Hope for Healing After Blood Clots

I have talked about hope for healing since I first started writing this blog, Blood Clot Recovery Network. I also talk a lot about not being alone during recovery from blood clots. It seems that these thoughts have always been a part of this space, but honestly, I didn’t have hope that I would heal when I started this blog, and I was entirely alone. Not many people were talking about blood clot recovery and if they were, I hadn’t found them yet. Still, I couldn’t get these words out of my head, and they became a founding focus of the work that I do here. I said them all the time – out loud and in my writing – perhaps believing that if I said them enough times, they would in fact become truth.

Throughout my personal recovery, I often heard, “You’re so positive,” and “You’re handling this so well.” In reality, my world was falling apart. My job, my relationships, my health, and my self-esteem where all in jeopardy, and there was not a whole lot that I could do about it. It was all out of my control. I don’t routinely consider myself positive – because I am not happy and outgoing all of the time – but most people would consider me an optimist. What I realized after I healed from my blood clots was that even though I wasn’t happy – and I certainly wasn’t optimistic – I was always hopeful for what the future held. I never stopped believing that better days were coming. I realized that I didn’t have to be happy to be positive. In fact, I was downright distraught over my situation. Having hope, though, even when I was hurting inside, was a positive way to handle a difficult situation. Looking back, I have handled most difficult situations in my life by remaining hopeful for a better future.

From where I am today, the words “there is hope for healing” make more sense than ever before. Without my blood clot experience, I would not be where I am today. Now, I am not sorry that my blood clot happened to me, but it has taken me years to understand that, and it wasn’t an easy conclusion to come to. After all, it’s incredibly difficult to be grateful for something that almost ended my life and caused many years of hardship and heartache.

Despite all the pain I went through, I still choose gratitude for my situation.

Without my blood clot, I would not have had the chance to share my story, and with it, to share life-saving information about blood clots. I would not have the opportunity to meet all of you. Without my blood clot, I would not be able to pursue my passions as a writer and as a communications professional. I would not have the career I do, or the opportunity to give back to the community that has helped me heal. Ultimately, without my blood clot, I would not be able to share hope for healing with the people, who find themselves as alone as I felt when I was recovering from blood clots. I am grateful for what happened to me, because of where I am today, and because I can work each day to make a difference in the lives of other people who are suffering and hurting.

Gratitude, though, didn’t happen overnight, and it doesn’t make everything effortless, either. I still struggle to this day from time to time. I wish I didn’t have to deal with the long-term consequences of a serious health condition. I still have anxieties and fears that will always be present to some degree. What if my blood thinner doesn’t work? What if I have another blood clot? What if a bigger, scarier health crisis happens to me that I am unprepared for? Those thoughts are still present in my mind from time to time, but I have hope that I can handle whatever comes my way, because I have already handled this.

Gratitude for my experiences took years to happen, and it was very much a part of my healing process. In the beginning, I hated what happened to me. I was angry. I thought the pain would never, ever end. I wondered “why?” for years, before something finally shifted in my mind.

That shift was towards hope. I began thinking about what was ahead, not behind, for me. I began to hope that there was something out there for me. I began to hope that the pain and suffering I was experiencing was not my final destination. I stopped asking “why,”and I started hoping for a different outcome. In time, why didn’t matter so much anymore. How began to matter more. How was I going to feel better? How was I going to deal with it if I didn’t feel better? And ultimately, how was I going to take what I went through and make a difference?

I didn’t know how, nor did I have an answer to any of my questions, but I started to have hope that I would find the answers, or perhaps that the answers would find me.

To my complete amazement, things started to turn around, for the better. I didn’t believe it at first (it was too good to be true). As I built this space and this blog, I started to realize that I was not alone. I received countless messages from people who said they were going through the exact same things that I was. People began sharing their pain, and their heartaches with me. People also shared their successes and progress with me. People started telling me that they hoped because I had hope. They said because of me and my experiences, they didn’t give up.

I began to see how, and then one day I understood why.

