depending on where in the body bleeding may occur. If you experience these symptoms – or any other symptoms that cause you concern – call 911 or seek medical attention right away.

Signs and symptoms of bleeding
  • Abdominal pain and/or swelling
  • Light-headedness, dizziness, or fainting (can result from any source of internal bleeding once enough blood is lost)
  • A large area of deeply purple skin, or bruising, especially around the chest or abdomen areas
  • Swelling, tightness, and pain in the leg or arm after an injury
  • Headache and/or loss of consciousness
  • Blood in urine or stool (black or tarry stool)
  • Shortness of breath
  • Chest pain
  • Nosebleeds, cuts, scrapes, etc. that do not stop bleeding after applying direct pressure for 10-15 minutes
  • Nausea and/or vomiting
  • Unexplained bleeding from another body cavity, including ears, nose, mouth, or anus
  • More symptoms of internal bleeding
Even though it can be difficult to learn about your body after a blood clot, there are some things that you should never ignore. In the event of a head injury – such as a bump, bruise, cut, etc. – always consult with your doctor as soon as possible for further instruction, or seek immediate medical attention. If you have shortness of breath, chest pain, or the worst headache of your life, always seek immediate medical attention because these might be symptoms of something serious. 

Managing your health after a blood clot is not easy, and there are many things to think about, consider and worry about. In time – as you learn from your experiences and your healthcare provider – it does get easier and eventually, I hope you will find that you know your body very well. While it may take some time to get there, you too can manage your health after a blood clot. In the meantime, if you wonder, always make the call. Your health – and perhaps ultimately your life – are always worth making the call.

There is hope for healing and you are not alone,

Reader Writes In: How do you decide when to call your doctor? Is your doctor a partner in your care? Why or why not? How do you manage your health after a blood clot?

There are three symptoms you should never ignore. Find out what they are.

Are you worried that you might have a blood clot? Here is how to talk to your doctor.

Connect with BCRN on Facebook and in our private Group.

Filed Under: Educate Tagged With: , , , , , , , 1 Comment
May 4, 2017

Patient Story: When Blood Clots Are Just the Beginning by Shelia

This patient story “When Blood Clots Are Just the Beginning” was written by Shelia Ipock for the Blood Clot Recovery Network Blog.

It was the scariest day of my entire 45 years on this earth. I had been complaining of a pain in my lower right side for about two years and had numerous tests. I got to the point where I figured I would just have to live with the pain. At the end of August 2014, I stretched my legs into a straddle and felt a burning sensation in my left inguinal, or groin, area. Over the next few days, it started hurting and it got very warm to the touch. I had been going to the doctor about the pain in my right side and had recently been told it was psychosomatic, or all in my head. I figured I just pulled something and it would resolve itself. We had some friends that we hadn’t seen in a while and we all went dancing that Saturday night. We did three rounds of a line dance, and when I went to turn into the next round, I started seeing spots and I thought, “uh oh.” Then, I passed out.

I came to and was surrounded by people. An employee at the bar assumed that I was intoxicated. My husband told him that I was drinking water, so there was no way that was possible. I got up from the dance floor and took a few steps, and I couldn’t catch my breath. After that episode, I just wanted to go home, but everyone insisted I go to the hospital.

I went to the emergency room at about one o’clock in the morning on Sunday and waited. They found a space for me and sent me in for an MRI of my head. This was after my husband told them I never hit my head. The doctor said nothing was wrong and sent me home. I still had issues breathing, but I figured that it must not be that bad since I was sent home. My husband instead insisted that I go back to ER. I went again and this time they did an x-ray of my chest and stomach area. The ER doctor disregarded the fact that I couldn’t breathe. He took one look at the x-ray and said I was constipated. He gave me some medicine and had a nurse give me an enema and they left me in a room and forgot about me. I had enough and my husband found someone to discharge me. They even admitted they forgot me and then sent me home.

