[Editor’s note: ClotCare, from time to time, will post stories from individual patients who want to help raise awareness of clotting problems by sharing the details of their experience. Heather’s story is very similar to what happened with a female student at the University of Texas a few years ago in that both presented with the “classic” features of a pulmonary embolism (PE) and both were diagnosed as having pneumonia. In Heather’s case, after two emergency room visits, an ambulance transfer to a teaching hospital, and two days’ of hospitalization, the correct diagnosed of a PE was made. Unfortunately, the UT student who was treated for pneumonia died from her unrecognized PE after repeated visits for her “pneumonia”. According to Heather’s story, appropriate treatment was delayed until the next day even after the correct diagnosis was made, the probability of a deep vein thrombosis (DVT) in her leg was not evaluated, graduated compression stockings were not prescribed and a evaluation for a clotting disorder was not considered.]
Hi, my name is Heather. I am 18 years old and I’ve just graduated High School. In June of 2015, I decided to try to begin my Nursing career by taking CNA classes. I was quickly hired on at a local nursing home facility. A month went by, and I did not like my job as much as I thought I would have. I left the facility. A week after leaving my job, I began to have sharp pains in my right thigh and hip. I figured I had pulled a muscle due to transferring residents at the facility, so I tried to rest. The next day, the pain had moved to my right side just underneath my rib cage, and also to my right shoulder blade. It was painful to breathe, so my Mother and I decided to take a trip to the Emergency Room.
After being given a room and 2 liters of intravenous fluids, it was time to get a CT scan done. I had to move off of my bed and into another. Laying straight down, I could not get a breath of air whatsoever. I was glad to have the CT scan done and over with, believe me. I was rolled back into my room, and waited for the results of the scan. A doctor came in a little while later, and explained that I have pneumonia in my right lung, as well as gall stones. He also had told me, surgery would be scheduled later that week to have the gall stones removed. I was sent home with antibiotics and a rescue inhaler and was told to take Ibuprofein as needed. The next day came, and the pain only got worse. I was unable to talk, walk, or breathe without being in severe pain. I wasn’t getting enough oxygen and I felt as if I was about ready to pass out. My parent’s rushed me back to the Emergency Room.
After being wheeled into the hospital, my vital signs were taken and I was quickly given an observation room. My heart rate was 167, my oxygen in the 70’s. I was gasping for air. The nurses put a cannula in my nose and set the oxygen dial to 2 liters per minute, gave me a small dose of Morphine and also gave me intravenous fluids. They patched stickers all over my body, getting me ready for an EKG. I texted my boyfriend and let him know what was going on whilst in the midst of all this, and he was in the observation room with me in a split second. After the nurses had left, I just stared at my parent’s and my boyfriend, Ricky. He layed his hand on mine and started to tear up when he said, “I hate seeing you like this, I don’t like it, babe.” I started to tear up too. I didn’t like it either. I could only imaging the things that were going through his head at the moment.
An hour or so went by and my heart rate was still very high and my oxygen level very low. The doctor decided I needed to be sent to UK Hospital here in Kentucky for further observation. Ricky and I both started crying, while my parent’s reassured us that everything was going to be okay. Forty-five minutes later, two unfamiliar men with a stretcher were standing right outside my door. “You ready?” They asked me. I didn’t say anything back to them. They raised my bed, and transferred me onto the stretcher. I was wheeled out into the hallway, where I kissed my boyfriend and parent’s, and told them I would see them in a bit.
I had never been in an ambulance before, so I had no clue what to expect. Once I was in the ambulance, one of the men introduced himself to me while hooking me back up to some crazy contraption. I had decided I would try to sleep on the way to Lexington, because I live nearly two hours away. I didn’t want to worry that I would stop breathing in the ambulance, due to lack of oxygen. I didn’t want to think about what would happen to my family if something horrible happened to me. So I slept as best as I could on a bumpy trip. Waking up here and there, hoping Ricky and my parents were behind us.
