Make Prevention A Priority

You’ve heard it said before: “An ounce of prevention is worth a pound of cure.” Or, if you haven’t, it means it is often easier to stop a problem before it happens rather than to stop it later. Health and wellness are no exceptions, but what about when something like a global pandemic throws the world off its axis and routine healthcare is no longer a priority?

Two years ago we would have said that’s highly unlike, yet that’s exactly what happened for hundreds of thousands of people. According to the U.S. Centers for Disease Control and Prevention, an estimated 41% of U.S. adults reported having delayed or avoided medical care during the pandemic because of concerns about COVID-19, including 12% who reported having avoided urgent or emergency care. 

As the pandemic took hold, routine — and even emergency — healthcare fell by the wayside. As a result, so did prevention. Some problems and illnesses that may have been prevented in the early stages, became a bigger problem as time went on. 

I had a stomachache in October of 2020 that I ignored for several days. I didn’t particularly want to go to the doctor during the pandemic, especially for a stomachache. In reality, though, I was in pain from severe internal bleeding, and I needed emergency surgery to stop it. Although I am fully healed from that experience now, it remains difficult to think about “what if” I would have delayed seeking care for any longer than I did.

Medical care was also not something I avoided entirely during the pandemic. While regular office visits with my hematologist carried on uninterrupted virtually, I still visited the hospital lab in-person every couple of weeks to have my INR monitored because I take warfarin. I also kept my annual wellness visits with my gynecologist in person because their office made me feel really safe.

Yet, for all the routine things I did do, there was also something I chose not to do. Aside from ignoring what I thought was a stomachache, I determined that things like the eye doctor, the dentist, primary care, and an annual dermatology visit could wait a year (or two) before I went into the doctor’s office again. After all, I still saw my hematologist regularly and all of my doctors were informed about my surgery. 

Now, we’re living in a world that may never return completely to normal, so it’s time to re-connect with my healthcare team and make those annual wellness visits I skipped previously a priority. 

Surprisingly, it hasn’t been that hard to get back on track. As someone who struggles with health anxiety, it’s been empowering to feel like I am in control of my health again. It feels good to know that there aren’t any current problems lurking that I could have known – and done something about – sooner. 

Make prevention a priority for your health.

How can you get back on track with your health and wellness? Make prevention a priority and reconnect with your healthcare team about your health. This might induce things like routine eye and dental exams, physical check-ups, mammograms, colonoscopies, gynecological exams, or going to the doctor to find out why something is bothering you, causing you pain, or doesn’t seem quite right. It also includes talking about your risk for blood clots and how you can take steps to reduce your risk.

Tips to get your healthcare on track. 

  1. If you don’t know where to start, start somewhere. You can make an appointment with your primary care physician or doctor who handles most of your routine care. Discuss any concerns you have, how you have been feeling, and make sure your prescriptions are up to date. It’s a good time to have regular tests done (cholesterol, blood sugar, blood pressure, etc.). It’s also a good opportunity to get any referrals to specialists that you might need or to discuss any specialized care that you’ve been considering. 
  2. Make blood clot prevention a priority. Discuss your risk for blood clots, and ways to reduce your risk. If you’ve experience a blood clot, it’s a good idea to periodically evaluate your treatment plan with your healthcare provider.
  3. Update your records. Make sure all of your doctors and pharmacy have your updated insurance information (if applicable) and also find out what benefits you have to use. Many wellness and preventive services are fully covered by insurance. If you need help affording your prescriptions, talk to your doctor about your options and visit my resources for some helpful links.
  4. Don’t forget about your mental and emotional health. The pandemic has been a difficult and stressful situation to navigate. If you need to, schedule a follow-up or seek out an appointment with a mental health provider. Visit my resources about emotional recovery.
  5. If you’re not happy or comfortable with any or all of your providers, now is a good time to start fresh. Don’t be afraid to seek out new or different care that better suits your needs. Here’s a tool to help aid you in your search for a doctor.

Have a conversation about blood clot prevention.

Whether you’ve experienced a blood clot or not, it’s important to include blood clots in your wellness (and prevention) discussions. Know your risk factors and make a plan, along with your doctor, to help prevent blood clots. This includes evaluating your current treatment and follow-up if you have already experienced a blood clot.

If you are a woman who is taking or considering taking hormonal birth control, it’s especially important to discuss your risk for blood clots because birth control methods with estrogen can increase your risk for blood clots. Estrogen-based birth control was a blood clot risk factor for me, and I never even knew about it.

The Rowan Foundation is focused on educating women about their blood clot risks and their options. It is a great resource for information and tools that you can take with you to your appointment. Download this Risk Assessment Tool or save it to your phone to discuss at your next doctor’s visit.

Know the signs and symptoms of blood clots too, and if you have any, be sure to contact your doctor or seek medical care right away. Signs of a blood clot in the leg or arm: pain, swelling, redness or other discoloration, and/or skin that feels warm to the touch. Signs of a blood clot in your lung: chest pain, shortness of breath, coughing or coughing up blood, and/or a fast or irregular heartbeat. 

Share your story to help raise blood clot awareness and make a difference.

If you’ve been impacted by blood clots, it’s also a good time to share your story. Our stories are often the catalyst for change. By sharing your experience with blood clots, you might make the difference for someone else who doesn’t know or is delaying seeking medical care. 

You can also connect with the Rowan Foundation to share your story, and while you’re there, take a moment to read about Alexandra Rowan. She lost her life to a blood clot in her lung caused by hormonal birth control. Her spirit continues to inspire the work that I do and her story is forever imprinted on my heart. 

