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Change of Heart – Mitral Valve Prolapse
Leslie Lipton Morelli
Copy Editor for VOGUE
I would lie awake at night listening to the sound, and it scared me. If I turned on my right side, with my ear pressed to the pillow, just so, I could hear my heartbeat. Not the familiar, rhythmic lub-dub from high-school biology class but an irregular, weakened pulse. And with it, the knowledge that surgery was coming.
I had known since I was nineteen that I had mitral valve prolapse, a relatively benign condition in which the valve (located on the left side of the heart) doesn't fully close, allowing blood to leak backward from the ventricle into the atrium. Five percent of the female population in the United States, or approximately seven million women, has mitral valve disease. The disorder most often affects those in their 20s, 30s, and 40s, and of that group about 5 percent, or 350,000 women, will need surgical intervention during their lifetimes.
I was told to take antibiotics before I saw the dentist, and that had been the end of it. But after three episodes of endocarditis (a bacterial infection on the valve), my diagnosis had progressed to severe mitral insufficiency or regurgitation (lovely!), causing the blood to leak all the way back into my lungs. By now my enlarged heart was working twice as hard to move blood out through my aorta to the rest of my body. I had noticed increasing shortness of breath, especially when climbing stairs, and severe palpitations-not the simple fluttering kind but the knock-you-in-the-chest kind.
Even before I saw my cardiologist for a checkup I had a feeling he would recommend surgery. Four years ago, after my last bout of endocarditis, he had spoken about mitral valve repair rather than replacement-sooner rather than later. I was thinking he meant when I was in my 50s. Forties is more like it.
Conventional treatment is changing. According to Mitchell Robbins, M.D., of North Shore University Hospital, Manhasset, N.Y., "We are now referring patients for operations who have no overt symptoms but have significant leaking of the valve, which is usually the case in mitral valve prolapse. But when people become symptomatic at all, when they report a decrease in their effort tolerance and there's a significant leak, they need surgery. There are pretty clear algorithms based on the echocardiogram findings that help make these decisions."
Years ago, most patients would be in congestive heart failure before they were sent for valve-replacement surgery. Now there is the option of valve repair with the goal of preserving the natural tissue and operating before the patient's health deteriorates.
A stress test confirmed my palpitations were ventricular tachycardia, a potentially fatal arrhythmia, which was probably the result of the valve flailing against the ventricle wall. Robbins said that I should have surgery within the next three months, and he gave me the names of three surgeons. He was kind and compassionate, but I still went home dazed, confused, and scared out of my mind. I had seen TV programs about open-heart surgery on the Health Channel and heard what I believed to be the buzz-saw-like instrument used to crack the chest open to get at the heart. Vanity aside, that couldn't be the answer for me.
I saw two more cardiologists who confirmed my doctor's evaluation, but one wanted me in the hospital that same week (he thought my condition was critical), while the other said my valve was so badly scarred he was certain it couldn't be repaired. Both agreed valve replacement was my only alternative and probably the best I could hope for was a partial sternotomy, where the surgeon would break only some of my ribs. Like being a little bit pregnant.
At about the time Robbins started talking about earlier intervention, I found an advertisement for New York University Medical Center's cardiothoracic division. The ad spoke about their minimally invasive, less-is-more approach to heart surgery, obviating the need for the collarbone-to-sternum incision. I had saved the paper in my night-table drawer, and now I went digging for it. I also searched the Internet relentlessly. (Though I don't advise going to medical chat rooms or posting questions on health-related message boards. You have to weed through too much misinformation and too many depressing people.)
One name kept coming up-Stephen B. Colvin, MD, chief of cardiothoracic surgery at NYU. He was on the shortlist of all three cardiologists as the preeminent mitral valve surgeon, and there was plenty of information about him on-line. It seemed that if anyone could repair my valve, he could. But I couldn't pick up the phone. I had heard that you never go to a surgeon for an opinion, because their answer will always be to cut. You should go with your mind pretty well made up. I agonized for weeks. But when I got slammed in the chest by a particularly nasty episode of tachycardia, I caught my breath and set up an appointment.
