THE TELLTALE HEARTS

Posted on 2006-Mar-19 at 09:53

March 19, 2006  COPYRIGHT SUSAN L. FRIESEN 2006

KLEENEX ALERTÂ…Â…Â…Â…Â…Â….

A blogger wanted to know more about our children, especially the two daughters with heart transplants. I thought IÂ’d take time now to introduce you to them. First, let me share some background info.

I’m a mom of 5 children—two adult sons (our oldest son, a proud U.S. Marine; our second son, a musician, also a college student majoring in international business and Japanese) and three elementary-age daughters.

Although I can wax prolific about our sons and middle daughter, I am frequently asked about our two girls, Shivan and Lindsea, and how theyÂ’re faring, so IÂ’ll spend time in this blog to mostly comment about ShivanÂ’s situation, as itÂ’s a lengthy explanation. In a future blog, IÂ’ll share at-length about Lindsea. Also, I want to share separate blogs about our other children, too. If you have any questions about heart transplantation, feel free to send me an instant message or reply to this blog.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Strangely, on the first Friday of October, three years apart in 2000 and 2003, Shivan, now 11, and Lindsea, now 9, fell mysteriously ill to some unnamed virus. Doctors donÂ’t know what virus struck them, causing their hearts to balloon and fill their chest cavities. By the time they were diagnosed, the virus had evacuated their bodies, but left a telltale trace of its existence in the heart muscle itself.

Their condition is called idiopathic (cause unknown) dilated cardiomyopathy. Other than Shivan—born with a heart murmur, which closed after two years, the girls weren’t born with any discernible heart problem. They were both six years old when their hearts failed.

Before this catastrophe struck, the girls were typical children, running around, playing, and enjoying life.

Doctors can’t say how they fell ill—whether to environmental or genetic reasons, a combination of the two, or some other reason. It appears obvious that two of our five children were genetically predisposed toward getting the illness. This is just one rationale. We’re not given a definitive answer, so don’t know if this condition will affect the other children, or not; or will be passed on to another generation. It is very frustrating, even nightmarish, to be ignorant, and not know the answers to our basic questions. I pray that all the hard-working medical researchers will finally discover the secrets to diseases like cardiomyopathy, cancer, and diabetes. Obviously, my prayer is a selfish one, as I’d love to see my children grow up and live long, productive lives.

Shivan fell ill in 2000 during an outing to the southern Sequoia National Forest. IÂ’d taken the girls to a former loggerÂ’s camp, now a resort called R-Ranch in the Sequoias. WeÂ’d planned on staying in the cabin for five days, but Shivan complained of flu-like symptoms (malaise, weakness, tiredness), so I wanted her checked-out by our Air Force pediatrician back home. I drove more than 200 miles to get to the base hospital. A radiologist, seeing the oversized heart on an x-ray, alerted our doctor to ShivanÂ’s plight. She didnÂ’t have walking pneumonia, as originally diagnosed. A cardiologist in Santa Barbara, California performed an echocardiogram and told me her heart functioned at only seven percent of normal. She was rushed to the ICU, and airlifted to UCLA Medical Center, to await a heart transplant.

Given many drugs to stabilize her between 20-25% ejection fraction, Shivan was allowed to wait outside the hospital until the call for a heart came in. Fortunately, the wait wasnÂ’t two years as we were told was possible, but took about four months. While awaiting the life-saving organ, she collapsed on a slide in the McDonaldÂ’s Playland. She experienced a sudden death episode (sudden cardiac death).

Alaina, our middle daughter, then age 5, saved Shivan’s life, when she pushed her down the slide after she’d collapsed at the top. My husband, Ken, waited in the Playland, while I stood in line to get Happy Meals and other food. Ken noticed Shivan, face down, her body limp. He turned her over and saw her face—gray-blue. Ken’s words:

I thought sheÂ’d died. I took her pulse on her neck and felt nothing. SheÂ’d wet her pants, a sign sheÂ’d lost bodily function. I picked her up to hug a final goodbye. I heard one very faint heartbeat!  I saw Susan outside the gate and yelled, ‘Call 9-1-1.” Someone directed me to an empty booth and I placed Shivan on the table, giving breaths and lightly compressing her chest, not giving full compressions because of her enlarged heart and blood clots in the left ventricle. A bystander wanted to give heart compressions, but I told him, “NO.” Paramedics arrived. An EMT held a syringe, ready to inject something into her heart. I quickly explained that she was awaiting a transplant. The head EMT told the other medic to stop the injection. Shivan “came to” and her first words were, “IÂ’m wet!”

She was taken by ambulance to UCLA.

When Ken yelled, “Call 911,” I dropped the tray of food and tried using my cell phone, but it took too long to get the cell to start-up. I figured the battery was dead or dying, so I’d better get to a pay phone pronto. I saw an outdoor phone booth at the Denny’s next to McDonald’s, so ran through the parking lot to call on that phone. It seemed like time dragged until medical help arrived, but actually the team came about 5 minutes after my emergency call.

Both daughters are doing remarkably well after having their heart transplants. Shivan experienced a couple setbacks since her transplant five years ago, but theyÂ’re unrelated to the heart itself. She was hospitalized for an appendicitis attack, requiring an appendectomy. She also needed hospitalization after a bite from a brown recluse spider.

All in all, both girls are doing well with her new hearts, but theyÂ’re immune-suppressed, so arenÂ’t around too many crowds of people on a regular basis. WeÂ’ve decided to homeschool the girls. They enjoy designing computer graphics, doing Internet-based lessons, illustration, reading, photography, swimming, snorkeling and more.

Please remember Shivan and Lindsea and our entire family in your regular prayers. If you can, print-out this blog and share with others that they may pray for the girls, too.

Thanks for reading this and caring!

Susan Friesen

To read longer articles we posted about the girls:

In another web entry from those days and also on the 2Hearts web site.

To see a virtual patchwork quilt dedicated to Shivan or one to Lindsea

My article Lightning Strikes Twice posted to Gaea ShawÂ’s website.

My article chosen as “Story of the Month” for July 1995 in Transplant Speakers, Int’l