Hello beautiful friends! I have missed you all so much during my absence. But I do have a good (albeit scary) story to tell you! I want to preface this by saying that I am so grateful for all the love and support everyone has given me during the last few days; without my family and friends this would have been very difficult to get through. Our human connections lend a lot of grace and beauty to the smallest moments; illustrative examples to follow. If ever I had forgotten how much people love me and treasure me and care for me, well, now I know just how much they do. I feel like I’m looking at love from a slightly different angle now. I think I am beginning to understand how compassion alights through us.
This past week was really hot and humid. Like, painfully hot, and as you all know, I sort of wilt in the heat. By Wednesday, I wasn’t really feeling myself. I kept getting out of breath on my walk to work. I attributed it to the weather and the droll, tired pattern of mid-summer days. In the evening, I went for a run. I had to stop every half a mile or so and ended up only running three and walking two. I threw in some yoga and abs in the middle and felt decent, but thought that I might be having some asthma. I called my dad and he suggested I should make an appointment with my doctor for the next day; I might need an inhaler.
In the morning, while I walked to work, I called the doctor (which is conveniently right next to my office) and made an appointment for 2:00. I still felt tired/short of breath and my chest hurt a little bit around my sternum, but again, I wrote it off as asthma. At work, I pretty much sat at my desk typing away for five hours. The office is air-conditioned and calm. I felt fine, but avoided any excessive trips up and down the stairs. I left my work spread out on my desk and my lunch in the fridge when I headed to the doctor, thinking I would be back in thirty or forty minutes.
I finally got into the room with Sam, the nurse practitioner, about a half hour behind schedule. I was a wee bit cranky because I wanted to get back to work and finish what I had been doing. I told him I was there to follow up on my GI infection of two weeks ago (I was almost back to normal) and to tell him that I was a little bit out of breath, probably because of the heat/humidity/air quality. He took my pulse, blood pressure, and blood oxygen levels; all normal. I told him that it was much worse when I moved around. So he did something that probably saved my life: he took my blood oxygen levels while I walked up and down the stairs. The level dropped pretty rapidly to 89, which is not considered near normal range, especially for a runner. He saw how out of breath I was and seemed concerned. We went back to the office and talked for a few minutes. Then he walked me over to the urgent care, which is just in the next office over, where he talked to other doctors. At this point, I was really scared: I sat in a room with the door wide open while a cluster of doctors and nurses talked literally five feet outside the door. I could hear everything they were saying: basically, there was a lot of “this is not normal” and “this is dangerous.” They started saying that I was going to have to go to the hospital, which made me nervous, but I also felt skeptical. I really thought I was perfectly fine. I called my mom and started crying and told her they wanted me to go to the ER. She said it was okay and probably not serious.
The NP (Sam) got a nurse who got a wheelchair to take me to the ER – the hospital is across the street. I refused to get in the wheelchair and told them that was a ridiculous idea. We walked over instead. She helped me sign in. Because I was having chest pain (albeit mild), I got moved to the front of the queue. I talked to the triage nurse who sent me back to see the pediatric ER nurses (like last time; I’m not yet 21). I told the nurse my symptoms and explained that I didn’t really know why I was there because it wasn’t that serious. I waited around for an hour or so then saw a doctor who was clearly a resident (a very very hot resident; like hotter than TV doctors hot). He was concerned that I could have a blood clot (um, what?), although my blood oxygen levels were back to normal. He ordered some blood tests; mainly, a test called D-Dimer, which measures the concentration of a protein that forms in the blood if you have a clot. The test, however, does not mean that you necessarily have a clot, it just indicates a problem. I waited around some more for them to draw blood. Then I waited another hour for the test results. It came back positive (triple the normal level). That meant that the (hot) doctor had to order a CAT (CT) Scan which would actually use a dye to look inside my lungs. I waited for a while to go up to the scanning room; they made me go in a wheelchair which greatly annoyed me. A technician injected dye into my IV catheter (which nurses had put in when I first got there) and took a bunch of pictures. I went back downstairs. Meanwhile, doctors looked at very thin cross sections of my torso (from my collarbone down to my liver) taken in the CT pictures.
