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.

How to Stay Safe on the Go with Road ID

Road ID Cover for BCRN

I’ve always been cautious and tend to worry about things I can’t always control – things like the weather, my health and plane crashes. I’ve always been a what-ifer, and I tend to worry more about what could happen rather than what actually did. I was on my way to decreasing my time spent worrying and improving my self-confidence until my DVT and PE in June of 2012 that began a long, downhill landslide of shattered confidence, broken dreams and more anxiety than I had ever faced before. With the prognosis of being on blood thinners – at 31 years old – for the rest of my life, I suddenly found I was worried about almost everything. What if I fall? What if I get in a car accident? Cut myself? Hit my head? Can’t speak for myself in an accident? The thoughts started flooding in and my anxiety increased, mostly when I left the house or when I was home alone. Sure, I can wear a medical alert bracelet and carry a wallet card, but what if I don’t have these things with me when the worst happens? I quickly realized I had to do something to ease my mind and feel safe about living life (even normal, everyday activates like going to the grocery store made me nervous) and soon discovered how to stay safe on the go with Road ID.

You may have heard of Road ID. If you are a runner, cyclist, triathlete or just an active person, Road ID is for you! They make emergency medical alert bracelets that I recommend. Plus, I love what they say about their products, “It’s not just a piece of gear – it’s peace of mind.”

What you may not have heard of is the Road ID App.

I first found out about this app in an online awareness support group and decided after using it, it is too good not to pass on to you. It is completely free, easy to use and delivers a whole lot of peace of mine.

Not all of my medical bracelets have the space to put In Case of Emergency (ICE) contacts on them and even then, there are some days that I just don’t wear one. However, I don’t think there has ever been a day when I have forgotten to take my phone with me. The first feature of the Road ID APP is to provide a pace to put your pertinent medical information, ICE contacts and who you are – right where any first responder would see them, on your lock screen. I have ICE in my phone, like many people, but that won’t do any good since my phone is password protected at all times. The screen has a place to put who you are, your city, important medical info and up to three contacts with phone numbers of your choosing. You can customize it with as little or as much information as you want. The app also provides easy instructions as to how to set your ICE info as the front lock screen. Mine looks something like this:

lock screen

Having my screen set to this has provided me a great sense of relief ever since I put it on my phone about a week ago. You could set the screen to look like this at all times (like I have) or you could set it to lock like this when you go out for a workout. Being on blood thinners and having the medical history I do, the only solution that works for me is to leave it there all the time.  ICE is in important, so if you don’t already have it in your phone, please put it there or consider using this app! I know for a fact first responders will check your phone if you have no other identification with you. Three years ago, my mother was running in a park close to home and had something happen. She had no known medical conditions that would have caused her to wear ID so she did not. A police officer on the scene was able to contact me (one of her ICE contacts) from her phone and let me know which hospital to go to. Sadly, my mother did not survive what happened to her. And while we did not make it to the hospital before she passed, we knew where to go, what details were available about what happened, and I also have the peace of mind believing that everything that could have been done to save her life, was done that day and as quickly as possible.

The second thing the app does is provide a service called eCrumb (or electronic breadcrumb) feature that I also find invaluable if you are going to be out on a workout (run or bike) or even out taking a walk. This feature tells someone (via text directly from the app) that you are going for a run or workout. YOU set a timer for how long you anticipate being out (you can add time as you go right from your phone or cancel the crumb at any time). You can notify up to five people of your workout and they can track you in real time via a text link that is sent to them. They do not need to have the app. While out on your workout, if you stop moving for more than five minutes, the app will send the person (or people) on your list a notification. If you have been inactive for five minutes, a very loud alarm goes off on your phone so you can extend the time (or disable the alarm, for example, if you needed to rest for more than five minutes) before the message goes out. Road ID suggests you customize the alert message to say something like, “Please call or text me to see if I’m okay” in case an unintentional alert is sent out. If the stationary alert is issued, the app sends a link to your contacts (that you sent the “I’m going for workout” message to in the first place) with the last known location and tracks your phone for the next 30 minutes after the alert is sent out. The eCrumb tracking location services update about every minute while you are using the app according to Road ID.

ecrumb set up

Currently the Road ID App is only available for iPhone, although Road ID is working on an Android version. It’s completely free and Road ID will send you a coupon for a physical Road ID after your download it!

Share your story. Would people be able to access your ICE contacts in an emergency? Have you used this app or a similar one? Will you? Do you have a Road ID or will you consider getting one? Do you tell someone when you are going for a walk or run?

