Today (Oct. 13, 2017) is World Thrombosis Day…. check it out!

Henry I. Bussey, Pharm.D.,

Join thousands of partners, survivors, supporters, and many others around the world today to recognize and celebrate World Thrombosis Day (WTD) 2017.

More than 1,000 campaign partners in more than 85 countries have organized thousands of events and activities that are taking place today. In addition, our global community is spreading the word through social media and other digital activities to educate and inspire others., a participating partner, appreciates the enthusiasm, time, support, and creativity as we stand together in a united effort to raise awareness about potentially deadly blood clots. With 1 in 4 people worldwide dying of conditions related to thrombosis, there is no better time than right now to take action.  In the U.S. blood clots in the venous system [venous thrombembolism or “VTE”] kill more people that HIV/AIDS, breast cancer, and auto accidents COMBINED!!  And that does not include the clots that cause heart attacks and strokes.

Let’s #KnowThrombosis and #KeepLifeFlowing.

[Figure from WTD website… for more information check out]

Rivaroxaban or Warfarin in Stable Coronary Artery Disease – Should the COMPASS Study Lead Us Back to the Future?

Henry I. Bussey, Pharm.D.


The recently published (online) COMPASS trial [1] of rivaroxaban (brand name Xarelto) with or without aspirin in patients with stable coronary artery disease (CAD) and peripheral vascular disease has been touted as a practice-changing break-through study that supports adding rivaroxaban to the therapy of such patients.  Approximately 90% of enrolled patients had CAD. Four key questions to be addressed are listed below.  The COMPASS trial was a double blind, double dummy randomized trial that compared the three therapies: aspirin alone, aspirin + rivaroxaban 2.5 mg twice a day, and rivaroxaban 5 mg twice a day (without aspirin).  Because the 5 mg rivaroxaban group did not show clear benefit and had a higher bleeding rate than the other 2 arms, this discussion will focus only on the aspirin alone and the aspirin + 2.5 mg rivaroxaban twice a day groups.

  • Exactly how beneficial is the addition of rivaroxaban to aspirin?
    •  Answer: One stroke, heart attack, or cardiovascular death prevented for every 154 patients treated for a year.
  • What is the risk of adding rivaroxaban?
    • Answer: One additional major hemorrhage for every 166 patients treated for a year.
  • Why was a vitamin K antagonist (VKA) such as warfarin not tested in this trial ?
    • Perhaps the safety and efficacy of warfarin in coronary artery disease has been forgotten?
    • The pharmaceutical industry lacks interest in funding research with warfarin.
    • What if warfarin outcomes were superior to rivaroxaban?
  • What might be the impact of warfarin if well managed with frequent INR self-testing?
    • Projected to double the safety and efficacy of warfarin reported in previous studies (based on data from atrial fibrillation data bases).
    • Might be significantly more effective and safe than rivaroxaban.
    • Reduced time, hassle, and expense of warfarin management.

General Considerations: The COMPASS study has 3 “red flag” issues that raise concerns from a study design and execution perspective:

  • Size of study: As a general rule, the smaller the anticipated impact of a given therapy, the larger the study population will need to be in order to find a statistically significant difference.  For that reason, I am usually skeptical of the clinical benefit of any study that requires more than 10,000 patients to show a statistically significant difference. The COMPASS study enrolled 27,395 patients.
  • Composite endpoint:  Combining several clinical events into a single primary outcome (such as stroke, heart attack, and cardiovascular death) can be another indicator of trying to make a small clinical difference be statistically significant; but in this case, this is the same 3-component composite that has been used in previous post CAD studies and each component is very important.
  • Geographic and ethnic considerations:  Individuals living in different parts of the world, those living in different cultures, and those with different genetic predispositions may have different outcomes of treatment.  Therefore, one should always consider whether the patients studied are comparable to one’s own patients.  In COMPASS, patients were enrolled from 5 geographic regions around the world and each region showed a trend toward benefit of rivaroxaban + aspirin.  However, only 14% of patients came from North America sites and the impact of rivaroxaban was not statistically in this sub- of group of almost 4,000 patients.  The impact of rivaroxaban was statistically significant in 2 of the 5 regions (Eastern Europe and Asia/Pacific) which together enrolled almost 9,000 patients (32% of all patients).  One has to question whether the impact of rivaroxaban + aspirin would have been statistically significant without including the patients from Eastern Europe and Asia/Pacific area who appeared to benefit more than did those from other regions.

