Pulmonary Embolism Recovery: To ER or not to ER?

I want to rub his head for good luck. (That's what she said).

Surpassing "what is the meaning of life?" the above question has become the most profound and frequently asked by my little spark of consciousness over the last few weeks. Based on things I have heard from other pulmonary embolism survivors, this seems to be a common dilemma. So what is answer?

I haven't a clue.

When I was discharged from the ICU on 04.30.2013, I was thrown into an entirely new world in which every ache, pain, bruise, tickle, cramp, and flutter is a potentially fatal symptom that deserves immediate attention. As any anxiety-sufferer/hypochondriac will tell you, even the most seemingly insignificant unexpected bodily responses are symptoms of a disease that is murdering you from the inside out.

Even "well-adjusted" people who have suffered a pulmonary embolism rarely escape the experience psychologically unscathed. Trauma is trauma - some are better equipped to handle it than others, but it still leaves an imprint on one's mind. Anxiety is a totally normal response to an event that almost caused your demise.

So, to get back to the question - when should you go to the ER? I haven't found a good answer to this problem yet. However, the more I learn about my condition and my body, in general, I feel that I have become a better listener to my internal processes. I am becoming accustomed to the chest pain, fatigue, and shortness of breath. Over the past three weeks, I have paid close attention to the nature and duration of my pain. Deviations from the norm would be one factor that would invite me to consider the emergency room. Any new and troubling symptoms will probably prompt me to go without too much hesitation.

During my last ER visit, which turned out to be an intense flare up of my existing PE symptoms, the nurse told me that, even though they did not discover any new clots, it is never a bad idea to go to the ER when you are experiencing shortness of breath and chest pain. The fact that she said that made me feel much more at ease. I do not want to be the girl who cried wolf, but, I have decided that is better to be safe than sorry.

Also, it's not a bad idea to have a list of phone numbers you can call to ask for advice before you decide to take the ER plunge. For example, if my problems are related to medication side-effects, I will call my pharmacist. If the symptoms involve chest pain or shortness of breath, I call the nurse at my doctor's office or the NurseLine through my health insurance. These have all been effective tools to make the decision easier.

I am still figuring all of this out and will probably never develop a 100% effective formula. I am learning to trust and listen to my body and, at this point, I think this is the best thing I can do for myself.

If there are any other PE survivors out there reading this, how do you make this determination? What prompts you to go to the ER? Or what helps you calm down enough to feel like you can treat your symptoms at home?

This is my blog and I will cry if I want to

HA HA!

Dammit, Life! Yesterday was so good! I even went to bed with a smile on my face. Why do you mistreat me so? 

It is almost comical when the stars align with such precision that every possible thing that could go wrong will go wrong and at exactly the same time. My day started with so much chest pain that I had to call the doctor to reschedule my appointment. Isn't that funny? I was going to see the doctor about my chest pain but my chest pain prevented me from going. Hee, hee, hee. 

I didn't even get to have my coffee yet before I began to roll my sisyphean bolder of anxiety up and down and up and down the imaginary mountains that exist in my brain. 

We all knows what happens when too much anxiety is combined with Pulmonary Embolism injuries - TROUBLE BREATHING! After a cute little bout of hyperventilation, I collapsed, exhausted, on the floor causing a very nice bruise on my very sore ass. (Well, it was more like my outer thigh, but I wanted to use a swear). 

All of these events were so absurd to me that I could do nothing but laugh. And then I started thinking about all of the minor annoyances that one encounters in day-to-day life, and felt pretty lucky I don't currently have an ingrown toenail. (Seriously, that shit would probably push me over the edge by this point). 

An appropriate response to a passive aggressive letter

Here is a list of mildly annoying things that did not happen to me today:

• A bird did not poop on my head
• The cats did not vomit in the bathtub again, bless their little hearts
• I did not receive one passive aggressive email today
• Nobody carved the word "ASS" into the hood of my car
• My professionalism was not insulted by men who think it is appropriate to address colleagues as "dear" or "honey" when you are saying something they don't agree with
• I did not find any severed digits in my Campbell's vegetable soup
• All urine and fecal matter made it into the toilet, where it belongs
• NO PAPERCUTS

So it wasn't all bad. Hopefully the universe is not spying on me to make all of my nonexistent mild annoyances come true!

Tomorrow's episode: Is an ER visit in our protagonist's future? Or can she finally make it through a week without having to take a trip to the hospital? Stay tuned! 

Post title

Proof positive that there is room for improvement when implementing a plan for improvement

Irony = being too sick to go to your previously scheduled doctor's appointment. 

fml

A Day in the Life

Tea, anyone?

Have you ever wondered what a week in the life of a pulmonary embolism survivor is like? Oh, you have? Great! I will tell you!

