Blood Loss on Blood Thinners

If there was ever a time to not visit the hospital, during the COVID-19 pandemic felt like it, yet, that is exactly where I found myself in late October 2020. I woke up with a stomachache on Monday morning, and by Tuesday night, I was in the emergency room. A trauma surgeon explained the process of exploratory surgery to find the cause of internal bleeding, which led to severe blood loss and over half the volume of blood that was supposed to be circulating in my veins in my abdomen.

Title: Blood Loss on Blood Thinners

Fear of being exposed to COVID-19, at least outwardly, was not why I didn’t go to the emergency room, though. While it may have been somewhere in the back of my mind, I just didn’t think anything was wrong other than I ate too much cheese which interfered with my normal digestive process. I had, in fact, been in touch with two of my doctors over the course of those two days, and I was treating what I deemed to be constipation at home. I wasn’t aware that I was experiencing other concerning symptoms, or that I had called my doctor urgently for help on Tuesday night, until my husband came in from working outside and saw me doubled over on the couch. My lips were white, my eyes were fluttering, I was dizzy, and I couldn’t answer any of his questions. When he looked at my phone, I had multiple messages from my doctors telling me to call 9-1-1, so my husband called 9-1-1.

When emergency services arrived at my house, they said all of my vitals appeared to be normal, other than an elevated heart rate. They asked me if I suffered from anxiety. I told them I did, but that something wasn’t right. I told them my stomach hurt and I couldn’t eat or drink anything. They asked me to get up, and when I did, I fell over, unable to stand on my own. They brought their equipment inside, put me on the stretcher, loaded me in the squad, and then transported me to the closest hospital. My fears of COVID were overshadowed by the feeling that something was horribly and terribly wrong.

In the emergency room, things began happening very quickly. The hospital I ended up at was not part of the system I normally received all of my care from, so they had none of my medical history on file, and I frantically shared clotting history and that I was taking the blood thinner warfarin. I knew something major was happening, and I knew if I communicated nothing else, it had to be this. An IV was started and blood was drawn. I also received a catheter, something I never had before, and was sent for two CT scans and an ultrasound of my abdomen. I briefly wondered where my husband was, but assumed he couldn’t see me due to COVID-19 restrictions. I later found out he had trouble locating me at the hospital because they had my maiden name down.

It was soon determined I was likely suffering from a gynecological issue, and it felt like hours went by while they tried to determine the source of my pain. My husband and I both asked someone to check-in with my hematologist and were met with resistance due to the hospital I was at being in a different network than he was. I became increasingly concerned, and increasingly hysterical, as the pain escalated. I asked to be transferred to the hospital where my hematologist saw patients. What felt like hours went by with no answers, and waiting is the worst feeling.

I was never more relieved than when a trauma surgeon entered the room and told us the news, “Your pain is from blood loss. Over half of your body’s blood is in your abdomen area and we don’t know why or what’s causing the bleeding, because there is too much blood there to see anything on the imaging scans. We can’t move you because, frankly, you don’t have time to get there. We have to do surgery right now and an operating room is being prepared for that.” His eyes were kind and caring as he said, “We still have time to act, but we need to act right now.”

I stared at him in disbelief and then asked two things, “What is my INR and when is someone going to talk to my hematologist?” My INR was only slightly elevated, and the surgeon – unaware that I had a hematologist – called him right away, even though it was the middle of the night. I heard them work out a plan to control bleeding during surgery, and possible clotting afterwards. I heard my hematologist tell me I was in a good place and needed to stay where I was.

Nothing happened as fast as what happened next, not even when I was faced with a life-threatening blood clot in my lung. My very tiny make-shift-pandemic-proofed emergency room filled with nurses while they tried to find acceptable veins to administer fresh frozen plasma to reverse warfarin, the blood thinner in my system, and then a blood transfusion to reverse the blood loss. A regular transfusion wasn’t enough, so they gave me several rapid ones in a row. The transfusions of blood hurt incredibly due to the speed, although I am told that is an unusual reaction.

The surgeon explained that he would make small incisions in my stomach for a camera to explore for the source of the bleeding, but if he couldn’t find anything, he would have to make a large incision to see for himself. He explained time was not on my side, but the surgery should only be a couple of hours, and I was whisked away down the hall. I never had surgery before, and if I ever needed it, under dire circumstances was not how I envisioned it. As I wheeled down the hall, lights flashing by above my head, the only thing I could do was let go and let someone else be in control – it couldn’t be me anyway. I trusted my hematologist and decidedly my newfound surgeon. I focused on that trust as I fell asleep within seconds in the operating room.