There is hope for healing and you are not alone,


The pain that kills

I remember it like it was yesterday. The brain, in fact, has a hard time forgetting pain and research shows that any pain lasting more than a few minutes leaves a trace in the nervous system that is not easily extinguished. Ever since the beginning of time, pain has played an important role in the lives of animals and humans alike, and is an indication that we should stop what we’re doing or take alternative action – or, that something is gravely wrong with the body. Pain has to be intense and hard to ignore in order to initiate the ‘flight or fight syndrome’ in which our bodies prepare to either stand and fight or turn and run; and, it is clear that adherence to pain signals have kept humans thriving for centuries. Little did I know, it is often the pain that kills if left ignored for too long.

I ignored the pain – and almost didn’t survive, just as my ancestral counterparts may not have and just as the 1 in 3 people that die today after having symptoms of a pulmonary embolism, but ignore them or wait too long to seek medical help.

How many die a year graphic

I never thought it could happen to me – why would it? I was a runner and had just completed a two mile training run, a little slow, but done nonetheless, and complained to my friend and fellow coach about what I believed to be the start of plantar fasciitis, an inflammatory running injury that causes pain throughout your heel, foot and sometimes lower leg. I stretched, I went home and iced, showered, ate leftover vegetable stir-fry I had made the night before and took a nap. It was exactly like every other Saturday for the past two years, why would it be any different?

I woke up from a two hour nap and the sun was shining brilliantly through the window. It wasn’t until I was fully awake that I realized my side was aching, and I sat abruptly, which caused me to take in a deep breath. I winced a little and stretched my arms. I knew I had fallen into a deep sleep and slept on my side wrong. It was the start of a new running season and clearly I was more out of shape than I thought as I hobbled into the bathroom – on my throbbing leg – and took another shower. The warmth of the water temporarily eased the pain in my side and my thoughts turned to what I was going to do for the day.

Any plans I thought I made didn’t happen and by that night, when my husband came home from work at 9:45 p.m., I was propped up on the couch with a pillow on either side of me. He asked what was wrong and I said I pulled a muscle running and couldn’t move my side very much. He asked if I needed to go to the hospital and I declined. I would be fine after a good night’s rest. Only, I didn’t get a good night’s rest that night – I slept propped up in the recliner with my two dogs and my husband pacing in and out of the room wondering what was wrong.

By Sunday morning, I woke up after a fitful sleep and I felt a lot better. I got up from the chair, heading for the shower again, and as soon as I put weight on my left leg, it felt like someone tightened the flesh behind me knee in a vice. I yelped in pain, grabbing my leg – which caused me to bend over – and I was astonished to feel that I could not catch my breath due to what felt like a knife in my left side. I hobbled backwards and collapsed into the recliner, trying to catch my breath. My husband came running and said, “I think you might need to go to the hospital,” but again, I said I was fine and out of shape. I called my father and cancelled dinner for the evening, barely able to speak an entire sentence without gasping for a breath. I also managed to croak out that I did not need to go to the hospital. My husband and I looked it up online and determined it was not appendicitis, a heart attack or my gall bladder, but that it must be constipation (after all, I couldn’t remember when I last went) and we made a herbal tea to ease the pain. I even believed it worked, until my dad called again and I sounded worse.

It wouldn’t be until almost 8:30 that evening that I got a call on my cell phone from my family physician (who my father called out of concern) and I explained my symptoms, convinced it was a muscle strain. The doctor, who I now credit with saving my life, instructed me to go to the emergency room immediately (or call 9-1-1 if I was alone) because he believed I was suffering from a blood clot in my lung, that travelled there from my calf. I was in disbelief, but the urgency in his voice – coupled by the fact that he called me on his cell phone on Sunday evening – convinced me that I should go. I all but fell down the stairs and told my husband we had to go. He all but muttered “I told you!” and we were out the door. I remember he helped me walk to the car because I couldn’t and I remember asking him if I was going to die because I felt like it. I remember he said he didn’t think so, but the hesitation in his voice caught me off guard. I cried all the way to the hospital and actually thought about discussing funeral arrangements in the car before it was too late. I had never even been to the hospital for as much as a bump or bruise before and I was certain this would be the end of me, as it nearly was.

And I remember feeling the worst pain I ever felt in my life. Radiating pain in my lower leg that felt like a vice and a stabbing pain in my side that felt like a knife. I couldn’t draw a deep breath, couldn’t lie down, could barely speak and could not put any weight on my left leg without increased pain. And, I remember that although I was seen without question (and bypassed a very long line of sick and injured people) it would be almost three hours before an ER doctor determined what was wrong and an ER nurse gave me morphine that suddenly made it all okay – or so I thought. Little did I know, I had a very, very long road ahead of me and one that I would be very lucky to make it out of alive on the other side of.

Stay tuned for more of my story coming up….

In healing there is hope and you are not alone,