American Academy of Neurology
American Academy of Physical Medicine and Rehabilitation
American Association of Neurological Surgeons
American College of Cardiology
American Heart Association
Americans for Medical Progress
Congress of Neurological Surgeons
American Neurological Association
Association of Black Cardiologists
Citizens for Public Action on Blood Pressure and Cholesterol, Inc.
Mended Hearts, Inc.
North American Society of Pacing and Electrophysiology
National Stroke Association
Stroke Connection

The National Coalition for Heart and Stroke Research represents over 5 million volunteers and members nationally.

I am here to tell you how heart disease and stroke have affected my life and the lives of my loved ones. These diseases -- heart disease and stroke -- have had a tremendous impact on my life. On February 1, 1983, I saw hell. I was sitting in science class (in 8th grade) when I started feeling really awful. Figuring I was coming down with the flu or something, I tried to walk to the bathroom, but couldn’t. As soon as I got out of my chair, my legs buckled underneath me & I slid down to the floor. I began to intermittently vomit & faint. The teacher summoned the paramedics, & I was taken to the hospital, where my mother & I tried in vain to convince the Drs that I was not going through a drug overdose. Of course, they wouldn’t believe either one of us & pumped my stomach anyway. Right after that, I slipped into a coma for a few days. When I was coherent (about a week later), a Dr told me what had happened.

As it turned out, I was born with a cerebral arteriovenous malformation (AVM). It had ruptured & caused a hemorrhagic stroke. I was dumbfounded! I had the (very common) misconception that strokes only happened to the elderly. But there I was, a 13 year old girl, lying in a hospital bed, trying to figure out how I was going to spend the rest of my life with only the left side of my body working properly. Before the hemorrhage, sports were a big part of my life. I played field hockey, ran track, & participated in gymnastics. When I asked the Dr. if I would still be able to participate in sports, he just shook his head. I felt as though the rug had been pulled out from underneath me. In a very short amount of time, my life had been changed forever.

I remained in the hospital for about a month and my spirits were getting a little better, as I knew, in my heart, that I was not going to let the stroke get the best of me. Right before I was released from the hospital, the Dr told me that I needed brain surgery to clip off the AVM & ensure that it wouldn’t cause another hemorrhage. The idea of brain surgery scared me, but the alternative (another hemorrhage) scared me even more, so I submitted to the idea.

What the Dr had failed to tell me was that no one was willing to perform the operation. It was a very complicated & risky operation, & no one wanted to operate on a 13 year-old girl who may not live through the surgery. So, the Dr & my mother searched the country for the next 2 months, & they found a Dr in New York who was willing to operate on me. The operation was scheduled for April of the same year. I left for New York with my parents, wondering if I was ever going to see PA again, but not really caring either, as I was still in pretty bad shape from the hemorrhage, & would have welcomed death if it came.

After 12 grueling hours of brain surgery, the Dr announced that the operation was successful. We (my family & I) let out a big sigh of relief, & I went home to finish recovering from the hemorrhage. The hemorrhage left me with a lot of deficits to overcome. The right side of my body didn’t have any coordination, my voice was slurred, I couldn’t walk without a walker, & my vision was blurry. I never returned to school that year, as I had about 8 months of recovery ahead of me. I learned to live without sports (probably the hardest part of it all) & taught myself to write with my left hand. My voice eventually returned to normal, & I learned to walk again (with the help of a lot of physical therapy). My vision, however, showed no improvement at all. I went to see an eye specialist a few years after the hemorrhage, & was told that my vision problems were inoperable, & that no glasses would ever rectify the problem. This was very discouraging, but I had hopes that my vision would improve on it’s own. Unfortunately, that never happened.

In spite of the visual problems, I managed to graduate with the rest of my class in 1987. After taking a few years off, I went to Montgomery County Community College. Because of the visual deficits, reading & studying were very time consuming tasks for me & I could only go to school on a part time basis. Needless to say, it took me 5 years to get through the first 2 years of college. I graduated from Montco in May, 1997. I was planning on continuing my education at Temple in September of the same year. But, once again, my plans were put on “hold.”

On July 1, 1997, I saw another level of hell. I was sitting in my apartment, studying for a final exam (I had been taking a summer course) when I started feeling really awful. I figured that I must have been coming down with the flu or something. I decided to soak in the tub, filled with cool water. When I got up to go into the bathroom, my legs buckled underneath me & I dropped to the floor. So I crawled into the bathroom, & turned on the faucet in the tub. After the water filled the tub, I got in, but started feeling faint after about 5 minutes. Not wanting to drown, I got out of the tub. I crawled into the bedroom & climbed into the bed. I lay on the bed, thinking that the last time I felt this bad…I was having a brain hemorrhage. But I was sure this wasn’t a hemorrhage, as I was told that I would never have another hemorrhage after the surgery in 1983. So, I just went to sleep, with the hope that I’d wake up feeling better.

About 8 hours later, my boyfriend came home & found me unconscious. He called 911 & I was rushed to the hospital. I spent a few days on life support, & a week in a coma. When I was coherent (about two weeks later), I was told that I had another hemorrhage.