On Monday, I went in to see my general practitioner. I wasn’t looking all that great. I was having more difficulty breathing and walking. My doctor had blood tests done and I went home. I could barely keep my eyes open. On Tuesday, I went back to my doctor. I was gray and couldn’t walk. I was also barely breathing. From there, I went to the hospital and had to be put in a wheel chair just to get to my doctor. She took one look at me and said she thought she knew what was wrong and had to take one more blood test. She sent me to ER so they could do a CT scan. In the machine, I could hear the techs in the back talking quietly to each other in an urgent manner (I later found out they thought I had died in the machine).

Once I was back in ER, everyone began to rush around me. I was quickly put in a bed, an IV was put in, and I was put on oxygen. Then an ER doctor came in and told me I had a saddle pulmonary embolism. He told me I was lucky to be alive, upon viewing the CT scan he said he had never seen a saddle embolism that large. The scan showed 90% of my left lung was blocked and 50% of my right lung was blocked. They got me as stabilized as they could, and I was sent upstairs to Intensive Care Unit (ICU). One of the few things I remember about that time was apologizing to my mother for being admitted to the hospital on her birthday, which was September 17, 2014. I was in the ICU for a week. A week after that, I was back in the hospital with a pleural effusion. That was more painful than the embolism. I was on oxygen for a month. I had to take Coumadin for six months.

When I finished my six months of Coumadin, I was rushed in to have a colonoscopy.  It was determined I had a baseball size tumor that was staged at 3B cancer (so much for psychosomatic, huh?). I ended up finding out that when a person has cancer their blood hyper-coagulates. I finally found out why I had so many blood clots.

I lost my mom to colon cancer the week I finished chemo. I lost my dad nine days later of a broken heart. I have good days and bad days. It’s been two years since my initial diagnosis of a saddle pulmonary embolism. It’s been almost one year since finishing chemotherapy. I have been through a lot. I still have this fear that I will fall over with another blood clot. I also fear a return of cancer. Life will never be the same for me, but I’m alive, and I’m working on getting to a point where I feel healthy again.

Editor’s Note: Thank you, Shelia, for sharing your story with BCRN. Share your thoughts with Shelia in the comments below.

Read more Patient Stories from BCRN.

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

Filed Under: Patient Stories Tagged With: , , , , , , , , Leave a Comment
March 31, 2017

How to Raise Blood Clot Awareness: Discover Your Personal Plan

March – Blood Clot Awareness Month – has been a very eventful month for our community. This month has provided us with an opportunity to come together as one not only to raise blood clot awareness, but to share stories, ideas, and life-saving information about blood clots. This month, I have read countless stories from you. There have been stories from people who are celebrating survival and stories from people who grieving the loss of a precious loved one. I have spoken to people who had no idea that a blood clot could affect them, and I have spoken to people who work hard every day to share information about blood clot risks and signs and symptoms. I have spoken to people who are newly diagnosed with DVT and/or PE, and I have spoken to people who have been battling blood clots for years. Some people have reached out for reassurance and support, while others have reached in to give back to the community that has helped them. Some people are scared, hurting, and overwhelmed, and others are joyful and reassured. Some people are healed, and some people are not. Some people are at the beginning of their journey, while others have not even stopped on their journey to look back until now.

What this month has done is brought us all together, in one place at one time, to raise a united voice about an issue that has deeply affected us all, in one way or another. And believe it or not, people are listening. You can see it in the comments, the shares, the likes, and the readership here, and in all the other communities you are all a part of. If you doubt, simply type #BCAM into a social media or internet search bar, and see all the conversations that have taken place this March, and are taking place right now (it’s not too late to jump in on any of them, either).

On this last day of Blood Clot Awareness Month, I want to leave you with something everlasting, something that you can take with you into the days, weeks, months, and even years ahead. Just because March is over, does not mean we should stop communicating, connecting, and sharing about blood clots, or how they have impacted our lives. In fact, it is my hope that we use the momentum this month has created to continue talking about the issues that affect us all and to continue alerting people who don’t know, about how dangerous blood clots are. Not only that, it is my hope that we continue to bring awareness to blood clots, and we continue to support the organizations, groups, and communities that can effect change to ensure no one ever stops talking about blood clots, an often-overlooked public health concern. It is a concern that indeed affects us all.