I woke up some time later – although I had no idea nearly a day had gone by – in a room by myself with a tube down my throat, restrained to the bed and unable to speak or move. I panicked and thrashed about as much as possible, hoping someone would hear me. Nurses ran in and one said, “You’re okay, but you had a complication and you need to rest until you can breathe on your own so we’re going to help you do that.” Breathe on my own? No one told me about this. If this is how surgeries went, I never wanted to be a part of another one. I would wake up two more times in a state of distress before I had the ventilation tube taken out of my throat and was able to breathe for myself. Once that happened, all of the details were shared with me about my ordeal.

It was not entirely normal. The surgery went fine, and the surgeon was able to find the cause of my bleeding with laparoscopic surgery alone and no large incisions: A ruptured cyst on one of my ovaries caused a bleed that didn’t stop. When I was coming out of anesthesia, however, I had a complication. I stopped breathing and required CPR and a ventilator to stay alive. That part was unexpected, but an experienced anesthesiologist recognized the problem within seconds and acted accordingly to save me. Between my surgeon, the anesthesiologist, and the hematologist who has cared for me for a number of years, I feel grateful to have received extraordinary care.

I spent several days in the hospital, and was advised that once home, it could take months to recover fully from the surgery and blood loss. When I was in the hospital, I felt like I would never get better, and once I was home, it felt like it would take forever. What I have found, though, is that this recovery has gone much smoother than my recovery from blood clots. My incisions are nearly healed, and I feel better each day.

I have had numerous follow-up appointments, and it was determined that a rupturing ovarian cyst is something that happens in a small percentage of women, and when it does, most women feel pain, but not many would bleed to the point that I did. It is believed that the bleeding caused my coagulation factors to become depleted, which in turn caused my INR to steadily rise, which caused the bleeding into my abdomen to continue. My blood couldn’t clot the wound. I, as a result, began experiencing signs of blood loss and shock, but I wasn’t aware of them.

My message after facing life-threatening blood loss and emergency surgery isn’t different from my message after facing a life-threatening blood clot in my lung: Listen to your body and don’t delay seeking help. I do, however, have a greater understanding of what I need to listen to my body for. Pain has been an indicator that something is wrong. Pain that is new or different, pain that doesn’t go away, or pain that gets worse means that I need to seek help – and quickly. Waiting to see how I feel, or if I feel better, is not an option. And all anxiety and doubts in myself aside, If I have a suspicion that something is seriously wrong, it probably is.

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

Reader Writes In: Have you experienced bleeding while taking a blood thinner? What was your experience like?

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STOP Your Anxiety

A lot of people ask me, “Do you ever worry about another clot?” Sometimes, but not daily, and only if I have a reason to worry. So then they ask, “How do you not worry?” It’s not that I don’t worry – I do – but what I don’t do is let the worry consume me, or stop me from living my normal life. Read on to discover the tools I use to help stop your anxiety, especially about blood clot recurrence.

On my list of things to worry about, a recurrent blood clot is not near the top of the list, surprisingly. While I do struggle with health-related anxiety, it stems from the next unexpected thing that might take me off guard. My blood clots came out of nowhere – nearly ending my life – and I worry more about something else like that happening. Still, there are some times when I worry that I have a blood clot again, and I wonder what that means for me if that were the case: Is my blood thinner suddenly not working? Or, is the disease that caused my blood clots – antiphospholipid syndrome – causing another problem? In this way, I don’t worry about another clot, but I do worry about what one might mean. I won’t know until (or if) it happens, and I can’t control that any more than I already am by taking my medication, going to follow-up doctor appointments, and managing my INR with a healthy lifestyle and regular checks. What I can control is what I do if I think I might have another blood clot.

Occasionally, if my left leg hurts my immediate thought is “blood clot.” This doesn’t happen every time I notice something different with my leg, but once in awhile if I have a pain that feels like a pulled muscle, because that is what my blood clot felt like at first.

Not too long ago, I felt this type of pain in the care on my way to run an errand. All the way to the UPS store and back I thought, “This is it, what if I don’t make it through this one?” Then, I remembered what I learned in counseling: Anxiety is a never-ending race track, I’m the race car, and I need to put on the brakes – before I crash. I pushed the brake pedal and put it in park – figuratively and literally as I returned home and pulled into my garage.

I have a very specific checklist that I go through if I’m worried about a blood clot. It helps me stay calm and act accordingly. In this example, I didn’t think it was a blood clot, and below is the checklist I go through to put my worry in park. I also included my answers to myself.

  • Is this pain the the same exact blood clot spot? No, it’s not.
  • Does it feel like a blood clot with regard to pain? No, not even close, it just feels like a cramp.
  • Have you done anything different with your treatment that’s worked for you this far? No, I took my warfarin last night and at last check, my INR was in range.
  • Could anything else have caused this pain? Yes, I did not get up from my desk enough times to move around today.
  • Does anything help it to feel better? Yes, stretching and moving around helps.
  • Did stretching and moving help your blood clot? No, not even a little. It made it worse.
  • Could it also be a blood clot? It could, but so far, it’s not feeling like it. If it does, you know what to do, or where to go.

