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Growing Older with a Bleeding Disorder

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By Angela Lambing, MSN, ANP, GNP

Who would have thought that now, in this day and age, we can talk about aging with a bleeding disorder? Many of our current senior persons with hemophilia can certainly remind us of what it was like in the early stages of their life when the life expectancy was barely into the 20s and the risk of early death due to an acute bleeding episode was highly possible.

Since the development of safe prophylactic treatment and Hemophilia Treatment Centers that provide expert care, the proof is now here. People with bleeding disorders (PWBD) are living longer—into their 60s, 70s, and 80s—due to the expert care they have received. So as people grow older, what are the guidelines for healthy aging? Let’s review steps to maintain a healthy aging lifestyle based on national guidelines.

“Healthy aging is the process of slowing down, physically and cognitively, while resiliently adapting and compensating in order to optimally function and participate in all areas of one’s life—physical, cognitive, social, and spiritual.”1

The current longevity of the average male in the United States (U.S.) based on CDC 2020 data is 74.2 years and 79.9 years for females.2 “Advances in the care of persons with hemophilia have progressively improved life expectancy, almost to the level observed in the general population”.3 This is fantastic news, but many persons with bleeding disorders may not be prepared. Let’s review what can be done to maintain good health as you age.

Table 1 outlines the current causes of mortality in the general population of the United States. Heart disease, cancer, and chronic lower respiratory disease were typically the top 3 causes of death; however, in just the last couple of years, COVID-19 deaths have replaced the number 3 spot over respiratory diseases.

Heart disease remains the leading cause of death for men and women of all cultures with a reported 659,000 persons in the U.S. and an additional 805,000 people suffering a heart attack every year.4 As PWBD age and more data is collected, these same risks are evident. In earlier studies, it was thought PWBD had less risk of cardiovascular disease, but this is no longer the case. A 2011 Mayo Clinic study identified that hemophilia patients were at risk for cardiovascular disease comparable to the general population.5

In several studies, hypertension was found to be more evident in PWBD.5-10 Risk factors include smoking, limited physical activity, high cholesterol, obesity, diabetes, uncontrolled hypertension, and family history of hypertension.

Risk factors can be reduced by a) exercising regularly, within your limitations; b) not smoking or quitting smoking; c) routinely having cholesterol evaluated and taking steps to reduce levels when able; d) eating a healthy diet and maintaining optimal weight; e) maintaining normal blood sugar; f) regularly monitoring blood pressure and taking medication to control blood pressure if necessary.

As aging occurs, everyone has the potential to develop cancer. Based on the CDC 2020 data, lung cancer (23%) was the leading cause of cancer deaths, followed by colon and rectum (9%), pancreas (8%), female breast (7%), prostate (5%), and liver and intrahepatic bile duct (5%) in the U.S. general population.11 Additionally, one in five people in the U.S. will develop skin cancer, most often related to sun exposure.12

In reviewing ATHN (American Thrombosis Hemostasis Network) 2014 data, liver cancer was a documented risk in persons with hemophilia due to many of our senior gentlemen who were exposed to hepatitis C many years ago. Untreated hepatitis C increases the risk of liver failure and liver cancer. Hence, getting treatment for it remains essential. Current treatment options are now better than ever with a shorter treatment time, fewer side effects, and over 95% success rate in obtaining a negative viral load. Successful treatment can reduce the risk of liver cancer by 75%.16 Long-term studies are still in progress to determine the long-term effectiveness rate of the current therapies.

In the U.S., prostate cancer is relatively rare in men under 40; however, after age 65, the risk increases exponentially with advancing age.14 Talk to your primary provider regarding when to start an annual rectal digital exam screening for prostate cancer, typically beginning by age 50.15 If there is a family history of prostate cancer, sooner may be recommended. Benign prostate hypertrophy (BPH) means the prostate enlarges over time with aging, which may cause problems with urination. Reach out to your provider if you have symptoms including frequent trips to the bathroom to empty your bladder, a change in the urinary stream such as difficulty starting, a weak flow, or stopping and starting the flow, or not feeling empty once you have finished urination.

Regular health maintenance is imperative as the years march forward. As aging advances, it becomes essential to have a primary care provider or a geriatrician to coordinate your services with your Hemophilia Treatment Center (HTC) or hematologist. Your primary provider is a gatekeeper to general health and wellbeing, while your hematology team is the expert in your bleeding disorder and will guide you to minimize bleeding risk.

Additional steps to healthy aging include getting enough sleep, maintaining social connections and exercising your brain. There are many activities you can do to exercise your brain, not limited to: building puzzles, reading, learning a new skill, teaching a skill, playing cards, and playing or listening to music, just to name a few. The possibilities are endless.

Also important is staying connected to friends and family members, as social interactions are necessary for maintaining mental health. In the current climate, even staying connected by telephone or other digital means is essential.

Maintaining optimal eyesight with regular vision screening is critical. Having good vision is beneficial for PWBD to be able to self-infuse promptly and accurately when treating a bleeding episode. Good dental care and regular dental checkups are essential throughout our lives as oral disease is an indicator of general health. Periodontal disease is a risk factor for diabetes, cardiovascular disease, endocarditis, systemic infections, and bacterial pneumonia.17,18

Table 2 provides the recommendations for health maintenance and should be completed yearly or as indicated. Your primary care provider can coordinate services with your HTC provider to reduce and help prevent any potential bleeding issues with these recommendations. Keep up to date on your vaccinations as a strategic part of maintaining health with age. Remember the vaccinations required in the first year of life? Now there are important vaccinations for older folks to retain health as well.

