Patient Stories - Heart Failure & Transplant Program
David Tsuboi
It all started when I got diagnosed with cardiomyopathy. I came to CPMC in January of 2001 and stayed in the hospital for three weeks. After discharge I was at home for six weeks, but then I had a clinic visit with Ernie (Dr. Haeusslein) and I told him I didn’t feel very well so he brought me to stay in the hospital again. Nineteen days after I was admitted a heart was offered. They had already taken me down to do the transplant but then Ernie came in and explained that they passed on the offer because the heart showed signs of bacteria. Of course I had gotten my hopes up, but I figured Ernie knows best so it didn’t really bother me that much. I figured I was in good hands and they knew what they were doing.
But then what started happening was that my defibrillator kept going off and I was only able to walk maybe 25 feet or so. I remember July 2, 2001 - I was told that I was so sick I had only five days to live. I told Ernie to do what he thought was in my best interest. So Dr. Donald Hill and Dr. James Avery put a VAD (Ventricular Assist Device) in. I was the first patient in California to have a Thoratec TLC2, the portable VAD. Because the device was portable, I was able to walk around the hospital visiting friends and getting exercise while I was waiting for a heart to become available.
On October 2, 2001, I had a 13-hour surgery to remove the VAD and ICD unit and received my new heart by Dr. Donald Hill and Dr. James Avery. I remember that three days after I got my transplant I took my first few steps, little ones, but I still got up. It was challenging, as I’m sure it is with everybody else. Trying to comb my hair was a challenge, brushing my teeth was a challenge, really anything raising my arms. For a while even standing up was a challenge. But as the days go on you get stronger and you try to do more things. It was about a month before I could go home. I really appreciated the nurses in the transplant unit in the hospital. They’re very personal but also very professional – they do a marvelous job with all the patients. They really make us feel as comfortable as possible under the circumstances. When I was there in the heart transplant unit, the patients had regular lunches together on Tuesdays. The hospital chef, Chef Michael, talked to our Heart Transplant Dietician Jane Tien to set up meals we wanted that worked for us. Jane really helped me out a lot through her expertise about dietary control.
As a whole, the whole transplant team really did a lot for me. Joyce Toohey, our Social Worker, was always able to answer questions, and help me personally take care of some issues. Joyce also runs group sessions… in Heart Transplant we have a little family there, where we’re pretty much ready and willing to tell our stories to each other, and to help the new people understand what they might go through. And as post-transplant patients we talk to each other about our symptoms and medications and treatment options. Post-transplant I’m able to breathe, to walk around… yes, I still have a lot of health issues like arthritis and some back problems, but at least I’m alive to deal with them!
I just want to say that the Heart Transplant Team is always there if I ever need to get hold of somebody. They always return my calls and answer my questions. With all the information the transplant service has obtained in the past it makes it easier for them to figure out some of the problems I may come across after transplant. I always call Nurse Coordinator Dolores Miniaci. She is always right on the ball. She answers my questions, she finds out the information I need, and with her knowledge and in talking to Ernie she guides me in the correct direction. And Summer, the Executive Secretary, has always been able to coordinate my biopsies, and she’s always there with a smile. She’s a very efficient person, and if there’s anything she can do she will.
And Ernie, he’s the best! He’s just always there for me, it seems like he never runs out of energy. Day in, day out, I don’t know how he can keep up the schedule he keeps up, but he’s always available, always has a joke for me, and is always looking out for my best interests. And he can do it all with a smile.
I have only one regret, and that’s that when I got sick I got sent to another hospital first, and I wish I had been sent straight to CPMC. At one time in my life I felt like I might not be able to make it, so being there with some of the best heart specialists in Northern California and in the country I felt that my chances were really good. And I guess I was right because I’m still here!
Now I do volunteer work for the California Transplant Donor Network (CTDN). I go around to schools periodically and talk to children. I go to doctor’s offices and hospitals and place brochure stands and talk to people in clinics. We do rotary clubs, health fairs, church organizations… we get the word out all over. I go to major sporting events too, the Giants are one of our major sponsors, and we’ve also done events with the San Francisco 49ers and the Raiders. We do big events to help make our presence known so people can sign the donor cards, and so we can help other people who may have a need for a transplant. CTDN also has a donor family recognition day to honor donor families and to thank them for all that they’ve done to help save lives. What’s neat is that some of us are able to meet our donor families at that time. As volunteers we’re there to get people information to help them decide if being a donor is something they want to do. And whatever people decide is okay, we just want people to make informed decisions. Somebody had to sign that card, and somebody’s family had to authorize that to make it happen. Somebody did it for me, so if I can help somebody else that’s great.