Once I arrived at UK, I was placed in another observation room. Immediately being hooked up to oxygen and being put on another 2 liters of intravenous fluids. Five minutes later, I could see my parents and my boyfriend walk through the Observation Rooms’ entry. I waved at them, and they all came running towards me. They hugged and kissed me, and asked if I were okay. I told them, “I’m tired, but I’m alright.” Besides, it was two in the morning when I arrived at UK, who isn’t going to be tired? Everybody sat beside my bed, keeping a close eye on me. It was around eight in the morning, a nurse came in my room to get me for an X-ray. I had to stand for the X-ray and take deep breaths, which was very painful for me. I was just glad to be sitting back down in the wheelchair when we were finished. Once getting back to the room, my parents explained to me that they had to get back home and get some extra clothes and sleep a little longer while Ricky stayed with me. He had told me the only way he is leaving the hospital is with me.
Ricky took such good care of me while my parents were gone. Helping me get comfortable in my bed, giving me sips of Sprite when I needed it, getting a nurse when I was in pain, etc. A nurse even brought in a new bed big enough for the both of us to sleep in, how sweet! I know it must not have been easy running on little or no sleep, but he did it because he loves me. That evening when my parents were back, it was time for another CT Scan, which I dreaded. I already knew laying straight down, was going to be tremendously painful. Thankfully, it was quick and the technician helped make me comfortable while on the bed. Another day went by with nothing but continuous oxygen, intravenous fluids and pain medication. One early morning I was woken up to have an ultrasound of my gallbladder done. The technician had seen plenty of gall stones in my gallbladder, which wasn’t what I wanted to hear. A team of surgeons came into my room later that day to talk about surgery options and what not.
The very next day, a doctor came into my room, and sat down in a chair next to me. He shook my hand, and asked how I was doing that day. He introduced himself and started to explain to me that he had looked over my X-ray and CT Scan a countless amount of times. He said to me, “I found it very odd, to see a healthy 18 year old girl on oxygen. And even crazier that when the cannula is taken out your oxygen level drops. So I decided to dig a little deeper.” I began to think to myself, “Is this what we have all been waiting to hear?” He continued explaining to me, that he had found a Pulmonary Embolism in my right lung, otherwise known as a blood clot. We were all shocked. “Primarily, we believe this is from your birth control pills. Even though you had only been taking them for three months, you are the unlucky girl that actually developed one of the risks your doctor mentioned before you started taking the birth control.” My Mother and I looked at each other, confused. We told him we didn’t know that blood clots are a risk in girls my age. The warning label clearly says, “Blood clots are a risk for women over the age over 35 and who smoke.” I wasn’t either of those. We were all appalled. He had mentioned that the surgery was off. The pain I was feeling was not gall stones, it was the lung damage that had already been done. Before leaving my room, he told me that he was going to put me on Lovenox shots twice a day along with Coumadin once a day.
That next morning I started taking the Lovenox and Coumadin. I’m not too big of a fan of the Lovenox. I hated the ugly bruises I was left with. However, it seemed like I was breathing a little bit more easily than I was before, and I was sleeping better, too. I remember waking up in the middle of the night and looking over at Ricky thinking just how good a man I have. I know he probably had better things to do, but I’m glad he chose to stay with me and be there for me. And there were also my parents. Seeing them sleep in rock hard chairs made me feel so bad. I felt like giving them my bed, and letting me have the chair. I could tell they were uncomfortable and not really sleeping the best and it bothered me.
The next day, I was finally discharged, woo-hoo! My little brother showed up to see me that day, I missed him terribly. He gave me a ton of love. All I could think about was how happy I was to get home be in my very own bed in my very own house. The nurse had come in my room with some discharge papers, and a box. “This is your Lovenox shots, which will be given once every twelve hours.” She then proceeded on teaching my boyfriend and family on how to give the shots. “It’s not too bad after you get used to giving them,” she said. “Now, I’m gonna bring in your portable oxygen tank and get you hooked up on that so we can get you out of here and ready to go home!” I was more than ready.
It was time. I was hooked up to the oxygen tank, and in a new change of my own clothes. I stood up and sat in the wheel chair. The nurse took me outside where Ricky, my Mother and little brother and I waited on my dad to pull our vehicle up. We all got in and were on our way home, finally. Ricky held my hand on the way home, while I tried to catch up on some rest. Once arriving at my house, I immediately fell asleep. Ricky woke me up and said, “Baby, I’m gonna head on home and catch up on my sleep, too. I’ll be over here to see you tomorrow, I promise.” He then kissed me and left. I fell back asleep.
