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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Cruising After Clots

I recently went on a trip to Alaska via cruise ship. Not only was it the first cruise I have ever been on, it happened after blood clots in my leg and lung several years ago. For people with clots, or people who are taking anticoagulants – also known as blood thinners – there are often special considerations to to consider when planning a vacation. These include things like travel arrangements, medication management, food (for some blood thinners), and access to emergency medical care. If you’re considering cruising after clots, here is everything you need to know to have a safe and wonderful trip.

Home Away From Home

It takes a lot of physical and emotional energy for me to plan a big vacation, and I spent several weeks getting ready to go. I researched a lot about cruising, talked to friends and family who have gone on trips, and called the cruise line with a myriad of questions on multiple occasions (that’s okay, they are prepared to answer your questions). I noticed that a lot of information about cruising with disabilities does exist, and while I don’t consider myself disabled, I do have special medical considerations that other people may not have. Despite this information being readily available, I still wasn’t sure what to expect, or how it would go, so I am sharing my experiences specifically to help people who have had a blood clot, or who take anticoagulants, plan and enjoy a cruise – because you can.

Misty Fjords

For me, cruising was an unusual kind of vacation, and one that I was not sure I would enjoy. I was nervous – definitely – because I felt like I would be far removed from medical care or supplies, if needed. In addition to that, Alaska feels really far away – and it is. It is also not easy get to from where I live in the Midwest (it was a full day of travel on the way there, and over a day of travel on the way back). Other thoughts plagued me too: What if there were no vegetables on board or what if they didn’t have vegetarian options for lunch? What if I got seasick? What if I just got sick?

Glacier Bay

Still, I couldn’t resist the call of such a wild, inviting, beautiful place. I have always longed to visit Alaska, so when the opportunity arose, I committed to going. The cruise I was on went from Vancouver (Canada) to Anchorage along Alaska’s Inside Passage, which is a popular coastal route for ships and boats along a network of waterways which weave through the islands on the Pacific Northwest coast of North America. It is home to Glacier Bay and an abundance of wildlife, marine life, waterfalls, and native plants. If you’re worried about being “at sea” for too long without access to shore – medical care, emergency care, pharmacies, or just solid ground – consider booking a cruise that is shorter and has daily (or near daily) ports. I felt infinitely better with this itinerary for my first cruise, rather than spending multiple days at sea.

Traveling after blood clots can take some planning, and perhaps even some slight modifications, but you can do it. If you want to go cruising after clots, here are my tips to help you prepare.

