Category: Medical

Although 22 million people are estimated to have OSA, about 80 percent are undiagnosed. Their lack of oxygen comes with a high mortality risk. Sadly, I knew multiple little people who died in their 40s due to undiagnosed sleep apnea.

Until about 20 years ago, I too was undiagnosed. I didn’t know that my excessive daytime sleepiness put me at twice the risk of having a car accident. But I was jolted awake one afternoon after falling asleep at the wheel and my car veering off the road onto the grass. Thankfully, I didn’t hit a power pole or cross the center line into oncoming traffic and avoided being among the 100,000 auto crashes or 1,550 crash-related deaths the National Highway Traffic Safety Administration annually attributes to fatigue.

I had ignored sleep apnea symptoms like loud snoring, waking up with a dry mouth, and feeling as tired as when I went to bed. I forget if I had trouble remembering. Other symptoms didn’t bother me—insomnia, morning headaches, mood or behavior changes, and lack of energy. Other than being middle aged, common risk factors for sleep apnea were absent—allergies, drug use, family history, being a male, obesity, nasal blockages, large neck circumference, sleeping on my back, smoking, and enlarged tonsils or tongue. But failing to address my sleep apnea symptoms also put me at risk for life-threatening conditions like: diabetes; cardiovascular diseases; psychiatric comorbid diseases; cancer; neurological disorders; and brain damage.

Soon after my wake up call, I had a sleep study and was officially diagnosed with severe OSA. I slept overnight in a sleep clinic dotted with sensors that measured my sleep stages, breathing, muscle movement, and oxygen levels. I was prescribed a Continuous Positive Airway Pressure (CPAP) machine with a tube blowing pressurized air into a mask and through my airway to keep it open while I slept. 

Adjusting to the CPAP was challenging. However, I was determined to benefit from the health benefits of the device and refused to give up. With the help of a respiratory therapist, I chose a nasal pillow and comfortable headgear. The CPAP came with a compact carry bag making travel easy; airlines have made it a free carry on.

So how well are you sleeping?

You may also want to read:

• “Sleep Apnea.”Cleveland Clinic.November 15, 2022. https://my.clevelandclinic.org/health/diseases/8718-sleep-apnea

• Health Risks of Poor Sleep. https://www.hopkinsmedicine.org/health/wellness-and-prevention/the-dangers-of-uncontrolled-sleep-apnea

• “Ways to Improve CPAP Therapy Compliance for Sleep Apnea Patients.” Reviewed by Pramod Kerkar, M.D., FFARCSI, DA. https://www.epainassist.com/sleep-disorders/ways-to-improve-cpap-therapy-compliance-for-sleep-apnea-patients

• Sleep Awareness Week®. https://nationaltoday.com/sleep-awareness-week/
• For links to my dwarfism memoir trilogy and weekly blog posts, go to my website at https://angelamuirvanetten.com.

According to the American Heart Association, 655,000 Americans die annually from heart and cardiovascular diseases. Forty-three million women have some type of heart disease. Two to three million people have Congenital Heart Disease (CHD) and as many as 11 million have heart valve disease that kills around 25,000 people per year.

Here’s the good news: 87 percent of all heart issues are believed to be preventable. Plus, as medical care and treatment have advanced, people with CHD live longer and healthier. Valve disease can usually be successfully treated in patients of all ages. However, positive outcomes call for people to practice self-care and, if necessary, make lifestyle changes.

Most of us already know that being physically active, eating healthy foods, getting enough sleep, not smoking, and finding healthy ways to reduce stress can help prevent heart disease. But many of these things are easier said than done and some are especially difficult for people with dwarfism and disabilities. Take, for example, the advice to be physically active. While diet and exercise are touted as our greatest weapon and reduce our chances of heart disease by as much as 80 percent, the recommended 150 minutes of heart-pumping physical activity per week may not be feasible.

Yet not being able to walk briskly, do water aerobics, or play tennis doubles doesn’t take us off the hook. Being active is not an all-or-nothing thing. Physical activity is anything that moves our body and burns calories. Any amount of movement is better than none. And for those of us who are sedentary, sitting less is a great place to start along with walking and stretching. 

It’s also important to know the five numbers that determine our risk for developing cardiovascular diseases: (1) total cholesterol;  (2) HDL (good) cholesterol; (3) blood pressure; (4) blood sugar; and (5) body mass index (BMI). I never used to pay attention to these numbers, but now I ask for copies of blood work reports and for the numbers when my blood pressure is taken. Knowing whether a number is in or out of the healthy range is the best way to be pro-active in managing heart health. I’m as much a member of my health care team as any doctor or nurse.

If there’s something I can do to avoid a stroke or heart attack, I’m going to do it. How about you?