I am now one month in my recovery. I am doing so much better and feeling so great! I am off of the continuous oxygen. I only use it as needed, if that. I am also off the Lovenox shots, hooray! I still take Coumadin once a day, and have my INR’s done twice a week for safe measures. I’ve lost a total of 16 pounds. Surprisingly, I feel no more pain! My oxygen level stays around 98-100. My primary doctor estimates that I will be on Coumadin for about six more months, which is awesome! I am a blood clot survivor and I am proud. Having this illness has made me think a lot. My advice to you is, cherish every moment you spend with your loved ones because you are never promised tomorrow. Also, please never ignore any weird or odd symptoms you may be feeling or having, it may cost you your life. I’m so happy I could share my story, and maybe help other girls out there my age to not feel so alone. I am blessed!
The American Society of Hematology is looking for a few good deep vein thrombosis patients to provide their input on a project. The following information was copied and pasted from the information they provided. If interested, please contact Dr. Webb at the link in the information below. Thanks. Henry I. Bussey, Pharm.D.
Patient Volunteers Needed: ASH Clinical Practice Guidelines on Venous Thromboembolism
The American Society of Hematology (ASH) invites non-physician volunteers to serve as patient representatives on panels that will develop new clinical practice guidelines about the diagnosis and treatment of venous thromboembolism (VTE). VTE occurs when a blood clot forms in one of the deep veins of the body (called deep vein thrombosis) and travels to the lungs, where it blocks blood flow to the lung tissue (called pulmonary embolism). A blood clot can also travel to the brain, causing stroke.
Clinical guidelines review available evidence and provide recommendations to physicians about how to diagnose or treat a medical condition. ASH has formed ten guideline panels to examine ten different aspects of VTE, including heparin-induced thrombocytopenia (HIT) and thrombophilia. Each guideline panel includes clinical experts in VTE as well as individuals who are expert in how to review scientific evidence.
By including individuals on these guideline panels who have personally experienced VTE or who have experienced taking care of someone with VTE, ASH aims to ensure that the panels give attention to the perspective of patients. Individuals who volunteer for this project will have opportunity to make a valuable contribution to the guidelines. They will be included in discussions about evidence, and they will participate in decision-making about recommendations.
If you would like to participate or have questions about this opportunity, please contact Starr Webb, MPH, at firstname.lastname@example.org. Preference will be given to those who contact ASH by July 15, 2015. Volunteers will continue to be considered until July 24th.
Is this a Clinical Trial?
No, there are no medications or devices involved. Volunteers for this project will review written summaries of evidence and participate in making written recommendations about VTE.
How much of a time commitment?
The project is expected to begin by August 2015 and conclude by December 2016, and most work will be done by conference calls. There will be one 2-day in-person meeting, within the United States, at a location to be decided, but likely in Washington, DC. Your travel expenses will be covered by ASH.
Is the position paid?
Participating as a member of the panel is not paid. However, you will be reimbursed for any travel costs associated with your participation.
Attention Clinicians & Scientists: The 15th International Congress on Antiphospholipid Antibody Syndrome is Coming
Henry I. Bussey, Pharm.D.
ClotCare, as one of the partners in the ISTH World Thrombosis Day (WTD) initiative, was contacted by the office of Dr Doruk Erkan regarding activities of two other WTD partners. Dr. Erkan is a rheumatologist with special interests in Antiphospholipid Antibody Syndrome (APS). Dr. Erkan also is the co-chair of an International Anti-Phospholipid Antibody Syndrome clinical research network (www.apsaction.org) and the Organization Committee Chair of the 15thInternational Congress on Antiphospholipid Antibodies (www.apsistanbul2016.org).
If you are interested in attending the 15th International Congress on Antiphospholipid Antibodies, it will take place in Istanbul, Turkey (September 21-24, 2016). More information on this meeting is available at http://www.apsistanbul2016.org/userfiles/files/APS-flyer.pdf
Henry I. Bussey, Pharm.D.
