Heart: An American Medical Odyssey

by Cheney, Dick

  One of the things LVAD patients have to worry about is the possibility of infection at the site where the driveline passes through the chest wall. It is covered by a dressing that needs daily changing, a task almost impossible to do by yourself because of the measures that have to be taken to keep the wound sterile. The person changing the dressing has to wear sterile gloves and a mask, wash the wound several times with an antiseptic solution, rinse it with sterile water, and cover it with sterile gauze, arranging the dressing so that the driveline emerges from the middle of it. For the twenty months I lived on the LVAD, Lynne was my nurse every time I needed to change the dressing. The few times she wasn’t available, Liz or Mary would fill in. The danger of infection was significant because it could be fatal. It was my understanding that if I developed a serious infection, I would go to the head of the transplant list, but there was no guarantee I could get a transplant in time to save my life.

  Showering with an LVAD requires putting a waterproof bandage over the driveline site so that it isn’t contaminated by unsterile shower water. There is also a shower bag that the external equipment goes in so that it won’t get wet and short out.

  One of the big concerns was tangling the driveline on a doorknob or dropping the equipment. At all costs, I had to avoid putting the kind of pressure on the driveline that could reopen the wound and allow an infection to develop. As I think about it now, this all seems complicated and technical and important, and it is. But it is also true that over time, with first-class help, you learn to adjust and adapt to the new normal of living with a battery-driven pump keeping you alive.

  Thoratec, the company that makes the HeartMate II that I wore, has worked to make the device and its support elements user-friendly. It comes with a belt and mesh vest to hold the batteries and the control element. Lynne found an alternative on the Internet that more closely suited my needs. A woman in Ohio whose husband was a member of the LVAD club had designed and made a cloth vest to hold the gear. Lynne ordered one, and we then adapted it to my requirements. With the help of a local tailor, I soon had vests that I could wear with a suit or sport coat. With some adjustments in my suits to accommodate the vests and holes in my undershirts for the driveline, I had Lynne’s approval to be seen in public.

  Once I checked out of the hospital, arrangements were made so I could continue my rehabilitation program at home. Two therapists took over the work begun by their colleagues at Inova Fairfax. One focused on basic conditioning and strength and the other on improving my ability to perform the everyday tasks of living. I frankly had been something of a skeptic in the past on the subject of physical therapy. That was before I needed it myself. When I recall how helpless I was after the LVAD surgery, it’s impossible not to credit my therapists with working wonders for me. Part of their value lies in their ability to influence your mental attitude, to convince you that you can do anything if you put your mind to it.

  • • •

  When the 2011 fishing season began, I was eager to get back on the river with my fly rod. I had the opportunity that summer to fish with the Rivers of Recovery, a program that assists our wounded warriors, veterans who had served in Afghanistan and Iraq. Fly-fishing is great therapy for those who have been severely wounded or who suffer from post-traumatic stress disorder or traumatic brain injury. Twice now I have had the privilege of fishing with a Marine, Justin Clenard, who lost both of his legs in Afghanistan. Within eight weeks of being wounded, he was up and around on his prostheses. He is now a fully certified guide on the Snake River and a good one. The first time I fished with him, I explained that because I was on the LVAD, I had to be careful not to fall in or my heart pump might short out. He said, “I know what you mean. When I fall in, my legs get rusty.”

  • • •

  After I left the White House in 2009, I decided I wanted to explore the possibility of writing my autobiography. I retained the services of attorney Bob Barnett, who had represented Lynne over the years on the many books she had published, as well as numerous other authors. But he has one credential that most people don’t know about: in the 2000 presidential campaign, he had played me in Joe Lieberman’s practice sessions for the vice-presidential debate. He did the same for John Edwards, the Democratic vice-presidential candidate, in 2004.

  I never held it against him since both his candidates lost.

  My book, In My Time, was published by Simon & Schuster at the end of August 2011. With help from my family, we had been able to get it done even as I dealt with serious health issues. Liz was my coauthor, and Lynne and Mary were our in-house readers and editors. When it was released, I had just marked the first anniversary of my LVAD surgery and had recovered sufficiently to undertake an extensive book tour. We traveled from New York to Los Angeles and from Vancouver to Miami, with many stops in between. Travel on the LVAD was a complicated affair. I always had to have someone with me because of all the gear I had to take along. Given the post-9/11 security procedures, we sometimes encountered problems, but in general, the Transportation Security Agency personnel did their best to ease our way while still fulfilling their responsibilities. We occasionally encountered problems of our own making, like the time we left the base power unit in a hotel in Vancouver.

  Completing the book and undertaking the book tour were major accomplishments from the standpoint of my health. It proved to me and others that after more than thirty years of coronary artery disease, five heart attacks, a quadruple coronary bypass, one episode of sudden cardiac arrest, end-stage heart failure, and major surgery to implant the LVAD, I still could function and enjoy an active life.