It became immediately clear to me why I went through what I did: I was meant to make a difference in the lives of people who were suffering with blood clots as I had. The more I gave, the more I received in return. The cycle of hope and healing has unveiled some unbelievable outcomes for not only myself, but for many of you as well. I know because you tell me each and every day how something I have written, something you read in the BCRN Facebook Group, or on the BCRN Facebook Page, has made a difference for you. Time and time again, you have told me that the stories of hope and healing have cleared the path for these same gifts in your own lives.

Hope and healing from blood clots can be yours, and you do not have to suffer in silence, and alone. Honor where you have come from, and what you have been through, because you have been through a lot. Your body may be broken, but it is strong. Your mind may be devastated, but it is resilient. Be kind to yourself. Love yourself. Love your body because you’re still here, and it’s still healing. Healing is a process, it takes time, and it must be respected.

Have hope for the future and what will be. Have hope for better days, less pain, clarity, confidence, dreams come true, and yes, have hope for healing. Have hope because you are a valuable individual, who has something to give and get from this world. Hope is a gift that you all have access to right now, in this very moment, simply by changing the course of your thoughts.

If you can’t hope for yourself, I hope for you. I hope for better days ahead. I hope for healing, and I hope that you will be reminded that you are not alone on this journey.

There is hope for healing, and you are not alone.

 

 


Reader Writes In: How have you found hope for healing after your blood clot? What words of encouragement can you share with others?


A special message for you: That’s Called Hope


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.

Focus on Blood Clot Awareness Month

March is Blood Clot Awareness Month, or BCAM, and if you or someone you care about has been affected by blood clots, you might be wondering what you can do to make a difference. Often times raising awareness starts with simply sharing your story with the people that you already know. You can share your story verbally with friends and family, in a written note, or more publicly on your Facebook Page or Instagram account. Social media – and our online connections – make it easier than ever to share important information with people in our communities, and with people all over the world.

If you don’t know where to start with sharing information about blood clots, or if you’ve never shared your story before, I’ve outlined four specific things you can focus on to easily help make a difference during Blood Clot Awareness Month, or anytime you want to raise awareness: Blood clot risk, blood clot signs and symptoms, blood clot recovery, and blood clot prevention.

Blood clot recovery is not often a focus of blood clot awareness, but it’s still a very important thing to discuss. This month, I’ll be sharing some of my thoughts about my personal recovery from a handwritten journal I kept for the first month of my recovery. I’ve never shared these thoughts before, but now I want to share them with you.

I’ll also be sharing some of your personal thoughts about how having a support system like Blood Clot Recovery Network has made a difference during your recovery. If you’re not already, connect with me on my public Facebook, Instagram and Twitter channels to hear my thoughts. Plus, if you’re a member of my private Facebook Community, I’ll be sharing some special things there, that I won’t be sharing anywhere else. If you’re not a member yet, join for free today.     

Are you ready? Let’s get focused on Blood Clot Awareness Month.   

Focus on Blood Clot Risk Factors

Blood clots can happen to anyone, no matter who you are. They affect about 900,000 people a year, and about 100,000 people a year die due to blood clots, in the United States alone. In some cases, people may have been able to prevent blood clots by knowing puts them at risk for one.

I had no idea that I could be at risk for a blood clot, so I didn’t think one could ever happen to me. One of the most important things you can share with the people you know is information about blood clot risks.

Know the major blood clot risk factors.
  • A family or personal history of blood clots
  • Recent major surgery or hospitalization
  • Total knee or hip replacement surgery
  • An inherited or acquired clotting condition
  • You have cancer, or are undergoing treatments for cancer
  • You are immobile for a long time (confined to bed, long-duration plane or car trip)
  • You are pregnant or have recently given birth
  • You use estrogen-based birth control methods or estrogen for the treatment of menopause symptoms

That’s not all. Learn more about blood clot risk factors.

Focus on Blood Clot Signs and Symptoms

Just like knowing your risk for blood clots, it is important to be able to recognize blood clot signs and symptoms. Looking back, what was most striking about my situation is that I had symptoms of a blood clot in my leg (pain) and in my lung (shortness of breath, chest pain) at the same time. I also had these symptoms for several days, and they got worse as time passed, not better. Eventually, I called my primary care physician who recognized my symptoms as blood clots and told me to go to the emergency room immediately. This month, take time to share the symptoms of blood clots with the people that you know.