Exactly how beneficial was rivaroxaban?  COMPASS compared rivaroxaban 2.5 mg twice a day + 100 mg of aspirin to rivaroxaban 5 mg twice a day (and no aspirin) to aspirin 100 mg daily.  The primary outcome of stroke + heart attack + cardiovascular death was reduced by 24% in the group that got 2.5 mg of rivaroxaban + aspirin twice a day!!  In the group getting 5 mg of rivaroxaban twice a day (without aspirin), the primary outcome was reduced by 9%, but that difference was not statistically significant even though each group had more than 9,000 patients. But what does the 24% reduction with the 2.5 mg dose actually mean?  The event rates in the two groups were 5.4% with aspirin alone vs. 4.1% with rivaroxaban 2.5 mg twice a day + aspirin over a mean follow-up of 23 months.  Those event rates (over 23 months) would equal annualized event rates of approximately 2.7% with aspirin alone vs. 2.05% with rivaroxaban + aspirin; a difference of 0.65% per year [see Table 1].  That means that one would need to treat 154 patients for a year in order to prevent one patient from experiencing one of the composite events.   While preventing one stroke, heart attack, or cardiovascular death per year is certainly a valuable goal, one must consider the risks of such therapy.  The cost of the additional therapy for all 154 patients should also be factored in but the cost will not be considered here because, as far as I know, the 2.5 mg tablet is not yet available.

What is the risk of adding rivaroxaban?

The major risk of adding rivaroxaban to aspirin is bleeding.  The rate of major bleeding with aspirin was 1.9% while the rate of major bleeding with 2.5 mg of rivaroxaban + aspirin was 3.1%.  Although that is a 63% relative increase, the absolute annualized difference is only 0.6% [see Table 1].  The number needed to treat of 154 vs the number needed to harm of 166 indicate that approximately 9 additional major hemorrhages would occur for every 10 composite events prevented.

Table 1. Annualized Event Rates per 100 patients from the COMPASS Trial


Aspirin + R 2.5 mg Diff. NNT


Primary Outcome


2.05 0.65


Major hemorrhage


1.55 0.60


Primary outcome = composite of stroke, heart attack, and cardiovascular death.  NNT = number of individuals who would need to be treated for a year to prevent one event, NNH = number of individuals who would need to be treated for a year in order to cause one additional major hemorrhage.

Why was a VKA such as warfarin not included?  For the last several years, the focus of clinical literature (and pharmaceutical advertising) in the area of anticoagulation has been on the newer DOACs (Direct-acting Oral AntiCoagulants) such as rivaroxaban.  But slightly earlier data has documented the merits of warfarin alone or in combination with aspirin in patients with a recent acute CAD event.  Anand and Yusuf provided a nice review of this issue in 2003 and pointed out the importance of achieving an adequate International Normalized Ratio ( INR).[2]  Studies that targeted an INR less than 2.0 did not show benefit with VKA therapy, but benefit was seen with an INR target of 2 to 2.5 + aspirin or an INR of approximately 3 to 4 without aspirin.  The COMPASS trial, however, enrolled patients with stable CAD and I am not familiar with any recent studies that evaluated warfarin in similar patients.  The COMPASS trial was based on the results of the ATLAS trial[3] which was conducted in patients with a recent acute CAD event, so the following discussion will compare the ATLAS results with a couple of example studies of warfarin +/- aspirin in patients recent acute CAD events.  The ATLAS trial randomized 15,526 patients to rivaroxaban 2.5 mg twice a day, rivaroxaban 5 mg twice a day, or placebo; all patients received aspirin and/or other antiplatelet therapy.  The primary endpoint was stroke, heart attack, or cardiovascular death.  The WARIS II [4] and ASPECT 2 [5] trials were somewhat similar studies that randomized patients with acute CAD events to aspirin alone, aspirin + warfarin with a target INR of 2 to 2.5, or warfarin alone at an INR of approximately 3 to 4.  Based on NNT and NNH, it would appear that the warfarin regimens in WARS II and ASPECT 2 were at least comparable in safety and efficacy to rivaroxaban in the ATLAS trial. [see Table 2].

Table 2: Outcomes in Acute CAD with Rivaroxaban or Warfarin +/- Aspirin

ATLAS: Aspirin +/- Rive 2.5 BID or 5 mg BID (n = 15,526)


Aspirin + R 2.5 mg  Aspirin + R 5 mg Diff. v. 2.5/5 R NNT 2.5/5


Primary Outcome


9.1 8.8 1.6/1.9 63/53
Major Hem.


