Surviving Myself by Don


Hello, my name is Don.  I am writing you to share my story and to express my sincere appreciation for your efforts with public awareness of clotting disorders.  I am a Paramedic employed with a Non-Profit medevac helicopter organization. We transport high acuity patients on a regular basis.  These patients range on a very broad spectrum, from multi-system trauma to acute medical emergencies including stroke, heart attack, and pulmonary embolism.  Education and clinical experience has informed me of specific manifestations to assess for, when differentiating acute pulmonary embolism (APE) as the causative culprit.  A classic text book description of pulmonary embolism is “atypical” chest pain, among many other descriptors.  Atypical meaning APE manifests in  a way inconsistent from other chest pain causing conditions, hindering diagnosis and impacting prognosis.  In my career I have cared for and treated many patients impacted by acute pulmonary embolism.

Prior to my grandmother’s passing, some early childhood memories of mine are visiting her during her many hospitalizations for deep vein thrombosis.  Her unfortunate “condition” was passed along to her children, specifically my mother and aunts. All have been plagued with numerous DVT hospitalizations, varicose veins, coumadin life changes, and lovenox shots.  Factor V Leiden has been confirmed as the genetic clotting disorder that has been passed down from generation to generation.

I am a relatively healthy 35 year old male that lives an active life with a beautiful wife and two young amazing children.  I’ve committed my career to helping others in their most worst times of need.  I volunteer a large portion of my free time to our local volunteer fire department and ambulance, serving as the Fire Chief and also a volunteer paramedic.

don and wife

Just about a week ago, I developed pain and discomfort in my right bicep.  The medical side of me dismissed the very “different” pain and discomfort to that of a typical pulled muscle, and life went on.  A few days ago, while tapping maple trees with my brother-in-law, one of our snowmobiles became stuck resulting in strenuous lifting.  The following day I began experiencing “atypical” chest pain.  Yet again, the medical side of me dismissed the chest discomfort and pleuritic pain as that of just another pulled muscle.  After all, what else could it be?  Following a few sleepless nights racked with severe stabbing pain radiating to my right shoulder, I relented and sought evaluation at my local emergency room.

Personally knowing the majority of the staff on hand, including the physicians and mid-level practitioners, still didn’t preclude my assessment to that of a strained muscle, despite my colleagues thinking differently.  During evaluation and initial work up, labs were drawn, and my D- Dimer was found to be elevated.  During my contrast CT scan, I was still convinced that I was experiencing a strained muscle, that is until the results came back.  Multiple acute pulmonary embolism with pleural effusion.  Ultrasound confirmed a large DVT in my right bicep.  Not until that point did my years of training, assessments, and experience finally clear up my personal tunnel vision.  It was all too clear.  Family history of Factor V Leiden, family history of DVT, pain in right bicep, strenuous physical activity and exertion, atypical chest pain and shortness of breath EQUALS pulmonary embolism.

How did I miss this?  The answer is evident among the medical community as a whole.  One out of every three pulmonary embolism patients presenting to the ER are misdiagnosed, according to a recent retrospective observational  study.  Education and awareness to the community, healthcare workers, and first responders is paramount.  This disease is quickly overlooked, and can be so very debilitating or even fatal.  So again, I express my appreciation for your commitment to public awareness and education, which unquestionably will save many lives.  God willing, I will continue my passion and save many more future lives.  If I could ever be of any assistance, please don’t hesitate to ask.

Thank you, Don, for sharing your story with the BCRN community. Be sure to connect with Don in the comments below!

lost in clouds button

How to track and manage your INR with OATBook

OATBook Review Title Photo

I left the hospital after a total of ten days, five of which were spent in the cardiac intensive care unit (ICU) after my DVT and PE. I wasn’t even sure what happened to me – although I had a vague idea that I was lucky to be alive from what I kept hearing – and was even less sure of what would happen next. I left on Arixtra injections, a cousin to Lovenox anticoagulant medication, only with less clinical research available and non-reversible if I were to be in an accident and have uncontrolled bleeding. I don’t think I even knew what that mean beyond, “Don’t get in an accident.” I heard the injection, which I was prepared to administer myself, but not prepared for the increasing difficulty of it, would keep my INR stable. ‘INR’ was completely new to me and something I hoped would go away in a week or two.  What is INR and how can you manage your INR with OATBook?

