I have decided to put this blog together to document my medical ventures with a pulmonary embolism at age 25.
The story starts on December 5, 2006. I wake up at 2:00 am feeling a horrible pain in my side. My entire left side is searing in pain and I cannot move and have a hard time breathing. I begin to panic, thinking that I am having an appendicitis attack. That early in the morning, I couldn't remember if the left side was the side my appendix was on. I lay in bed wishing and praying the pain will go away in time for me to get up and go to work. 6:00 am rolls around and I realize that I am in no shape to attempt going to work. I lift myself out of bed and pull out my trusty medical book and look up sideaches. According to the book it was not an appendicitis, but a possible pulled muscle, growing pains (yeah right, not at 25) or general muscle cramps. I was able to narrow the pain down to a localized area around my lower ribcage and upper left abdomen. I just couldn't pinpoint the pain because it was deep and not muscular. I had a hell of a time trying to move at all or breathe. The most comfortable position was sitting in a chair curled forward. That was the only way I could get air into my lungs without severe pain.
I immediately call my boyfriend, Dustin, to let him know that I wasn't going to work. He was worried, but I calmed him down and said it was just a sideache and I was going to get in to the Dr. to get it checked out. I then lay back down and wait until the clinic opens. To my dismay, I was not able to get through to scheduling until 9:30 am. I made an appointment for 11:40 am. I crawled out of bed and into the shower. The hot water and clean smells did not diminish my pain at all.
I arrive at the Dr. office and check-in. At that time, I didn't have a primary care physician so I just saw whoever was available (this shows how often I get sick or need a doctor!). I head into the office and visit with the Dr. and describe my pains. He orders blood tests, urine tests and an abdominal x-ray. I comply and follow through with all of the tests. The results come back with, what this Dr. says, high white blood cell count in my blood and a high leukocyte level in my urine. He diagnosed me with a "potential" kidney infection. He also pointed out that I had some stool in my intestines which showed constipation and gas. Umm, isn't stool normal? So, I didn't question the diagnosis, he is the professional, right? He prescribes me an antibiotic for the supposed kidney infection and then sends me on my way.
What about the pain? I figured once the kidney infection was taken care of the pain would go away. No such luck. By 7:00 pm the same night I lose my breath and cannot move at all or breathe at all. I call the after hours nurse line and hold for 40 some minutes until I get a nurse on the line. She informs me I need to go to the ER right away. I hang up the phone. In the most pain I have ever had in my life, I nearly crawl to my bedroom to wake Dustin up to help me. He gets up and dressed and starts to get the car. I tell him no, I cannot move to call 911. He calls and an ambulance arrives in less than 5 minutes. I was so panicked at that point that I was lucky to get a whole breath of air in my lungs.
The ambulance slowly (without lights on) cruises me to the hospital. We stop at every light and hit every bump on the way there. I never thought a vehicle ride could be so painful before. By this time, my whole body hurt. Dustin follows us in his car. After my arrival at the ER, I get hooked up and they start with blood tests and more urine tests. The ER doctor decides that a pap smear and ultrasound on my uterus and ovaries would be the next steps. By this time, it was close to 12:00 am and I was going in for an unexpected peek and poke exam. I was not prepared for that at all! After all the tests on my feminine parts were completed I was brought back into my ER room and waited for the results. The Dr. came in and told me I had an ovarian cyst rupture and the pain from the rupture was affecting my entire side. The Dr. also informed me that there was no evidence of a cyst rupturing or any fluid from such, but he was sure that this was what was causing my pain. He prescribes me a pain med for relief of the pain from the rupture. He also concludes that a kidney infection was not likely, but told me to continue taking the antibiotic just in case.
It is now Tuesday, December 6th at 2:00 am. Dustin and I head home tired, weary and still in pain. I managed to squeak in a couple hours of sleep. Sleeping, at this point, was nearly impossible because no position was comfortable enough for me to breathe or lay in without excruciating pain.
On Tuesday afternoon, I talk to a few friends and family about the first and second diagnosis(es) and heard stories about how painful kidney infections are and also how painful ovarian cysts can be. I chalk all of this up to the aforementioned and some constipation mixed in. In desperate measures I run up to CVS and pick up some Gas-X....would that take the pain away? Nope, didn't work. I wait until Thursday and buy Correctol. Didn't work, didn't take any pain away. Friday morning rolls by and I ask Dustin to by me a bottle of Milk of Magnesia. I figured the pain had to be constipation, right? That is what the first doctor told me. I had a few BMs but the pain wasn't getting any better.
Friday pm, December 8th. I am on the phone with my mom and texting my friends back and forth. Everyone is telling me to go back to the ER. I keep denying the pain because it is a combination of constipation, abdominal gas, kidney infection and ruptured ovarian cyst. Ick, just writing it, it looks like a nasty concoction! So I figured one of the four would go away and diminish the pain.
I start to really panic. I call one of my college profs and tell him I won't be making it to class Sat morning. He okays an extension on my final project. I then go and wake up Dustin and ask him to bring me to the ER. I didn't know if this could wait until tomorrow afternoon. We drive in to the ER together. Friday night, pretty busy in the ER. We wait patiently for my name to be called. While waiting my two favorite angels showed up for moral support and wait for the verdict with us. Bless their hearts, I love you Gals! I get called in and this Dr.(number three) looks like he has some intelligence in the matter at hand. He orders at CT scan right away. The nurse peeks in to my room after awhile and asks something about pulmonary blah blah. I said no, that he only mentioned that my painful area was "make believe" and that there isn't really any vital organs in the area to have anything to diagnose.
