Hi, I’m Kimberly Kaufman. I grew up healthy and attended college. I am a Delta Gamma, I’ve traveled, I have amazing friends, and even more amazing set of parents.
In August 1999, I was living in Sacramento working as a Commercial Escrow Officer. In the middle of the night I was bitten on the foot by a black widow spider. It was horribly painful. Even after taking antibiotics I was in excruciating pain. The next month I was diagnosed with Reflex Sympathetic Dystrophy (RSD) from the black widow bite. My body’s sympathetic nervous system, which controls pain, now sends the wrong signals to my brain and causes a lot of pain and swelling. In 2001, I went to Stanford for an inpatient program and learned how to live with the pain.
In March 2004, I began having high fevers, high white cell counts, swollen lymph nodes, quickly gained a lot of weight, and overall felt terrible. I went back to Stanford for more tests to figure out what was going on. This continued through November when I finally had an echocardiogram and was told my heart was three times its normal size and not pumping blood as it should.
My cardiologist diagnosed me with Congestive Heart Failure (CHF) and said I would need a heart transplant within four to seven years. I was quickly seen at Stanford and had my first angiogram December 1. During the angiogram the doctors discovered I had previously had a heart attack. It was misdiagnosed in August by 911 dispatch and my primary care physician as simply heart burn. Over the next few weeks, I had a heart biopsy, collapsed lung, and a pacemaker and defibrillator implanted. I was discharged for two days of rest on Christmas Eve and spent Christmas Day at a nearby hotel, since I wasn’t yet ready for the two-hour car ride home. Christmas at a hotel and not at my family home? This is when I learned there is no normal in being a heart patient and a heart family.
When I was discharged again in January, my mom and I had plans to celebrate and treat ourselves to thick ice cream shakes and French fries at the Palo Alto Creamery. At final check-up I was readmitted for another pacemaker procedure.
In February 2005, my doctors started the process to put me on a heart transplant wait list. At the time, there was no history of a transplant patient with RSD, and my doctors did not want me to be the test case—even though my RSD and CHF were two separate medical issues. In September 2006, I was told I was not eligible to receive a new heart. My world was crumbling. I went from thinking I could one day get married and raise a family, to researching hospice care.
In the Cardiac Care Surveillance Unit, I was often too scared to look into other patient rooms as I passed by. On one particular night, I took a walk with my nurse and looked into every room. I saw two kids. Children in Cardiac Care? That’s when I learned about Child Life Specialists and how they help children and families navigate care and recovery.
In November 2006, I was again in the hospital and I had a chance to speak with Lisa, a Child Life Specialist with Lucille Packard Children’s Hospital (LPCH). I told her I didn’t have much, but I wanted to help those heart kids I saw. She gave me a wish list for Santa. How perfect, I believe in Santa, too! With $250 I went to Target and bought Christmas gifts for the heart kids, andkids and brought them to Lisa for Santa’s sleigh. I wanted these kids to experience the simple joy of waking up on Christmas morning knowing Santa found them, even in the hospital, and made their wishes come true. If they could find happiness, even for a short time, then maybe everything I was going through would mean something.
Each time I went back to Stanford, which was about monthly, I would say hi to Lisa and ask about the heart kids. At this point, I didn’t really understand that there were so many heart kids, even in my hometown of Sacramento.
For my birthday in September 2007, I told my parents I wanted to help the heart kids again. I’m defeating the odds and I’m still around, so maybe this is my purpose. I named my project Angels for Hearts. Like Santa or angels, I wanted to secretly give to others and spread joy, and I felt that joy in return. I had no idea what was to come.
Angels for Hearts’ first Christmas as a 501(c)(3) tax-exempt nonprofit was 2008. That year we learned the holiday donor fell through for the Hearts of Hope Support Group (now Mended Little Hearts of Sacramento). We were able to fulfill the heart kids’ Christmas wishes and began our tradition of serving a spaghetti dinner on Christmas for heart families.
Through meeting heart kids and their families, and building personal relationships with Child Life Specialists, we’ve learned about the very unique needs of this special community. What surprised us most is that these needs weren’t being met by anyone else. Until now.
Angels for Hearts began with me, my parents, and my brother and his wife. Joining us as dedicated volunteers are my tribe of friends who from the beginning were there to help and volunteer their time. Today we have a ten-person board of directors, including a heart kid dad! We are a small but mighty team.
Most people don’t get to see the legacy they are leaving behind. My life’s blessing is creating Angels for Hearts, and turning moments into memories. Getting kicked off the heart transplant list was meant to be. And I believe when the day comes that I’m no longer here, Angels for Hearts will continue helping heart kids and their families.