December 1998 — After several doctor visits and various tests, we end up taking Lindsey to Dr. James Freeman, a pediatric cardiologist in Erie, PA. At first, he believes that he won’t find anything of concern, but after a one hour echocardiogram, we knew that something was wrong. His original diagnosis is a hole in her aorta—but he sends the echocardiogram tape to Cleveland Rainbow Children’s Hospital for confirmation. Meanwhile he orders Lindsey to stop all activities that she was involved with (softball conditioning and gym class, etc.) During the echocardiogram—Lindsey looks up at the wall and sees a picture of a baby. Lindsey looks up at doctor Freeman and asks, “Is that your baby? How old is she, etc.” Dr. Freeman says that it’s his first baby. Lindsey then asks, “Do you need a babysitter for the holidays? And then hands him her babysitting business card. (Lindsey ended up babysitting for them on New Years Eve.) Rainbow Children’s Hospital does not agree with Dr. Freeman’s diagnosis, but they agree to setting up a heart catheterization on 12/22/98.
12/22/98 — After a five hour catheterization, Dr. Freeman comes out with an ashen face and says to us, “What were looking for we didn’t find. What we found, we weren’t looking for.” Dr. Freeman went on to explain that Lindsey had an incurable heart disease called Idiopathic Restrictive Cardiomyopathy. As far as they could tell, Lindsey’s heart must have been attacked by a virus earlier in her life and caused irreversible scar tissue damage. Her only hope would be a heart transplant.
Unfortunately she wasn’t sick enough to be listed for the transplant.
April 1999 — Lindsey goes back to Rainbow Children’s Hospital for a metabolic stress test. Based on the results, the doctor makes a deal with Lindsey that she can “be a normal 14 year old girl,” but she has to promise to let us know when she starts to get out of breath or becomes weak during exertion.
April 1999 to October 2000 — Lindsey continues with six month-check ups with Dr. Freeman for a standard battery of heart examinations with no noticeable changes.
November 2000 — Lindsey starts to feel sick and misses school. We take her to the allergy doctor (Dr. Gallagher) to see if Lindsey has a cold or asthma flare up. He concludes that none of Lindsey’s symptoms are from a cold or asthma. Lindsey misses four days of school and finally, I say to Lindsey, “You need to go back to school. You are missing too much and there’s nothing wrong with you!” With that, Lindsey looks up at me and shouts, “You don’t understand, it’s my heart!” With that, Dara and I take Lindsey to Dr. Freeman that afternoon. He no longer feels comfortable treating Lindsey without
further assistance and recommends that we have Lindsey evaluated at the Cleveland Clinic.
11/27/2000 — We take Lindsey to the Cleveland Clinic and meet Dr. Maryanne Kichuk, lead pediatric cardiologist. After a thorough exam, she recommends that Lindsey be scheduled for a heart catheterization.
12/5/2000 — Lindsey has heart cath which confirms the original diagnosis. She recommends that Lindsey come back on a quarterly basis for exams and follow up.
2/14/01 — Lindsey senses a worsening of her symptoms and we go back to Cleveland to meet Dr. Kickuk for an office visit. Dr. Kichuk looked at Lindsey and says, “Lindsey, you will need a heart transplant within a year or you will die a very young woman.” She schedules Lindsey for a stress test the following week.
2/20/01 — Lindsey does unexpectedly well with the stress test. Dr. Kichuk amends her previous statement and says that Lindsey will likely need to be listed for transplant within a year unless her symptoms get worse (versus needing a transplant within a year.)
5/4/2001 — Lindsey has another heart catheterization and Dr. Kichuk determines that Lindsey needs to be admitted to the hospital and be listed for a heart transplant. This comes as a shock, but we make arrangements for Lindsey to be admitted 5/17/2001.