A nurse comes in and hooks up an IV and takes some blood. No painkillers, yet. They give me some nasty CT scan contrast to drink. Looks like beer but tastes like what urine might taste like. I drank a huge 32 oz glass in exchange for one friend to visit me before scans. Dustin comes in, what a relief to see a friendly face! I tell him to go have Chris and Vanessa go home because I knew it would be another long ER night.
I go in for a chest x-ray and then in for the CT scan. The CT scan was of my abdomen and a little section of my lower ribcage. The scan was the most painful thing I had ever had to do so far in my life. I literally shook in pain for ten minutes after it was done.
The x-ray results come back inconclusive, nothing showed on the scan. The CT scan comes back with bad news. The Dr. ordered a rescan of my entire ribcage area. He said he saw something happening in my left lung. This time around I didn't have to drink the beer pee! By now I am on some pain meds that take some of my edge off, but nothing to really "kill the pain". This scan was a little less painful than the first.
Results come back. Dr. announced that I had a pulmonary embolism. He admitted to it being a rare occurrence in individuals in their mid-twenties. I choked up immediately. I barely remember anything from his conversation, I was in quite a bit of shock from the news. Dr. also explains that the clot has backed up fluid in my lungs and caused a bad infection and the onset of pneumonia. He orders up antibiotics right away and a shot of Lovenox (blood thinner). The doctor also explains that blood was drawn for genetic mutation tests (predisposed to blood clots) and also told me to stop taking contraceptives. He said that all forms of contraceptives with any level of estrogen pose serious blood clot risks to any woman, any age. He then informs us that I will be staying in the hospital for awhile. By this time it is close to 3:00 am on Saturday morning. We had been in the ER for 8 hours by then.
Word came in at 5:00 am on Saturday morning that a room was open for us to move in to in the hospital. Dustin got ahold of my mom and sister. They were on their way down right away.
Saturday late am, December 9th. We try to get some rest but are constantly interrupted by the nurses checking vitals and administering meds. I learned quickly that a hospital is not a place to catch up on sleep! Dustin was there for me the whole time, not once whining or trying to find a way to leave. He has been so supportive through all of this.
Mom and Meg arrive around 10:00 am. I am so grateful they could be there.
Chris and Vanessa arrive in the early afternoon and stay all afternoon. Hospitals are so much more enjoyable when the people you love are there with you! We had a good time, laughs all around. I was in more pain when everyone left, but it was a happy pain!
Over the next four days, time does not fly. Family and friends from all around call in to check on me. Co-workers visit and call in. Flowers galore! It was so nice having support from everyone.
Throughout my hospital stay my everyday routine went like this - 12:00 am vitals; 2:00 am Lovenox shot in the belly; 5:00 am blood drawn; 7:00 am vitals and meds; 8:00 am breakfast; 10:00 am vitals; 12:00 pm lunch; 2:00 pm Lovenox shot in the belly; 3:00 pm vitals; 5:00 pm visit with Dr.; 6:00 pm Coumadin and dinner; 8:00 pm vitals; 10:00 pm vitals. Bless those nurses souls, but can't a girl get some sleep?
I will admit, my stay at Mercy Hospital was good for my first time being in a hospital. The nurses were good to me and were friendly, at times. I took a liking to my day nurse, Nina, during the week. She was good at explaining what was happening to my body and why.
The duration of my hospital stay was due in part to the fact that my INR (or Protime) levels in my blood needed to be between 2.0 and 3.0 for my Coumadin to be dosed appropriately. My INR on Sunday was 1.2, on Monday was 1.2 and on Tuesday was 1.4. Dr. said that I was okay to go home on Tuesday if I felt well enough. By then I was quite restless and beginning to feel like myself again, I was certainly ready to leave! We started packing our bags to head out and finish up prescriptions and discharge paperwork when the Doc. walks in and asks us to sit down. He told Mom and I that the results from my genetic tests came back. I tested positive on the Lupus anticoagulant genetic mutation test. I tried holding back on the tears. I looked up at the nurse, whose eyes were watering, and then over at my mom. I saw Mom crying and I couldn't hold back. Mom apologized for everything. She was not to blame for any of what has happened.
We then gathered all of our bags and headed out of the hospital on Tuesday night at 6:00 pm. My first night home was good. Rest was easier to come by, other than having to give myself shots in the belly in the wee hours of the morning.
A condition of my early release was to go in to the INR clinic to have my blood checked on and Coumadin dosed. I went in to the clinic on Wednesday, December 13th and visited with an Internal Medicine doctor. She informed me that my INR had gone up to 1.9. She also said to keep taking my Lovenox shots until my next appointment (Friday). The test results came in for another genetic test, I tested positive for Factor II: gene mutation. This means I am predisposed to blood clotting, similar to the Lupus anticoagulant test. More sad news, but good to know now instead of later in life.
Now my story reaches today, Friday, December 15th. I went into the clinic today to have my INR checked again. This time it went up to 2.1. Good news! While I was in visiting the Dr. the Dr. I saw on Wednesday called in to check on me (she had to be in the hospital that day).
I am even getting support from the Docs! Today I took my last Lovenox shot. What a relief. I hate needles, and giving shots to myself isn't much more fun!
So, this starts the beginning of a long, new journey. I will be visiting a hematologist in January to talk about the next steps and plans for my life with coumadin. I look forward to learning more about what I can and cannot eat/do/have in my new life. Thank you to everyone who has helped me and been there for me through this, especially to my Mom and Dustin.
