Patient Story #1: Luka
From Luka’s Dad
After the heartbreaking news that our newborn baby boy had a hole in his heart, the thought of surgery and a hospital visit left us feeling numb with fear in the weeks preceding the operation. My wife, who had spent the last 11 years as a cardiac nurse, knew all too well the risks involved in an open-heart procedure. The doctors and nurses at LLUCH ultimately provided excellent care for Luka and soothed our anxiety with informative updates during subsequent checkups. While our son's full recovery could only be credited to God our Great Healer, the staff at Unit 5800 was his closest angels.
Patient Story #2: Zoe
From Zoe’s Mom
My life changed and it felt like I was awake living a nightmare when my healthy six month baby was diagnosed with a rare congenital heart defect, ALCAPA. My child went into heart failure with only 8% heart function. My daughter was stabilized and given open heart surgery. At a year and a half, she had additional surgery because the left coronary artery was scarred down. At that point, my family was told that the artery was no longer functioning and my daughter would have to live with what she had. My toddler had a very uncertain long term recovery after the heart attack that she suffered at birth. I had no clue what pediatric heart disease was and how it would affect my child’s life. The simple things that other parents took for granted were a challenge for my little girl. The endless tests, office visits, and not to mention the financial burden. The best thing I did was ask questions, take notes, and if I didn’t understand, I asked until it was clear. The two things that I told myself I was going to do if my child beat this was to give my child a normal life and educate myself since I had to educate my child with this condition.
It is now four years later and Zoe is going to celebrate her fifth birthday. She is a recovered child, not cured. She lives every day with heart disease and functions with one artery. The medical appointments are now twice a year and she has been off of medication for one year now. Zoe is in preschool, plays on a soccer team and is in gymnastics. I could write a book on this four year experience and parents would not believe me. When I tell parents what my family has been through they probably think I am exaggerating because Zoe is now the poster child of a normal healthy little girl.
Zoe laughs when I tell her everyday how lucky I am to have her.
Patient Story #1: IW
IW was 72 years old when he first arrived at the International Heart Institute. Prior to needing a pacemaker, he had worked with Jacques Cousteau and dove all over the world. He went on to earn his PhD in Physical Therapy while continuing his active participation in water sports. As a senior citizen, he continued to participate in competitive water skiing (slaloms and jumps included) and was the first in his age group.
In his early 60’s, he developed sick sinus syndrome which required him to have a pacemaker. When the pacemaker needed to be replaced, he was implanted with the latest model that featured a new and an improved “sensor,” however the original sensor in his first pacemaker was better suited for his particular case. It responded to the vibration caused by the water skiing that greatly increased his heart rate. While the new device was much more specific for body activity, it didn’t work as well for him during water skiing. His heart rate would not increase to the degree that he needed it to, preventing him from competition. His physician called one of our LLUIHI physicians for advice.
Initially, our cardiologist thought that IW might need to have his otherwise normally functioning and brand-new pacemaker replaced with one that had two sensors rather than just one. Upon seeing him, our cardiologist evaluated IW’s case and assessed that his pacemaker could be finely tuned to get the desired response. Over a series of visits, the programming of his pacemaker was carefully tweaked, avoiding the need to replace the pacemaker. He has since undergone a replacement of his second pacemaker for normal battery depletion.
Now in his early 80’s, IW still continues to scuba dive and water ski. Each year in January, he goes to the Caribbean for scuba diving. Our cardiologist provides him with a note to give to the Dive Master that it was medically OK for him to dive. At the end of each dive, which on average goes down to 100 feet below sea level, IW uses less oxygen than the Dive Master.
Patient Story #2: JP
JP is a relatively young man in his 40’s. Prior to developing the need for a pacemaker due to sick sinus syndrome, he was a triathlete running marathons, swimming extended distances and cycling competitively. He lives in Arizona and was seen at one of the premier heart centers in Phoenix. Because of his sustained level of physical exertion, he was implanted with a dual-sensor pacemaker. A sensor is a feature of virtually all pacemakers today and recognizes the need for a faster heart rate when the patient’s own sinus node does not increase the heart rate appropriately.
Despite generally feeling better after the implant, he remained frustrated since he would rapidly fatigue from the sustained level of activities that he enjoyed doing. JP returned to the physician who implanted his pacemaker, perhaps a half-dozen times, all to no avail. Ironically, he worked for St. Jude Medical (SJM) in its Scottsdale, AZ facility where he made the chips and integrated circuits for the pacemakers. Although he did not receive a SJM pacemaker, JP did receive the most appropriate pacemaker for his problem but was still unable to return to the activities he enjoyed.
Our LLUHI cardiologist ran a “clinical engineering internship program” in which an engineer from one of the SJM divisions would accompany him to the hospital and be a proverbial fly on the wall to observe how the pacemaker was actually evaluated and used. This would also help them design even better pacemakers for everyone. One such participant in this program was an engineer from SJM’s Scottsdale facility. When she returned to Arizona, she knew JP and understood his frustration. She suggested that JP call our cardiologist. He was scheduled to be seen, allotting a full hour appointment to anticipate that extensive testing might be required.
Our cardiologist advised him to bring his jogging shoes, shorts and whatever else he routinely wore during his physical activities. After a detailed evaluation of the pacing system (which was normal), our cardiologist set the pacemaker in a manner that allowed him to monitor the behavior of the system during a period of exercise. JP was advised to run as fast and as far as he could over a 15-minute period – not on a treadmill, but outside the hospital. When he returned, our cardiologist downloaded the information collected by the pacemaker and finely tuned both the accelerometer and minute ventilation sensor.
Upon returning home, he contacted LLUIHI to report that he was noticeably improving but still somewhat limited. Because he had become slightly deconditioned over the past 9 months, this was to be expected. With the continuation of a regular exercise program, he rapidly improved and is now competing again as a triathlete. JP is looking forward to participating in the Iron Man competition in Hawaii. To-date, he travels from Arizona to Loma Linda twice a year for a detailed assessment of his pacemaker and any programming that might be necessary.