You may also want to read:

• Angela Muir Van Etten. “Thankful for Aortic Valve Replacement (AVR).” November 23, 2020. https://angelamuirvanetten.com/thankful-for-aortic-valve-replacement-avr/
• Chapter 23, “Aortic Valve Replacement,” in book II of Angela Muir Van Etten’s dwarfism memoir trilogy, PASS ME YOUR SHOES: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith. https://angelamuirvanetten.com/pass-me-your-shoes/  
• American Heart Association. https://www.heart.org/en/ 
• National Heart, Lung, and Blood Institute, National Institute of Health. https://www.nhlbi.nih.gov/education/american-heart-month
• Go Red for Women. American Heart Association. https://www.goredforwomen.org/en/get-involved/give/wear-red-and-give 
• National Wear Red Day (February 3^rd). https://nationaltoday.com/national-wear-red-day/
• Congenital Heart Disease Awareness Week (February 7 to 14). https://nationaltoday.com/chd-awareness-week/
• “Congenital Heart Defects.” Centers of Disease Control and Prevention. https://www.cdc.gov/ncbddd/heartdefects/index.html
• Heart Valve Disease Awareness Day (February 22). Alliance for Aging Research.  https://www.valvediseaseday.org

Donating blood is a simple procedure that can be done within an hour. But supply often doesn’t meet demand because restrictions reduce the number of people able to give blood. For example, people with Ebola, Leukemia, and HIV or AIDs are permanently precluded from donating. Some donor restrictions are temporary and will be lifted after a prescribed period of time, such as when flu symptoms pass, a course of medication is completed, or iron levels have increased.

Even though little people weighing under 110 pounds don’t qualify to make blood bank donations, gaining weight is not recommended to make this a temporary condition. Some people with dwarfism may meet the weight requirement, but the blood draw process is often painful and unproductive due to inability to straighten the arm at the elbow and difficulty finding a vein.

Despite the restrictions, the donor pool is plentiful with 37% of Americans eligible to donate blood. But sadly, only about 5% actually donate. One way to combat this shortage is for individuals in good health to donate blood for their own use. Self-donations also reduce the risk of incompatibility or infection.

Self-donations are common for people planning elective surgery. Many little people persevere with the difficult blood draw process and self-donate for orthopedic and neurologic surgeries. The eligibility criteria is less restrictive and even allows donor weight to be as low as 90 pounds. My husband Robert successfully self-donated two units of blood for his left hip replacement surgery. The blood was drawn a few weeks before the surgery, labeled with his name, and transported the 250 miles from Rochester, New York to Cleveland, Ohio.

When Robert was unable to self-donate for his right hip-replacement surgery, he elected a directed donation. This meant he recruited family members to donate blood that were earmarked for his use. Just as well, because the day after surgery he needed another pint of blood. But he would not let the nurse begin the transfusion until she confirmed that his cousin Tommy’s name was on the bag as the directed donor. Likewise, Monica donated blood for her son’s brain stem surgery. And during Susie’s laminectomy surgery, staff got her mother from the waiting room to quickly donate a pint.

So on Tuesday, June 14th, World Blood Donor Day, consider doing one or more of the following:

• Wear red.
• Encourage existing donors to continue giving blood.
• Recruit new donors.
• Volunteer at a blood drive.
• Share a story expressing gratitude for blood donors who have saved your life.

This post includes references to the second book in my dwarfism memoir trilogy, “Pass Me Your Shoes: A Couple with Dwarfism Navigate Life’s Detours with Love and Faith.” Read more at https://angelamuirvanetten.com/pass-me-your-shoes/

Robert was shocked again. He had not learned how to adapt to New Zealand’s way of staying warm—only use a heater to take the chill off the early morning air and wear winter clothes inside.

When we flew to Sydney, Australia to visit my siblings and other family members, it was my turn to adapt. Shortly after a surprise 50^th birthday celebration—where I was crowned the queen—I was rudely reminded of my advancing years. I fell and severely sprained my wrist the day before we flew home. I had one night to ice it, then fellow passengers across the Pacific suffered with me as I massaged my wrist with the penetrating and aromatic Goanna extra-strength heat cream. The healing process was impeded by the need to continue lifting myself on and off chairs, toilets, and in and out of the car.

I was also losing range of motion in my ankles. The pain interrupted my sleep, reduced my already limited walking distance, made stairs and curbs impossible to climb without a railing, and required avoidance of uneven surfaces like grass and gravel.

At the end of August, I went to a local orthopedist for x-rays. After looking at the images, he came into the room, was surprised not to see a wheelchair and amazed I could walk independently. He pronounced severe arthritis and prescribed a scooter and a lift to get it in and out of the car.

In September, I brought the x-rays to Dr. Mary Matejcyk, the same orthopedist who replaced Robert’s hips in 1997. She advised that the spontaneous fusion of my ankle joints was causing the pain. This sounds bad, but it was actually good news. Surgical intervention would be to fuse the joints and my ankles were doing this on their own. The only concern was that the ankles fuse in the right position for standing; thankfully, this appeared to be happening. When the fusion was complete the pain would end. And she was right.

Robert had no health incidents in 2003. However, he got quite a scare on the scales at the doctor’s office. The calibration on our home scale was off by seven pounds. We both admitted we needed to lose weight to reduce the stress on our joints.

So how were you reminded of National Senior Citizens Day on August 21^st?

Read more about dwarfism issues in my dwarfism trilogy, https://angelamuirvanetten.com/books/.