Heart: An American Medical Odyssey (38 page)

My biggest problem aside from my loss of appetite was that my weakened state before the surgery, plus the surgery, combined with all those weeks flat on my back, part of it sedated and on a respirator, had destroyed my ability to do anything for myself. For the first time in my life, I was completely and totally disabled. With the exception of breathing, there was no bodily function I could perform without assistance. And to keep breathing, I had to exercise my lungs several times a day with a device designed to expand my lung capacity. The degree of helplessness was extreme. I remember thinking that for the first time, I really understood the enormous challenges facing those who are permanently
disabled. I came to understand the courage and determination it takes them to perform functions I had always taken for granted. I was told I could plan on at least one full week of rehab for every day I spent in the hospital. In my case, that meant thirty-five weeks just to recover my normal capabilities.

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Once I was off the respirator, the rehabilitation process began. The therapists were dedicated professionals who were very good at their jobs. They saw me every day, often two or three times a day, and never let me duck a session. No excuses were accepted. We started small with simple exercises to begin regaining my strength. At first it took two of them to sit me up in bed or get me to a wheelchair. I was just dead weight because all of my muscles had atrophied. Simple tasks such as taking the cap off a tube of toothpaste were impossible. From my bed, I could see the bathroom, and I longed for the day when I would be able to get out of bed, walk to the facility, and use it on my own.

In the early days of recovery, I had numerous tubes in my chest. The most important was the LVAD driveline, but there were also other tubes draining my chest, which would come out as I healed. I had an IV and a device in an artery in my arm to precisely measure the amount of oxygen in my blood.

One particular memory of Lynne stands out in my mind. The night they wheeled me into the operating room for the emergency surgery, they were concerned that my fingers had swollen so much they might have to cut off my wedding ring. Fortunately they were able to get it off, and Lynne wore it on a gold chain around her neck until she could return it to me some weeks later. It was the first time I had been without my ring in the forty-six years we had been married.

Inova Fairfax Hospital had an innovative program we participated in during my stay. They allowed visits by family dogs, a great morale builder. Of course, there were certain standards that had to be met, but our two labs, Jackson and Nelson, were perfectly well behaved the day they came to see me. They seemed to understand this was a special
event and acted accordingly. It was great to see them. My family had also decorated my room with photographs that had been taken by David Bohrer, my official photographer in the White House. As my overall condition improved, I was taken outside to a garden at the hospital for some fresh air.

As I got ready to check out of the hospital, I thought of all the tremendously dedicated and talented people who had performed the surgery and looked after me for the initial five weeks of my recovery. One of the most impressive was Pat Rakers, the nurse in charge of my stay in ICU. She was tough but compassionate and ran her unit with an iron fist. Pat didn’t take any lip from anybody, including senior physicians and former vice presidents. She was a veteran of fourteen years” service in the US Army. While I was secretary of defense, Pat had been a member of the crew of a Patriot missile battery. After her time in the army, she went to nursing school and has followed my case in the years since I was her patient.

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Being deemed fit to go home didn’t mean I could get along without assistance. We made arrangements with a firm to provide health care at home during the early weeks of my recovery, including having someone in the house twenty-four hours a day to help with essential functions. They also made arrangements to transport me home from the hospital. When I was taken to the parking lot on a gurney, I saw a vehicle that didn’t look like an ambulance, which is what I had been expecting. It looked exactly like a hearse. It was a long, black limo with room in the back for the gurney and barely enough for the patient. Lying flat on my back, I had only a few inches of space between my nose and the roof of the “hearse.” It immediately occurred to me that I was being taken out of the hospital in exactly the kind of vehicle they would have used if my surgery had not been successful. I thought it was pretty funny, but I never shared that with my family. I wasn’t certain they would see the humor in it.

When we arrived home, I was moved from the “hearse” to a wheelchair
and taken into the master bedroom. Significant changes had been made to accommodate my needs as a patient. Lynne had rented a hospital bed, which could be raised, lowered, or adjusted at the touch of a button. There was also a specially designed chair suitable for use in the shower and the bathroom, but it still required professional help to make use of it. The home health care people were set up in the basement, and I could summon them with a two-way radio from my hospital bed anytime I needed help. Most of them were nurses or EMTs working a second job. They were very good and proved invaluable in the early weeks of my recovery at home.