Cruising After Clots: What You Need to Know

  • Talk with your doctor. First, make sure it is recommended for you to travel, and travel via cruise ship. If you know it is okay with your doctor that you travel, and you are still nervous, make an appointment prior to your trip to discuss your concerns and what you can do about them.
  • If you take warfarin, make sure your INR is in range. I usually get my INR checked a few days before I leave, in case adjustments have to be made.
  • Refill your prescriptions and get a print-out of your medications from your pharmacist. There is nothing more troubling than being on vacation and having to find a pharmacy to refill medications you already take daily. While you are refilling your scripts, ask your pharmacist to print out a list of your current medications to take with you.
  • Know where you are going. If you are worried about needing access to medical care or a pharmacy while you are gone, do a little bit of research to find out what ports/cities will have these facilities available to you.
  • Prepare your Passport and travel documents. If you’re traveling through countries, have your Passport updated and ready to go. If you prefer, print flight tickets the night before. Also, print out your flight and ship itineraries, along with important phone numbers, and take them with you in your carry-on in case you need to make last minute changes.
  • Consider insurance and trip protection. If you would be in a serious accident and need to be evacuated from the ship or a rural area, it will be very expensive. Consider an affordable medical evaluation plan like MedJet Assist. Also, if you have the option to purchase trip protection in the event that you need to cancel your cruise due to injury or illness, it might be a wise investment.
  • Pack your medications (anticoagulants and others) to take with you on your person for the trip. Do not put your medications in your checked luggage – either at the airport or while using the ship’s luggage service. I found myself separated from my luggage on several occasions throughout the trip, but I carried all of my medication – for the whole trip – in my carry-on bag, which I kept with me at all times. The only time I did not take my medication with me in my carry-on bag was when we left the ship for daily excursions, then I left my medication in my room.
  • Dress for your destination and dress in layers. Be comfortable and take clothes that you would normally wear. For example, consider packing jeans/shorts, tops/shirts, a dress (or nice slacks and top/dress shirt) for formal nights (if you are participating – you do not have to); sweaters or sweatshirts, jacket, rain jacket/poncho/umbrella, scarf or wrap, swimsuit, sunscreen, toiletries, comfortable shoes for walking, shoes for relaxing (slippers, sandals), socks, special wear for any excursions you will be taking (hiking boots, insect spray, etc.).  
  • Bring or buy a reusable water bottle. I buy a liter of water once I am through airport security (save the bottle). You can drink the water from the ship, so I refilled my water bottle that I bought at the airport each time I left the ship. Be prepared to spend between $2-$4 per bottle on board if you want to buy bottled water to carry with you. 
  • Bring a backpack or hands-free bag with you. It can double as your carry-on and daily excursion/tour pack.
  • Portable cell phone charger. I like being able to call or use my cell phone at any time and never want to be caught in an emergency situation with a dead cell phone. You can order my favorite portable charger, and other favorite travel accessories, here.
  • Over-the-counter bleeding products. Bandages and sponges to control or stop bleeding are a part of my travel gear, no matter where I go. While they are not a substitute for professional medical care, they can help with minor injuries, or in controlling bleeding until you are able to access professional medical care.  You can view and purchase the products that I use and recommend here.
  • Take time (zones) into consideration. Depending on where you are going, you may need to adjust the time of day/night you take your medication. Ask your doctor about this ahead of time, and make a schedule to do so, if needed. I chose to take my medications at the same time I do at home, so I set an alarm to remind me due to the time difference in Alaska (it is four hours behind my home time zone).
  • Pack the prescription bottles. I took my prescriptions in the original bottles and took my pill case with me too. Once I was onboard, I filled my pill box as I normally do.
  • Be mindful how changes may impact your medication. I take warfarin, so a lot of things can interfere with my medication (food, alcohol, other medications, hydration, etc.). If you take warfarin too, be mindful of what can raise or lower your INR and avoid those changes, or talk to your doctor about how to best manage them. There is more information below about food and alcohol on cruise ships.
  • If you take warfarin, don’t panic about the food. I was worried about how my diet may be impacted on a cruise, since I take warfarin. I had access (daily) to the foods I normally eat (vegetables and vegetarian options included) through the cafeteria dining option. I also had a lot of extra options too. My encouragement to you is to eat as you normally would, and also try a few new things if you are so inclined. I tried escargot (it was salty) and Baked Alaska for desert (not a fan).
  • Know your limits with alcohol. It can be really easy to eat – and drink – a lot on cruise ships. I do not drink a lot of alcohol, so I did not purchase a package for alcoholic beverages. I did enjoy an Irish Coffee on the deck in Glacier Bay, which I knew I could handle without difficulty. Alcohol can interfere with blood thinners, so know your tolerance.
  • Consistency is key. With warfarin, and some other medications, it is important to be as consistent as possible in your food and drink choices. I didn’t find it difficult to be consistent on the cruise due to the wide variety of food that was available to me.
  • Take your own hand sanitizer. Ask anyone who knows me personally, and they will tell you it is not a secret that I don’t like germs. I was pleased t learn that the ship’s crew does not like germs either. Hand washing and sanitizer stations were readily available. I also brought my own – just in case.
  • Visit the on board infirmary/hospital upon your arrival. It is a good idea to know where it is in relation to your room, just in case you need it. You can also check the ship’s website ahead of time to see what kind of services they offer there (most are staffed with a physician to do basic medical care or to address emergencies until you can get to shore). Doing that gave me a lot of comfort and peace of mind.
  • Be prepared for sea sickness. I knew I was sensitive to motion, but I did not know if the ship would bother me. It did, and I was sick numerous times throughout. I wore SeaBands, which are non-medicine bands to help with motion sickness. They did help. You can view and purchase the ones I used here. If you aren’t sure what will work for you, talk to your doctor ahead of time about your options (bands, patches, medication). If you don’t know if you get seasick, be prepared and take something with you, just in case.
  • Know what to do in the event of an emergency. The cruise line/ship will help you with this on your first day. I was surprised to learn that cruise ships take safety very seriously and prepares you for any type of disaster that may occur by requiring you to attend a safety session (called muster) where you learn about life vests and boats, sanitation, the hospital/infirmary, evacuation, fire, etc. If you’re worried about being “at sea,” you can take a cruise that hugs the coast (like I did) or that has minimal days at sea without visiting a port.
  • Do what you are comfortable with – and have fun. I did participate in several shore excursions in Alaska, within my comfort zone (whale watching, boat tour of the Fjords, and a wildlife hike). Shore trips and excursions range from very easy to very extreme. Do what you are most comfortable with, and if you choose to participate in extreme activities, follow all safety precautions that are given to you.
  • If you take warfarin, make sure your INR is in range. I usually get my INR checked a day or two after I return home from a vacation.
  • Plan a day or two of rest. Traveling after the cruise was long and stressful – more so than other vacations I have been on – and I was very tired when I returned home. I think this is because the flight or drive is traveling, then the cruise is traveling, so it can feel like a lot of going and no stopping to decompress. I had to get back into the routine of what I do, eat, drink, etc. I was also very seasick when I arrived home (more so than when I was on the ship). If you can, build a day or more of rest into the end of your vacation (either at your final port or at home) to get yourself back on track and rest.

