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!

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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.

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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! 

A Night to Remember (In the ER)

That is an awfully intuitive animal. 

So, where was I....oh, yes. Ativan. Ahhhhhh-tivan. The very lovely ER physician decided to give me a benzo to shut me up. Benzos are like grown-up versions of the lollipops they give you at the dentist's office. "If you are a good girl and stop crying, you can have an ativan." Ok!

It seemed that as soon as the doctor came back to deliver the diagnosis of PE and tell me I was being admitted, a team of nurses mobilized to hook up my IV to Heparin to make sure the meds were delivered immediately. Their actions were very quick and precise - I felt like a race car that pulled into a pit stop for a tire change. During all of the poking, prodding, and dosing  they explained that the sooner the medication is in my system, the sooner clots will stop developing. Here is an interesting fact: Heparin, Coumadin, and similar medicines do not actually break up the clots. They just prevent the blood from forming further clots.

Hmmm...so if the clots are still there, is my leg a virtual ticking time bomb?

I've asked several doctors about this and received only the vaguest of answers. This is my understanding based on the conversations I had:

• Yes, a piece of the clot in my leg could break off and cause another pulmonary embolism (eek!), however, this is "rare". (To one of the physicians, rare = a 1/100 chance). Laugh-out-loud!
• Yes, clots can still develop while I am taking blood thinners. Again, this is "rare." I didn't even bother to ask about statistics this time because, frankly, I do not want to know. 

Ignorance truly is bliss, especially when you are a hypochondriac with a life-threatening condition who has terribly bad luck. On a scale of 1-10 of how terrifying this is to me, I would say probably 12.5. Since I've received this information, every tiny ache in my body is a blood clot the size of a softball travelling to my brain in order to explode it. 

In conclusion, internal organs are stupid, gross and more trouble than they are worth. In my next life, I want to come back as an amoeba. 

NEXT UP: My hospital tour diary

Smile Mighty Jesus, Pulmonary Embolism's Got me Down

Oh, that giant needle is going into my arm? Cool!

When asked about their vision of hell, some people would certainly answer "an ER waiting room." It is difficult to argue against this one. Not only are you waiting. And waiting. And waiting. But then, you are waiting some more. However, Tom Petty was incorrect when he nasally crooned that waiting is the hardest part.

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Open Letter to Tom Petty
Dear Tom Petty,
Contrary to what you believe, waiting is not always the hardest part. Sometimes the hardest part is watching someone vomit yellow bile into a clear ziploc bag. Other times, it is the necessity of touching surfaces you KNOW are contaminated with MRSA. Sometimes, it's listening to someone scream in pain as they are being poked and prodded. In conclusion, Tom Petty, waiting does suck but there are worse things out there.
*********
I digress.

After being taken back to an assessment room, the doctor spoke to me within 5 minutes. She listened to me, took my concerns seriously, and ordered blood tests to determine the D-dimer level in my blood, among other things. D-dimer is an anti-clotting substance found in your blood. If the levels are high, it suggests the possibility of blood clots. Before I was even notified of the results, I was taken for a CT scan with contrast to see if there were any clots in my lungs. After both of these tests, I waited. And waited again.

When the the doctor had the opportunity to review my results and began speaking to me in low tones, I knew she had bad news. She confirmed the presence of a clot (or clots) in my right leg, which I expected. This is called deep vein thrombosis (DVT). Then she dropped a bombshell: She also found a small blood clot in my right lung, which is called a pulmonary embolism. The process of the clot forming and then embolizing is called venous thromboembolism (VTE).

After I heard "blood clot in lung" I stopped listening and started crying. People DIE from this. People like my very own grandmother. Before I could rejoin the conversation about my course of treatment, I had to take a few moments to curse my terrible luck and (probable) genetic link to clotting disorders. Thankfully, the nurse was kind enough to give me an ativan so I could once again form complete thoughts....

To be continued...
(Next chapter: Treatment)

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