My first day at the Coumadin Clinic

So today would be what I call the 11th day of the rest of my life.  I suffered my pulmonary embolism attack on Thursday, April 21, 2011.  I have decided that day was the worst and best day ever, for obvious reasons. 

Amazingly, when I was in the hospital, none of my situation was actually being communicated to my Primary Care Physician.  Whilst there, the thought did actually occur to me, but I figured that was just me being skeptical.  She HAD to know I almost died, right?  Apparently not.

I was required to get my blood drawn daily until my levels reached 2.0.  The first day, as I waited to hear if I crossed the threshhold, no one called.  No biggie, I would just proceed to take the pill and administer the shots to the stomach, and hope to hear from someone after TOMMORROW’S blood draw.

When I got to the lab, instead of being called right in, I was called to registration.  It was then that I found out my lab results had gone to Dr. Durrani, but she didnt know why she was receiving them.  To the lab, it appeared I misstated her as my PCP.  “Apparently the hospital did not communicate with my doctor while I was hospitalized, which is why shes holding that information in her hand and wondering why shes receiving it.”  They assured me that they would handle it from there, and apologized for the inconvenience.  “Next time you come in, you just sign in.  No registration.  Easy peasy.”  And that was the last I would see of the lab.

At my meeting with Dr. Durrani later that day, I was given orders to go to the Coumadin nurse.  I had no idea this existed.  A nurse, specifically devoted to monitoring and tracking patients on the blood thinner, would now be in charge of my case.  I met with her today.

Karen explained that she would be seeing me weekly at first, and then less often depending how stable my blood levels are.  Today, unlike the lab, I had my finger pricked.  It wasn’t bad at all, but I had made it horrible in my head.  When I first saw the little finger pricker, I decided I preferred the needle blood draw.  I was just getting used to it, and now they change it on me???  I laughed to myself as I thought about it.  I reminded myself how lucky I was to hear that I was at 2.0 today.  Had I not been, I would be back later this week for more finger pricking.  Fortunately, I dont have to come back until Monday, May 9.  Yay me!

2.0 just barely puts me in the range, but it puts me in the range, nonetheless.  I have decided that although there are many things that affect the potency of Coumadin, I am not going to drastically modify my routine of eating in any way.  I admit, lately, after having been off from work, I have frequented fast food joints way more often than I ever would in one week, but, in general, I havent abandoned anything.  As long as I am consistent, my nurse will prescribe a dosage that works for me and my lifestyle.

As for the bruising that comes and goes, I was assured that it would lessen.  Of course, my second day on the stomach shots and upon rising out my hospital bed I see three black circles on my outer hip.  No pain, just awful black circles.  9 days later, they are beginning to fade, but are still very obvious.  I was hoping this would not continue to happen at randome intervals, so, it was a relief to hear that I would not be going around all summer looking as if I just got into the wrong end of a fight.

I was supposed to go back to work today….  Forgot to get a doctor’s note last week, so I had another day off.  Once I arrived home from my appointment, I decided I really needed to take a nap.  Honestly, I felt like I hadn’t slept in days.  I am not really sure where that degree of tiredness came from.  I decided I was just flat out tired.  In addition, I decided this was my body’s way of taking time to repair itself. 

Honestly, I am not at peace with my recovery.  I do still have various tingles and aches and some sudden short bursts of discomfort.  I dont want to rationalize any of it, but I also dont want to overreact.  I underreacted during my attack and went 8 hours not seeking any help, not realizing what was happening to me and trying to avoid embarrassment of sirens lol.  I figure if I am having any persistent pain, I will most certainly head to the ER.  I havent had pain that i would consider consistent, but I have had pain that occurred in the same area.  If it increases, it will not go undealt with.

Although I do not get to find out my Coumadin level for another week, I will most certainly post a few more times during the week.  Feel free to drop a line and email me at:  MizzOHIO@aol.com about your experiences, or with questions about mine.

PE doesn’t just stand for Physical Education anymore!

Bilateral PE.  That was the diagnosis.  I realize he just told me I had two huge blood clots blocking the entrance to my left and right lungs.  I also know I cant breathe and havent been able too since about 10 am today…. approximately 10 hours ago.  When I ask them what PE stands for he wrote “PULMONARY EMBOLISM“.  “Dont people normally die from those?” I ask.  “Yes.  Most of the time.  And that’s why we are surprised with the size of your clots, you made it past Noon”  I cried like a baby. 

I was discharged from the hospital three days ago.  Every day I think Im getting better.  I am required to give myself two shots of a drug called Lovenox each day until the oral drug, Coumadin, reaches a theraputic level for my blood.  “Theraputic” basically means “clot preventing”.  I have to get my blood checked every day at the lab until the theraputic level is reached.  I had the option of staying in the hospital and basically waiting for the shots and the pill to be administered, or, I could assure them I could do it on my own at home, which I am doing.  I’m very proud of myself actually.

I do still have reminders of what my body was put through.  I am not pain-free.  I am thankful to be alive, but afraid it could come back anytime.  There was no warning of the first attack, mind you.  I was fine one minute, then feeling as if my heart was racing yet my feet were moving uphill in quicksand in the wind with a 100 pounds strapped to my back.  Justifiably, a little paranoid, yet hopeful that each day will get better since I am overall a very healthy individual, or so they tell me :)

Most people are not diagnosed with Pulmonary Embolism until autopsied.  I cannot tell you how many times I heard the word “lucky” when I was hospitalized.   Doctors and nurses would come into my room and see me, sitting up reading, or perhaps blogging, all with a smile on my face and energy I had pre-PE and ask, “are you the patient?” as if someone else would willingly impersonate me at a time like that.  I was well aware of the severity of what I went through, but I WENT through it…time to move on.  I am literally a survivor and appreciate life differently now.  Whether you are a survivor, as well, have questions, or are a caregiver or support someone who has experienced a PE, feel free to comment.  There are times I will also need reassurance.  After all, recovery is a process and of course some days will be better than others…   I will surely look forward to your comments, especially then.

Follow

Get every new post delivered to your Inbox.