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.

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.