  One day in late 2011, I received a phone call from the Cleveland Clinic, one of the foremost heart institutes in our country. The caller indicated the clinic was going to host a conference on innovation in the treatment of heart disease. He said they had a number of suppliers of medical devices and many physicians coming to their conference. Someone had suggested it might be useful to have a patient participate. Someone else said, “Let’s get Cheney. He’s had everything done to him that you can do to a heart patient!” I agreed and persuaded two of my doctors, Jonathan Reiner and Shashank Desai, to join me for a fascinating afternoon talking about the patient’s perspective and answering questions such as, “Which devices or procedures do you believe saved your life?” The list was long.

  • • •

  I had never given much thought to the possibility of a heart transplant. In more than thirty years of living with coronary artery disease, it had never occurred to me that I might someday be a candidate for one. As my disease developed, we always were able to meet the latest challenge with new procedures, devices, or medications. I believed that as I grew older and my disease progressed, we would eventually exhaust all options and my time would be up. I did not look at a heart transplant as one of those options.

  I understood from the beginning of the LVAD process, however, that if successful, it could indeed open up the possibility of a new heart. I requested placement on the transplant list at the time of my surgery in case I decided to go that route. Once I started feeling better, I realized that for me the decision whether to live with the LVAD permanently or use it as a transitional device wasn’t a close call. A transplant offered the best prospects in terms of longevity and a return to a normal life. I can understand why some people make the decision to stick with the LVAD and not subject themselves to yet another major open heart operation, but the possibility of putting more than thirty years of coronary artery disease behind me with the receipt of a new heart was all the incentive I needed. I also believed that transplant surgery couldn’t be any worse than what I had already been through, and I had Dr. Reiner’s assurances that transplanting a heart was usually simpler and easier than implanting an LVAD. I started operating on the assumption that the LVAD would buy me the time to work my way up the transplant list. Altogether I spent twenty months on the pump, thankful to be alive. I had learned from experience that my mental attitude was important in
getting through any medical crisis, and it was hard not to be positive when I woke up every morning, grateful for another day I never expected to see.

  • • •

  One night during the period we were waiting for the call that a heart was available for me, I was watching the eleven o’clock news. One segment showed two men getting out of a small plane and running across the tarmac carrying a cooler between them. Suddenly they dropped the cooler, it fell open, and a small package, which was, in fact, a heart, rolled out. They quickly scooped it up, put it back in the cooler, jumped in a waiting car, and drove off. I couldn’t help thinking, I hope that’s not part of my transplant team!

  As you move up the list, your team can give you some notion that you are getting close to the top. You will get a heart only if one becomes available that meets your requirements in terms of blood type, size, and general suitability, but that can happen even if there are people with the same requirements ahead of you on the list. They might turn down a heart for some reason, giving you a chance at it. During this period, you carefully coordinate your schedule with the transplant team, making certain they can reach you at all times and that you can get to the hospital pretty quickly. If a heart becomes available, two members of the team travel to the site where the donor is located and ascertain the quality and suitability of the donor organ. Usually several organs can be harvested from a single donor, including the heart, kidneys, and liver.

  Late in the evening of March 23, 2012, as Lynne and I were getting ready for bed, our phone rang, and Lynne answered. It was Lori Edwards, part of the LVAD transplant team, calling to tell us they had a heart for me. Lynne gave me a thumbs-up signal, and a few minutes later, Dr. Reiner called with the same message—one that’s hard to top in terms of good news. We dressed and drove to Inova Fairfax Hospital, about twenty minutes from our house in McLean. When we arrived, we checked into the same room I had been in twenty months before. There was an air of expectation as members of the transplant team drifted in, and we began the process of prepping for the surgery. It was a very different mood from the last time I prepped for open heart surgery. Then I had been dying, my liver and kidneys shutting down because of my failing heart.

  Dr. Alan Speir, the surgeon who would perform the operation, came in and introduced himself. He is a tall, slender man with a calm, reassuring air. I had a good feeling about him and what he was going to do for me. Thanks to Dr. Speir, his team, the donor, and the donor’s family, I was about to receive the gift of many more years of life.

  DR. REINER

  Choosing an appropriate recipient for a heart transplant is more difficult than you might expect. Even in the patient with advanced coronary artery disease, who is incapacitated to a great degree, the surgeon would hesitate to remove an organ which is, after all, supporting the life of the individual.

  —DR. NORMAN SHUMWAY, 1967

  March 23, 2012. Midnight.

  There could be only one reason for Shashank Desai to call so late, and I was almost afraid to answer the phone.

  “Really?” I asked, not waiting for Shashank to speak.

  “Jon, we have a heart, and it is perfect.”

  • • •

  Speaking before a joint session of Congress on May 25, 1961, President John F. Kennedy issued a challenge to the nation that would formally begin the race to the moon and usher in a decade of intense scientific advancement:

  I believe that this nation should commit itself to achieving the goal, before this decade is out, of landing a man on the Moon and returning him safely to Earth. No single space project in this period will be more impressive to mankind, or more important in the long-range exploration of space; and none will be so difficult or expensive to accomplish.

  While the general public was riveted by the scientific and symbolic race into space between the Soviet Union and the United States, there was a similarly intense competition during the 1960s among several surgical teams vying to be the first to transplant a human heart.

