In August of 2006, I was 32 years old. I woke up on a Tuesday morning with some mild shoulder pain. It was a dull ache. It hurt in the front, right above my clavicle bone, and all the way through to my back. I thought I must have slept on it wrong so I went about my day, and I took my then three-year-old twins to speech therapy then the mall. I then had lunch with a friend. I complained about my shoulder pain, and she lovingly said “Take an Advil and shut the hell up!”
As the day went on, the pain got worse. By dinner time, the pain was intense, and I noticed that it was harder to breathe. About an hour after that, I noticed that my heart also hurt, but since I have mitral valve prolapse (MVP), I didn’t pay much attention. At about 8:00 p.m., I noticed that the pain was very bad. My heart hurt, it was hard to breathe, and my jaw and left arm hurt. I thought I was having a heart attack. My then-fiancé, Chris, still lived in Illinois at the time. I told him what was going on and he told me, “You are not having a heart attack, stop worrying.” I thought, “I’ll call the ask-a-nurse hotline!” And that is what I did. The nurse urged me to go to the ER, stating that in women, gall bladder issues can present with shoulder pain. I just couldn’t shake the feeling something was wrong. The only reason I went to the ER was because my dad had a massive heart attack at 35 years old, and I thought, “Well, I have the family history….so I’ll go.”
I went to the ER at Waukesha Memorial. I drove myself. I remember telling the triage nurse, “Look, I don’t really need to be here, but they wanted me to come in.” I took my laptop to play games, if I got bored. Little did I know…. within 15 minutes of the doctor first seeing me, I was having a CAT scan. It was incredibly hard and incredibly painful. I had to raise my arms over my head, which I could hardly do. The voice of the scanner said, “Take a deep breath. Hold your breath.” I couldn’t. I had no lung capacity. After several tries, we got enough of an image for them to send it to be read. They took me back to my room.
I don’t know how long it was before the doctor came back. All I remember is how uncomfortable I was. I remember rocking back and forth, just trying to find a position that made breathing easier. It was futile.
The ER doc came back in and told me that they were going to admit me. They still tried to sugar coat things a bit, probably especially since I was alone. He told me I had “some clots in both lungs.” As he left the room to talk to the PA about admitting me, I overheard him say, “I don’t know if she’ll make it through the night.”
WHAT?!?!?!?! Imagine my shock, my horror, my terror! Many medical personnel started coming in. They put me on a heart monitor, oxygen and a pulse ox monitor. I was terrified. I was alone, and it was now the middle of the night.
Then, it got bad. I remember being uncomfortable. I went from discomfort to mind-altering pain that felt like I was dying in an instant. It hit so fast, it took all of my breath away. I remember hitting the call button as fast as I could, and time seemed to come to a halt. I remember turning around to watch my heartbeat on the monitor and thinking, “This is it, I’m going to watch myself flat line.” I prayed for my babies to remember me.
They rushed in and gave me a shot of Dilaudid (holy crap) to help with the pain. It took maybe just the edge off, but made me high out of my mind. The next few hours were a narcotic-induced blur.
I was in the CICU for five days. The morning after being admitted, I called a good friend of mine who is a doctor, because I knew she’d be honest with me. I asked her point blank, “Renee, am I going to die?” She paused for a long time and finally said, “I don’t know.” That terrified me. I knew she was being honest and she didn’t know if I would live or die.
I got Heparin blood thinners in the ER, and I left the hospital with a combination of Lovenox and Coumadin. Lovenox is a shot I would take every 12 hours in the stomach. I had to do that for four weeks. I was on Coumadin for 18 months. I had my blood tested (INR) twice a week during that entire time. I had constant huge bruises. I lost hair and memory, a little known side effect of Coumadin for some people. If I cut myself, I would bleed uncontrollably. My gums would bleed when I brushed my teeth. It was 18 months of praying I wouldn’t hit my head in an accident because I’d bleed out before help could arrive. It was 18 months of my then 12-year-old daughter getting in my face if I was napping, because she was checking to make sure I was still alive. It was18 months of waking up to any twinge of pain and being afraid it was another clot. It was 18 months of hell.
I have no family history of blood clots. I didn’t a recent surgery. The only two risk categories I fell into were being on a birth control pill and being on a road trip. What caused them, we don’t really know, but it could happen to you, too. My husband’s grandpa died in his sleep of a PE. My sister-in-law’s mom died of a PE. My other sister-in-law’s close friend died of a PE.
I encourage everyone to know what to watch for and know to get help. We are always told that the ER is for emergencies. I never in a million years thought I was having an emergency. As a woman, and like so many other women, I am polite and put others before myself. I’m here to tell you, if you have a pain that you don’t know about, go to the ER. Just do it. It is better to find out it is nothing than to be dead. A week after leaving the hospital, my doctor told me if I had gone to sleep that night, I would not have woken up in the morning. Don’t be in that position. Education is key. Stay healthy and stay alive.
Editor’s Note: Thank you, Denise, for sharing your story with BCRN. Connect with Denise in the comments below.