2.1 2.1 1.5


WARIS II: Aspirin +/- VKA INR 2-2.5 or VKA 3-4


Aspirin+ VKA INR 2-2.5 VKA 3 – 4 Diff vs INR 2-2.5/3-4 NNT at INR 2-2.5/3-4
Primary Outcome


3.67 4.21 1.49/0.95


Major Hem.


0.62 0.62 0.45


*ASPECT 2: Aspirin +/- VKA INR 2-2.5 or VKA 3-4

Primary Outcome

9.2 4.8 5.2 4.4/4.0 23/25
Major Hem.


2.0 1.0 1/0


CAD = coronary artery disease (defined differently in the different studies), VKA = vitamin K antagonist (such as warfarin, brand name Coumadin). R = rivaroxaban, Hem = hemorrhage, INR = International Normalized Ratio which is the blood test used to measure the intensity of the anticoagulant effect of VKAs. NNT = the estimated number of individuals who would need to be treated for one year to prevent one primary event.  NNH = the estimated number of individuals who would need to be treated for one year in order to cause one additional major hemorrhage.

*Median (rather than mean) length of follow-up of 12 months was reported in the ASPECT study but it was presumed that the mean follow-up was also 12 months.

What might be the impact of warfarin if well managed with frequent INR self-testing?  There have been two major problems with warfarin management – (1) the difficulty of keeping the INR in the optimal range and (2) the time, hassle and costs of trying to achieve optimal INR control.  Several small studies [6 – 13] have demonstrated that these two obstacles to warfarin use can be greatly reduced by combining INR self-testing with online automated management.  In our own small study of self-testing and online management [11], we were able to maintain the INR in range more than 80% of the time for a group of patients who previously had a mean time in range of 56%.  Such improved INR control was achieved (and maintained) with a minimal amount of time and effort on the part of the clinician and the patient.  Two large data sets in patients with atrial fibrillation have defined the relationship between improved INR time in range and major clinical events and mortality.[14, 15]  Based on the relationship defined in those two reports, the improved INR control with INR self-testing and online management is projected to reduce major clinical events by more than 80% and mortality by more than 40% [see Figure].  If patients with an acute CAD event can derive benefit similar to that projected for better INR control in patients with atrial fibrillation, then the VKA-related event rates in Table 2 would be reduced by more than 50% making well-managed VKA therapy superior to rivaroxaban.


Conclusion:  The addition of rivaroxaban 2.5 mg twice a day plus low dose aspirin can reduce the incidence of the composite endpoint of stroke, heart attack, and death in patients with stable CAD.  But this benefit is small (less than 1%/yr.) and off-set by a similar increased rate of major hemorrhage (also less than 1%/yr.).  How VKA (warfarin) therapy (with or without aspirin) may alter outcomes in stable CAD patients is not known.  But data from different studies (with the acknowledged hazards of cross-study comparisons) in patients with a recent acute CAD event suggest that warfarin alone or warfarin plus low dose aspirin may be at least as safe and effective as rivaroxaban plus antiplatelet therapy.  INR self-testing and online management, which has the potential to transform INR control and VKA management efficiency, may provide an avenue to improve outcomes with warfarin therapy beyond that which can be achieved with rivaroxaban and other DOACs.  There is a critical need to compare such optimal management of warfarin to the DOACs in patients with stable CAD, those with a recent acute CAD event, atrial fibrillation, and other indications.


