A Tale of Two Mothers
Survivor Janice Taylor (at right, in white top) and her extended family
As I approached our house in Los Gatos, California, after dance lessons, I thought it odd to see my Uncle Hoy there. It was dinner time, and he and my dad were standing in the doorway, and double odd, my dad was crying. Then there was screaming, and I remember it took a few seconds to realize the screams were my own. Lisa, my younger sister, was looking at me with terror. To this day, more than 50 years later, I remember her face.
That was the day my mother died — October 23, 1963. I was 10 years old. Through tears, my father tried to explain what is unexplainable to a child, he said that Mom’s heart just stopped. We knew she had been a little tired recently and was out of breath easily. She worked the night shift, and her doctor told Dad to hire a housekeeper to take the strain off her at home.
I’ve learned since that no housekeeper can fix an idiopathic dilated cardiomyopathy. After a little research through family members, my dad found that my maternal grandmother had died fairly young, in her mid-50s, of heart problems. They had no titles of conditions back then, she just had problems.
It was no fun for two young girls without a mother in the ‘60s, but that is another story.
Fast forward to 1994, I’m the 41-year-old mother of Ashley and Heather, 8 and 11, living in Morgan Hill, California, stressed to the max, working full time and in the midst of a divorce.
I complained to my doctor that I’d been very tired and out of breath, which I especially noticed running up and down the sidelines of Heather’s soccer games. I described my life and symptoms to him, I even mentioned that in the mid 80s my OB-GYN noticed an irregular heartbeat. He listened and referred me to a psychologist for therapy.
I went a couple of times, but I was still out of breath on the sidelines. There were many sleepless nights, so I filled my days with cup after cup of coffee just to get through. The days turned into weeks, and weeks into months. All of 1995 was a fog.
A year after the psychologist, I was sitting at my desk sipping my fourth cup of coffee when I noticed my heart beating very irregularly. I mentioned it to a co-worker, who gave me this ‘Duh’ look and said “Go straight to your doctor.”
I expressed my concerns and symptoms to my doctor who referred me to a cardiologist. There I got an angiogram and a diagnosis of “mild cardiomyopathy” and was put on a mild dose of digoxin, a heart failure drug.
Less than a year later — on November 14, 1996, at 10:17 a.m., an elderly man on his way to the doughnut shop found me, collapsed on the sidewalk outside of work, between the bushes and the cars parked on the street. The dear old man waved his cane and got someone to call 911. The ambulance made a U-turn and was there immediately. A fire truck arrived shortly. Chaos all around and no one knew it was me!
A lightning bolt was sent through my body, not once but four times. It triggered a faint heartbeat, and I was loaded into the ambulance. A fifth bolt was needed to revive me one more time.
Those who love me spent the next several hours pacing, waiting for me to “wake up.” Panicked, my father spent that time reliving my mother’s tragic end. My beautiful girls, who were 10 and 13, were picked up from school by relatives and told their mother was in the hospital.
The history of the early deaths of my mother and grandmother helped lead to the decision to surgically implant an internal cardiac defibrillator (ICD). This small box with wires running to my heart would detect when my heart beat erratically. When the rate reached 140 beats, the tiny machine would try to pace it back down to a normal level. If my heart continued to race and reached 180 beats per minute, the ICD would send a jolt of electricity into my heart, coercing it into a normal rhythm.
Over the next 15 years the ICD fired many, many times and saved my life each time. I had to have two more surgeries to replace batteries over the years. Unlike my mother and grandmother, I was blessed with technology that kept me with my family. Life without a mother is difficult, and I did not want that for my daughters.
Over the years, it was also difficult for my daughters to watch their mother get sicker and sicker. Too bad I didn’t have a frequent flyer card at the emergency room! My kids and family lived in terror many times, wondering if I would make it. A phone call from me or an unknown number brought fear to them. Although the technology helped, my heart was still failing, just at a slower rate.
In November 2010, I visited Shirley, my stepsister, in San Diego for Thanksgiving. I love her dearly and time spent with her and our family is like being home. I arrived safely, but sick, the Tuesday before Thanksgiving, and went straight to bed. Although excited to start cooking, I only made it for an hour the next morning before I went back to bed with intense, flu-like symptoms. I stayed in bed until Friday, when my family took me to Urgent Care.
My blood pressure was 70/40, and the doctor ordered an ambulance to take me to the hospital. Over the next several days of not being able to keep even a sip of water down, and after many doctors and many tests, it was discovered that I had an E-coli infection. I have no clue where I contracted it.
So to treat my failing kidneys, the hospital flooded my system with fluids, which further stressed my failing heart. Ashley flew down to see me and took one look at me and contacted my team of doctors, who arranged a private jet home!
