Daily Inspiration: Meet Kimberly Kaufman

Today we’d like to introduce you to Kimberly Kaufman.

Hi Kimberly, so excited to have you with us today. What can you tell us about your story? 
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 heartburn. 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 of putting me on a heart transplant waitlist. 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. The night I was told I was not on the heart transplant list, I took a walk with my nurse and looked into every room. I saw two kids. Children in the Adult Cardiac Care? That’s when I learned about Child Life Specialists and how they help children and families navigate care and recovery. 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 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 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 2 heart parents on our board: a heart mom and a dad. We are a small but mighty team. This year, we are 16 years old. 

Today, we support 5 hospital’s Pediatric Cardiac Units: Lucile Packard Children’s Hospital at Stanford, Stanford, CA; UCSF Benioff Children’s Hospital San Fransisco, San Francisco, CA; Sutter Children’s Center Sacramento, Sacramento, CA; UC Davis Children’s Hospital, Sacramento CA and Kaiser Roseville Womens and Childrens Hospital, Roseville CA. We are a one-of-a-kind non-profit. We are proud and honored to be the first to give iPads to 3 hospitals when they first came out, and the hospitals did not have this type of technology in their budgets or feel it was needed. This past holiday season, we gave our 25th iPad to a Pediatric Heart Unit. We feel if the Child Life Specialists ‘Wish, Want, and/or Need’ something to help their heart kids, we are there to support them. We have yet to say NO to a request from Child Life. We are proud of that. 

In 2014, we started our ‘I <3 Golf” program: we just celebrated our 10 season and are currently filling spots for season 11. Golf is the 1 sport that pediatric heart kids can play with zero restrictions. Everything we do for the Heart Kids is FREE. We believe in helping bring normalcy back to these heart families. So, we include the heart-healthy siblings in whatever we do. They are first and foremost a family before a heart family. We give the kids their own sets of golf clubs, and as they continue to play with us and grow, we replace and reuse the golf clubs for little kids until they reach their adult sets. These are their clubs, and we are growing the game of golf one heart family at a time, 

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. 

Can you talk to us a bit about the challenges and lessons you’ve learned along the way? Looking back, would you say it’s been easy or smooth in retrospect?
A smooth road; ha ha ha. I have to laugh at that. I am both a heart patient and have a chronic pain issue. Before I wore Oxygen 24/7, people could not tell I was sick. You cannot see heart issues or pain. I learned very quickly when I was diagnosed with a CHF and told I would need a transplant to survive who my real friends were. I had some friends that I thought were ride-or-die best friends that just turned around and walked away with no goodbye. That was hard. At the same time, some of my best friends are ones I met right when I was being diagnosed with CHF, along with a few from my Delta Gamma Days at SDSU, college roommates, and a few friends from high school. I know the one thing I am good at is being a friend, and I will go to the ends of the earth for my friends. The ones that walked away, I feel it is their loss. I truly believe in the poem about friendship “A Reason, Season or Lifetime”. 

I think the struggle for me being a founder of a non-profit is I have to remind myself sometimes that I have to slow down and take care of me. I am a heart patient. I can’t do everything, and have gotten better and setting limits and asking for help. For example, I got COVID for the first time earlier this year, and that basically shut down Angels for Hearts because we had to focus on my health. I ended up in the hospital with complications for over a week. Luckily, COVID did not get to my respiratory system, but I had very low blood pressure, renal failure, and severe kidney injury. It took about 3 months to get back to normal or normal for me. 

We are a small family-run non-profit and need to grow our board so I can get my parents off the board and give them time to have fun and not be working so hard. We are 16 years old and all volunteers. Nobody is paid. Many of my friends have been on our board or volunteered at some point. We are doing something so one-of-a-kind, helping heart kids. Congenital Heart Defect or CHD is the Number 1 birth defect; 1 in 110 kids born are born with a congenital heart defect (CHD). But nobody talks about it. We need to change that. I did not know heart kids existed. I did not know there were heart kids in Sacramento. In 2008, when we started, Sutter Memorial was where the kids were. I did not realize that Sutter Children’s Center was a children’s hospital within the walls of an adult hospital. 

Pardon the stereotype, but I thought heart issues were something old, bald, beer-bellied men have. But I was so wrong. More women and children are diagnosed with heart issues. We need to change the stereotype and share that kids have more heart issues, and just because you cannot see it does not mean it is not there. 

In contrast, kids with cancer are always talked about. By the age of 19, 1 in 330 have been diagnosed with some type of cancer. By the age of 19, some type of cancer. 1 in 330. More kids die of CHD than ALL types of cancers combined. Heart kids are 1 in 110 born. 

We have a saying, “You cannot say YES if we do not ask?” I am not afraid to ask for anything for Angels for Hearts. I realize I had a great life and still do. I got to be a kid and go to college. Yes, now, as an adult, I can’t have kids, I can’t drive, And that SUCKS. It is hard always needing a ride or not able to go to places like Tahoe due to my heart cannot go in that high of altitude. But I can do other things, and my friends find ways to include me or go other places; luckily, I can fly in an airplane. Some weeks I feel like I have seen more of my doctors than my friends. I see these heart kids that have never played a sport or just gotten to be a kid. The heart kids I meet they do not complain, they do not take life for granted. They are just happy to be here. And to me, that is huge. They know they might not grow up to be an adult. I’m close to turning 50 at 30 I was told I would need a transplant within 4-7 years. Well, I did not get a new heart, and I am still here. I had a stroke in 2016 and lost feeling on my left side from my breastbone to toes. I had to go to rehab and learn to walk. My dad and I once walked the hospital hallways naming everything I have had happen, medical tests, surgeries, procedures, etc. It was a LONG list. And it keeps growing. The doctors call me a unicorn because I just keep going. Everyone has something going on; life is not a competition. For me, every day is a bonus day. My favorite thing when someone says, “You don’t look sick or sound sick?” I reply, “Well, what does sick sound like or look like?” 