There are also some very clear things that would lead me to seek medical attention without further questioning:

  • Pain in my leg and in my lung that doesn’t go away with rest
  • Pain in my leg that interferes with my inability to walk
  • Difficulty breathing or being unable to talk in full sentences
  • Being unable to lay down flat

This is not to say that coming to this conclusion is easy or that it happens overnight. I have to work really hard to think about these very clear questions and answers, rather than panic first. Sometimes it even takes a visual to remind me to get off the track, like a STOP sign or parked race car.

Your questions and answers might be different, and as always, if you can’t decide if you have a blood clot or not – or if you suspect that you do – seek medical attention right away.

Blood clots can happen to anyone, even people who are younger, active and healthy. Learning the signs and symptoms can help you avoid a potentially life-ending situation. You can read about them, and about what I felt, here. It’s also a good idea to see if you have any known risk factors for blood clots. You can read more about those here. And, just about anyone can take steps to help prevent blood clots before they become a problem. Here are some of my thoughts about that.

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

Reader Writes In: Do you worry about a repeat blood clot? How do you handle your worry? Have you experienced a repeat blood clot?

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The Falling Downstairs Story

Falling downstairs is something that will give anyone a scare. Falling downstairs on blood thinners, which can increase bleeding and bruising risk, is even scarier. Falling downstairs on blood thinners in the middle of a worldwide pandemic might be the scariest of all. When it happened to me, right after our state went into isolation, I was too embarrassed to talk about it. My husband, however, insisted that if I went through it, maybe my experience could help someone else in the same situation. He might be right.

These are the stairs in my house. This picture, taken from the top, is not an exaggeration of how steep and long they are.

Let me back up: My house is nearly 100 years old, and it has two staircases. This one and the one leading down into the basement. The main one, which is pictured above, is the most treacherous of all. If you’ve spent any time in a house as old as mine, well you know the stairs are precariously steep, narrow and sometimes long too.

I knew when we bought this place that it would happen eventually. I knew that I would go flying down them (not on my feet). We’ve lived here for nearly eight months now, and I am surprised it didn’t happen sooner. What I didn’t know is that falling downstairs would it would happen during the COVID-19 pandemic when a trip to the doctor or ER was not necessarily at the top of anyone’s to-do list. That was what I was thinking my entire way down that day: I will probably just bleed to death because I’m not leaving my house.

I don’t exactly know how it happened. One second I was standing upright, and the next, I was flying like I was on a waterslide. I hit hard, really hard, about halfway down. Then I slid the rest of the way to the floor. I banged my wrist and my behind. I thankfully did not hit my head. My husband, who witnessed it all from the kitchen, looked horrified. He said: “Do you need to go to the hospital? Who falls down the stairs on a blood thinner in the middle of a pandemic!?”

That would be me.

I got up. I wasn’t broken, but I felt panic creeping in. There was a pandemic outside, and I just fell down the stairs! I put on the brakes – STOP – something I have worked on with my therapist to curb spiraling thoughts. My mind is the race car on the track, and I can put on the brakes. It’s easier said than done in times of panic, but I’ve been working on it and it does help.

I said it out loud: STOP

I assessed the situation: I wasn’t outwardly bleeding – a very good thing. My arm hurt, and it was turning red. It was noticeably swollen. I made a choice to take action: I messaged a friend. She told me about the times she’s fallen on blood thinners. She said put ice on it for the swelling, so I grabbed the frozen green beans, and then I walked to the couch where I gingerly sat down.

STOP.

I assessed some more: I still wasn’t bleeding and nothing was where it shouldn’t be. My limbs were working, and I could walk fine. I didn’t see any immediate bruising. I assured my husband again that I did not hit my head. It hurt, but my arm moved and bent normally.

I kept a close eye on the situation for any abnormal bleeding or bruising that night. Everything looked like I would expect the next morning – normally bruised and still red in some spots. The swelling in my arm was just a small painful knot.

I knew I did not need emergency medical care, because everything was as normal as it could be, but I still needed to know that I was okay. So, out of caution, I got my INR checked at the lab, which involved leaving home. I had been to the lab at the start of the pandemic a few weeks prior, and I felt safe with the processes in place (temperature checks, spaced out appointments, minimal time spent waiting and getting the draw), so I went again. When my doctor’s office called with the results (it was in range), I let them know about the fall. We agreed I did not need medical care. I was reassured by my normal INR result that I most likely wasn’t bleeding anywhere I shouldn’t be.