  1. Eikelboom JW, et al. Rivaroxaban with or without aspirin in stable cardiovascular disease. N Engl J Med 2017 DOI: 10.1056/NEJMoa1709118    (
  2. Anand SS, Yusuf S. Oral anticoagulants in patients with coronary artery disease. J Am Coll Cardiol 2003; 41:62S-69S. DOI: 10.1016/S0735-1097(02)02776-6
  3. Mega JL, et al. Rivaroxaban in patients with a recent acute coronary syndrome. N Engl J Med 2012; 366:9-19.  DOI: 10.1056/NEJMoa1112277.
  4. Hurlen M, et al. Warfarin, aspirin, or both after myocardial infarction. N Engl J Med 2002; 347:969-974.
  5. Van Es RF, et al. Aspirin and coumadin after acute coronary syndromes (the ASPECT-2 study): a randomised controlled trial. Lancet 2002; 360:109-113.
  6. O’Shea SI, et al. Direct-to-patient expert system and home INR monitoring improves control of oral anticoagulation. J Thromb Thrombolysis 2008; 26(1): 14-21.
  7. Ryan F,  Byrne S, O’Shea S, et al.  Randomized controlled trial of supervised patient self-testing of warfarin therapy using an internet-based expert system. J Thromb Haemost 2009; 7:1284-1290.
  8. Ferrando F,  Mira Y, Contreras MT, et al. Implementation of SintromacWeb(R), a new internet-based tool for oral anticoagulation therapy telecontrol: Study on system consistency and patient satisfaction. Thromb Haemost 2010; 103:1091–1101.
  9. Harper PL,  Pollock D.  Improved anticoagulant control in patients using home international normalized ratio testing and decision support provided through the Internet. Internal Medicine Journal 2011; 41:332-7.
  10. Verret L,  Couturier J, Rozon A, et al. Impact of a pharmacist-led warfarin self-management program on quality of life and anticoagulation control: a randomized trial. Pharmacotherapy 2012; 32:871-879.
  11. Bussey HI,  Bussey M, Bussey-Smith KL, et al. Evaluation of warfarin management with international normalized ratio self-testing and online remote monitoring and management plus low-dose vitamin k with genomic considerations: a pilot study. Pharmacotherapy 2013;33:1136-46.
  12. Bereznicki LR,  Jackson SL, Peterson GM, et al. Supervised patient self-testing of warfarin therapy using an online system. J Med Internet Res 2013; 15(7):e138.
  13. Harper P, et al. Evaluation of a community pharmacy anticoagulation management service utilizing point-of-care testing and online computerized decision support (Abstract ATT07). J Thromb Haemostas 2013; 11(S3):11-12.
  14. Gallagher AM, et al. Risks of stroke and mortality associated with suboptimal anticoagulation in atrial fibrillation patients. Thromb Haemost 2011; 106:968-977. doi: 10.1160/TH11-05-0353.
  15. Wan Y, et al. Anticoagulation control and prediction of adverse events in patients with atrial fibrillation: A systematic review. Circ Cardiovasc Qual Outcomes. 2008; 1:84-91. Doe: 10.1161/CIRCOUTCOMES.108.796185.

Research Company Seeks Patients who Have Had a Leg Blood Clot (deep vein thrombosis or DVT)

Henry I. Bussey, Pharm.D.

Qessential Research is a research company that has asked ClotCare to help make individuals aware of a survey research project that they are conducting.  This is an industry-sponsored study, ClotCare does not know what company is sponsoring the study and ClotCare is neither supporting or recommending the study.  ClotCare is simply acting as a conduit to help potentially interested patients to be aware of this study.  The information below was provided by Qessential Research.

“Qessential Research is holding confidential interviews with individuals who have been diagnosed by a physician with blood clots in the leg, also known as Deep Vein Thrombosis. We are hoping to learn about your experience with this condition.

Who:  Men and women who have been diagnosed by a physician with Deep Vein Thrombosis

What:  Participate in a confidential interview to discuss your personal experience with DVT. The discussion will last about 60 minutes and you will receive $100 for your assistance.

When:  Interviews will be held in June, at a time convenient for you.

If you would like to participate or would like more information, please call Deborah Booker at 1-800-932-4249 or via email at

As a professional firm in the medical industry, we understand privacy rules and do not give out any information about anyone involved in our studies. We do not ask for any information regarding patients’ personal medical situation nor are we providing any information about drugs, therapies, or any other promotional information.”

An Update on Testosterone Supplementation and Venous Thrombosis by Charles J. Glueck, M.D.

(with limited edits by Henry I. Bussey, Pharm.D.)

Editor’s Note #1: Charles J. Glueck, MD of the Jewish Hospital in Cincinnatti has shared with ClotCare his work on the relationship of testosterone supplementation and venous thrombosis and osteonecrosis ( and ). He has provided us with an update on this topic.  Dr. Glueck also offers his services at no cost to ClotCare users who have experienced blood clots while using a testosterone supplement.  You may contact him at or

Venous thromboembolism (VTE) includes blood clots in the legs (known as deep vein thrombosis or DVT) and blood clots in the lungs (known as pulmonary embolism or PE). Whether testosterone supplementation therapy (TT) increases the risk of VTE, heart attack, and/or stroke remains at least somewhat controversial.  Earlier work (cited above in the editor’s note #1) has suggested that TT, when administered to individuals with conditions that predispose them to clotting, does indeed carry a substantial risk of VTE.  The information reviewed below provides further support for this position.