As it turned out, the Dr who had performed the surgery in 1983 left a microscopic piece of the AVM unclipped. He didn’t know because it wasn’t visible through the angiogram. The AVM grew back over 14 years, & eventually ruptured, causing another hemorrhagic stroke. The 2nd one was much worse than the first (& the first was no picnic). Once again, my voice was slurred, I couldn’t walk, & now my vision was even worse (I didn’t think that was possible). At first I wasn’t too upset about it, as I had learned to be a lefty 14 years before, and, having already had my hair shaved off once, I knew it would grow back. But, I wasn’t prepared to deal with the cognitive deficits. I couldn’t think straight for about 8 months after the bleed, & I had (& still have) short term memory lapses all the time. It was about a year before I could walk without any assistance this time, & I still lose my balance all the time. I applied for disability benefits, but the state of PA decided that I was not eligible to collect the benefits. My boyfriend was working 15-hour shifts, 6 days a week to keep a roof over our heads. So, I tried to return to work as a waitress, but I tried in vain. The memory lapses, my poor vision & the lack of balance made working out of the question for me. I have gotten the disability, after 3 tries, & 18 months!

Today, I am mostly recovered from the 2nd stroke (I say “mostly” because it’s become apparent to me that I’ll never be fully recovered). I have to deal with the cognitive deficits on a daily basis. I have to write everything down for myself, & I lose my train of thought all the time. These deficits can create real problems for me at school (I’m a Jr. at Temple). I am still only able to attend school on a part time basis, & now part time is even more time-consuming. And test taking is really hard because of the memory lapses, but I have found that I can retain things in my memory if I study harder than I ever did before. This can be incredibly frustrating, as the 1st stroke did not leave me with any cognitive deficits, so this is all new to me. The doctors have also told me that I can't have children. If I try to, I will risk serious complications with the pregnancy. A pregnancy could cause another hemorrhagic stroke.

If medicine was as advanced in 1983 as it was in 1997, I never would have had the 2nd stroke. So, medicine has advanced greatly in some areas, but it’s still in its infancy in other areas. Angiograms give much more clear pictures now, & non-invasive surgery is an option for many people now (including me). When the neurosurgeon was performing the brain surgery on me, he found another AVM that is inoperable invasively. So, in October, 1997, I had “Radiosurgery” on it. I have to have Angiograms every 6 months to monitor it. I am scheduled to have my 10th (& hopefully last) Angiogram in 6 months.

To look at me, one would never know that I’ve had 2 strokes, but I have! That’s the problem with these “invisible” wounds, on the outside, I look fine. But, on the inside, my wounds are very real. I’ll never be the same again since the 2nd stroke, & I accept that, but you are looking at someone who never thought she’d be so tired at age 30.

My nightmare is finally coming to a close, but there are so many people out there who haven’t even begun their nightmares. There are approximately 4 people out of every 10,000 who have AVMs, and approximately 5% of the entire population has some kind of Aneurysm. Given the consequences of these lesions, these statistics are staggering. The tests that detect these lesions are very expensive, I know, but it’s a lot more expensive to take care of someone after they’ve had a stroke. And hemorrhagic strokes have a very poor prognosis, as for every 100 people who suffer this kind of stroke 40-50 will die- a figure three times greater than ischemic stroke. As we all know, there is no such thing as a brain transplant, we just have to live with the ones we’re born with. Unfortunately, some of us were born with a lesion that can cause a catastrophic hemorrhage. And a catastrophic hemorrhage is usually the 1st sign of one of these congenital lesions. But, after a hemorrhage, the damage has already been done. Ischemic and hemorragic strokes claimed the lives of 160,000 Americans in 1996. Stroke is the third leading cause of death in this country a leading cause of serious, long-term disability.

My life has been directly affected by heart problems as well. My father has had many, many problems with his heart. This started in 1982, when, at age 39, he had his first heart attack. He subsequently underwent quadruple by- pass surgery. Unfortunately, his problems were not to end there. A few years after the surgery, he began experiencing heart fribulations, which caused more heart attacks. (I say “heart attacks” because no one knows for sure just how many heart attacks he’s suffered, we stopped counting after the 1st few) So the Drs implanted a “defribulator,” and the problems subsided (at least for a while).

In 1994, he developed an Aneurysm in his stomach, and when the Drs operated to obliterate it, he had more heart attacks, & spent the following 3 weeks on life support. After all this, the Drs discovered that the valves in his heart had been blocked again, & another quadruple by- pass was necessary. After his 2nd open- heart surgery, the problems seemed to be over.

In February of 1999, he went into the hospital because of the pain & discomfort he was experiencing. (I might add that I was in a hospital about 3 miles away, having my 9th Angiogram.) While he was in the hospital, he had another heart attack, so the Drs performed a cathedarization to see what caused this heart attack. They learned that, of the 4 valves in his heart, 2 are completely blocked, & 1 is 90% blocked, so right now, his heart is working on 1 valve & 1/10 of a valve.

Because of the poor circulation & all the heart medication that he’s taking, he’s tired all the time, & gets worn out really easily. He can’t do many of the things he loves to do now. He can no longer golf or travel. In fact, he now even has trouble watering his plants. My father has four plants on polis. He used to water his plants without a problem. Now, when I visit, I help him water the plants. He can only water two at a time. Then he rests for an hour before watering the remaining two. I have to walk to the sink to get the water for him.

My father & I are both fighters. We’ve both fought for our lives a few times. Luckily, we’re both winning so far, but there are so many people who aren’t as lucky as we are:

Heart disease is the leading cause of death in this country.
Stroke is the third leading cause of death.
Both are leading causes of disability.
Every 29 seconds someone in this country suffers a coronary event.
Every 53 seconds someone suffers a stroke.
In 1996, cardiovascular diseases claimed the lives of almost 960,000 Americans.
In 1999, it is estimated that these diseases will cost our country over 286 billion dollars in medical expenses and lost productivity.

These diseases touch the lives of all Americans in some way. We must increase funding for stroke research and for heart research significantly! These diseases have a devastating affect on our country.

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