Support Monique's Battle with Heart Disease

My name is Monique Tapio and I was born with a congenital heart defect and a mutation on one of my cardiac genes that we were unaware of until I was 29 years old and my heart gave out. Apparently, my heart had been overworking itself from birth, giving me a normal young life, but it couldn't keep up that pace any longer, and I suddenly fainted at work, during a time when my husband was deployed to Iraq and I was essentially a single mother of 3. After a week of fainting and heart monitoring, I was referred to multiple cardiac and pulmonary specialists. I saw 6 specialists in California that all diagnosed me the same and referred me to Duke due to my initial diagnosis being very rare and Duke being one of only two research centers in the country that was studying it.

Fortunately for me, my husband joined the United States Marine Corps when we were young and became a Tanker. The Marine Corps Tanks world was a small community and we were fortunate enough that Camp Lejeune, one of Tanks Duty Stations, was only 2 hours away from Duke; The Marine Corps moved us from California to North Carolina so I could go to the only doctors that might help me. The Marine Corps also provided Medical Insurance that covered all of my medical costs and prescriptions while my husband was on active duty. The congenital defect and mutation led to me developing multiple cardiac issues, to include; Hypertrophic Cardiomyopathy, Left Ventricular Diastolic Dysfunction, Atrial Fibrillation, Atrial Flutter, Persistent Tachycardia, Non-Sustained Ventricular Tachycardia and Congestive Heart Failure. I have had numerous procedures, tests, therapies and medications over the years to treat and stabilize me, but I will always need constant care and treatment to maintain me and keep me as healthy as possible. The combination of my cardiac problems and the effect it's had on my lungs will someday lead to a heart and/or lung transplant. I can only pray I make it that long.

It took six years to figure out what was wrong with me and multiple procedures to stabilize me. I have been stable for about six years and three years ago I was able to start walking in a pool to try to get healthier, breathe better and get myself out of my wheelchair and it has helped immensely. I have been doing better but after my husband retired from the Marine Corps he had to start a second career to get extra medical insurance to help with the medical costs and prescription copays that were no longer covered. For some reason, when I sleep, my oxygen levels plummet to the low 80's so I have to wear a nasal cannula when I sleep with 2 liters of continuously flowing pure oxygen being pushed into me to maintain my oxygenation. My out of pocket copay costs for my oxygen concentrator came up to $800 and my prescription copays and medical equipment fees came up to $12,000 last year alone. I have to take multiple medications and maintain all my medical equipment just to remain stable. I had to stop working in 2015 as I was too weak, had too many appointments, and hospitalizations due to my heart issues. I have three different cardiologists that each specialize in a different part of the heart so I am at Duke multiple times a month which is four hours away and we have to pay for the travel, gas, hotel and meal costs multiple times each month. I was also told that stress makes my heart worse so I had to quit my job. I am on disability but because my husband had to get a second job to help pay for all my medical costs I receive less assistance and pay out more for my appointments, treatments and medications than before and unfortunately my husband's second career makes it seem like we have more money than we actually do, as it is all wrapped up in medical costs.

Sadly, my heart isn't the only health problem I have. I also have degenerative disc disease and have already had to have one back surgery and I deal with a lot of pain due to two additional herniated discs. I swim to help with the back pain, and to help me breathe and it's the only exercise I can do as I also have an exercise-induced arrhythmia that triggers when my heart rate gets to 157 bpm. This arrhythmia causes a disruption between my top and bottom chambers so the top chambers can't tell my bottom chambers to beat. I had to have a Dual-ICD implanted into my chest with one lead to shock my heart when it stops and the other lead going into my bottom chambers to tell my bottom chambers to beat when the disruption blocks the signal from my top chambers to the bottom. The hydrostatic pressure in the water helps keep my heart rate down and the cool water keeps my body temperature down, as I can no longer regulate my body temperature and I once ended up in the emergency room in critical condition and nearly died when I got overheated. However, to do my daily swim routine I have to pay monthly membership fees and those are not covered by insurance nor is there assistance for gym memberships as they are not considered medical expenses. My breathing issues also caused Cushing's Syndrome that caused me to develop diabetes, made my liver enzymes rise, caused extreme weight gain, stopped my monthly cycle and various other issues all related to high cortisol levels in my brain. My brain knew something was wrong and went into extreme fight or flight mode trying to protect me, however, its efforts to protect me only caused more issues and led to more specialists at Duke. I also see a Hepatologist, an Endocrinologist who specializes in Cushing Syndrome, a Hematologist and a new referral to a Pulmonologist. These appointments also add to my medical fees, travel costs, prescription copays and medical equipment.

I am asking for donations to help us pay all my medical fees, copays, medical equipment costs and travel expenses to continue to go to my Duke appointments. I would truly appreciate any assistance you can provide to help me continue on my road to a better quality of life for as long as I can persist.