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.
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!
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I have been Diagnosed with multiple myeloma and have acquired blood clots in one of my legs. During my swelling for about 3 wks my husband said I needed to go to the emergency Rm. They gave me a blood thinner, I would.to know what can I take instead.
My dianosed
I suffered three years with decreased breathing. It was the only symptom I had . I saw many doctors, had ct scans, mri’s , xrays. Not one of these specialists found the clot in the lung. I was supposed to have a ct scan with contrast but the young man doing it couldn’t get the IV needle in me so he did it without contrast. So I was told also by that doctor that I did not have a PE even tho’ he had suspected one due to my bloodwork. He did not follow up – he was a hospitalist and only “on” the floor for the weekend. I never saw him again. Another few months go by and I still cannot breathe during exertion. Finally I was so weak I was falling out of bed, out of my recliner, and falling over. My husband took me to an ER near our house that was new. The doctor asked me a couple questions and said “I think you have a blood clot on your lung so we are going to do a CT scan.” I said, I just had one and was told it was ok. He said, “Well, we will do another.” (arterial blood had by then been drawn from me and I guess he had the results). Short story now: yes, I had a blood clot on my right lung, large one, long and stringy. No idea why. i’d like to know where as I’m as afraid as the rest of PE patients that I’ll get another. I was in the hospital 7 days, came home with Coumadin, 24/7 oxygen, and walker. I am 74 and until now, in really great health. I was looking forward to retirement and traveling. I have been housebound for five months. I have home care thanks to a great husband and nurses that come to my home and a physical therapist. I have made progress in the strength dept. but not in the breathing dept. I have a followup ct scan scheduled for Sept.
I seem to be very sensitivie to medications and Coumadin is no exception. I’ll tell y’all (I’m in Texas) what it does to me and maybe you won’t freak out about some things that are happening to you:
My skin started sluffing off – looked like I had dandruff all over my body and clothes.
My hair started breaking off and thinning out.
I had diahrrea and nausea. No vomiting
Barking cough.
Coumadin “fog.”
No appetite.
If anyone else has these problems, it is the Coumadin.
I did have one relapse one week after coming home from the hospital – I had been having diahrrea and started to faint on the toilet. My husband got me cleaned up and in the wheelchair and we called for the ambulance. It was here right away.
(ten minutes at most). The EMT’s increased my oxygen in the ambulance and started an IV. ER was waiting for me and I had great care and xray was taken immediately of my chest. They kept me to hydrate me. They were concerned I had another clot but that was negative. However, it is best to get to an ER rather than trying to be brave and hold out at home, hoping things get better.
I’m looking at 1to 3 years’ recovery. I have a friend who is 80 and she just got back from a trip to the Arctic Circle, so that is my goal – she is my link to the future.
The fact that for three YEARS I went from doctor to doctor saying, “I feel fine , but I can’t breathe” is inexcusable. Also inexcusable for me as I did not say the heck with this city, I’m going to Mayo Clinic or Cleveland Clinic. I should have done that a long time ago. So, don’t delay if you have any kind of symptoms – remember, the only clue I had was shortness of breath upon exertion. As most of you, I thought it was old age and/or being out of shape and overweight…As many of you have said YOU have to be your own advocate. It’s also nice to have someone else to help you when you get home from the hospital. I was as weak as a kitten. I could not shower or change clothes. My husband has been a great caretaker. I am lucky to be still on the planet.
I had a knee replacement. A physical therapist was coming to my home giving me therapy. About two weeks after the knee replacement, I woke up with a cold sweat, shortness of breath, and severe chest pain in the center of my chest. I took pepto bismal and went back to bed. At 10:00 a.m. the physical therapist came and called the Physician’s office. He told her that I needed to immediately be taken to the ER. I went to a doctor’s emergency care. They immediately transported me to the hospital via ambulance. In the ER they did a CT Scan with contrast. I was told that I had a DVT in my leg and also blood clots in both lungs.(Pulmonary Embolism). I spent 5 days in I.C.U. and 6 more days in the hospital. I was told my blood clots were Heparin Induced Thrombocytophenia. (H.I.T.) This was a rare blood disorder. For twelve days after getting out of the hospital, I gave myself Lovonox injections (Lovonox is a form of Heparin). I was spitting out blood in my mouth when I brushed my teeth.
One month later, I had a second episode of Pulmonary Embolism. Blood clots in both lungs again.( The remaining clot in my leg traveled to my lungs again). This time I was taking zarellto. At this time a greenfield filter was installed in my main blood artery. I am now on Elequis. It has now been a little over six month. (Four months after the second PE) I had a gallbladder attack. Again I spent a week in the hospital. I have no energy. My breathing is very labored. It is good to find this web page. I am very worried when traveling. I am afraid I will not survive a auto accident if I’m on the blood thinner.
Thank you for all you do. I was transported by a nonprofit medical helicopter, and it very well could have saved my life. I am so grateful that I don’t have a life flight bill to add to my stress. Huge blessing!
That’s a wonderful story, a great inspiration!!! Love it!!