As soon as I met Colvin I felt better. Charming, voluble, and supremely confident, he was 98 percent positive that he could repair my valve. And he would do it without cutting one rib, leaving scars that would be virtually hidden in skin folds. It calmed me down a bit to know that Colvin and his team have done more mitral valve repairs using these innovative procedures than any other surgeons in the country. They are world-renowned for their annuloplasty technique, where the valve is reshaped in the manner of plastic surgery and anchored at its base with an implanted band composed of a flexible metal alloy that is covered with Dacron. The repair should last a lifetime.
"Up until the mid-nineties, the vast majority of these operations were done by the traditional sternotomy," Colvin says, "where you open the breastbone in the middle, spread the ribs apart, and close things up at the end. With mitral valve surgery, we first moved into the era that it was better to repair than to replace. Then we were repairing the valves earlier to prevent damage to the heart. The next step was to develop technologies to do it less traumatically, and to make it more cosmetically acceptable and more patient-friendly."
Colvin uses a state-of-the-art port-access technique, which involves a horizontal incision approximately five inches long under the right breast to gain access to the heart from between the ribs. A smaller incision is often made in the groin for the connection to the heart-and-lung machine. The heart is stopped with a cold potassium chloride solution and the patient's body temperature is lowered dramatically. The ribs are spread apart, and after the valve is fixed they are eased back into place but never cracked.
"This is the standard procedure for me," says Colvin. "Surely, it's cosmetic, but that's less important. If the efficacy weren't as good as conventional surgery, if the risks were higher, we wouldn't do it. But we saw no difference in the neurological or cardiac complications. We saw a marked reduction in the need for transfusions, and patients spent less time in the hospital. [Not] opening the breastbone reduces the risk of infection tremendously and makes recovery much more rapid."
I left Colvin's office with an appointment for surgery in one month. My husband and parents were incredulous: Don't you want to go home and think about it? My response was simple: What am I waiting for? After studying the results of my echocardiogram and stress test Colvin said some of the tissue that hold the mitral valve in place had ruptured. If deterioration was allowed to continue I was looking at more congestive heart failure and possibly sudden death.
I spent the next month in a heightened state of anticipation, clearly aware of my mortality, praying all the time, asking the why-me, why-not-me questions, and playing the lead in my own Frank Capra movie. How did I find the courage and the faith to be optimistic when each fiber in my being was telling me to hightail it out of town? I really didn't feel that sick. Did I? I devoted every extra minute to my children. My poor husband got instructions for how to run the washing machine. And then I reread my will.
I also spent the time finding donors for the four units of blood I needed for possible transfusion. I was OK'd for one autologous donation, but virtually no one in my family had the same blood type. I found out I had friends I didn't know I had. Within three weeks, I had seven pints of O positive blood banked at the hospital. My co-workers at Vogue were very supportive with cards, gifts, and encouragement. The beauty editor special-ordered a Nicole Miller nightshirt with snaps down each side to protect me from the undignified, back-flap exposure of regular hospital gowns. Seemingly little things became enormously important, deeply touching, and unforgettable.
On the morning of the operation my husband, parents, in-laws, and I arrived at NYU Medical Center at 11:00 A.M., and were shown to a surgical waiting room large enough for a gurney and four chairs. We passed the next five hours sharing funny stories and talking about anything other than the real reason we were there. Everyone was being so strong and brave; I tried to steel myself. I was determined not to cry, but the lump in my throat was burning.
When the OR nurse came for me with a wheelchair, I was waiting expectantly for a sedative but was told it interferes with the general anesthesia. I would be wheeled to the operating room fully awake and acutely aware. As I hugged and kissed my family and waved a thumbs-up good-bye, thundering tachycardia returned to remind me I was in the right place.
There are a few moments in life when we are truly alone. Birth and death, of course, but having lifesaving surgery must surely be one of those journeys. As I was being wheeled down the hall, past several operating rooms, I remember thinking how macabre-or perhaps how practical-it was that the doors were painted a deep burgundy red. We stopped outside Colvin's OR and were told to wait; they weren't quite ready for me. From the corner of my eye, I watched the nurses drape the table. Then I scanned the room for the heart-and-lung machine, which would keep me alive while they stopped my heart. I needed to see the doctor's face.