I don’t want anyone to be afraid to travel after blood clots. If I can share any resources to help you get out and do the things you have dreamed about, that is what I am going to do. With that in mind, here are my gifts to you:

Free Gift #1: Cruising After Clots Checklist

Free Gift #2: My Top Tips for Cruising Alaska

There is hope for healing and you are not alone,

Reader Writes In: Have you been on a cruise? Have you been cruising after clots? Where did you go? What are your top travel tips for cruising?

Share in the comments below.

FAQs and Contact Me

Seven Years Later

Blood clots changed my life. Now, seven years later, I am sharing where my journey has brought me.

www.BloodClotRecovery.net

Seven years ago, a blood clot in my leg (deep vein thrombosis or DVT) that broke apart and traveled through my bloodstream to my lung (pulmonary embolism or PE) nearly ended my life. I remember this day seven years ago pretty vividly. It was a Saturday, and I got up early to meet my training group and run a few miles. I had just returned to training after running a marathon in Florida after taking some time off to let what I thought was a knee injury heal. I was dismayed to feel the familiar pain in my calf, only this time it radiated down to my ankle too. I said goodbye to my friends, went home, and took a nap.

I woke up several hours later with a really bad cramp in my left side. It hurt to take a deep breath, and I pretty much said I was done with running. I blamed the cramp on dehydration and took a hot shower. That made me feel better, but I was still tired, and didn’t feel motivated to do anything or go anywhere. I laid on the couch most of the day, barely cooked dinner when my husband got home from work and went to bed early. It crossed my mind that it was worrisome that it hurt worse to lay flat then to slightly recline.  

Sunday morning, I woke up feeling worse, only my leg hurt to put any weight on it. It felt like I couldn’t catch my breath, so I resolved to take it easy and rest before going out to dinner for my sister’s birthday later that night. By the time evening rolled around, though, I called to cancel, stating I didn’t feel well. My husband and I tried to find an open urgent care, with no luck. My family called my primary care physician out of concern – I never bailed on outings like birthdays – and he called me on my cell to ask what was going on. I explained that I pulled a muscle in my side, and I could barely breathe or talk. I told him that wasn’t my concern though, my concern was that I couldn’t walk on my leg. The next 30 seconds of silence were the longest I have heard in my life. My doctor said, “You need to go to the nearest ER and if you’re not going to go, you need to tell me where you are so I can call an ambulance.” Alarmed, I asked why.

He told me he believed I had a blood clot from my leg go to my lung, and I was in immediate danger of losing my life. Bewildered, I told him I would go. He said, “which hospital?” and I named off a small one three minutes from where I lived. “No,” he said, “I need you to go to one with a trauma center. This is serious, and I’m calling ahead.” Now completely alarmed, I hobbled down the stairs and told my husband to drive me to the ER because I was dying.