Falling on blood thinners can be scary, but you shouldn’t experience anything entirely unusual. You might bruise easier, which some people do. If you really hurt yourself and are bleeding or notice unusual bruising, call your doctor right away – even during the pandemic. If you require emergency medical attention because you broke something or have a head injury, go to the hospital – even during the pandemic. The COVID-19 pandemic is scary, but doctor’s offices and hospitals have processes in place to protect you from being exposed. If you need emergency medical care, please seek it, as you normally would

Falling downstairs, or any at-home accident or injury can be scary, especially if you take a blood thinner, which can increase your bleeding and bruising risk. But, you also must remember that for the most part, you are in control of your situation. You have to discern what requires medical care and what doesn’t, based on what you know about yourself and your medical situation. If you can’t do that, call your doctor or 911 to ask. Many insurance companies also have a nurse line you can call for guidance.

  • You can learn more about a head injuries and when to seek medical care here.
  • You can read more about bleeding and bruising and when to seek medical care here.

Take care of yourself physically, be kind to yourself emotionally, and you’ll probably be just fine.

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

Reader Writes In: Have you had a fall or accident while taking blood thinners? How did you handle it? What is one thing you would share with someone else?

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Telemedicine During the Pandemic: Is it For You?

Since the coronavirus pandemic, medical offices and doctors are changing the way they conduct appointments to avoid face-to-face contact, when possible. Many are having virtual visits, and as a result, telemedicine is vastly becoming the way of the present. Now, you can often meet with your doctor from the comfort – and safety – of your own home. Whether you’re wondering if telemedicine during the pandemic is for you, or you’re preparing for your first virtual visit, here are my tips for success.

I recently had my first telemedicine appointment with my endocrinologist. I have been seeing her for a couple of years, but I still wasn’t sure how a virtual appointment would go, or if it would be awkward (Quick answer: It wasn’t and we’re probably doing it again in October). There were several steps that went into it, and I am sharing them here with the hope that it can help you prepare for your virtual appointments, or at least to not worry about them (if you don’t care to read about how my appointment went, scroll down for my tips and FAQ).

Unlike an in-person appointment, there was some additional preparation involved, particularly for the first one. A nurse from my doctor’s office called me about a week ahead of time to get me set up in the virtual waiting room, or computer system. She emailed me log-in credentials, a test link to make sure I had the equipment to do it (basically a device with a microphone and camera – the program told me I was good to go), and she explained to me how it would work. I was instructed to check-in to the virtual waiting room 15 minutes before my appointment start time, and I was allotted a one-hour appointment with my doctor.

Two days before my appointment, the nurse called me back to confirm and asked me for any vitals I had recently obtained (height, weight, temperature, blood pressure, date of last menstrual cycle, medications I am taking and pharmacy). I had some of these things to share, and she told me not to worry about the rest. I then received a text message the morning of my appointment with a reminder and a link to the virtual waiting room. I used my laptop for my appointment, but the particular software my doctor’s practice is using also has a phone app that you can download for free and use.

I met my doctor online (I was early, and she was on time), and surprisingly, the appointment went really well. It went a lot like any other appointment. She asked how I had been since the last time we met and if there were any changes to my situation or health. We spent time talking about my thyroid health, my overall health, the current pandemic, and the roll of telemedicine for the future. She verified the names and contact information of my care team, because she said doctors will most likely be collaborating more to share vital information. She planned to message them all with a summary of our appointment. She answered all of my questions, and I felt like I had plenty of time to ask what I wanted or needed to. We have a virtual follow-up planned for October, which her office will call to schedule with me next week.

Telemedicine During the Pandemic: My Tips to Help You Succeed

Below are some of my tips to help you feel confident in meeting your doctors virtually.

Be Ready for Your Appointment

Whether you have an in-person or virtual appointment, it is important to prepare in advance. I felt like I had a little bit more preparation to do for my telemedicine appointment, rather than an in-person one, but I think it’s simply because it is a different process and circumstance. There are some things you need to do to prepare:

  • Ensure you have some type of communication, either by phone or email, with someone at your doctor’s office ahead of time to confirm the details of your appointment. This is most likely already happening if you have a virtual visit planned.
  • Make sure you have the technology you need to participate ahead of time (a computer, tablet, phone, software or website, passwords, etc.). Don’t wait until five minutes before your appointment to get all set up. Along those same lines, make sure your device is fully charged before your appointment,
  • Find a quiet place where you can attend your appointment without distraction or disturbance. I closed the door to my office, used headphones to hear, and checked what was in my camera background prior to my appointment.
  • Find out if you need to have any vital information (height, weight, temperature, blood pressure, medication lists, etc.). Find out if, or how, those things will be obtained if you do not have them. For example, my doctor said I can get these things from other in-person appointments I might still attend and share them with her, or she will see me at some point in the future to obtain them in person. It’s also a good idea to have your medication and pharmacy information right in front of you during the appointment.
  • Make a list of what you want to discuss, or questions that you have. There was a definite point in my appointment when conversation turned from my doctor speaking to my time to speak, and she directly asked me what I wanted to talk about. It’s up to you to get the most out of your appointment.