I waited around another half hour or so (I arrived at 3:15; it was probably about 6:30 or 7:00 by now). I was sitting in my little “cubicle” in the ER, listening to a plethora of loud, hurting children (NOT something you want to hear for six hours). After a while, the doctor came up to me, accompanied by the attending physician. They had sort of grim looks on their faces and the first thing he said was “I have bad news for you.” He spent the next five or so minutes explaining to me what that bad news was; I was crying and shaking because I was just so anxious. He kind of forgot to mention that I would be okay until after he explained the problem. So at this point I basically thought I was going to die.
He told me that I had two large pulmonary embolisms, one in the main artery running through each lung. This is a very dangerous condition. If I had not come to the hospital, I could have died! A pulmonary embolism (PE) is the same thing as a gigantic blood clot. When you have big clots hanging out in your lungs, you can stop breathing. I cannot describe how I felt at this moment with any word other than “terror.” I was by myself and did not understand what was happening to me. All I can say is that human kindness carried me through. The hot doctor was super nice to me and explained everything very carefully. He talked to my mom on the phone. The nurses patted me on the shoulder when they drew blood or gave me injections. The woman whose daughter was across the hall with a knee injury came over and hugged me. My aunt called her cousin (my second cousin) who eventually was able to come by. I can’t thank all these people enough. You don’t really understand what compassion means until a stranger is holding your hand in an ER, telling you that you will be okay.
The doctor told me that I would have to be admitted and stay in the hospital for several days. I had only been to the ER for the first time two weeks before. So now, within a single month, not only did I have my second ER visit, but I was actually being admitted! Terror no longer accurately describes the feeling that was spreading from my stomach out into my limbs. The doctor ordered a shot of a drug called Lovenox. This is an IV or injected drug that prevents any new clots from forming. I had to wait two hours to get the shot, which was apparently dangerously long. I talked to both of my parents a lot more during this time. They were pretty freaked out. In fact, everyone around me was pretty freaked out: here was this healthy, young woman presenting with a deadly disease, with virtually no explanation. As each test result came back positive, I could read the confusion on the doctors’ faces. There are several risk factors for PE: smoking, immobility or serious inactivity, surgery, cancer, leg fractures, family history, and taking birth control. I do take birth control for my PCOS. As was later discovered, I also have a family history, but we didn’t really realize this at the time.
A nurse finally came around to give me the Lovenox. She told me it would go into my stomach, into subcutaneous tissue. This was too much. I burst into tears and yelled at her and told her I did not want the injection. She calmed me down within a few minutes and gave me the injection. It kind of hurts – not when the needle goes in – but when the drug is actually pushed into the stomach fat. After this, I had to wait for patient transport who would take me to a different building where my room would be. The transport finally came and they put me into a bed. I got wheeled to the Sixth Floor West wing, where I would be for the next three days.
I got up to the floor and went into my room. It was what a hospital room seemed like it would be; two patients to a room, a small box of toiletries, a curtain, a giant bed that I could make go up and down (very entertaining!), thin blankets, an icky inpatient gown, oxygen machines. I was in room 20A, right outside the nurses’ station. I met the attending physician for the evening, who really just reiterated to me my condition and the seriousness of it. He gave me oxygen via a plastic tube thingy going into my nose. He talked about the medications I would be on for the next few days. In addition to the injected Lovenox, I would have to take a pill called Coumadin. I had my blood drawn some more and took more pills. I was extremely tired but so hugely anxious that I couldn’t sleep at all. I slept for maybe five hours that night. My second cousin (and another second cousin who came later) stayed until 11:00 or so with me. They brought me a sandwich and a pastry because I had missed dinner. I was hangry by this point.
I was awoken at six the next morning by my first nurse, Joan (I had three other nurses: Remy, Adrian, and John). She did my blood pressure, blood oxygen, and drew blood. My iron and a few other things were a bit low, but the most important test done was for my INR. INR stands for International Normalized Ratio. It measures the ability of the blood to coagulate. It is supposed to be a little less than one in healthy people, however, my blood needed to be thinned out quickly, so we had to get it up to between two and three. It was only 1.2 the first morning. After that, I was taken to have an echocardiogram taken of my heart.