Martinez and colleagues recently examined the relationship of TT and VTE in a population-based case-control study of 9,215 patients with confirmed VTE (DVT and PE) compared to 909,530 age matched controls from a source population of more than 2.22 million men.1 Three testosterone exposure groups were identified: (1) current TT treatment (subdivided further by those with a duration

In our study of 67 men with VTE events while on TT, like Martinez and associates, we observed a peak VTE event rate at 3 months, with 60% of thrombotic events occurring within the first 8 months after starting TT.2, 3 The peak of VTE events around 3 months 1 and subsequent decline may reflect the early depletion of susceptible patients with familial or acquired thrombophilia-hypofibrinolysis4 where TT interacts with procoagulants to produce VTE. 3  Such “depletion” of susceptible patients from the group over time would leave a pro-coagulant-winnowed residual group with progressively fewer and fewer susceptible individuals over time.  Such an effect would yield fewer and fewer VTE events over time.  In other words, those individuals at risk of clotting with TT tend to have their VTE events early in the course of therapy and are removed from the pool of study patients so that the continued follow-up of the remaining patients may not show a significant risk of VTE.  This effect may explain why cardiovascular events – but not VTE events – were increased with TT by injection in the study described in the editor’s note #2 below.5

Editor’s Note #2:  TT may be administered by injection, topical gel, or topical patch. The injectable form is thought to provide higher peak levels of testosterone while the topical preparations provide lower but more sustained concentrations. To assess the safety of these formulations, Layton and colleagues performed a retrospective study of 544,115 TT users.  Among this very large group of TT users, 37.4% received injections, 6.9% used the patch, and 55.8% used the gel formulation.5  It is important to note that there was not a non-TT control group.  The risks (reported as hazard ratios and 95% confidence intervals – or CI) were higher for those receiving TT by injection.  When compared to those receiving gel TT, the injectable group had hazard ratios of 1.26 (CI 1.18 – 1.35) for cardiovascular events (ie, heart attack, stroke, and angina), 1.16 (CI 1.13 – 1.19) for hospitalizations, and 1.34 (CI 1.15 – 1.56) for death.  The hazard ratio for VTE, however, was not increased (0.92, CI 0.76 – 1.11).  The event rates in the small portion of patients who used the patch, were virtually identical to the rates seen with gel use.  Although the retrospective nature of this very large study weakens the findings, one might well conclude that the gel or patch may be safer forms of TT.  It is important to note, however, that efficacy was not evaluated in this study and that one cannot draw any conclusions about the safety of these agents vs. no TT from this study.


  1. Martinez C, Suissa S, Rietbrock S, Katholing A, Freedman B, Cohen AT, et al. Testosterone treatment and risk of venous thromboembolism: population based case-control study. BMJ. 2016; 355: i5968.
  2. Glueck CJ, Lee K, Prince M, Jetty V, Shah P, Wang P. Four Thrombotic Events Over 5 Years, Two Pulmonary Emboli and Two Deep Venous Thrombosis, When Testosterone-HCG Therapy Was Continued Despite Concurrent Anticoagulation in a 55-Year-Old Man With Lupus Anticoagulant. J Investig Med High Impact Case Rep. 2016; 4(3): 2324709616661833.
  3. Glueck CJ, Prince M, Patel N, Patel J, Shah P, Mehta N, et al. Thrombophilia in 67 Patients With Thrombotic Events After Starting Testosterone Therapy. Clin Appl Thromb Hemost. 2016; 22(6): 548-53.
  4. Miettinen OS, Caro JJ. Principles of nonexperimental assessment of excess risk, with special reference to adverse drug reactions. J Clin Epidemiol. 1989; 42(4): 325-31.
  5. Layton JB, Meier CR, Sharpless JL, et al. Comparative Safety of Testosterone Dosage Forms. JAMA Intern Med. 2015:175(7):1187-96

Seeking Patients Taking Warfarin (Coumadin) for a Brief Survey

Henry I. Bussey, Pharm.D.