Along with these thoughts, I am leaving you with a personalized plan for raising blood clot awareness. Anyone can do it, and anyone can make a difference. In fact, you already have. These are the things I did to start talking about blood clots, and today, my work here reaches over 25,000 people a month. Over 1,000 people a month receive my newsletter, and nearly 5,000 people connect with our community on Facebook every day. The good news is, you don’t have to start a blog or have a thousand followers to raise awareness. You can raise awareness where you are right now, with what you already have, regardless of what month it is, in just three simple steps. Here’s how:

 Step 1: Find your passion

After my blood clot, it seemed that my entire life fell apart. Everything in my life suffered – my job, my relationships, my health, and my happiness. I lost everything and had no idea how to get it back. I felt alone, scared, worthless, and even self-destructive at times. I was fighting a losing battle, and nothing anyone said or did, including myself, could make it better. It was the worst I have ever felt in my life.

I spent a lot of time trying to figure out what purpose any of my sufferings had, and what my purpose in life was. My attempts to discover this was futile, leading me to one dead-end answer after another. There was no justification for the suffering I was going through. There was no explanation for why I had lost everything. There was nothing I could possibly give back to a body – and a world – that had treated me so cruelly.

Then one day, I stopped looking for a purpose and started listening. I wasn’t the only one with a DVT and PE diagnosis. As it turned out, there were a lot of people out there who had also lost everything, just like me. There were a lot of people out there who had no idea what had happened to them, or why. Things started to shift in my mind, and I began to focus on what I believed was my passion: Helping other people through a blood clot diagnosis and recovery. I became determined to be the guide that I wished I had after my experience. I started Blood Clot Recovery Network – not even sure if anyone would read it. But, people did read it, a lot of people, and my work here continued to grow. Over the years, my work here has led to speaking engagements, freelance writing opportunities, advocacy events, and eventually, my career in the same field.

When I look back from where I am now, to where I was then, I still cannot believe one thing sometimes: My passion led me to my purpose.

If your passion leads you to blood clot awareness, you can: Talk about your experience, write about your experience (publicly or privately), tell everyone you know about blood clot signs and symptoms, tell everyone you know that they could be at risk for a deadly blood clot (and tell them why), educate other people about how to prevent blood clots and get involved with patient advocacy groups programs and services. With the far-reaching impact of social media today, anyone can make a difference, and anyone can share their story. By sharing our stories, we share facts about blood clots. Facts that matter. The possibilities are virtually limitless. Use your social media platforms – and your voice – to make a difference. Do as much – or as little – as you can or want to.

Step 2: Let nearly everything that you do be to help someone else   

After my blood clot diagnosis, I felt worthless. It is hard for me to describe just how worthless I felt, in fact. It was unlike anything I had felt before or anything I have felt since. I thought it would never get any better, and I thought there was nothing I could ever do to feel self-worth again. To sum it up, I couldn’t figure out why I had not died, because I had no reason to live anymore, I felt so hopeless.

Slowly, and not without pain and heartache, I started to realize that I was not worthless and that there were things I could do. These things came primarily in the form of helping other people and were things I was already starting to do. Whether it be sharing my story, sharing my experience in an online forum, telling someone about what my PE felt like, or simply letting someone else know I felt the same, hopeless way that they did – I was helping someone else. How do I know that? People started to tell me, even a simple “Thank you,” is evidence that you have made a difference. People would say, “I didn’t know this could happen to me!” I started to realize, that because of me, now they did know a blood clot could happen to them. Never underestimate the power of helping another human being, especially during their darkest hour.

Ways you can help other people: Share your story, share information about blood clots, share information about recovery, and tell your friends and family about what you are going through (if they don’t listen – that’s okay – they can save this for later), get involved in online support groups and forums, and tell your doctors about what you are experiencing after a blood clot diagnosis.  

