Patient Stories - Heart Failure & Transplant Program
In November of ’91 I found out that I was pregnant with our first child. In February of ’92 I got a cold that I couldn’t quite shake. And by the end of April I had all the symptoms of pregnancy – weight gain, shortness of breath, fatigue – but it was too severe to be just the pregnancy. So I went to my local hospital and they ran some tests and found out I had Congestive Heart Failure, more specifically cardiomyopathy. I was then transferred to another hospital in early May. Because of my failing health they were going to take the baby early, but then they decided that the longer I could hold out the better the baby would be. They put me on steroids for the next several weeks to help strengthen the baby’s lungs. On May 26, 1992, I gave birth to our daughter Karley. She was premature and very small, just 2 pounds, 13 ounces and 12 inches long. She was 11 weeks premature but totally healthy; she didn’t even need to be intubated. After her birth, I received a heart biopsy that confirmed the suspicion that I needed a heart transplant.
Following Karley’s birth my condition really deteriorated and became critical. I refused to believe was going to die. I was 34 years old and healthy before the pregnancy and the thought of dying wasn’t an option. I loved to ski and fish and ride bikes through Yosemite Valley. Both my grandmothers lived into their nineties and each had four children. There was no family history of any major illness. I remember thinking to myself that these types of things can’t happen to young women like me.
With my heart’s condition quickly failing and only a heart balloon pump to keep my heart pumping I was transferred to California Pacific Medical Center. It was extremely difficult leaving behind my tiny daughter who I had only bonded with for one week. Three days after I got there I was feeling really bad like something was terribly wrong. I felt like I was slipping. I went into cardiac arrest, and coded for 52 minutes. Finally after regaining a heartbeat they put the VAD machine on me, which is like an artificial heart. I was intubated for 23 days. Thank God for the awesome nurses and doctors. The nurses insisted that I do things that I felt were really hard at the time, but they knew were better for me in the long run to help recover from my transplant.
On July 1, 1992, my prayers were answered. Dr. Hershon came in and said, “We have a heart for you.” That evening I was taken to surgery to remove the VAD machine and receive my new heart. When I awoke I was overwhelmed by feelings of gratitude and hope, while I thought, “I’ve got this new heart, a second chance at life. I can be there for my daughter. She won’t have to grow up without a mother.”
While I was hospitalized, the support I needed was always there. My husband or one of my parents was there for me 24-7. Even though they all kept full-time jobs, they found the time to always be with me. After transplant, I went through physical rehabilitation. It was very difficult, but it had to be done. I needed it to strengthen my muscles since my legs had atrophied from being bed ridden so long.
After being grilled for days by the Heart Transplant Nurse Coordinator, Joe Murphy, until I knew the post-transplant protocol, things like, ‘don’t take any new medications before calling us first’ and, ‘take your meds on time.’ It was tough love, but it was important for me to know. Finally I was allowed to go home on July 23, 1992.
It will be 12 years this July 1st that I’ve had my transplant. And you know what? I have not had a single sign of rejection in all those years. I don’t think its luck. I have a child that I want to be there for, that I want to help raise, and she needs a mom. That desire, as well as the medical instructions that I received, coupled with my personality, has helped me to take care of myself. You have to be your own advocate. I have always been compliant ever since I was transplanted. For example, I get my labs drawn every month and have extra copies sent here to me at home so I can keep track of my health too.
When you have been given a second chance at life, you appreciate and see things differently. With the arrival of Fall, as the trees change colors, it affects me more than most people, I deeply appreciate the beauty of it all. It’s the same thing in Spring, when all the blossoms are coming out. What is taken for granted by others, has so much more meaning to me.
I haven’t allowed this transplant to compromise my life. It doesn’t have to, not if you’re careful. I avoid being around sick people, and I do things like, wash my hands often. I have helped out in my daughter’s classes since Kindergarten and I have not gotten sick from volunteering my help.
I finally went snow skiing this year for the first time since my transplant. I felt I was ready. Skiing with my daughter brought tears to my eyes and to my husband’s eyes. He was just beaming when he saw us. Really, the heart transplant hasn’t been a hard thing for my daughter. To her, I’m just a regular mom. She goes to San Francisco with us for my biopsies every six months. My husband Norm makes such a big deal out of it, we go to San Francisco and stay for a couple of nights, and he takes us out for a nice dinner and we see the sights. She says, “Oh good, you have a biopsy in June! Sorry mom, but I can’t wait!”
Whose service has affected me? Whose hasn’t! All the nurses in the CICU, they all had an effect because they were all very attentive and were just awesome. They were right there when I needed them, all the time. Dr. Ernie and Dr. Hershon were great because they treated me like a person not just a patient and continue to do so, to this day. They always kept me informed and patiently answered my endless questions. They have been just wonderful. Both Nurse Transplant Coordinators, Dolores and Joe, have always answered my questions no matter how silly they may have been. I cannot thank Executive Secretary, Summer enough for all her help with the health insurance snafus, that is not an easy thing to do - kudos to her!
Last year, when I was due for my heart cath and biopsy at CPMC, my insurance company turned me down and said I had to get it done locally. We fought them for months, but in the end I finally had to go to the other hospital, as I was really late for my heart cath. Although they were good, their protocol is not as intense or as thorough as CPMC. So my husband Norm took the bull by the horn. He talked to people, wrote letters, he even talked to a vice-president of the insurance company, and we finally got back to California Pacific. He knew how important my continuity of care was so he refused to give up until they also saw how critical it was that I be allowed to go back to California Pacific. So I am now back home here at CPMC where I belong! It is so important to me to continue my care here; I shed many a tear over that situation, but I’m glad I’m back! I really don’t want to go anywhere else. I know I wouldn’t feel as comfortable, or as well taken care of, of have been rejection free if I went anywhere else. I like my people! I like my heart team at CPMC!
I’m a Vital Volunteer for Golden State Donor Services. It’s a non-profit procurement agency. I do public speaking for them, which is hard to believe because I was horribly shy growing up. Talking about organ and tissue donation is so important. The overwhelming gratitude for my gift of life has given me the strength to rise above may insecurities. It is so vitally important to share my story, because people need to know how organ and tissue donation can save the lives of so many people, it could be their mother, father, sister, brother, or even their child. When I tell my story I am representing the voice of a survivor who has a family, a child, and who is healthy, well, and alive today because of somebody’s gift of love.
California Pacific 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.