I don’t remember much of the next week of my life. I was admitted ahead of a very long line at the hospital and within a few hours, I was diagnosed with a DVT in my left calf, and a PE in my left lung. None of it meant anything to me, and I was in too much pain to ask or care. My husband was told the next few hours were uncertain, and my family came to see me – one by one – in a strange ICU room where my bed was wheeled next to a crash cart for safety. I had one nurse whose job it was to watch me for the next 24 hours. I wasn’t allowed to move or use the bathroom. I blacked in and out of consciousness for the next several days as either pain or pain medications fought for control of my body and mind.

I work up a few days later in a different ICU room with my husband sitting next to me holding a doctor’s card that said “Oncologist” on it. I asked if I had cancer, and my husband said they had no idea what was wrong with me, but they were coming to talk to us soon. I fought to stay awake, only to hear that I had a disease I couldn’t pronounce. I fell asleep that day with a peanut butter and jelly sandwich in my mouth. It was the last thing I would eat for awhile aside from shakes to keep me sustained.

I was diagnosed with antiphospholipid syndrome, or APS, which is an autoimmune disease that, in simple terms, causes the body to clot when it shouldn’t. There is no cure for APS, and it can cause some pretty serious problems like blood clots, miscarriages in women, heart attack, and stroke. Doctors do not know why I have it, or what caused the disease to cause blood clots when it did. To this day, I don’t have any more answers than I did then.

Seven years later

I was discharged from the hospital about a week later in a wheelchair and with an oxygen tank. I was ecstatic to go home, but little did I know, my road to recovery would be long and winding. The next few weeks months were filled doctor’s appointments. I had my blood tested numerous times, and I had a couple follow-up scans to see if or how my clots were healing. I struggled physically with more pain than I have ever felt in my life. It hurt to do simple things like walk, talk, breathe and move. I needed help showering and getting to the restroom. The pain was unimaginable.

Emotionally, I faced more challenges in the coming months – and years – that I did not know I would face. My self-esteem was destroyed. I eventually lost the job I had then, and my personal relationships were tested and strained. Living in constant pain was miserable, and I lost all hope that things would ever get better. There were times I wanted to end my life because the pain was so bad. My dad encouraged me to keep a journal and write down what I was going through, so I could look back and tell other people what happened to me. I started writing bits and pieces of memories and days that made no sense to me or anyone else. From those journals, I started this blog, because I knew didn’t want other people to suffer like I was, even though I was suffering still. I wanted to know that I wasn’t alone, and I wanted other people to know they weren’t alone. Writing this blog helped me hang on in my darkest moments, when I often had nowhere else to turn.

Now, seven years later, I am physically healed from my blood clots, but not from APS. I take warfarin every day and have my blood monitored regularly to make sure it is working as it should, and I see my hematologist every three months or so. I am ever vigilant for signs a clot, even though I have faith in my medication that works to prevent clots. I live pain-free most days, although sitting or standing for too long can cause my leg to ache from time to time. I am also vigilant for signs of stroke and heart attack. Today, I consider myself physically healed from blood clots. Aside from medication and medication management, my life is pretty much the same as it was before.

Seven years later, I am emotionally healed from my blood clots, but that took a lot longer to do. It is just within the last couple of years that I can tell my story without crying, I can hear another story without crying, and I can separate what happened to me from what is happening, or will happen, to other people. My thoughts and emotions are once again safe with me, not recklessly rocketing through my mind. Now I just work to manage general anxiety about my health, stress, and try to obtain a good balance between life and work (that doesn’t always go so well). I’ve conquered some major obstacles, including a long-haul flight and vacation to Europe and several extended road trips, which are now some of the greatest memories that I have.

Seven years later, my life is nothing like what it was then. Sometimes, what happened to me feels like a very distant memory, yet with the work I do, not a day goes by where I am not reminded of how very real it all was. However, my thoughts have shifted to from “what I went through” to “what can I do.” I know that I have an important role in this community, and I know that a lot of people rely on my work here as a symbol of hope when they have no other. That is not something to take lightly, or to take for granted.  

seven years later: empathize with any difficult situation

Seven years later, I am still blogging here at Blood Clot Recovery Network. Healing from my experience, I believe, has led me to be a better blogger. Being able to acknowledge my emotions, but not let them control me, has allowed me to lend a greater empathy to you, the people who are suffering like I once was. I see you. I see that you are suffering, and I want you to know that there is hope for better days ahead. The pain, for most people, gets better. And, if it doesn’t, you can usually find ways to manage it or address it. It doesn’t make it hurt any less right now, though, if you’re stuck there in that dark, painful place.