Another area PWBD should think about is safety in the home. Arthritic joints that may accompany having a bleeding disorder can affect mobility leading many aging adults to downsize to a smaller, easier-to-maintain home without stairs. Reduce the risk of falling by repairing or removing loose carpets and rugs, installing safety bars and no-slip strips in the bathroom, adding handrails where needed, using nightlights throughout the home, and keeping areas clear of décor or items on the floor to be able to move about more freely.

Planning for the future also includes taking steps to identify and document advance directives related to your health and finances. Take steps to meet with a financial planner to optimize your retirement as you head in that direction. It is important to identify and document a Power of Attorney (POA) for financial and health directives in addition to completing a Living Will. Planning for unforeseeable situations will help you and your loved ones to be better prepared.

As you age with your bleeding disorder, engage in research studies so the data collected can continue to be used to improve your lifestyle as you age. Embrace the opportunity to reach your senior years in the best way possible—something that was elusive to many with bleeding disorders just 30-40 years ago. And most of all, welcome to your senior years!

Reduce Risk of Cancer by:

  • Not smoking

  • Eating a healthy diet rich in fruits and vegetables and limiting processed meats

  • Maintaining optimal weight and exercising regularly

  • Limiting alcohol

  • Protecting from ultraviolet (UV) rays by avoiding prolonged, unprotected time in the sun and tanning salons, using sunscreen and covering exposed areas (with clothing, a wide-brimmed hat, etc.)

  • Engaging in safe sex to avoid HIV and HPV

  • Avoiding infections that may contribute to cancer by getting vaccinated for hepatitis B and HPV

  • Having yearly physical exams with appropriate age-related screenings

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References

  1. Hansen-Kyle L. A concept analysis of healthy aging. Nursing Forum. 2005. 40(2):45-7.

  2. Leading Causes of Mortality in US. Available at: https://www.cdc.gov/nchs/products/databriefs/db427.htm.

  3. Hay, Nissen, Pipe. Mortality in Hemophilia A: A systematic literature review. J Thromb Haemost. 2021. 19(Suppl. 1):6–20

  4. Risks of Heart Disease. Available at: https://www.cdc.gov/heartdisease/facts.htm

  5. Lim MY & Pruthi RK. Cardiovascular disease risk factors: prevalence & management in adult hemophilia patients. Blood Coagulation & Fibrinolysis. 2011. 22 (5):402-6.

  6. Barnes RFW, Cramer TJ, Hughes TH, von Drygaslki A. The hypertension of hemophilia is associated with vascular remodeling in the joint. Haemophilia. 2017. 24:12387.

  7. Barnes RFW, Cramer TJ, Sait AS, Kruse Jarres R, Quon DV, von Drygalski A. Blood pressure in haemophilia and its relation to clotting factor usage. Journal of Haemophilia Practice. 2019. 6(1).

  8. Pokoski J, Ma A, Kessler CM, Boklage S, Humprhries TJ. Cardiovascular comorbidities are increased in U.S. patients with haemophilia A: a retrospective database analysis. Haemophilia. 2014. 20(4):472-8.

  9. Von Drygalski A, Kolgitis NA, Bettencourt R, Bergstrom J, Kruse-Jarres R, Quon DV, et al. Prevalence and risk factors for hypertension in hemophilia. Hypertension. 2013. 62(1):209-15.

  10. Sood SL, Cheng D, Ragni M, Kessler CM, Quon D,. Shapiro, A et al. A cross-sectional analysis of cardiovascular disease in the hemophilia population. Blood Advances. 2018. 2(11):1325-33.

  11. Leading causes of cancer deaths in US. Available at: https://www.cdc.gov/cancer/dcpc/research/update-on-cancer-deaths/index.htm#:~:text=What%20were%20the%20leading%20causes,intrahepatic%20bile%20duct%20(5%25).

  12. Skin cancer facts and Statistics. Available at: https://www.skincancer.org/skin-cancer-information/skin-cancer-facts/

  13. Preventive health services for healthy aging. Available at: https://betterhealthwhileaging.net/preventive-health-services-for-older-adults-healthy-aging-checklist-part-5/#summary

  14. Prostate Cancer Data. Available at: https://www.cancer.org/cancer/prostate-cancer/about/key-statistics.html#:~:text=About%201%20man%20in%2041,point%20are%20still%20alive%20today.

  15. Prostate Cancer Screening. Available at: https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/acs-recommendations.html

  16. Hepatitis B and C Care. Available at: https://www.cdc.gov/nchhstp/newsroom/docs/factsheets/viral-hep-liver-cancer.pdf

  17. Metcalf SS, Northridge ME, Lamster IB. A systems perspective for dental health in older adults. American Journal of Public Health. 2011. 101(10); 1820-23.

  18. Li X, Kolltveit KM, Tronstad L, Olsen I. Systemic Diseases Caused by Oral Infection. American Society for Microbiology Clinical Microbiology Reviews. 2000.13(4):547-558.

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