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Patient story

Sandy VandiverSandy Vandiver

Sandy’s Story
By Sandy Vandiver (with help from my husband, Rich)

I’m Sandy Vandiver, the co-leader of the Fort Worth PH Support Group. Like a large number of PH patients, my Pulmonary Hypertension was misdiagnosed. In my case, it took the doctors more than 19 years before they figured it out and got me to a specialist for treatment.

My PH is a result of chronic thromboembolic disease. In January 1984, shortly after marrying my first husband, I started taking birth control pills. In July of that year, I ended up in the hospital with blood clots. While the doctors suspected a correlation, they never could (or would?) say the pills were responsible for the clots. I was told that large sections of my lungs filled with clots and were dead. They didn’t say much about the extensive blockage in my pulmonary arteries.

Four years later, in August of 1988, I gave birth to my daughter Jennifer. It wasn’t an easy pregnancy, but I wanted a baby so badly that I was willing to take the risk. She is the light of my life.

The next few years were a struggle. In the early 90’s, I was diagnosed with chronic obstructive sleep apnea, and started using a CPAP machine at night. (I have since “graduated” to a BiPAP machine.) My marriage dissolved and I became a single Mom, working full time and raising my daughter. While that can be tiring, I started noticing that I was overly exhausted. I had a couple of episodes where I passed out, once while cooking in the kitchen. When I would go to see Jennifer play softball, there were times when I had to stop four or five times to catch my breath on the way between the car and the softball field.

When I visited my doctor and complained about being short of breath, the response was always the same. He told me, “You are overweight. You have blood clots in your lungs. Lose some weight and you’ll breathe better.” I’m not sure why I was not referred to specialists. I tried lots of diets and exercise programs. More often than not, the exercise programs left me with chest pains, and I was frequently dizzy.

My life changed again in late January 2002. My Mom passed away (my Dad died a few years earlier). Three weeks later I met my future husband, Rich, online. I’m not sure if it was fate or divine intervention. Rich was also going through a difficult time, a separation and impending divorce from his first wife. At the suggestion of his eldest daughter, he decided to check out an Internet dating website where I was a member. We chatted

casually and cautiously online for nearly a month before we decided to meet in person. The day before our “blind” date, we finally got down to talking about where we worked. I already knew that he and I both worked in IT (Information Technology). I never suspected, since Rich lived nearly two hours away, that we had both worked many years for the same company. It turned out that our offices were in the same building, just a couple of floors away from each other. We’d never met since he worked the day shift in one department and I worked nights in another.

In the months that followed as Rich and I dated and were engaged, I continued to have trouble breathing and often experienced dizzy spells. I knew something wasn’t right. It became increasingly difficult to concentrate at work, and I started suffering serious headaches. In early June 2003, my doctor finally started listening. He attached me to an oximeter and had me walk up and down through the halls in his office. He concluded that there wasn’t a problem since my oxygen saturation level did not drop even though I was extremely short of breath. Problem was that he got a false reading from the oximeter. He failed to remove the polish from my fingernails before connecting it.

Less than two weeks later, I passed out again and ended up in the hospital. A pulmonologist was called in, and he decided that I needed to do something called a six-minute walk. My six-minute walk lasted less than 30 seconds. In the short distance between the bed and the hospital room door, my oxygen saturation dropped down to the low 70’s. I left the hospital with a prescription for constant oxygen, and an appointment with a highly regarded pulmonary specialist.
In October, following a series of tests, I got grim news. I was told that I had pulmonary hypertension, and had less than six months to live. A few days later, a catheter was placed in my chest. I have been on Flolan ever since.

Move ahead four months, to late February 2004. I developed a fever and fearing an infection, went to the emergency room at a local hospital to get some blood work done. The local hospital is a top-rated trauma center, but lacks the expertise to deal with PH patients. Six hours later, after deciding that they couldn’t figure out what was causing the fever; I was loaded on an ambulance and driven 90 minutes to the hospital where PH patient care is a specialty. I was checked into a telemetry unit so my heart rate and other vital signs could be constantly monitored while we awaited the results of some blood cultures.

I spent an uncomfortable night in the hospital, getting little rest. I was sitting on the side of the bed when the nurse came in the next morning. I told her that I felt a strange fluttering in my heart and that something was wrong. She told me no, there’s not a problem; that nothing was showing up on the heart monitors at the nurse’s station. The next time she came into the room I told her again that something was happening. She went back, checked the monitors, and immediately called a cardiology resident. He was in the room for less than a minute and was listening to my heart when I had a heart attack. I don’t know whether it was V-tach (ventricular tachycardia) or V-fib (ventricular fibrillation). I do know that I must have a guardian angel watching over me. I blacked out when the arrhythmia started. If he hadn’t been standing there when I went out, I’m not sure what would have happened. When I woke up, there were all sorts of people running around and putting me on another bed. The next thing I remember I was in CVICU.

I was put on a ventilator for three days while a team of doctors tried to figure out what to do. The medication they wanted to use to control the heart has a bad side effect – it damages the lungs. The other option was to implant an ICD (an Implantable Cardioverter Defibrillator). That’s a fancy name for a combination pacemaker and defibrillator. It was touch and go for a couple of days. At one point, my family and friends were called to the hospital to say goodbye. Doctors decided that surgery to implant the ICD was my best option, even though it was risky considering my condition and the fact that I had entered the hospital with a probable infection. The medication would have shortened any life expectancy I would have had after leaving the hospital.

I remember very little about the time I was on the ventilator. What I do remember was a visit from my late Mom and Dad. Both told me simply that it was not my time to go, that I had other things to do before I joined them.

I would not be here today if it wasn’t for the ICD. It’s fired off more than 30 times in the last four years. It scares the hell out of me, but it also saves my life.

I would not be here today if it were not for Dr. Fernando Torres and the rest of the great team of doctors and nurses at UT Southwestern in Dallas. They regularly touch a special place in my heart, both figuratively and literally.

I’ve been through a lot in dealing with my lung problems / PH for going on 25 years. I’ve caught my catheter on the shower door and pulled it out. I had to quit my job and go on permanent disability when I could no longer function at work. I’ve been a candidate for a pulmonary thromboendocardectomy, but the doctors said the surgery was too much of a risk when compared to the limited potential benefits. I’ve learned some medical words that are not in the American Heritage Dictionary or on Wikipedia. I’ve been shocked, poked, and prodded with needles, tubes, wires, and cameras (I’ll spare you the details).

Sometimes it seems like too much, but I keep going by setting goals for myself. Rich and I were married in December 2004. After that, I wanted to see Jennifer graduate from high school. She did in 2006, and I was there. I made it to her wedding in February 2008. I’m planning to be here to welcome my first grandbaby into the world (I’ve told Jennifer not to get into a hurry!). I’m also planning to see Jennifer graduate from college.

I can’t say enough about what it means to have great people in my local support groups (the North Texas and Dallas groups as well as Fort Worth) and the PHA to talk with and share experiences. I have a loving, caring, and empathetic family but it’s also important to swap stories with someone who knows what it’s like to walk in your shoes. I am also blessed to work with an exceptional group of drug company reps who, beyond their professional duties, I count as good friends.

Through it all, I’ve gained a new perspective on life. I know it sounds cliché, but I’ve learned to savor the important events in life and to appreciate the little things that I believe too many people take for granted. I hear people talking about their good days and bad days. Yes, I think I have more than my share of bad days. But, it’s all relative. I quickly remind myself that any day that I get out of bed, even when the sun doesn’t shine, is a good day.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.