The LVAD is a tremendous piece of lifesaving equipment, in my case providing the time needed to become eligible for a heart transplant. Initially it takes a lot of getting used to and a good deal of discipline on the part of the patient and the family. Even after you have left the hospital, it is crucial to have someone to help on a continuous basis and, if at all possible, to have a devoted family member who can be your advocate and ask all the tough questions, taking responsibility for your care. In my case, Lynne devoted virtually all her time for many months to focusing on my well-being. She learned everything there was to know about the LVAD and the technology it represents. Liz and Mary, as well as Gus Anies, who works for us, took training on the operation of the equipment so they could help me deal with a crisis should one arise.

My family got deeply involved in other ways with my care while I was still in the hospital. During the most difficult days of my recovery, one of them was present twenty-four hours a day. There was a window in my room that opened out onto the hallway. Each morning I could look out and see doctors making their rounds followed by the usual collection of residents, students, and nurses. One day as I looked out, I saw a familiar face: Liz was in the gaggle following the doctors.

While the up-to-date LVAD I used is a significant improvement over the older machines that required patients to be tethered to a large machine and therefore unable to move about independently, it still requires a lot of effort to adjust to always having to be plugged into a power source.
When I came to after the surgery, one of the first things I was aware of was the driveline coming out of my chest into a control element, through the base power unit, and into a wall socket. It was mandatory that I
never
be without power for the LVAD. When we moved out of the vice president’s residence in 2009, we had moved into a new home we had built in McLean, where there are a lot of old trees, and much of the power distribution system is aboveground. It is not at all unusual in a thunderstorm or a heavy snowstorm to have major power outages. Without knowing that someday I would be living on an LVAD, we had fortuitously installed at our new house a large generator powered by natural gas that automatically turns on any time there is a power outage.

On one occasion, a TV camera crew came to the house to shoot an interview with me for a documentary. They were determined to set up a lot of lights to supplement the natural light that was available. In doing so, they had knocked out the circuit breaker, shutting off power to that part of the house. I told the producer, tongue in cheek, that I was living on a heart pump that required power twenty-four hours a day. I said I didn’t want them to be alarmed, but it made me very nervous every time they shut down the power. (I didn’t tell them I was operating on batteries at the time.) They became exceedingly apologetic and cooperative once they believed their zealotry about lighting might be a threat to the continued functioning of my heart.

In my initial period at home, I was in bed most of the time and therefore on the tether connecting my LVAD to the base power unit, which was plugged into an electrical outlet in the wall. As I made progress and became more active, I began to operate off the batteries that came with the LVAD. We had ten or twelve of them that when fully charged were good for up to twelve hours of operation. I wore two at a time. One was supposedly sufficient to run the LVAD, but I never gave one-battery support more than a brief test. Redundancy is a very good thing when your life is at stake. I charged the batteries I wasn’t wearing with a machine that fit inside a Rollaboard. When I traveled I carried it that way. The base power unit also fit into a Rollaboard for easy transport.
At night in bed, I would switch over to the tether connecting me to the unit, which was much more comfortable for sleeping.

There are numerous alarm systems on the LVAD that signal when the batteries are low or if there is a malfunction in the equipment. I carried a black “go bag,” which contained a spare control element as well as extra batteries, so that I could replace all of the external equipment if necessary. On one occasion when Lynne and I were at a cocktail party, there was suddenly a noise that sounded a lot like a cell phone going off. My immediate reaction was to wonder what fool had failed to turn off his phone at the party. Then Lynne came over to me and said, “Dick, I think you are beeping.” She was right: an alarm was indicating my batteries were low. We stepped into a nearby room and put in new batteries, trying to draw as little attention as possible.

On more than one occasion, in the middle of press interviews, I deliberately disconnected one of my batteries, which always triggered the alarm. It was disconcerting to those around me, most of whom didn’t realize I had a backup and everything was still operating normally. I did it once to Jamie Gangel of NBC, who immediately pleaded, “Please reconnect that!” and forgot the line of questioning she’d been pursuing. Once flying across the country, I had my noise-canceling headphones on, listening to music. I was reading a newspaper when my assistant, riding several rows in back of me, came up and tapped me on the shoulder. When I took my earphones off, she told me I was beeping. Because of my headphones, I hadn’t heard it, but everyone else on the plane had.

Once when I left my house in Wilson, Wyoming, to run some errands in downtown Jackson, I forgot the go bag, which presented quite a dilemma when my batteries started beeping. All the instructions say that they are good for only ten minutes after the beeping starts—and replacements were twenty minutes away. I called my daughter Mary, who was visiting, and she grabbed the go bag and headed in her car to the Snake River bridge, the halfway point between our house and Jackson. I set out for there myself and got new batteries from Mary before the old ones ran down.

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.