Know the symptoms of a blood clot in the leg or arm, also known as deep vein thrombosis or DVT.
  • Swelling, often in one limb
  • Pain or tenderness, not caused by an injury (sometimes feels like a cramping, or “charley horse”)
  • Skin that is warm to the touch
  • Changes in your skin color, such as turning white, red, blue or purple
Know the symptoms of a blood clot in the lung, also known as pulmonary embolism or PE.
  • Shortness of breath
  • Chest pain or discomfort, especially if it worsens when you take a deep breath, cough or lie down
  • Feeling light headed or dizzy, or fainting
  • Fast or irregular heart rate, or a rapid pulse
  • Coughing, or coughing up blood
  • Some people experience severe anxiety or feel like “something is really wrong”

When they occur together, DVT and PE are known as venous thromboembolism, or VTE. Blood clots in the lungs can cause death by obstructing blood flow, so if you or someone you know experiences these symptoms, do not delay emergency medical treatment.

Learn more about what blood clots might feel like.

Focus on Blood Clot Recovery

Recovery from blood clots is different for everyone. It can take weeks, months or years to recover fully, and some people live with long-term complications from blood clots, such as post-thrombotic syndrome, chronic shortness of breath, or even debilitating anxiety. If you have experienced a blood clot, it’s important to let people know what you are going through … and it’s also important for you to realize that they might not understand what you are going through.

Throughout my recovery, I had many people – some of them close to me – who did not understand how I felt, or understand why I was still in pain so many months after my PE. Sometimes, it was hard to talk about because it was so personal. How much – or how little – you share about your recovery is entirely up to you. During my recovery, I often found that sharing less was more. I found out pretty quickly that all I could do was share information about my situation, and if the people in my personal life didn’t understand, I moved on to talking with a community of my peers who knew exactly what I was going through.

Sometimes, sharing just a few general things about blood clot recovery can be helpful.
  • It’s different for everyone, and can include physical and emotional healing
  • Recovery can take a long time, but there’s no set time line
  • It’s not like a healing from a cold or a broken bone, it’s more like healing from major trauma
  • Some people require ongoing treatment for blood clots, which may involve taking medication and going to frequent doctor visits
  • Sometimes, people who are recovering may look normal on the outside, but they’re still healing on the inside
  • Blood clots are painful

Read more important things about what recovery from a blood clot can be like.

Focus on Blood Clot Prevention

It is true that not all blood clots can be prevented. About 30 percent of all blood clots that occur do not have a cause, or a known risk factor. However, there are several important things that you can do to prevent blood clots from happening, or from happening again.

The most important things that you can do to prevent blood clots are simple, and sharing them is an important part of blood clot awareness. If I had known or done these things in my situation, it may not have been as bad as it was.

Everyone can take simple steps to help prevent life-threatening blood clots.
  • Know your risk for blood clots. If you know your risk for blood clots or know when you might be in a situation that puts you at risk for blood clots like surgery or pregnancy, you can take additional steps to prevent blood clots. It is true that knowledge is power, or key, even when it comes to preventing blood clots. If you don’t know if you could be at risk, talk to your doctor about your concerns.
  • Know the signs and symptoms of blood clots. If you know the signs and symptoms of blood clots, you can seek help, hopefully before you find yourself in a life-threatening situation.
  • Know when to seek medical attention. If you think you might have a blood clots, seek help from your doctor or the hospital immediately. Don’t wait to see if it gets worse – or better. Get checked out sooner rather than later.

Learn more about how to prevent blood clots.