Performing “toe raises” or calf flexing exercises is one method that has long been recommended as a way to promote blood flow in the legs in order to reduce the risk of developing blood clots in the legs (deep vein thrombosis or DVT) while on long flights. More recently some have voiced concerns about a similar risk for those of us who sit for long periods of time at our computers. To be honest, I try to do calf flexor exercises when working at my computer; but if I’m working intently, it simply is hard to remember to do so. An individual in the United Kingdom recently designed a sort of shoe that may help with this issue. The shoe has a curved bottom to facilitate such calf flexor exercises. You can learn more about these devices at http://www.calf-flexors.com/index.html I’ve been told that a large, international pharmacy chain is interested in bringing these devices to market in the U.S. While these devices would seem to be a good way to promote more exercise to increase circulation while sitting for long periods of time, I must admit that I am not aware of scientific data to prove this hypothesis or to confirm that use of the devices actually has the desired effect. But the concept certainly seems logical.
from Henry I. Bussey, Pharm.D.
What largely preventable condition kills more people each year in Europe and the U.S. than breast cancer, prostate cancer, motor vehicle accidents, and AIDS COMBINED? According to the World Thrombosis Day (WTD) group of the International Society of Thrombosis and Hemostasis, the condition is venous thrombolism (VTE). A new international study by the WTD group, however, reveals that approximately only half of those surveyed were aware of VTE, which includes deep vein thrombosis (DVT or blood clots in the legs) and pulmonary embolism (PE or blood clots in the lungs). And even fewer were able to identify risk factors for VTE, the usual symptoms, or that most VTEs can be prevented. Clearly there is a major international need to increase awareness of the risks of VTE and what can be done to prevent these potentially catastrophic and deadly events.
The entire study results are available online at http://onlinelibrary.wiley.com/doi/10.1111/jth.13031/abstract
Stay tuned for more information as World Thrombosis Day (Oct. 13th) approaches.
A group at Johns Hopkins Medical Center has been working (with support from ClotCare) to develop and promote ways to increase patient awareness of issues related to venous thrombosis (VTE). That group just provided ClotCare with the following message which also includes a link to a new patient-focused video.
In 2013, we were awarded a contract by the Patient-Centered Outcomes Research Institute (PCORI) with the goal of increasing patient understanding and improving patient-nurse communication about the harm of venous thromboembolism (VTE) and the benefits of preventive treatment. In partial fulfilment of this goal, we have developed a patient education video. The video was developed with significant input from patients and stakeholder organizations including Clot Care, North American Thrombosis Forum (NATF), National Blood Clot Alliance (NBCA) and the Johns Hopkins Hospital Patient and Family Advisory Council (JHH PFAC). Input was obtained through the Delphi Survey, multiple focus groups including a meeting with the JHH PFAC, and from participants at our 2015 VTE Symposium. Now that the video has been fully developed and launched, we would like it to be made widely available. It is already posted on our newly developed website, YouTube, Twitter and Facebook and has received an impressive response so far. To further enhance the reach of this important educational tool, we are requesting your help in disseminating it to your networks via your social media pages and your organizations’ websites. You can access the video at http://bit.ly/bloodclots.
Thank you and we look forward to your continuing partnership. The Johns Hopkins VTE Collaborative Elliott R. Haut MD PhD FACS, Michael B. Streiff MD FACP, Peggy S. Kraus PharmD CACP, Brandyn D. Lau MPH CPH, Deborah B. Hobson BSN, Kenneth Shermock PharmD PhD, Norma E. Farrow BA, Dauryne L. Shaffer MSN RN CCRN, Victor O. Popoola MBBS MPH Sc.M
Join the Anticoagulation Forum for the 3rd Anticoagulation Boot Camp, July 23rd and 24th, 2015 in Boston.
This compact 2-day conference offers comprehensive learning for those new to anticoagulation or a refresher on updates on the changing practice of anticoagulation.
The AC Forum expert faculty will provide an interactive setting in a small group learning model with plenty of time for Q&A and dynamic discussion. Nursing and pharmacy CE credits will be provided.
Prior programs have sold out so register soon to secure your spot. Visit http://www.acforumbootcamp.org for more information or to register.