Step 3: Always remember that there is hope for healing from blood clots

Each day, I talk to numerous people who are at different stages of their recovery. Some people are at the very beginning – they don’t even know they have recovery to do – and some people are far, far removed from the horrible things that happened to them – yet, they still have a story to tell. Some people have been recovering for a week, while others have been recovering for three years. Each of us is different.

I am often asked, “How far are you in your recovery from blood clots?” It has been four, almost five, years since my DVT and PE, and now, I consider myself healed. Sure, I will always have medication to manage and things to take into consideration that I never did prior to my diagnosis, but I am through the hard part, and I have seen that there is life – and purpose – on the other side of blood clots. There is beauty and healing and compassion and freedom from pain and suffering.

For some people, healing takes a lot longer, and still, some people seem to struggle their entire lives. I don’t believe everyone moves through recovery with the same outcomes, but there is hope for healing. That healing might not look the same for all of us, but it is there.

What helped me heal more than anything, was helping other people heal. Each day, I try to remember that in the work that I do. Helping other people is healing – for me and hopefully, for them too.

What you can do to help people heal: Share your experience, share your struggles, share your joy, let other people know they are not alone, invite them to join you in the online groups and communities, set up a weekly check-in email or message with someone you have connected with, and learn as much as you can about blood clots.

There you have it, your personal plan to raise blood clot awareness and share life-saving information about blood clots. Take this information, think about it, and begin making a difference when and where you can. You are a valuable person, you have a lot to contribute on this subject. We all do. When you have been affected by something like blood clots, awareness is ongoing. There is no right or wrong way to do it when it comes to your personal story. I know you can and will make a difference because you already have.

There is hope for healing and you are not alone,

 

 

Reader Writes In: How are you going to raise awareness? What is a part of your personal awareness-building plan?

That’s Called Hope: A special message for you during Blood Clot Awareness Month

Want more BCAM information? Find out why blood clot #AwarenessMatters.

 

Filed Under: Educate, Empower, Encourage, Enrich Tagged With: , , , , , , , , , , , , 2 Comments
March 13, 2017

Hope: A Special Message for You During Blood Clot Awareness Month

Nearly five years ago, my life changed forever when I suffered from a blood clot in my leg and in my lung. I went from being an active runner to needing an oxygen tank to breathe. I spent several days in the hospital – my life in the balance – while doctors tried to figure out what was wrong with me. Up until that time, I thought blood clots only happened to old people who were sick, or who weren’t able to move around very much. I was 29 years old, not 89.

March – Blood Clot Awareness Month – serves as a prime opportunity to talk about blood clots. Each year, as many as 900,000 people a year are affected by blood clots in the U.S. alone. If a blood clot starts in your leg as mine did – also known as deep vein thrombosis or DVT – and then travels to your lung – also known as a pulmonary embolism, or PE – it can kill you. About 100,000 people die every year due to a blood clot. It can also cause damage to your vital organs, like your heart and lungs. Blood clots – both in my leg and in my lung – were the most physically painful things I have ever experienced in my life. Quite frankly, it felt like I was dying – maybe because I was. The scary thing is, I didn’t even know that I was at risk for a blood clot, or that one could happen to me.

Know Your Risk for Blood Clots

Many things can place you at risk for a blood clot. Some of the major risk factors are hospitalization or surgery, hormonal birth control, pregnancy, treatment of menopause symptoms with estrogen, traumatic injury to the bone or muscle, a family history of blood clots, and sitting for long periods or best rest, just to name a few. Mine was caused by estrogen-based birth control and also the clotting condition antiphospholipid syndrome, which I will have to treat for the rest of my life. If you don’t know if you are at risk for a blood clot, find out right now. Speak with your doctor about your risk, and learn more about how you can prevent blood clots. Blood clots are preventable, and even treatable if detected early.