Be Proactive in Your Treatment & Care

Perhaps surprisingly, a lot can be done virtually. If you are monitoring a situation, do what you can to document it (take your temperature, your weight, take pictures of things like skin conditions or rashes to show your doctor, for example). Keep a log or journal about your health concerns, and record as much detail as possible, including new symptoms and changes.

I was pleased that I had such a long appointment with my doctor, and I used the entire hour that I had. One of the things I liked about it was that I felt like I had more time to discuss the things I needed to. It felt less rushed. I think that it is really important to have things to talk about at your telemedicine appointment, or if you don’t have anything to discuss, at least be prepared to say that when it is your turn to speak.

Be Patient

My doctor expressed that telemedicine during a pandemic is new for her too, and it has taken some getting used to. Keep in mind, different people have different abilities and skills when it comes to not only communication, but technology too. Your doctor may be dealing with many different people and situations, not to mention a process that is entirely new for him or her too. Have patience with your doctor, and with the process. Remember, on teleconferences you can’t both speak at the same time, so it can take a minute to not trip over one another when sharing information.

Embrace the Positive Side of Telemedicine

You don’t have to leave your home or location, and it cuts down on travel time and expense. It might prove to be a good supplement for routine in-person appointments while providing more flexibility and time to connect. You might be able to see your doctor quicker over the screen, rather than in-person, and it might be a good tool for quick questions or concerns.

Understand the Limitations

This isn’t perfect yet, although it is rapidly advancing. It can at times feel less personal to be on a teleconference, especially if you are not used to, and my doctor expressed that she missed seeing patients in person. Telemedicine doesn’t work for preventative procedures such as Pap smears, colonoscopies, or mammograms, so you might need to hold off on those until after the pandemic resolves. Most of the time, that’s perfectly okay to do, but if you’re not sure – ask your doctor. Telemedicine may not be the best solution for complex situations, either, but better suited for routine follow-up appointments.

FAQ: Your Telemedicine Questions Answered

Here are my answers to some of your frequently asked questions about telemedicine.

How do I know if I can see my doctor virtually?

All of my doctors who are conducting telemedicine appointments during the pandemic have reached out via phone or email. In the case of my endocrinology appointment, I had one scheduled and the practice called to let me know they had switched to virtual meetings for the time being. They walked me through the set-up process from there.

How do I get my labs drawn, or a prescription from my doctor?

My doctor is mailing me a lab slip to get some tests done. Since I already have to go get my INR checked regularly, I will take this with me next time I go. Remember, labs and doctor’s offices are not closed indefinitely, and some are not closed at all. Ask your doctor if you need to go right away, or if you can wait to get lab work in a few weeks or months.

Similarly, if you have routine prescriptions, get them re-filled ahead of time, as you always do. I needed a new one, so my doctor requested that – and it was filled by my pharmacy – while we were still on the phone. Most doctors who engage in telemedicine will also be able to electronically send in a prescription to your pharmacy.

What about things that need to be seen in-person?

I specifically asked this question during my appointment. Since this was about my thyroid, my doctor said there was a lot she could observe of my head and neck while we were talking, and she spent some time doing so. She said if she saw something that needed immediate attention, she would see me, or make arrangements for me to be seen somewhere. She said telemedicine is not a replacement for traditional medicine, but a supplemental tool for us.

What about emergencies?

Make no mistake, an emergency is still an emergency, and you should not avoid seeking immediate medical care if you have one. If you don’t know if you should go to the hospital or not, ask your doctor. If he or she directs you to the hospital – you need to go. Even during the COVID-19 crisis, the hospital is still the safest place for you to be if you have a medical emergency.

Is it secure since it is online?

I never felt like I was insecure, or that my personal information was compromised. The online web portal and phone app all had passwords and verification steps to ensure I was the one who was signing into the appointment.

How do I pay for my appointment?

This is a good question to ask during your set-up process. My doctor’s office will send me a bill in the mail or by email (I had a choice) for what I owe after my appointment is processed. I will have the option to mail my payment or pay online through the portal.

I think telemedicine during the pandemic is an excellent tool for both patients and doctors. I don’t think it can completely replace medicine as we know it – and it will not work for emergencies – but I do think it can broaden our options when it comes to established and routine care. In crisis situations, like the one we have during the pandemic – or simply in cases of extended travel – it provides options for people to still get the care they need. Some new appointments may even work well for telemedicine, like dermatology appointments. In fact, my dermatologist was the first one to contact me about still conducing appointments as planned – virtually. Also, counseling or therapy appointments work very well virtually for a lot of people. Preparation for your appointment is your best tool for success, so invest some time in getting ready.