That took a while (you have to keep waiting for “patient transport”, and they are slooooooow). I didn’t get back to my room until almost ten. I asked when I could have breakfast and they were like “you missed breakfast.” I almost cried. I told them that they needed to go find someone who could bring me something, and finally they did. I saw the breakfast choices; basically cereal, whole milk, banana, tea, bread, hard boiled eggs. Not terrible but not great. I was really craving some peanut butter! I then looked over the menu that they gave me for the rest of the day and told them that it was not going to work. They sent a nutritionist up and I wrote the department a letter explaining why they needed more produce, decent protein, whole grains, and healthy fats on their menus. Hey, it gave me something to do! The food didn’t get much better so I didn’t eat a lot.
In addition to the Lovenox, I had to start taking a drug called Coumadin (the brand name for Warfarin). The clots were still big and my heart was dilated because of the pressure from my lungs. Scary. The rest of that day (Friday) was really boring. Lots of random tests and meetings with doctors; I met the attending for the floor, a physician’s assistant, and a pulmonologist. More pills. More blood draws, more tests, more doctors, more nurses. I had visitors though! I had friends, people from work, relatives. By Friday night, my mom had arrived. People brought me cards, chocolate, magazines, flowers. I read lots of books and walked up and down the hallway ten billion times. I chatted with the nurses. Everyone was surprised because I had basically no symptoms outside of a mild shortness of breath. There was no chest pain, no coughing, and no low blood oxygen levels. Because of all of this, they said that I would be able to go home the next day (Saturday)! I was a little nervous because I wasn’t sure what the situation with the clots was. But my doctors explained it: the clots (PEs) are still in my lungs, but, while the drugs are thinning out my blood, the clots are moving to the periphery of my lungs and slowly beginning to dissolve. They will dissolve (and hopefully never come back!) within two weeks, in theory. I can rest at home while they dissolve.
This still seems so much to take in. I am reeling, anxious, not sleeping at night. My mom injects me with the Lovenox every morning and I take the Coumadin at night. I have to have blood tests drawn tomorrow morning and every few weeks thereafter for at least six months. I will be on the Coumadin for at least that long. If I have a certain genetic abnormality or I ever develop more emboli, I will be on blood thinners the rest of my life. I will not be able to drink alcohol, take ibuprofen, or take long flights without being extremely careful. I will have to have the level of Coumadin in my blood measured constantly to make sure that the INR is between two and three. I will meet with gynecologists, reproductive endocrinologists, pulmonologists, clot specialists, internists, and nurses. We will need to figure out why a healthy, young person developed massive pulmonary embolisms. Usually, this is a condition associated with older or less healthy individuals. I will never again be able to take birth control, which could cause a clot again. I will have to find alternative medications to manage my PCOS or else I could quickly become infertile.
But. At this point I’m alive. And that is all I can ask for. So many other things seem trivial right now. I have walked around with my mom a bit today. Gone to museums, eaten whatever I wanted. If I walk too much I have trouble breathing and have to sit down. Stairs and hills are especially hard. I have lots of pretty flowers in my apartment to look at and chocolate to eat.
I might go back to work Wednesday. We shall see. I have a lot to do for my non-profit job so I’m a little lost on that. But I know things can and will get back to normal. My life will always be different because of this; I will have to exercise extraordinary caution in doing everyday things and in more serious things, like pregnancy, or surgeries. This is something that, unfortunately, can never be removed from my medical history. I am so thrilled to be alive right now: thrilled to touch my mama’s shoulder and hear her breathing. Thrilled to be able to pick up pears and avocadoes at the grocery store. It’s hard to describe. Coming back from that sort of panic and terror and near-death experience, I am most definitely different. Stronger. I am not sure how, but I am sure that things will begin to unfold before me as I move forward. And I will move forward.