As I clambered onto the operating table, trying to pull myself up while holding my gown closed in back, I started to laugh. What did it matter if my gown came undone now? I lay back, my arms out to either side at shoulder height, my eyes fixed on the huge overhead light until I felt them roll back in my head.
After five-and-a-half hours in surgery, I awoke in a morphine-induced haze to wonderful results. Colvin was able to repair my valve, and he had also found and closed a previously undiscovered hole in my heart. I am absolutely convinced: The man saved my life.
My recovery began as textbook perfect. After six days in the hospital I went to stay with my parents for the first three weeks. Sometimes you can go home again if your parents are as extraordinary as mine. I felt euphoric, but I didn't have the physical strength to hold a full cup of tea (decaffeinated). My weakness and discomfort were very real; everything ached. The literature on minimally invasive heart surgery cites many patients who resume some of their normal activities within weeks; I was not one of them.
Within two weeks I felt sharp, stabbing pains in my right shoulder blade. Anti-inflammatory medications helped alleviate some of the pain, but I became short of breath and my feet and ankles swelled. Swollen extremities can be a sign of congestive heart failure, and I began to panic.
X rays revealed I had pleural effusion: The pleural sac, which contains the lungs, was filled with fluid that was compressing my right lung almost to my collarbone. I couldn't walk up a flight of stairs without stopping to gasp for air. Initially, I had been feeling so well that I had probably overexerted myself and torn an adhesion. To complicate matters, I was on blood-thinning medication, and I was bleeding underneath my lung. I had to return to the hospital to drain two liters of blood and fluid from my chest, which left me severely anemic, and four pounds lighter. Only 1 to 2 percent of patients present this complication, making the experience rare but notable.
My outcome would have been very different if I had opted for conventional surgery. Certainly recovery would have been weeks longer to allow the breastbone to heal, and I would have had a very visible scar down the center of my chest. Would I be wearing low-cut tops or blouses with the first few buttons unfastened, as I do now? Probably, noting a slightly proud and defiant streak of mine. A scar is something to be lauded, a sign of victory, but I would have been self-conscious.
More important, a mechanical valve replacement would have meant my taking the blood thinner Coumadin for the rest of my life to eliminate the possibility of blood clots forming around the valve. Anticoagulants also increase the risk of internal bleeding, even from a simple injury. With repair, I had to take Coumadin (which complicated the pleural effusion) for six weeks postsurgically, and then I switched to regular-strength aspirin. Now I'm taking only one baby aspirin a day, and I don't need blood thinners. The other replacement option, a tissue valve, has a life span of about ten to 20 years with a patient in his or her 40s looking at possibly three more operations during a lifetime. There should be no more heart surgery in my future.
Seven months after surgery I am feeling well and getting stronger every day. I am lifting weights again, walking on the treadmill, and I can run up a flight of stairs without getting winded. My happiness and relief are palpable; I am a victim of perpetual spring fever. I think it is this way with survivors of life-threatening illness.
I have lost quite a bit of weight since surgery, and my ribs are clearly visible. The other night as I was putting vitamin E on my scars, which are healing beautifully, I glanced at the center of my chest and saw something I had never seen before. There, beneath my sternum, I could see my heart beating, and I was transfixed. For the first time in my life the rhythm is very steady and very strong.
I have gone back to hug a special monsignor who prayed for me, and my husband who continues to do so. But it doesn't seem as if it's enough. How do you truly thank your family and friends, those who took care of you, comforted you, gave their blood, and did your laundry? What words can convey the undying gratitude and heartfelt affection I have for my doctors and nurses? When he had coronary bypass surgery, David Letterman brought his entire surgical team to the stage of his late-night show so that they could be applauded. I'd like to do that too. Bravo.
Change of Heart by Leslie Lipton Morelli
Originally Published in VOGUE September 2002
Kevin Sturman Photographer