Telemedicine is not, and will probably never be, a substitute for emergency care or urgent situations. It is also not a complete substitute for at least sometimes seeing your doctor face-to-face to foster basic human communication, care and compassion, but I see it working beautifully as a component to wholistic healthcare for many of us.

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

Reader Writes In: Have you had or do you plan to have a telemedicine appointment during the pandemic? Did you like it or not? Was it helpful?

Share your story in the comments below.

Blood Clot Awareness Month Matters

Blood Clot Awareness Month Matters

It seems like every single thing has an awareness day, week or month. Whether it is a food, a hobby, a profession, or a health condition like blood clots – there’s a time for it. It’s great to bring widespread, concentrated attention to a cause or event that is important to you. After all, it’s how some people might find out about it when they didn’t know about it before. It’s sometimes not so good because it can feel like the Internet is congested with traffic and why do we have to hear about “one more thing” for a day, week or month. Whether you get on board with awareness days or not, there is still something to be said for why awareness about blood clots matters.

Blood Clot Awareness Month Matters

Below, I share more of my story in detail, but more than that, I also want to share why Blood Clot Awareness Month matters to me, and why I keep talking about Blood Clot Awareness Month years after I have healed from my blood clots. Blood Clot Awareness Month matters to me for two distinct reasons. First, a little bit of knowledge about risk and signs and symptoms can often help to prevent a life-threatening situation. Second, if you have experienced a blood clot that has threatened or changed your life, there is hope for healing, and there is hope that you can recover and live your life again. You’re not alone, either, even though it may feel like it.

Know Your Risk for Blood Clots

Blood Clot Awareness Month Matters: Know Your Risk

I was 29 years old when I had a blood clot in my calf (also called deep vein thrombosis or DVT), which broke off and traveled through my bloodstream to become a life-threatening blood clot in my lung (also called pulmonary embolism or PE). At the time, I was running half marathons, and I was working to achieve all the things you do to lead a healthy life: Exercising, eating right and losing weight. I didn’t know that blood clots can happen to anyone, or that I could be at risk, because I was doing everything right by taking care of myself.

After thorough investigating and testing by my medical team, it was determined that my blood clots did not have to do with things that generally go hand-in-hand with an unhealthy lifestyle (being overweight or sedentary, as an example), but that I had a somewhat rare acquired (not inherited) autoimmune clotting disease called antiphospholipid syndrome (also called APS). Blood clots are a common thing that can happen in people with APS, along with pregnancy complications in women, heart attacks and strokes. Along with blood clots, I also had low platelets as a result of APS, which can cause too much bleeding, making my situation complex and serious. I’m fortunate to have a hematologist who is skilled in managing difficult cases like mine.

Why Knowing Your Risk for Blood Clots Matters: Even if you do not think you could be at risk for blood clots, know that you could be. Below is a list of the most common risk factors. Look over them, discuss them with your doctor, and keep them in mind.

Know the Signs and Symptoms of Blood Clots

Blood Clot Awareness Month Matters: Know the Signs

While I may not have known my risk in particular for blood clots, so there was nothing I could do to prevent them with regard to that, I also did not know that anyone could be at risk, so it never occurred to me to know the symptoms of blood clots. The signs were there, I just didn’t know it.

I felt lingering, and then excruciating pain in my left leg, primarily when I put weight on it. Within a matter of a day or two, I also felt sharp, stabbing pain in my left ribcage and found it hard to breathe, particularly when I tried to sleep. I could not talk in full sentences. I thought both of my pains were related to running and fitness. I thought the pain in my leg was the return of a knee stabilization issue resulting in a pulled muscle, and I thought the pain in my side was due to running too fast while dehydrated.

As someone who was physically active, both made perfect sense to me at the time. I never thought to question the pain in my leg. If I had, perhaps I could have avoided a life-threatening situation when the blood clot traveled to my lung. I had about a day and a half between the two events, but since the pain in my leg steadily and noticeably worsened during that day and a half, looking back, I should have gone to an urgent care. Looking back, the signs were clear that this was not a normal running injury or pulled muscle.

Why Knowing the Signs and Symptoms of Blood Clots Matters: Even if you don’t have an identifiable risk factor for blood clots, or might have a story like mine, knowing the signs and symptoms of blood clots could still save your life. People can experience all, none or some of the symptoms. Knowing them saves lives. Below are the most common signs.