Know the Signs and Symptoms of Blood Clots

Just as important as knowing your risk for blood clots, is knowing the signs and symptoms of blood clots. I had no idea that the pain I felt in my leg – it felt like someone had the fleshy part behind my left knee in a vice that kept getting tighter – was a symptom of a blood clot. It hurt when I walked, the pain radiated down my leg to my foot. The pain did not go away with rest, elevation, ice, or even Tylenol. I did not know – and this is the scary part – that my inability to lay down flat, take deep breaths, or speak in full sentences was a sign of a life-threatening blood clot in my lung. Thank goodness, my primary care physician did, and he instructed me to the nearest Emergency Room without delay. I tried to live my life normally for two days before I went to the hospital, barely able to walk or breathe by that time. The admitting physician told me I would not have survived for a third day. If you don’t know the signs and symptoms of blood clots, learn about them right now.

I was in intensive care for several days as doctors worked to figure out why I was so sick. They worked to stabilize my heart, my lungs, my breathing, and various levels and counts in my blood. I was discharged with a wheelchair and an oxygen tank, and I thought it was all over. What I did not know was that my journey had really only just begun. I spent a total of two years recovering from the physical damage that was done to my body, and nearly another year recovering from the emotional damage that was done to my mind.

Recovery: Not Just a Physical Journey

The emotional side of recovery is what I want to talk to you about this March. It’s the part that gets left out most often, if not entirely ignored in some cases. Sometimes, people don’t understand. Even people that we know and trust, like our family, our friends, maybe even our doctors.

People ask me all the time, “How did you survive?” To be honest with you, I have spent years thinking about my answer to this question. First, I had to ponder, did I really survive? People survive physical things that push them to their limits every day – floods, fires, animal attacks, being lost in the wilderness, and car accidents, for example. I believe some people even survive illnesses and diseases. After thinking about these types of situations versus my own, though, I don’t think I actually survived my blood clot – not in the same way. Surviving my blood clot was completely out of my hands. It was in the hands of my doctors, and perhaps even more importantly, a higher power – for me, it’s God – who wanted me to still be on this Earth. You see, I didn’t actually understand I might be dying, so in some respects, I couldn’t make the conscious decision to survive my ordeal.

What I did was overcome. After my pulmonary embolism, life became brutally unfair, and I dealt with a lot more than some people will ever have to deal with in their entire life. I lost a lot, nearly everything, and I experienced grief unlike any I had ever felt before. I lost my friends, my job, my medical insurance, my self-esteem, and my confidence – to name just a few things. I was in more debt than I could have ever imagined, sicker than I knew was even possible, and the blows just kept coming one after the other. I dealt with them one by one, battle by battle, fight by fight. Everything was a fight, it seemed. I tried my hardest to do what I could to improve my situation. Sometimes it did improve, sometimes it didn’t. Sometimes it got worse. Sometimes, I found, I had to accept the help of others to be able to help myself.   

What I did not do was give up, not completely. Now, this is not to say I didn’t throw in the towel on certain days, weeks, or even months, and swear I was done with it all. I did that. I did that a lot during my recovery. Yet, somehow, someway, I never gave up completely. I always found something to believe in. Even if that something was the thought that it couldn’t possibly get any worse. Then, when it did get worse, I thought, “It can’t get any worse than it is right now. Eventually, it has to get better.” My dad told me the same thing, and I clung to that belief. He told me, “Someday, Sara, it all has to get better.” A few important things kept me going when I gave up on myself – my family, my dogs, music, and my writing. Without them, I would not be where I am today. 

Hope: A Special Message for You

Through all the loss and heartache and heartbreak, I always told myself there was something better on the horizon. The way I looked at it, if there wasn’t, then why was I still here? Back then – during those first weeks, months, and years of recovery – you could have never convinced me that I would see better days. Yet, deep inside my heart, I believed there were better days ahead, even if it seemed like a child’s fairy tale at the time. That tiny, tiny ember never stopped burning, and I never stopped believing. I think that’s called hope. Hope for a better tomorrow, for less pain, for health, for wellness, for love, for peace, for forgiveness. Whatever it is that you need, there is hope that it will one day come to you. 

I am a different person than I was before my blood clot. I don’t think someone like me – or you – go through a life-threatening illness and comes out the same on the other side. I also don’t think a person can understand that unless they have been through it themselves. This is the part of Blood Clot Awareness that is important for me to share: Surviving, overcoming, or managing a blood clot is life-changing.