If you have already had a blood clot, there are some important things you can do to prevent future blood clots.
  • Take your medication as prescribed. The most common cause of blood clot recurrence is not taking your medication. If you’re struggling with your treatment plan, or side effects, talk to your doctor about your treatment options.
  • If you are going to be having surgery or a medical procedure, talk to your doctor about your risks for blood clots, and your risk for bleeding. Doctors have to carefully balance your bleeding and clotting risks. Don’t assume everyone knows your health history if you haven’t told them, and plan ahead if you can.
  • If you are pregnant or planning a pregnancy, talk to your doctor too. It is possible for women with a history of blood clots, or clotting condition, to have successful pregnancies. Connect with your doctor ahead of time, if you can, to talk about ways to prevent blood clots, such as taking blood thinning medications for the duration of your pregnancy.

Sharing information is the most important thing any of us can do to raise blood clot awareness, and Blood Clot Awareness Month provides the perfect opportunity to do so. If you’re not sure where to start, tell your own story and as you do, make sure to include the focus points above. Together, we can make a difference.

There is hope for healing and you are not alone,

 

 


Reader Writes In: What plans do you have to help raise blood clot awareness this month? Share in the comments.


Do you want to do more? Discover your personal plan for raising blood clot awareness.


March is Blood Clot Awareness Month and the BCRN bracelets are back! Visit my Amazon Influencer Shop to get your gear. #sponsored


 

 

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.


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


Blog stock photos courtesy of unsplash.

Getting Out of the Deep End

Can you believe it? 2017 is almost over and I don’t know about you, but I am ready to say goodbye to this year. I don’t like to rush things, but I am ready for a new beginning. A lot of 2017 felt like holding my head above water as a struggled in the deep end on the sea of recovery.

Don’t get me wrong, 2017 was an amazing year, and I did some things that I never thought I would since my blood clot diagnosis. I conquered one of my greatest fears – traveling abroad on blood thinners – when I flew to London and toured the UK for 11 days. Among the highlights of things I saw was the stone circle at Stonehenge, the Roman Baths, countless castles and cathedrals (my personal favorite), and the city of Edinburgh in Scotland.

Traveling overseas was a great fear of mine, primarily because of, “what if something like a blood clot happened so far away from home?” From there, I could think of a thousand other things that could go wrong on an overseas trip. From the long flight, to a blood clot, to an unexpected injury, illness, or other unforeseen natural or planned disaster, the bad things that could happen added up quickly in my mind. I worried a lot about whether or not I should go, and about what I would do if the unthinkable happened. I planned and prepared as best I could, and finally decided I couldn’t pass up the opportunity of a lifetime to see things that I had only read or dreamed about. I almost regretted my decision to go after being delayed on the tarmac – on the plane – which turned my eight hour flight into a 12-hour ordeal, but once I made it to Europe, I was able to relax and have fun.

Until the second to last day of our vacation when I had a very scary – and my personal “this is the worst-case scenario”  – experience occur. Much to my own disbelief, I fell and hit my head against a stone wall at the Tower of London. I had an immediate goose egg, blurred vision, and headache. I knew I needed to seek medical attention, and I did, just as soon as the taxi could get me to the hospital. I think I was too terrified to act, but thankfully, I had my family with me throughout the entire process. I had a CT scan at the hospital and was partially admitted for observation for 11 hours. I did not have bleeding, or an internal head injury. The biggest worry was my flight back home due to potential not-yet-seen bleeding complications, which did not happen. The flight home ended up going a lot smoother than the flight there. Experiencing one of my worst-case scenarios – and having a good outcome, because I was prepared for the possibility – has definitely helped to ease my fear and anxiety. Bad things can happen, even far away from home, and I will be okay.

It was a great year for my personal growth, as well as a patient leader and blood clot advocate. I am thrilled to say I was able to speak to two very different audiences this year, both which challenged me to think about how I share my story in new and different ways. One audience was chemists and medical professionals in San Diego, California and another was women with diabetes in Washington, D.C. As a result of my experiences this year, I feel that I am better prepared to continue providing information and support to even more people. Blood clots can and do affect anyone, and I hope that by sharing my story, I am able to provide life-saving information to someone who may not have known about blood clots before.

For BCRN, 2017 was a great year, and I am extremely grateful for your support. This year, there were over 300,000 page views on my blog. Thanks to you, I have gained important insight into the issues you want to talk about most, as evidenced by my most popular posts about recovery: how long does it take and what does it look like? I wrote them so long ago, in the midst of my own recovery, and I am so glad to know they provide relief and understanding for you still today.