As you know, we’re big fans of you and your work. For our readers who might not be as familiar, what can you tell them about what you do?
Founder Non-Profit. What am I best known for? Being dedicated and almost to giving. I feel better helping others than helping myself. I truly believe that not getting a heart transplant is/was a blessing in disguise. A new heart would have helped me for maybe 10 years with lots of risks of anti-rejection. I have outlived what the doctors predicted. I think being curious and wanting to know information and answers to things has helped me to ask questions and find solutions. Angels for Hearts started as a project because I had just learned I was taken off the heart transplant list and saw 2 kids in the adult cardiac ICU. I was 32 years old and known for my mom being within feet of me. She was back at hotel for the night when my cardiologist’s partner came to tell me the bad news. My cardiologist could not tell me the news himself; he knew how I would take it. When my nurse Theresa could not answer my questions to my satisfaction, she called the children’s hospital (Lucile Packard) that is next to the Stanford Medical Center. A Child Life Specialist came over named Lisa and she explained the kids were safe and their parents could not stay the night and were in a sleeping room very close by. I shared my story of just hearing I was not going to get a new heart and needed to help someone else. The doctors were going to prepare me to die and get ready for hospice. I am NOT the person that will just sit back and not do anything. Especially for kids or my friends. Lisa and Kristen shared that heart kids bring their Santa’s list to the hospital in advance, thinking if they are not at home, Santa will not know where to find them. I asked if could help with their lists. My first hospital stay as heart patient was supposed to be for 2 nights it turned into over 50. My first night in the hospital was Dec 1st. I was discharged to a hotel with my family for 2 nights for Christmas Eve and Christmas night, then returned to the hospital for another surgery on Dec 26th. My youngest brother was a senior in college, and we spent Christmas at a hotel. I just wanted those heart kids to feel like a kid even for 5 minutes in the hospital, not a heart patient. So, I drained my savings account of the last $200 and my parents donated $50, and we spent $249.98 at Target. I remember bringing the toys to Child Life on 12/20/2006 due to it was right before I had an ablation on 12/21/2006. I just gave Lisa and Kristen the items and said these are from Santa for the heart kids. The next year, I was still here, and my parents and I wrote a letter to friends and family asking for help to help the heart kids again. With a simple letter, we raised over $5,000 in 2007. We called in Project Angels for Hearts; the name came from the thought of a guardian angel, someone you do not know doing something nice for you. Then Hearts was for the heart kids. 

That year, the Child Life Volunteer came down to meet us, and I kept asking for more items, telling them how much we raised, but they did not believe me. The year before $250.00 was ALOT of money. This was a huge jump to $5,000.00. What they did not know about me is when I get something in my head, I accomplish it or do my best to get as close as I can. There is always something closer to yes than no. I will talk to about anyone and share. We had 4 SUVs full of gifts, radio flyer wagons, and more. Later in January, when I was in the hospital, we got a visit from the LPCH foundation wanting to set a meeting to get more information on what we did. When I was discharged from the hospital, we went and met with the foundation, and we showed them the letter. They could not believe, as a family, that we did this; this was 2007, in the middle of the economic crisis, and people were not donating. Also, nobody talked about heart kids. I explained I did not know about heart kids until this and researched them. They helped us with a non-profit attorney to become a 501(c)(3) tax-exempt non-profit as long as we always promised to come back and help the heart kids at Lucile Packard Children’s Hospital. I don’t stop, and we found a way to help heart kids in ways nobody had ever thought. By August 2008, we had our Tax Exemption status, and we were a 501(c)(3) Non-Profit called Angels for Hearts. 

If you had to, what characteristic of yours would you give the most credit to?
Humor! To be through everything I have been through, you have to laugh. Sometimes, I think maybe God is not ready for my list of questions. What does all this have to happen to me? Maybe because I can handle it, even though it does not feel like it at times. I tend to deal with my chronic illness with humor. 

Knowledge and ask questions. Even if there are no answers. One of my college roommates, Mary Tamborski, who is a marriage and family therapist, told me once when I was just venting and frustrated. “Everything happens for a reason, not in an off-the-cuff way. Think about how we met; our moms knew each other, but we did not know this the 1st year we were roommates, even knowing we both grew up in Sacramento. If you would not have gotten RSD, where would you be? You would not be here. Because you were meant to get RSD. And then you needed to get CHF and not get listed for transplant. Now you have Angels for Hearts, and look at the amazing people around you. Everything happens for a reason. You have to acknowledge you may never know the reason, but just know there is one. Have faith in that!” 

Be kind. You never know what someone is going through because you cannot see it. Not to say I don’t have my days; we all do. 

Contact Info:

• Website: www.angelsforhearts.org
• Instagram: https://www.instagram.com/angelsforhearts/
• Facebook: https://www.facebook.com/angelsforhearts/
• Linkedin: https://www.linkedin.com/company/angels-for-hearts-non-profit/
• Twitter: https://twitter.com/AngelsForHearts
• Youtube: https://www.youtube.com/angelsforhearts

Image Credits
Angels for Hearts