It is true that most people do recover from blood clots and go on to live normal lives again. It just might not feel like it from where you are right now, and you might not believe it. That is okay. Healing is hard work, and it can be a long road. If you’re struggling physically, talk to your doctor about how to manage your pain, and if you’re not getting better, talk to your doctor about a plan to help you. If you’re struggling emotionally, reach out for help. You should not suffer alone, or in silence. There are people to help you, both in the medical profession and in the community. Ask for help, make a call, make an appointment, or reach out to someone that you trust.

Seven years later, I thank you and this community for everything you have done to support me, to support one another, and to help raise awareness about blood clots and clotting disorders. If you have a blood clot or clotting disorder, know someone who does, or even if you lost someone to these conditions… you are so loved. My healing has come full circle, and I am here to help others through the same journey, which I try to do each and every day. My professional work at the National Blood Clot Alliance has given me an even bigger platform to give back, but this blog retains a pretty special place in my heart, particularly for those of you that are suffering and struggling.

seven years later: give your support and love generously.

If you’re feeling better like me and are called to lend your support to others who are still healing, you can do so in several ways: Join my private Facebook Group and talk about it or connect with me on social to share my blogs. You can also support the National Blood Clot Alliance (the largest patient advocacy organization in North America). If you’re called to advocate and raise awareness, you can learn more about that here.  

seven years later: there is hope for healing, and you are not alone.

My mantra hasn’t changed seven years later: There is hope for healing from blood clots, and you are not alone. It rings true to this day, even for me. Thank you for supporting me on this journey. Whether you are here for the hundredth time or the first time, thank you for taking time to read what I have to say. Thank you for talking about your blood clot recovery with me, and with this community. It matters, you matter, and blood clot awareness matters.

There is hope for healing and you are not alone,

Reader Writes In: Where are you in your recovery journey? Has the BCRN community helped you along the way? Share in your journal, or in the comments below.

www.BloodClotRecovery.net

FAQs and Contact Me

Blood Clot Awareness Month 2019: Awareness Matters

March is Blood Clot Awareness Month. Find out what it is, why it matters, and how you can help make a difference.

Why Blood Clots?

It will soon be seven years since I had a blood clot in my left leg (deep vein thrombosis or DVT) that traveled to my lung (pulmonary embolism or PE), causing damage to my heart and creating a life-threatening situation. I did not know that I was at risk, both because I had an underlying autoimmune clotting disease called antiphospholipid syndrome, and because I was taking birth control pills with estrogen.

I was only 29 years old then, and for me, life had just begun. I was recently married, healthy, and contemplating a future of kids and home with my husband. I was running one day, when a horrible pain started in my left calf. It felt like a pulled muscle and progressed to feeling like my knee was in a vice. Less than two days later, I had pain in my left side, near the bottom of my ribcage that eventually felt like someone was stabbing me and all the air was deflated from my lung. Being unable to breath or speak in full sentences is why I went to the hospital, at the urging of my primary care physician, who I called on a weekend for help.

I spent ten days in the hospital, where my life hung in the balance for several days. 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 grueling journey. It took me two years to recover from the blood clots that ravaged my body, 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.   

While I am not exactly sure why my blood clots happened when they did, to the severity that they did, I do know that 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.  

Blood Clot Awareness Matters

Blood clots kill more people each year than AIDS, breast cancer, and motor vehicle accidents combined, yet so many people don’t think blood clots can happen to them, or surprisingly, they don’t know they are dangerous. Blood clots can happen to anyone, at any time. I was 29 years old and an active runner when my blood clots happened to me. I never expected it, and because of that, I almost died.

If you think blood clots can’t happen to you or someone you care about – they can. Take time this month to learn – and share – more about blood clots. Nearly all of us have access to someone else. Whether it be your friends, your family, your colleagues, your social media channels, or your community – share, share, share. It seems simple, but it truly matters.   

