Patient Stories - Heart Failure & Transplant Program
My hometown cardiologist told me there was nothing else he could do for me. The only step left was evaluation for a heart transplant. Although I had been sick for about eight years and knew that I eventually might need a transplant, I was shocked to hear the actual words. I was equally shocked that I wasn't being sent to nearby Stanford, where I had assumed I'd end up. When he told me I was going to a place I'd never heard of, all I could think was "California Pacific-what?" Oh, and did I mention the ambulance was coming within an hour? I was scared.
Well, if I knew then what I know now, I wouldn’t have wasted one moment being scared. Finding my way to California Pacific’s Heart Transplant service was such a blessing. I am so grateful for the opportunity to tell anyone who will listen how the dedicated and tireless work of everyone at CPMC made this potentially devastating experience not only tolerable but also so very special for me.
My health problems started back in 1992 at age 35 when I first noticed I had difficulty breathing. I had no energy to do the job I loved and no ability to concentrate on or enjoy the activities that had always made me happy. I was ultimately diagnosed with idiopathic dilated cardiomyopathy – a very weak and enlarged heart with no known cause. (A couple of years later, my younger brother was diagnosed with another form of cardiomyopathy so we now assume some type of genetic disorder.)
Once I began drug therapy and lifestyle changes, I noticed some improvement but my heart had been damaged so much that it wasn’t going to show significant progress. I slowly deteriorated and finally my kidneys gave out for the third and final time due to a lack of blood flow from my weakened heart. It was at that point that a heart transplant became my only solution.
When I arrived at CPMC, I was immediately struck by the intensity of my treatment. Yet despite this intensity, I was amazed at how calming the style of CPMC’s medical staff was. I quickly felt comfortable -- a good thing given the length of time I would eventually wait. I had been told that, given the scarcity of donors, the average wait for a new heart was seven to eight months. I made two unsuccessful attempts at going home on IV drips while I waited but unfortunately, they didn’t work out. When I finally returned to the hospital for the last time, my heart had deteriorated such that I needed to be put on a ventricular assist device (VAD) that would help my weak heart beat. Once on the VAD, it would be seven months before an appropriate heart was found for my transplant.
It was during those seven months that I discovered what makes CPMC so special. It’s the staff’s patient orientation. Yes, the hospital can boast state-of-the-art technology, the latest in procedures, and broad-based expertise but it’s the “patient comes first” attitude of the entire staff that truly defines the healing power of CPMC.
My home was the Transitional Cardiac Care Unit (TCCU), a special ward for those of us waiting for a transplant and a strong indication of just how far CPMC will go to achieving superior patient care. It provides the safety of a hospital setting yet the comforts of a home. It reminds me more of a college dorm than a hospital. Patients are in private rooms outfitted with things from home. We could spend time in the family room with its big-screen TV, computer, VHS/DVD collection and exercise equipment. Or the roof garden that was donated by the family of a former patient. Even the foodservice staff treats us as special; we are allowed to order things not on the menu as long as they work with whatever dietary restrictions we have.
In the TCCU, the same incredible nurses and patient care assistants are assigned to you every day (unlike the other units). I consider this one of the greatest advantages of the unit. The slightest change in your condition is quickly noticed. I will always be grateful that they cared enough to learn about me, my likes and dislikes. Unlike the routine of other floors, they never disturbed me before 9am unless they absolutely had to! And many of them, knowing of my great passion for fine dining, brought me wonderful treats to celebrate a holiday or, just because. All of the angels who work on that floor took the time to become friends and actually made much of the time I spent there enjoyable. They also embraced my family and friends, my Mom in particular, who spent a lot of time with me. I still smile every time I visit.
And then there’s Ernie Hauesslein, our cardiologist and soul of the heart transplant program. His devotion to the well-being of his patients sets the tone of the entire team that provides treatment. Except for a rare day off, Ernie checked in on me every day, taking whatever amount of time it required to let me know what was happening, answer my questions or reassure me that I really was going home someday. His confidence makes me feel capable of doing whatever it takes not only to survive a heart transplant but to thrive for many, many years to come.
I can tell similar stories about all of the other doctors, technicians, dieticians, social workers and staff that I came into contact with. Doing what is best for the patient, both medically and emotionally, is clearly their goal.
All of these efforts by the CPMC staff made the seven months I waited for a heart so much more endurable. While no one should have the bad luck to require a transplant, it meant everything to me to know there is such a fine team available who will help us get through it. I finally received my new heart in February 2003 and after a little tweaking, went home four weeks later. During my first year home, I’ve hit a few bumps in the road but the confidence I gained at the hospital makes me realize each bump is just that – a bump. Not a hill or a mountain, just a bump.
While finally getting my transplant seemed like the ultimate goal, I now know that the follow-up care is every bit as important as a successful surgery. The people in Ernie Haeusslein’s office – Dolores, Summer and Joe – have made this transition as easy as possible for me. It’s hard to explain the comfort and trust I feel just knowing all of these people are there and available to me any time I need them.
I’m not yet able to return to work so I’m spending my time immersing myself in my passion – food and entertaining. I’m taking some classes at SF State in Hospitality Management and spending a lot of time in my kitchen that I finished remodeling just weeks before I entered the hospital two years ago. You can’t go through an experience like a heart transplant without being happier than ever with the simple things in life.
I don’t know of words strong enough to express my thanks to my heart donor’s family. None of this would have happened without them. Their generosity during a time of such loss is beyond description. I am living because of their extraordinary and unselfish act.
Yet, without minimizing the importance of my donor family’s deed, I think I came home with a new, healthy heart largely because each of the people I worked with at CPMC shared a little bit of their own heart with me. Never before have I been the beneficiary of such a team effort. I am so grateful that the special people at CPMC were there to take me in, fix me and send me home with a chance for a long, happy life.
CPMC Heart and Vascular Center
California Pacific's Heart and Vascular Center is supported by one of the best heart hospital/center networks in the USA, offering quality, comprehensive patient-centered cardiovascular care by a team of top heart surgeons and physicians with leading-edge technology. Serving the entire San Francisco Bay Area, including San Francisco and Marin County, as well as the entire Northern California region, our team has many of the best cardiovascular surgeons and physicians in California and the United States.