Are you taking warfarin, have you ever taken warfarin, or have you been the care giver of someone taking warfarin?
Can you spare 5 minutes to provide information about your warfarin experience?
Joshua Wright, a current warfarin user, has developed a survey to find out the needs of the warfarin community based on individual experiences. From the survey, Joshua hopes to create a tool that will help patients better manage their daily needs and the challenges associated with warfarin use. The survey takes about 5 minutes and will ask about your experiences as a current or past warfarin user, or as a care giver of someone taking warfarin.
You can take the survey at or
Please address any questions to Joshua Wright at
Joshua’s Story: Joshua has been taking warfarin since July 2016. As a 26 year old law student, he is hoping to find some normalcy with this life-long, but life-saving, medication. Since starting the medication, he has noticed many challenges faced by warfarin users, especially for individuals with other ailments. His irregular dosing schedule was so hard to manage that he changed it to an easier-to-manage daily dosage without his doctor’s approval — He believes that no warfarin user should feel the need to do that. He has also struggled with managing his diet, which is supposed to be low in sodium and consistent in vitamin K. His hope is that his survey can find a solution to the many problems that exist for more people than just himself and build a strong community of support.

Looking for Patients in New York City Area for a Nov. 29, 2016 Survey Research Project.

If you have experienced a deep vein thrombosis (DVT) or pulmonary embolus (PE), a survey research company may be interested in talking with your in New York City (NYC).  This in-person market research study is taking place in NYC on Tuesday, November 29, 2016.  The compensation for those who qualify for the interview is $200 for a 90 minute interview.  If interested, contact Carol Wager at or call 732-662-4539.

Note: ClotCare is simply passing on information regarding this study.  ClotCare is not affiliated with the study, has not reviewed or approved the survey, and we do not know which company is sponsoring the survey.


The Thrombosis Research Institute Request Clinician Input Regarding Thrombosis and Cancer

Below is a letter received from the Thrombosis Research Institute in London asking for clinicians involved in this area to help with a global survey.

Dear Dr. or Professor:

I am writing to request your participation in the Fundamental Research in Oncology and Thrombosis, Frontline2 survey.

The understanding of best practice for preventing and treating thrombosis in cancer patients has evolved significantly over the last decade, but variations in practice still persist. The aim of this research is to describe the evolution of clinical understanding in this area since the first FRONTLINE survey in 2001, and also to highlight variations in care, nationally and internationally.

Frontline2 is a global survey, designed by leaders in the field who as an expert steering committee provide global leadership for this important programme. It is funded by an unrestricted grant from Bayer Pharma AG. The survey will collate the views of oncologists, haematologists, surgeons, radiation oncologists and members of the palliative care team who are responsible for treating cancer-associated thrombosis. The work is sponsored and coordinated by the Thrombosis Research Institute (TRI) in London (www.TRI-LONDON.AC.UK).

Why you should take part
The value of this survey lies in achieving as large and as representative a sample of clinicians as possible to generate new insights into this important clinical problem, and to help resolve unanswered questions as well as potentially stimulating further research.

By giving a few minutes of your time to complete the questionnaire, you will provide crucial information to help meet these goals.

How you can contribute
Please complete the survey via our dedicated website you can also find more information about us and the study. The survey will also be available in multiple languages

As a thank you for your help in completing the survey, you can download from our website, an educational slide set prepared by the TRI. The goal of the slide series is to support the continued professional education in the field of venous thromboembolism and in particular cancer-associated thrombosis. In addition, all participants in the study will be granted first-hand access to the FRONTLINE 2 results once published.

I thank you in advance for your support and collaboration on this important piece of research.

Kind regards

Professor the Lord Kakkar
Chairman of the Steering Committee for
The Fundamental Research in Oncology and Thrombosis (Frontline2) study

Emmanuel Kaye Building
Manresa Road
London SW3 6LR

Support ClotCare for Free and More

ClotCare does NOT receive industry support and is dependent, therefore, on donations to cover the expenses of this service.  The following are some options for helping to support this service.

Because the two biggest shopping days of the year are upon us, here is a way that you can support ClotCare for free:

Support Charity While Holiday Shopping

Actually, any time that you shop using Amazon can generate free support for ClotCare.  Just go to and the instructions will tell you how to set up an account and select the charity of your choice (hopefully ClotCare) and then any time you shop through, Amazon will donate 0.05% of your purchase to ClotCare (or whatever charity you select).

If you would like to support ClotCare at a level above that of 0.05% of your amazon smile purchases, then here are two other options.

The first option is through the “Giving Tuesday” (following Black Friday and Cyber Monday) on December 1, 2015.   This is an event in which facilitates fundraising for tax exempt charities.  The link below has a short video about ClotCare, a mission statement, and a “Donate” button:

The second option involves simply visiting the ClotCare Website at and clicking on the “Donate” button.

Thank you, in advance, for supporting the ClotCare Online Information Service!

Heather’s Story: When is Pneumonia not Pneumonia

[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!

If You Have Had a DVT, The American Society of Hematology Wants You!

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 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.

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