Knowledge Saves Lives

Sometimes I think about how different my situation would have been had I known two things: That I was at risk for blood clots and what the signs and symptoms of DVT were. If I had known, perhaps I could have addressed my risk with my doctors earlier, or when I had symptoms of a blood clot in my leg (DVT), I could have got help before it turned into a life-threatening situation by traveling to my lung (PE). I didn’t know either, and I almost didn’t survive. While I can’t say for certain what might have happened then, I wish I would have known.

Knowing information about blood clots does help to save lives, and I have heard countless stories from people who have read my blog and avoided a life-threatening situation because they got help at the first sign of a problem:

Blood Clot Recovery: Snapshots of You

Information about blood clots is easier to find now than it was when I first started writing my blog here, but there is still information lacking about blood clot recovery. Although, recovery information is much more readily available than it once was, and there are great organizations and people working to share information, where once there was none.

Talking about my experience has been one of the things that helped me to heal. Writing about my experience has helped me process what happened to me. I believe strongly in the power of sharing our experiences, and this March, I want to focus on how sharing our stories – whether publicly or in private – helps with healing and recovery. No one wants to feel alone in this world or feel alone when going through a difficult experience. If you’re struggling physically, you’re not alone. If you’re struggling emotionally, you’re not alone. This month, I want to share insights – or snapshots – of my recovery from blood clots with you and give you the opportunity to share with me and with one another.

Make Your Connections Count

I will be sharing new content on social media for the month of March, as well as many of my most popular posts. I will be talking about blood clot risks, signs and symptoms, and all about recovery, including anxiety, depression, lifestyle issues, treatment, and more. There will also be weekly opportunities for you to share your thoughts and experiences with your own recovery from blood clots.

My two most popular platforms are Facebook and Instagram, so if you’re not connected with me there, I look forward to seeing you. You can connect with me on Twitter too. My private Facebook Group is growing each day, and it is a great place to chat with people in real time about blood clots and blood clot recovery. I am there every day, so I would love to chat with you too.

Hope for Healing from Blood Clots

My message is this: If you are recovering from blood clots you are not alone, and while it is life-changing and even unbearable at times, it does get better. There is hope for healing from blood clots.

www.BloodClotRecovery.net

A Note of Gratitude

I would be remiss if I didn’t stop to talk about what I am grateful for since my blood clots six years ago. While I don’t often refer to myself as a survivor, I did come out alive on the other side of something that kills 100,000 people a year. I am grateful for my life, and I am grateful for the chance to help make a difference. By sharing my story – and my recovery – I hope that I can honor the lives that were lost and hopefully save lives in the future by sharing important information.  

I am grateful for my family, who supports me day after day, even when my work takes priority over them. They are: my husband, Michael; my dad, Bill; my sister, Mollie; my in-laws; and my dogs, Grace and Sadie. Thank you for believing in me, and the work I do, every single day.

I am grateful for my medical team, because without them I wouldn’t be here today. They are: my hematologist, my primary care physician, and the nurses and lab staff and my hematologist’s office. Thank you for caring about me, and for helping me live my best life with antiphospholipid syndrome.

I am grateful for the BCRN community. You all make it possible for me to carry on my work here, day after day. You inspire me, and you keep me motivated to talk about my experiences, with the hope that my sharing will continue to help you. Thank you for reading, for commenting, for sharing, and for connecting.

Where to Go for More

I hope you also connect with the National Blood Clot Alliance, if you have not already, where I work professionally in Marketing and Communications. We have several projects that we are unveiling this March that I am very excited about. To make my passion my profession has been one of the most rewarding experiences of my life. Additionally, my job has provided me the opportunity to reach even more people with life-saving information about blood clots. For information you can share too, please visit www.stoptheclot.org.

Get Your BCAM Bracelets

Shop for Blood Clot Awareness Bracelets through my Amazon Shop: Shop BCRN.

There is hope for healing and you are not alone,


Reader Writes In: What plans do you have for Blood Clot Awareness Month? Share in your journal or in the comments below – I would love to hear about them!


Read More: Blood Clot Advocacy and Awareness