Know What Blood Clot Recovery Can Be Like

Blood Clot Awareness Month Matters: Learn About Recovery

I spent ten days in the hospital, where my life hung in the balance for several days, due to extensive clotting and bleeding concerns related to APS. After doctors stabilized my situation, I was sent home – with a wheelchair and an oxygen tank – where I would soon discover that I was only at the very beginning of what would be a long and painful journey (I’ve never been in so much pain before or since). It took me two years to physically recover from the blood clots, and a little bit more time to deal with the emotional trauma of facing the end of my life so young, and so unexpectedly. I will forever have to manage my disease and my clotting risk with medications and follow-up appointments.   

My experience changed the course of my life. It was only three months after my hospital discharge that I decided to start Blood Clot Recovery Network and share my story with the world. I wasn’t sure how that would go – you can’t go back after you share such personal details about your health online in today’s world – but I’m glad I took the risk. I want people to know there is hope for healing from blood clots, and if you’re going through a difficult recovery, you are not alone.

Why It Matters: Talking about the physical and emotional obstacles of recovery from blood clots is why I created this space, and why I continue with my work here to this day. If you are faced with an unimaginable situation after experiencing a blood clot, you are not alone. There is hope for healing.

If you think you might be at risk for blood clots, or if you don’t know, discuss it with a trusted doctor next time you see him or her. If you experience any signs or symptoms of blood clots, or think that you might be, don’t wait to seek medical attention. Call your doctor, and if you can’t get in touch with your doctor, go to the hospital or emergency room right away.

If you have a blood clot, find a doctor who can support you in what you are going through both physically and emotionally by either providing that care first-hand, or referring you to other resources. I entered my hematologist’s office for my first follow-up appointment the week of my hospital discharge, and the first thing we talked about was what my recovery would look like and how long it would be. Tell your doctor how you are feeling, from the start. If you’re not supported or don’t feel supported, consider finding another doctor who can help you. I know that’s hard when you don’t feel well, but it is so important.

More About Blood Clot Awareness Month

Learn More: Blood Clot Awareness Month Matters

Connect with my on social media channels where I’ll be having candid conversations about blood clot recovery and sharing encouraging reminders all month long. My most active profiles are my Facebook Page and Instagram. You can also find me on Twitter from time to time.

Join my Private Facebook Group for ongoing support where you will find me and a number of your peers. We’re approaching 6,000 members there, and I’m very excited to have created such a meaningful place for us to gather. I would love to reach that milestone this March, so if you’re not there yet, what are you waiting for?

Connect with the leading patient advocacy organization here in the United States: The National Blood Clot Alliance. If you want to help make a difference on a far-reaching scale, this is how you can do it. Visit here for all the ways to help raise awareness this month: Make the Choice to Stop the Clot®.

Spend some time connecting online too. Use one or more of the following hashtags in your online conversations: #hopeforhealing #notalone #AwarenessMatters #bcam

Why It Blood Clot Awareness Month Matters: Now, several years after my experience, I am no longer the only person publicly speaking or writing about what I have been through or sharing about how difficult recovery from blood clots can be. We are a community, and we have much to share and learn from one another.

Whether you decide to celebrate this month for Blood Clot Awareness or not, I hope you take a few moments to learn about your risk, and learn about the signs and symptoms of blood clots. If you’re in the midst of recovery or farther along in your journey, I hope you remember this: There is hope for healing from blood clots, and you are not alone.

Reader Writes In: How do you plan to participate in Blood Clot Awareness Month this year? I can’t wait to hear about it!

Share your story in the comments below.

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Sick After A Blood Clot? Here’s What You Need to Know.

Woman who looks like she is shivering with a cold or flu.

If you get sick with a cold or flu after a blood clot, it can feel more miserable than normal, and it can also feel like you don’t have options for symptomatic relief from coughing, fever, a runny nose, sore throat, or headache. Many medications – both over-the-counter and prescription – can interfere with blood thinners, especially warfarin, so many people may avoid taking them all together. However, if you are sick with an illness, it is often necessary to treat it, or to treat uncomfortable symptoms. Finding relief – and feeling better – are important. If you get sick after a blood clot, there are things you can do to feel better as soon as possible and get back to being healthy.

If You’re Sick After A Blood Clot, Talk to Your Doctor First

Being sick after a blood clot can be awful. Last year, I had the (respiratory) flu for the first time in my life, and it was the worst I have felt since my pulmonary embolism. At one point, I actually thought I may never recover, and that is how I knew something was going on beyond a normal cold. I had a fever, chills, body aches, coughing, a runny nose, sore throat, and a headache that scared me. My symptoms came on suddenly one afternoon, starting with a headache and a sore throat, while I was sitting at my desk. It felt like I was fine one minute and the next, I could barely make it to bed. Everything hurt.