***

Thursday, May 2nd: Went to my first appointment with my brand-new primary care provider and did not like her at all. This is mostly due to her hands off approach and the fact that she does not want to see me again until AUGUST. If I am having difficulty breathing and chest pain on a daily basis, it would be nice to at least pretend that I have access to a doctor who will take my concerns seriously. Hmmph. During this appointment, though, my warfairn was increased to 10mg/day and I was told to continue the twice daily Lovenox injections.

Friday, May 3rd: Said shortness of breath, chest pain and dizziness prompted me to take a return trip to the ER in an ambulance. What was the main problem, you ask? Dehydration. Whoops! Who would have thought that I actually need to drink water? The good news: a chest x-ray showed (read my lips) NO NEW CLOTS!

Saturday, May 4th & Sunday, May 5th: I don't really remember either of these two days. I'm guessing they consisted of more chest pain, naps, crappy TV, pajamas, and probably pizza. Actually, knowing me, definitely pizza.

Monday, May 6th: This was my first day back to work after being in the hospital! But first, I had to go to the lab to have my blood drawn. By this point, needles have become old hat to me. After being poked and prodded, I was off to my office like a good little worker bee. Going back to work was a positive step for me  - it provided some normalcy after one of the craziest weeks of my life. Plus, I love my job so I was glad to be back.

Tuesday, May 7th: The nurse from my PCP's office called with the results of my INR. It was in a therapeutic range so I was told to discontinue the Lovenox injections (yay!) and decrease my warfarin to 7mg/day. I also spoke with the nurse regarding my concerns about pain management and she indicated that the doctor didn't really specify in my chart what I am to do. Grrrr. Daily chest pain is scary, especially for a hypochondriac such as myself. Don't they get that?!?

In an interesting turn of events, when I examined my bottle of warfairn I had filled at my local Rite Aid, I noticed that the dosing instructions were incorrect. As such, I had been taking 1/2 of the dose that was prescribed to me by my doctor. I contacted the pharmacy, they admitted their mistake and apologized for any "inconvenience." It certainly would have been an inconvenience if I developed more clots and dropped dead! I still need to write a few angry letters to anyone who is masochistic enough to listen to me.

Wednesday, May 8th: More chest pain, more anxiety. At this point, I am at a loss of what to do because my PCP does not seem concerned but I feel like I am having a heart attack. I decided to do what I do best: nothing.

Thursday, May 9th: After I finish my workday, where did I find myself? Back at the ER, of course! I was having so much trouble breathing that I thought I was going to die. Plus, Creeps really wanted to visit the hospital cafeteria again. The food really grew on him.

I really can't say enough good stuff about the ED staff at Allegheny General Hospital. They are thorough, understanding, and compassionate. No matter what your medical history is, chest pain and shortness of breath are terrifying things. Just knowing that I was in such capable hands calmed my nerves considerably.

The "normal" test were performed: EKG, blood work, chest x-ray. Fortunately, the results were all good and my INR was still in an appropriate range. The doctor explained that, because of the significant damage to my lung, my recovery will take at least a few weeks. During that time, I can expect a degree of pain and difficulty breathing. Anxiety, he said, will only make it worse because panic attacks can mimic the symptoms of a PE. It's like a vicious cycle - my chest will start hurting, I will freak out, then I will have trouble breathing, and freak out some more. The more I freak out, the worse the symptoms will be.

He suggested that I keep my anxiety under control by taking Ativan when I start to have symptoms. He also prescribed pain medication. These two meds have worked wonders at keeping anxiety and pain at bay. Sometimes, all you really need is an understanding physician who expresses genuine concern for your symptoms.

Friday, May 10th - Sunday, May 12th: I've been following the recommendations of the ER doctor and have been able to effectively manage the pain and anxiety associated with it. I'm still not feeling great, but now I feel like I have the tools to deal with my symptoms. Also, I bought ice cream and cookies at the store. Ice cream will cure anything that ails you.

***

After a cycle of naps, meds, ice cream, more naps, another dose of meds, and a cookie supper, I will be ready to tackle anything that is thrown at me next week! 

Super Important Business

Before I continue my personal saga, I wanted to explain how important it is to know the risk factors and warning signs of a developing blood clot.

THIS IS REALLY IMPORTANT.

 Because I am cocky and believe that I am invincible, I ignored very clear warning signs indicating that I had a clot in my leg. Had I not been such an idiot, my clot may not have broken off and lodged in my lung. In fact, the only reason I finally did go to the hospital was at the insistence of my good friend, Creeps, and that was only to shut him up. (Just kidding, Creeps! I <3 you!).

Please learn from my mistake and realize that THIS CAN HAPPEN TO YOU. It doesn't matter if you are young, old, active, sedentary, healthy, etc. Anyone can develop a potentially lethal blood clot.

DISCLAIMER: this is not medical advice. I'm just someone who wants to raise awareness for what many call a "silent killer."  If you believe you have a blood clot or pulmonary embolism, go to your local ER or call 911 immediately. DO NOT WAIT. The below lists are not a comprehensive review of every risk factor or symptom. Contact your physician for more detailed information.