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I am one week out from having blood clots to my right and left lungs. I thought maybe it would help me to write about it. I feel totally traumatized, and I had no idea that a PE would be the way it was. I still breakout crying from time to time. I am a nurse, but that didn’t help my situation much. The start of my pain was similar to Denise’s. I had not been exercising, but have hurt my shoulder before and having aches and pain is not uncommon for me. Just 8 days ago I went to bed feeling fine, but in the middle of the night I got this excruciating pain in my right shoulder that forced me to sit up. It felt like the shoulder pain was preventing me from getting a full breath. I also propped myself up with pillows and slept sitting up on our couch recliner. I didn’t think it was my lungs. I had changed positions typing at work and thought I had overused my shoulder. I felt better in the morning and went back to work. I have about a 45 min commute. As the day went on, I felt more and more tired. My son got a new place and I stopped to see it on the way home, but was not really feeling up to it. He later told me he thought I hated it because of the expression on my face. Dropped my phone and cracked it due to lack of attention while there. Telling my husband I didn’t feel great, he encouraged me to go out to eat on the way home. I ate a couple of bites and told him something is wrong, I just felt weak and awful. My shoulder was getting sore again. I hardly got myself back in the car and then got stuck in traffic heading to my house. I was scared, so I did get my husband to stay on the phone with me while we both inched through traffic. I told him what I thought it could be, which was maybe a gallbladder attack, very severe indigestion or very unlikely a pulmonary embolism. While I thought it logically, I was still in denial that it could happen to me. My husband tried to convince me to pull off the road into the middle lane or a parking lot, but I refused. I thought if I could get comfortable and sit on the couch, I would be okay. I just needed to get home. By the time I got home my husband gave me 2 choices, either he was taking me to ER or he was calling an ambulance. He drove me to the ER, 5 minutes away. As we did, I saw the medicine on top of my purse that my GYN nurse practitioner had prescribed for heavy menses. A light went off and I just knew that’s what it was. I felt pretty sure I didn’t have DVTs in my legs, but hey were a little sore after. I had been on this medicine for 8 months. I could hardly talk when I got to the ER, but I pulled out that bottle and gave it to them, told them I was a nurse and I was afraid I was having a PE and that this medicine was the cause of it. They checked my pulse ox, and that was strangely okay. They insisted it was probably my gallbladder. They put in an IV and took labs. They kept trying to complete an ultrasound of my gallbladder, but I was in so much pain I could not be still or lay flat. They made me feel like a drama queen for not being more cooperative. At this point my right shoulder and my right side hurt on every breath. To me it was like a charlie horse cramp in my right side with each breath. I begged for something to help me breath, but they just gave me Reglan for my gallbladder. The ER was a very unpleasant experience. I thought they would help me, but instead I felt like they set out to prove me wrong. Thank goodness for the lab work that came back showing an elevated d-dimer which indicated that I had clots. I had forgotten all about the blood test that would show that I had clots. Before that I just thought I was dying. I feel like they should have been explaining everything to me the whole way, but they didn’t. I did hear a lot about how painful a gall bladder attack is until the ultrasound showed that my gallbladder was perfectly normal. They finally gave me a CT and saw I had clots on both sides and that they were “significant.” This Thanksgiving I was most thankful for my husband who never left my side. I don’t think I could have done this alone. I had moments of pain where I thought that my kids were going to be having my funeral for Thanksgiving. I was giving my husband directions on what I wanted him to tell my kids if I died. Like Denise, I thought sitting up would help me, and thank goodness he kept helping me to sit on the bedside or try to get comfortable with the hospital staff telling him to have me lay down. Never did get comfortable. Finally the doctor comes in and tells me I have clots on both sides and that it was serious. The doctor did not even listen to my lung sounds until after my CT showed the clots. He said I did have diminished lung sounds, which I believe he should have found on my arrival. They admitted me to a telemetry unit. I was given IV pain medicine, but it didn’t seem to last. I don’t know if there was a lack of physicians to change orders or if the nurses did’t believe my pain, but I spent those 1st 2 days in a lot of pain. It would have been so encouraging just to have a physician come talk to me and tell me more about my condition and the pain. As a nurse, I just felt abandoned. I wasn’t even asking for another narcotic, I just thought a muscle relaxer would help or something to go with the narcotics they were giving me. It was not until Sunday that I had a physician talk to me. He was so kind and assured me that they didn’t think I was faking the pain, but it would have been nice to have at least seen him the next morning after admission. It has been so therapeutic for me to read the stories from others. As a nurse, I don’t remember hearing about the symptoms, except to look for PE when you have someone who is anxious and doesn’t want to lay down. I know I met that criteria. I don’t remember them teaching us about the severity of pain or the recovery in school either. This was the most traumatizing experience that I have ever had. I will be a lot more understanding in the future. I drove for the first time today, but this afternoon I am really tired. I’m wondering about return to work. At times I feel silly for not getting back to it, and then I’m tired and wonder when I can get back to it. My current job is involved with opening a new hospital. I hope to be able to get in a lot of ears and tell people what my experience was like. If I ever need to return to the ER, I will get my regular physician or a physician that knows me to advocate for me.
Pam, I’m so happy you went to the ER. I know how scary this entire situation is. I hope you’re doing better these days! <3