After feeling this way for two days, I made an appointment to see my primary care physician. My husband drove me to the appointment, because I couldn’t do much of anything beyond make it to the car one step at a time. It was all too reminiscent of how I felt when I had my PE. My doctor confirmed I had the flu virus, and gave me some suggestions for managing my symptoms, which he said should subside in a few days to a week. We decided not to treat it with medication, since I was already halfway through it. He also told me if I wasn’t feeling any better in a week, or if my symptoms got worse, I needed to come back to see him. Being a respiratory virus, it is important to monitor the flu for further complications that may require hospitalization to treat, like bronchitis and pneumonia.

If you’re sick after a blood clot, don’t wait to talk to your doctor. Many illnesses can be treated – and their duration and severity shortened – with prompt medical care. I see my doctor if I have something that makes me ill for more than a few days. I also see him pretty quickly if I have anything respiratory going on. Talk to your doctor about when to see him or her in your situation.

Tips to Help You Feel Better When You’re Sick After A Blood Clot

Teapot and a steaming cup of tea.

In addition to working with your doctor, there are some things you can do at home to feel better when you are sick.

  1. Eat whole, healthy foods that feel good and nourish your body. That’s why, for most people, a steaming cup of soup broth tastes better when you are sick than when you are well (or when it is really cold outside – hello Midwest life). Remember, if you’re taking warfarin, don’t drastically change your diet. I make sure I am eating protein, yogurt, vegetables, broths, berries, and fruits (which are all part of my normal diet too).
  2. Stay well hydrated – with water. The last thing you want on top of an illness is more problems from dehydration. I also like hot tea with honey. and an electrolyte drink if I’m drinking larger than normal amounts of water, or for a little flavor. I try to avoid excessive sugar and caffeine. I steer clear of alcohol when I don’t feel well.
  3. Talk to your pharmacist (or doctor) about over-the-counter symptomatic relief. Chances are, there is a product you can take, even on blood thinners (even on warfarin). Your pharmacist will help you. They are a great, and often underutilized, resource. Mine gave me over-the-counter options for a clearing my sinuses that I didn’t even know I had. It worked, and my INR didn’t change.
  4. Breathe steamy water, use warm wash cloths or ice packs on your face, or saline rinses or sprays to relieve congestion and discomfort. I like to take a hot shower when I don’t feel well and breathe in all the heat and humidity.
  5. Look up over-the-counter drug interactions online, in addition to talking to your doctor or pharmacist. The information is out there and easy to access. You can use a resource like www.drugs.com. You should also read the product labels on any medications you are taking, and ask your pharmacist if you have any questions about the information. They are specific instructions about contraindications and potential interactions listed on all over-the-counter drugs.

You Know What They Say About Prevention

Soapy hands being washed.

“An ounce of prevention is worth a pound of cure” holds true during cold and flu season too. Take preventative measures to keep yourself from getting sick in the first place, if at all possible: Wash or sanitize your hands, wipe down the shopping cart, avoid touching your face/nose/mouth, avoid places and people where you might be exposed to illnesses or germs, and wear a mask if you think you might be exposed to illness or germs, like at a doctor’s office, hospital, or on a plane. Be sure to also ask your doctor if a flu shot would benefit you.

You can cut down on seasonal allergies and sinus issues by taking your shoes off when you enter the house, showering if you have been outside and exposed to pollens or grass, and by cleaning your home’s air vents/ducts and heating and cooling systems on a regular basis. Also, don’t wear your clothes that you wore outside and in public in your bed or to sleep in.

Be Smart About Changes

If you notice any changes in your health, or if you’re not getting better in a reasonable length of time, make an appointment with your doctor. If anything changes in my respiratory status (cough, congestion, breathing), or I’m not better in a few days, I make an appointment to see my primary care doctor immediately. If you can’t get a hold of your doctor, or if you have symptoms that concern you, go to an urgent care or the hospital. An urgent care is a great place to go to get immediate medical help for common illnesses and viruses that don’t require a hospital visit. If you have signs or symptoms of a blood clot in your lung, seek emergency medical care by calling 9-1-1 or going to the closest hospital.

Some illnesses require prescribed medications to treat and in some situations, it may still be necessary to take a medication, even if there are potential interactions with your blood thinner. It doesn’t mean those interactions will occur, but it does mean you need to be aware of the potential for them to occur.

Work with your doctor to identify any issues that are cause for concern, and know what symptoms to watch out for. If you’re taking warfarin, for example, you may need to have your INR monitored more frequently while you are taking a cold or flu medication or an antibiotic – and your dosage temporarily adjusted – to ensure your INR remains in range. Taking an anticoagulant should not be a reason for not taking care of your health, and your doctor can help you work through those challenges to stay, or get, healthy again.

There is hope for healing and you are not alone,

Reader Writes In: Have you been sick with a cold or flu after a blood clot? If so, how did you handle it? Please remember: We can’t make medications or treatment recommendations here, but we can share personal stories.

Share your story in the comments below.

Computer keyboard and a cup of coffee.

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