Like any year, 2017 also saw it’s fair share of challenges and setbacks. After a few years of normalcy, I experienced some health challenges this year that challenged my resiliency and positive outlook. In August, I had a major bleeding incident that landed me in the ER for treatment. I’m still recovering from that by trying to stabilize my INR and boost my iron levels. Yesterday, I had an ultrasound to check for a second blood clot in my left calf. There was not one, thankfully, but it scared me to think that there might have been. In addition, I watched someone very close to me suffer from a traumatic brain injury while on blood thinners, which was very different from my own experience in London. Thankfully, that person is now recovering, but there were some scary times in the last months of this year.

These experiences reminded me of what I have been through in the past, and of just how fragile health our health is. These events have impacted me more than I anticipated, and they have been difficult to share outside of my private group (you should join us there, if you have not already). I’m still reeling from my experiences in a lot of ways. I know, however, I’m not alone, and many of you have already been down this road of uncertainty too. Through it all, I remain grateful for my health and grateful for the health of my friends and family. In just one instant, everything can change, and the end of this year made no mistake about reminding me of that.

As I look ahead to 2018, I don’t want to stop growing, sharing, learning, and exploring. I want it to be the year of “new beginnings” and “big things.” I want it to be the year of smooth sailing, too, sailing above the water. I don’t quite know what that means yet, but I do know that I have big plans for BCRN, and I hope you will join me for the start of them. I want to write more, share more, and do more to continue to provide you with the best support available if you’re recovering from a blood clot. You, my readers, are the driving force behind the work I do here, and I can’t wait to see what’s in store for us in the year ahead. Let’s get out of the deep end and together, let’s forge ahead into what the future holds.

My wish for you is that you have a wonderful holiday season, with the people that matter the most to you. If you’re in pain, or you’re struggling with your health: you are not alone. No matter how hard it gets, don’t ever get up, and remember, it does get better in time. We’re still here, and we haven’t drowned yet. I wish you health, happiness, and a wonderful 2018.

There is hope for healing and you are not alone,

 

 

 

P.S. I couldn’t leave you without a few pictures from my adventures this year. Here’s a recap:

 


Reader Writes In: How was your year? What are you most looking forward to next year?


Does the new year have you worried about making commitments and promises that ultimately end in disappointment? Find out why I don’t make New Year’s Resolutions.


New: I was recently invited to be a part of the Amazon Influencer program to share some of my favorite products with you. These are products I personally use on a regular basis. They include things like bandages, pill cases, and medical IDs. {Disclosure: I may be compensated for  purchases made from my shop.}


 

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 effects. 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.

Patient Story: A Double Whammy by Ruth

This patient story “A Double Whammy” was written by Ruth Work for the Blood Clot Recovery Network Blog.

I am a 51-year-old clinic nurse with rheumatoid arthritis (RA). I’m on those nasty meds that keep me moving, but they also make me immune suppressed. At the beginning of August 2016, I was feeling run down, and I thought it was my allergies acting up. I took my RA meds on a Friday night, and I woke up the next morning feeling like I’d been hit with a mac truck, like you do when you have influenza. I went to urgent care, and I was diagnosed with a sinus infection and sent home with an antibiotic. The next morning, I woke up feeling worse, my fever had gone up and the lymph nodes in my neck had blossomed. I called the Urgent Care with this update and was instructed to go to the ER.

After three hours in the ER, I was admitted with pan-sinusitis (all sinus cavities infected) that had gone septic. The next day, I had a CT scan of my neck, which showed one of the lymph nodes suspicious for malignancy. The next day, I had more scans looking for other malignancies. On day three, I had surgery to remove the suspicious lymph node. I finally got to go home on day four to await pathology results.