The second this that is important for me to share with you is: There is hope. There is always hope. Even when you hurt more than you ever thought possible, cry more than you ever thought you would, have reached the end of your rope, lost everything, are alone, or have a broken heart. Even when it’s all over and you have nowhere to turn – there is hope. There is always hope. Find something – no matter how small that something is – to cling on to, and cling to it with all of the strength you have left. Whether it be God, your spouse, your parents, your children, your pet, yourself, your garden, your journal, your favorite song, your favorite book, your home, your memories, your dreams – hold on to it and don’t let go. Don’t ever let go of hope. If you can’t find something to cling to, here it is: There is hope.

There is hope for healing and you are not alone,

 

 

Reader Writes In: What is the hope that you hold on to? What is one thing you want to share during Blood Clot Awareness Month? How did you survive or overcome a blood clot?

March is Blood Clot Awareness Month (BCAM). Get the information that everyone needs to know.

Want more BCAM information? Find out why blood clot #AwarenessMatters.

Filed Under: Empower, Encourage Tagged With: , , , , , , 9 Comments
February 8, 2017

Patient Story: Running Down A Road to Blood Clots by Rachel McCulloch

This patient story “Running Down A Road to Blood Clots” was written by Rachel McCulloch for the Blood Clot Recovery Network Blog.

It was October of 2015 when I got to run one of the biggest and most important races of my life, which was the Nike Women’s Half Marathon in San Francisco, California. The day of my race was amazing, inspirational, and in the end, I finished in pain with a knee injury. Flash forward to January of 2016, the pain had started to slowly intensify in my left knee, and I couldn’t take it anymore. After visiting my orthopedist, it was determined I had torn my meniscus and would need to have it surgically repaired. I was scheduled for arthroscopic surgery on February 2, 2016.

I was told it would be a super easy surgery and even easier recovery. I went into surgery and came out with no complications and feeling pretty good. The day after my surgery would be the day my life would change forever.

I woke up that morning with a very swollen foot and calf. I didn’t think anything of it, and attributed it to the surgery and the wrap that was protecting my sutures. I brushed off the swelling and went to my first physical therapy appointment that afternoon. After my physical therapist assessed my knee, she told me she was more concerned with the swelling and redness in my calf and foot.

My physical therapist told me I needed to go to the emergency room. My dad drove me straight to the ER and after being taken back for an ultrasound, it was discovered that I had a deep vein thrombosis, or DVT, in my calf. I was immediately put on Eliquis. I was able to go home after a few hours in the emergency room, but I had to go back the next day with shortness of breath and dizziness. After having a chest cat scan done, I was diagnosed with multiple blood clots in my lungs and was admitted to the ICU for further observation.

I remember clearly that first night in the hospital as I reflected on my life. In a matter of a few months I had gone from a very healthy active 29 year old woman to a very sick individual facing a life or death situation. I kept thinking, “How could this happen to me?” The doctors were able to run blood work in the ICU, which eventually revealed the true cause of my blood clots to be factor V Leiden, a genetic blood clotting disorder.

“Wait, I have factor V Leiden?,” I thought, “The same disease my grandma and grandpa have.” Why had this not been found earlier on in my life? Why had I not taken any precautions? What if I wouldn’t have run that race at all? Then maybe I wouldn’t be in this situation.

All of the whys and what ifs won’t change the fact that I had this happen to me. My life has changed forever, but I don’t look at what happened to me as a negative. I try to always remain positive.

Life is a precious gift that can be taken away so fast, it’s best to look at all of the good things in life and put the negative stuff behind us. The one question I get asked all the time is if I still run, and of course, the answer is yes.

Editor’s Note: Thank you, Rachel, for sharing your story with BCRN. Connect with Rachel, or share your thoughts, in the comments below.

Read more Patient Stories from BCRN.

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

Filed Under: Encourage, Patient Stories Tagged With: , , , , , , , , , , , , , , , 5 Comments
« Previous Page
Next Page »