  The competitors were an eclectic group of visionary surgeons who came of age at a time when advances in cardiac surgery, such as the repair of congenital heart defects, valve replacement, and coronary artery bypass grafting were being developed at a dizzying rate, and no obstacle seemed insurmountable. The groups were led by Dr. Norman Shumway at Stanford University in Palo Alto, California; Dr. Adrian Kantrowitz at Maimonides Medical Center in Brooklyn, New York; Dr. James Hardy at the University of Mississippi Medical Center in Jackson, Mississippi; Dr. Richard Lower at the Medical College of Virginia in Richmond; and Dr. Christiaan Barnard at Groote Schuur Hospital in Cape Town, South Africa. There were many problems to solve—technical, biological, and societal—and with relentless perseverance, one by one these barriers would be overcome.

  • • •

  In the late 1950s, Stanford’s Dr. Norman Shumway, along with Dr. Richard Lower, had been working on ways to reduce the injury to heart muscle that accompanied surgery in the early years of the heart-lung machine. They found that if the heart was cooled, it would tolerate greater amounts of ischemia than if it was warm. It was during these animal studies that Shumway and Lower began to experiment with techniques to remove and then reimplant an animal’s heart. What began as an interesting exercise soon became the focus of their research, and they developed a surgical strategy that would substantially reduce the time required to implant a donor heart.

  A human heart connects to eight large-caliber vascular structures in the chest: the inferior vena cava, the superior vena cava, the pulmonary artery, four separate pulmonary veins, and the aorta. Rather than having to reattach eight separate vessels, a time-consuming and technically challenging surgical feat, Lower and Shumway devised a method to suture the back of the donor’s heart to a cuff of the recipient’s original right and left atria, which were left in place at the time of the excision of the recipient’s heart. This technique obviated the need to separately suture the inferior and superior vena cava and the four pulmonary veins, significantly simplifying and shortening the operation, and it became the standard method to transplant a heart.

  Before attempting a transplant, it was necessary to understand how long a heart could be preserved outside the body. Shumway showed that a properly cooled canine heart would remain viable for several hours. Although the heart has its own intrinsic pacemaker, it was unclear how a heart would function after all of the nerves supplying it had been severed. Work in the animal lab demonstrated that a donor heart, which has no neural connection to its new host (it is denervated), would begin to beat on its own once the flow of warm blood was restored to the organ. We now know that in some patients, the nerves begin to grow back after many months.

  While the various groups working to develop heart transplantation solved many of the technical problems related to the actual surgical procedure, the biological issues generated by implanting an organ from one individual into the body of another were much more challenging and had vexed surgeons for decades.

  • • •

  In 1933, Dr. Yurii Voronoy, a Ukrainian surgeon who was attempting to save the life of a twenty-six-year-old woman with acute mercury poisoning after a suicide attempt, performed the world’s first transplant using a cadaveric kidney. Unfortunately, the patient died on post-op day two, likely because her blood type was incompatible with the donor’s.

  During World War II, Peter Medawar, a British biologist working at the Glasgow Royal Infirmary in Scotland, became interested in understanding why many of the skin grafts used to treat severely burned soldiers failed. Medawar observed that a graft would succeed only if it originated from the same patient, and it would be rejected if it was obtained from a cadaver. Medawar surmised that tissue rejection was an immune-mediated response, a result of the body’s recognizing something as “nonself,” and his work, for which he received the 1960 Nobel Prize in Physiology or Medicine, ushered in the era of transplant immunobiology.

  In 1954, Dr. Joseph Murray, a surgeon at the Peter Bent Brigham Hos
pital in Boston, performed the world’s first successful kidney transplant. Murray overcame the issues related to rejection Voronoy had encountered twenty-one years earlier by transplanting a kidney from one identical twin to the other (one of the techniques Murray used to ensure that the twins were indeed identical was to have their fingerprints analyzed by the local police). Because identical twins share the same immunological identity, the recipient’s system saw the new kidney as “self” and did not reject the transplanted organ. The operation was a landmark moment in the history of transplant science, marking the first time a solid organ had been successfully donated from one human being, living or dead, to another.

  Relying on the ready availability of an identical twin would obviously not succeed as a durable organ procurement strategy. What was needed was a way to overcome the natural process of tissue rejection. During the 1950s, multiple drugs to attenuate the immune response (immunosuppression) were evaluated, including nitrogen mustard (originally evaluated as a chemical warfare agent) and 6-mercaptopurine (a drug used for cancer chemotherapy). Because of their toxicity, both were deemed unsuitable.

  Following the observation that many of the survivors of the atomic bombings of the Japanese cities of Hiroshima and Nagasaki had damaged immune systems, total body irradiation was used in the 1950s. The strategy contributed to the first successful kidney transplant between nonidentical twins, but it was risky and occasionally resulted in the death of the patient.

  Shumway and Lower, writing in a 1961 paper, were optimistic that a solution to rejection would be found:

  The precise mechanism by which the host causes the death of the homologous cells is not known. One must assume that, as these mechanisms are clarified, an appropriate means will be found of altering either the elaboration of the homologous antigen or the immunologic response of the host without injury to either graft or host.