While not every loss may be prevented, I do hope that by sharing our stories – and by sharing information about blood clots – we can make a difference. A cornerstone of this effort is work the Rowan Foundation is doing to increase awareness and ultimately reduce the number of lives lost to preventable blood clots.

As you move forward with your healthcare and wellness plan, make blood clot prevention a priority and if you need help or aren’t sure about something, seek care sooner rather than later to address any concerns that you may have. 

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

Reader Writes In: How are you prioritizing your healthcare this year?

Share your story in the comments.

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?

Share your story in the comments below.

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?

Share your story in the comments below.

 

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?

Share your story in the comments below.

Eight Years of Hope and Healing

I only remembered that today was the day, eight years ago, that a blood clot in my lung changed my life because my phone reminded me. That little event reminder popped up and said “PE RUN” like it does every year. I saw it late last night. As I drifted off to sleep, I thought about what I wanted to say today. The answer eluded me by morning, and so, I went about my day not giving it much more thought.

Eight years ago, it was a Saturday. I went for a short-for-me run of about two miles. I had been recovering from a marathon months earlier, or so I thought, and I knew getting back into running would be difficult. Still, after those miles, the familiar pain from an overuse injury started in my calf, but then something new happened. By later that morning, walking was difficult, and my whole leg hurt. I took a nap, and I woke up with pain in my side. I took a hot shower, and convinced myself I had a bad side stitch. I thought it was all related to my run – but it wasn’t. By Sunday night, I could not breathe, or lay down flat, or walk very far without excruciating pain. I still thought I was fine, though. My family called my primary care doctor who called me. I told him how I felt, and he told me to go to the hospital because he believed my life was in danger due to a blood clot that broke off from my leg (DVT) and traveled to my lung (PE). He was right, and I spent the better part of a week in the ICU as doctors worked to stabilize my condition and find out what happened.

My story is not unlike a lot of other people’s stories. I chose to tell it in a public space, though, because I wanted other people to know that blood clots can happen to anyone, even younger people who are active, trying to eat right, and losing weight. I wanted other people to know that the signs and symptoms of blood clots could save your life, or save you the pain and years of recovery that I went through when mine went to my lung. I wanted people who have been through a blood clot to know that recovery can be extensive, or difficult, and that it isn’t just physical. I wanted people to know that depression and anxiety might be something they have to deal with too. I wanted people to know that grief can happen without death. Grief can happen when your whole life is changed unexpectedly. I wanted young people who had a blood clot to know that younger people like them were out there, feeling alone and hopeless. I wanted to make a difference, so I started this blog.

A lot has changed for me in eight years. Physically, I am recovered from my blood clots. I do not suffer from long-term complications with my leg or with my lungs. I do, however, continue to take warfarin because of the underlying reason for my blood clots, which is an autoimmune disease called antiphosphlipid syndrome, or APS. APS can increase a person’s blood clot risk. I was diagnosed with APS in the weeks following my blood clot diagnosis, and since there presently is no cure for APS, I will continually treat it. The best way to do that is by reducing my blood clot (and stroke) risk, so I take a blood thinner called warfarin. It is the best option for me, and it doesn’t interfere with my life to a great extent. I go for venous blood draws every 3-4 weeks because warfarin needs monitored to ensure it is working properly, and I see my hematologist every few months as part of managing my condition. APS can be a scary diagnosis, and there are times I do wonder what the future holds for me, but for the most part, I live normally with it.

Emotionally, I have recognized and worked to overcome some of my greatest challenges just in the last year. This meant addressing my lingering anxiety and post-traumatic stress disorder, or PTSD. Facing the fact that I was struggling with trauma beyond anxiety was not an easy realization to come to, and I did not arrive there on my own. I survived; I didn’t need help. But, I did. Skyrocketing blood pressure every time I met with my hematologist (but normal everywhere else and every other time) led him to address the topic with me, and in turn, he recommended a specialized therapist for me to talk to. Medical PTSD is a real-life thing, and trauma compounds upon trauma, so it can build upon previous experiences in your life. Listen, if your emotional state after a blood clot is causing you to not be able to function – eat, sleep, think, work, enjoy life – normally, talk to a trusted medical professional. If you are consumed emotionally by what happened to you, seek help. As it was shared from my doctor to me: You did not survive physically to suffer emotionally.

Now, I can finally say, with this passing year, I am no longer haunted by the memory of my experiences. I remember the pain, but in truth, it’s not specific now. I remember it “hurt more than anything in my life,” but I don’t remember exactly what that felt like. I can hear stories – your stories – and not be consumed by my own experiences. I can tell my story and not be overcome with my emotions. But, all of this doesn’t mean I don’t have work to do, or that BCRN is going anywhere. For me, it means I have arrived at a new place. A place where I am now better suited to providing support and resources for people who are back where I was eight years ago. My simple motto remains the same now as the first time I wrote it on the day I launched this blog: There is hope for healing from blood clots and you are not alone.

There is still hope.

You are still not alone.

Hope for healing remains the cornerstone of the work I do here now. If you have been diagnosed with a blood clot, or if someone you know has, there is a wealth of blog posts detailing my recovery experiences, as I was experiencing them: Visit www.BloodClotRecovery.net. There is a community of peers waiting to support on your journey: Join the BCRN Group on Facebook. There are regular posts and messages that I share on social media as often as I can: Follow me publicly on Facebook and on Instagram.

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

Reader Writes In: Where are you in your recovery journey? Are you just starting out or has it been some time? How have things changed, or not, for you?

Share your story in the comments below.

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.

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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?

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