During this hospitalization, the doctors did everything right. I was on birth control pills for menopausal symptoms, and they took my pills away. I received Lovenox injections, wore the Jobst compression stockings, and had the pressure booties following surgery. They were being proactive which I thought was overkill at the time. The surgeon called me the next day and told me the local pathologist was leaning towards a lymphoma diagnosis but to confirm, they were sending my specimen on for further review.  In the meantime, I was instructed to make an appointment with the oncologist so we could get things rolling after the final pathology report came back. I saw the oncologist on August 12, 2016, and I was told I did not have lymphoma! What a blessing! But, four days later, I was huffing and puffing just trying to make my bed.

I called my primary doctor who instructed me to go to the ER to check things out. That day, August 16, 2016, my life changed so drastically! A positive D-Dimer and CT revealed extensive bilateral PEs. I was admitted again, started on Lovenox shots again then started oral Eliquis. I was sent home and told to do nothing. I was terrified! I was afraid to even sneeze for fear I may throw a clot and die. As many others have commented, even getting up to use the restroom was a major feat. As a nurse, I was familiar with DVT and Pes, but I was not aware at how long a recovery it can be. It has been a very slow go for me. I no longer make plans, I make goals. Some days I make my goals, some days I don’t. Little things like walking to the mailbox was a huge accomplishment. I returned to work on a very limited basis last September. My doctor was very protective, which I greatly appreciated. Unfortunately, I was not able to increase my hours to my normal work schedule in November. I was so fatigued, continued to be short of breath, and heart palpitation had also set in. Since I wasn’t getting better fast enough, I was placed on a ‘layoff’ status since I was not at this job a year yet, and I was not protected by Family Medical Leave Act (FMLA). I was put on ‘layoff’ for 90 days, and if I was not placed in another position by the end of 90 days, my employment would ‘conclude.’

I just can’t believe everything that has happened these past few months! It was the perfect storm, how one issue led to another issue. Due to the sepsis, I had to go off my RA meds so my RA symptoms returned. Due to the blood thinner, I can’t take any anti-inflammatories. I have recently been able to start a different RA med, which is not helping. I’m trying to be patient and give it time to work, but I’m feeling very down lately. I’m sure it’s a combination of the slow PE recovery and the RA symptoms, a double whammy. I’m not able to do the things I used to, don’t have interest in many of the things I used to, and with anything that takes a lot of energy, count me out. It saddens me to lose my nursing job, but I understand why. How can I take care of my patients when I can barely take care of myself? I feel like I’ve let my co-workers down, and I’ve let my family down. Six months later and there are so many things I just can’t do. I guess I’m not a very patient person, but am trying to be. I’m usually a go getter and this has shaken me to my core.

I’ve learned that PE recovery isn’t just a physically recovery, but an emotional recovery, which I was not expecting. Through it all, I continue to make goals and I keep trying. My husband and I love to travel and being told I couldn’t travel for six months after my PEs has been so hard, especially with most of our family being out of state.

To celebrate making it to my six-month anniversary, we flew to see our kids. I was so scared, but determined. I knew what I needed to do, what not to do, what to watch for, but I was still scared. What if I got sick again? I am happy to share, our short flight to and from our kids and grandkids went great! I was really nervous before we left because I had bronchitis the three weeks prior to our trip. I kept thinking I was going to be fine by the time we left, but I can tell my lungs have changed. The day of our flight, I went to the doctor, the pharmacy, and then the airport.  With an antibiotic, steroid and inhaler on board, I made it. We had such a great time! I had the same nap time and bedtime as our grand-daughters, but that was okay. What a blessing to be with family again.

I went off my Eliquis after we returned home, and I have noticed I feel better since going off it. I seem to feel less fatigued. I had my genetic testing labs drawn last week, and I see my hematologist tomorrow to review the results. Due to my latest illness, I had to go off my RA meds again, and I am starting a new injection tomorrow. We will see if this one is more beneficial. Will see what happens next. I am taking it one day at a time!

My journey continues, but I am here for a reason. God has a plan for me and I will continue to take life one day at a time. I’m hoping to look back at this all a year from now and realize how far I’ve come, but right now, it’s still hard.


Reader Writes In: Has anyone else dealt with PE’s and RA? Share in the comments.


Editor’s Note: Thank you, Ruth, for sharing your story with BCRN. Connect with Ruth, 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.