INR stands for international normalized ratio. The INR provides some information about a person’s blood’s tendency to clot (which is often described as how “thin” or “thick” their blood is). There are several scientific factors as to why and how this number is evaluated to be as reliable as possible. A normal INR is approximately 1.0. People taking the blood thinner warfarin (oral) typically have a target INR of 2.0 to 3.0, although it all depends on your body and what you and your doctor have discussed. People with an INR higher than the normal range who aren’t taking warfarin may have a medical condition that needs further evaluation. A low INR is rarely significant.

Injections (such as Arixtra or Lovenox), while extremely expensive (I was looking at $2,300 before my deductible for 20 injections), are often easier to regulate in terms of INR as long as you are able to give yourself an injection at the same time each day, which I was. When taking an oral anticoagulant such as warfarin (Coumadin), a patient usually has to have weekly blood draws (at least in the beginning) to monitor INR.

I was on those injections for ten months as a result of my INR’s inability to stabilize, making it increasingly difficult for my body to transition to an oral anticoagulant such as warfarin. When my doctor did try to switch me to the warfarin, I became immensely confused with all of the different dosages and blood draws – not to mention remembering to take my pill – in part because I was also battling slight loss of cognitive function and memory as a result of my illness and trauma. While I was told this was a normal side effect, it was difficult because when the nurse called to give me my dosages for the week, they literally went in one ear and out the other before I even had a chance to write them down. So, I would guess (and get it wrong) and my INR suffered greatly in terms of highs and lows, forcing me to go back on the injection each time.

I came off the injection again at the beginning of April of this year and have remained mostly stable since then. Warfarin is more practical for many because it is cheaper, has been a part of long-term safety and side effects research and is much easier to administer. People have been on it for life and have done okay, if not well – people have not been on Arixtra for life to date. It is reversible if I were to be severely hurt or injured, which takes a big worry off my mind.

What’s different this time? Well, it is true that my cognitive abilities and memory have grown much stronger, and I am better now than I was ten, six or even three months ago, but the transition to oral anticoagulation therapy would not have been possible this time without the OATBook. The OATBook is a mobile phone app that helps you track, monitor and store your complete INR history in one place; keep your dosage times consistent and never miss a dose; and stores your appointments and reminders.

I literally could not manage my INR without it and it has become a crucial part of my Oral Anticoagulation Therapy, as the name OATBook suggests.

The OATBook took a little time for me to get used to, but once I did, I quickly found it was essential to managing my warfarin dosages, INR levels and blood draws. Plus, it lets me know via an alarm when to take my medication daily (11:32 p.m.) and will continue to go off until I check that I have done it. It also reminds me when I need to get a prescription refill-

SS medication is almost out on home screen

It is invaluable to me that I can also set a reminder to get my INR checked (I have a standing order at the hospital clinic so I choose when I want to go, as long as it is the same time each week) and the app charts my levels-

SS graph of INR range

I can also send or save it if I need to take it to a doctor (who is not my hematologist)-

SS email your graph

You can see, for May 1, how I got my INR checked, had an appointment and checked off that I took my pill that night-

SS options screen with notes, meds, inr

You can customize OATBook to remember the important things like what your therapeutic INR level is and there is also a place on each day to record notes-

SS settings where you can set your INR range

If you are are like me and your dosage changes daily, you can set each day to be different in OATBook or you can have it auto-fill the same dosage each day for the month-

SS entering your dosage


You can download OATBook for iPhone and you can also find a user guide and answers to frequently asked questions. I found the customer service was very helpful and prompt when I didn’t realize you swipe right to left on the days to make the options appear (it took a minute to get used to, but I have no problems now).

Share your story. How do you keep track of your INR? Was it or is it a struggle for you? Have you heard of or used OATBook?

In healing there is hope and you are not alone,