These are common risk factors in the development of clots:

• Recent surgery
• A period of immobility (as in a hospital stay or prescribed bed rest)
• Taking hormonal birth control pills
• Long trips
• Working a desk job or sitting for long period of time
• Smoking cigarettes
• Being overweight/obese
• A family history of DVT
• A previous DVT and/or Pulmonary Embolism

These are the symptoms of a DVT

• Pain in your leg, ankle or foot. This pain can feel like a sprained/bruised muscle, but unlike a sprain/bruise, the pain will become worse over time and not better. 
• Swelling. Compare your calves - does one appear to be larger than the other? Does one feel "tighter" than the other?
• Redness. Often times, the skin above the DVT will become red. Sometimes the affected area may turn blue or be drained of color. Have you experienced any recent trauma to the affected area? If not, you may want to try to determine why your skin is changing color.
• Warmth. Is the affected area warm to the touch? Even if it turns out not to be a clot, this is still something that should be reviewed with a physician.

These are the symptoms of a Pulmonary Embolism

• Chest pain
• Shortness of breath
• Sweating
• Fever
• Anxiety/nervousness
• Heart palpitations
• A racing pulse
• Cough, with or without blood
• Collapse and sudden death. As scary as this is, some DVTs and PEs present no noticeable symptoms. 

The most important thing to remember is to listen to your body. If you feel there is something wrong, DON'T WAIT. GET IT CHECKED OUT. 

Don't listen to them. Dry shampoo DOES NOT work. 

In regards to my specific case, I had many factors working against me. I smoke (stupid), take hormonal birth control, and was hospitalized for a week during which time, I moved very little. Ladies, if you are like me, you probably just throw away that warning on your BC that says "smoking while taking this medication may cause blood clots." This girl here, the one over there on the right, is living (thankfully!) proof that BC + smoking do not mix. This makes me sad, because few things are more satisfying than a post-coital cigarette. But I digress...

When I began to develop symptoms (the tenderness & swelling in my leg were the first to materialize), it was easy to explain away as a sprain. The mild symptoms lasted approximately three days. However, when my calf started to turn red, warm, and  became extremely painful, it was harder to ignore. By Friday, I was limping. The PE symptoms appeared in the early afternoon on that fateful Friday. It started with a SHARP pain underneath my heart, transitioned to extreme dizziness, and then became severe shortness of breath. I'm either dedicated to my job or stupid, because I stayed until the end of my shift and then went to the hospital after work with the same sense of urgency with which I would return library books. 

The moral of the story is: Know the risk factors for clotting. Know the symptoms of DVT and PE. Share this information with everyone you know. And, please, please, please seek immediate medical attention if you think you may have a blood clot. If you ignore it, it becomes a ticking time bomb in your body that could kill you in an instant. 

So what if I am limping so badly I can barely stand up? I'm cool, man.

Look at my swelling. I SAID LOOK AT IT!

In the middle of April, I was hospitalized for being crazy (completely different, yet hilarious story.) About a week after getting of the hospital, I started noticing pain in my leg that felt much like a strained muscle. It wasn't getting any better, it wasn't getting any worse so I chose to ignore it.

As anyone who has spent time in a mental institution can understand, a doctor's office is the second-to-last place I wanted to be (the first, of course, being the mental institution). Anyway, who goes to a doctor for a pulled muscle? They would probably laugh at me.

When you have a strained muscle, you expect the pain to diminish day-by-day until it is completely healed. With the leg pain I was experiencing, it was not getting worse but it was not getting better. During this time, it was suggested to me that I could possibly have a blood clot. Being the person I am, my response was something like, "meh, meh, meh, blah."This conversation continued over the next few days until I promised to go to an urgent care center after I ended work for the day.

It is terrifying to think of how close I came to being not-ok (aka dead).

On the afternoon before my promised doctor's visit, I experienced the scariest chest pain of my life. It was sharp, like a knife puncturing my chest cavity, and was terrifying, although it only lasted about 20 seconds. When I regained my senses, I realized I was very close to passing out and I was short of breath.

The funny thing about this is that I was carrying my lunch, which consisted of a greasy pepperoni roll, back to my office. I remember thinking, "of course I have to have a heart attack while I am carrying probably one of the most unhealthy lunches in the history of lunch." When I laughed at the joke I told myself in my head, I felt like I would be ok. One can't be amused while they are dying, right? Stupidly, I finished the rest of my shift at work but went to the emergency room immediately after.

EDIT: My bff, Creeps, who drug me (kicking and screaming) to the ER just reminded me that I wanted to go to dinner before going to the hospital. The pepperoni roll I ate during the day was being digested and my stomach wanted something else. Creeps compromised by buying me a bag of Sun Chips and a Coke from the hospital vending machine. 

And this is where my adventure begins....

TO BE CONTINUED