Dozens of tests determined my heart was on its last legs. One doctor commented that he was amazed that I hadn’t had a massive heart attack already.
After a couple of weeks of recovering, I was transferred to another hospital where again technology came to the rescue: I received a Left Ventricular Assist Device (LVAD).
What a lifesaver, but at the same time, it was such a gigantic change in my life. Some Thanksgiving!
The LVAD essentially takes over your heart function so your heart doesn’t have to work. A small pump is placed next to your heart with a tube running through your belly and out to a small computer you wear around your waist all the time. Every second of your life, it’s there — even when you shower. If you listened to my chest, you would hear the constant hum of the pump not the thump of a heartbeat.
Once my family was trained to be my caregivers, I finally left the hospital — after three months! When we drove off, the car was full of fancy technology.
During the day, I was free to walk around with the computer, which was powered by two batteries weighing about 3 pounds each. Those batteries were in a bag slung over my shoulder that went with me everywhere. The batteries would last about 10 hours before I needed to replace them.
Where the tube entered my body, the dressing had to be changed every day. My husband was specially trained to do that because it required the care of a surgeon due to the risk of infection. It is, after all, a line straight to your heart.
Talk about life changing: everywhere you go, the battery bag is on your shoulder, and you carry an identical set up in another bag. Even when you go to the ladies’ room, you must carry the extra equipment with you. You are also trained that if you are somewhere and a malfunction happens, you must change batteries quickly and possibly the computer, too.
I lived life the best I could: I would take walks, go shopping, visit friends. Life with the LVAD was my “new normal.”
Bedtime is a whole new situation: You have a small machine that you connect yourself to that replaces the batteries, and the wires are only 20 feet long. My bedroom was rearranged to accommodate my being no more than 20 feet away. I would yell for my husband to get something for me out of the car. If he said no, I would beg, “Puleeeze, I am already connected!”
In spite of this crazy thing that was keeping me alive, I was so grateful to be there for my kids. They were 10 and 13 when I had my first cardiac arrest and in their 20s when I had my LVAD. Imagining the life my girls would have lived without me kept me strong and keeps me strong today.
I lived for almost nine months with the LVAD. Because my antibodies were high, I was put on a regime similar to chemotherapy. I was sick, I was tired, and I lost my hair. But I never lost faith. I was continually thankful for the LVAD and the modern procedures to kill my antibodies to prepare me for a heart transplant. I could not be placed on the transplant list until my antibodies were at an acceptable level. At the level they were, they would have caused my body to reject a new heart.
April 1, 2011, I was placed on the UNOS (United Network for Organ Sharing) transplant list. My status was 1-B, one step below 1-A.
It’s very difficult reconciling myself to being so excited knowing that someone must die for me to live. I spent a lot of time praying for the family that would lose their loved one. Knowing how painful this loss would be, it was hard to be excited.
My faith helped me understand that there is a greater plan, and I allowed myself some excitement at the prospect of a new lease on life.
On September 25, 2011, the call came. It was Sunday afternoon, and I was on my way to the grocery store. It was surreal to hear, “Mrs. Taylor, we have a heart for you.”
The doctor asked if I could leave ASAP because I was 2 1/2 hours away. Immediately I headed home, still not sure I should be excited. But I knew this would free me from the computer on my waist and the bag on my shoulder all day and the 20-foot tether at night. I called my daughters, who were very thrilled. After packing a small bag meant for about three weeks, we left for the hospital.
As excited as we all were, my transplant was very difficult. Afterward my doctors and nurses said I was their miracle patient.
I believe my transplant was especially difficult in part due to the removal of the LVAD. The machine that kept me alive all those months proved complex to remove. A sixhour surgery took 12 hours because they had to unwrap my tissues from the device.
When my new heart was finally placed in my chest, it would not pump correctly. My body had been completely dependent on the LVAD and got lazy at working on its own!
A powerful drug was administered to cause my vessels to constrict and assist in the pumping action of my new heart.
Within an hour, compartment syndrome developed in my right lower leg, when circulation stopped in that area. Typically compartment syndrome in any limb would mean amputation of that limb. They notified my husband who had just gone to take a short nap after the lengthy transplant to tell him they needed to amputate. He wouldn’t agree to the amputation and told them they didn’t know how strong I was and how hard I would fight!
Over the next month, I faded in and out of consciousness as I encountered complication after complication — kidneys failed, liver problems, a collapsed lung. On top of healing from the transplant, my leg had to heal and required a procedure to relieve the pressure so the blood could flow back to my heart. In addition to the incisions from the procedure on either side of my lower leg, there were wound vacs, which are sponges surgically attached to the incision area to expedite healing. I had several more surgeries on my leg and later had a skin graft to cover the gaping wounds.
If it weren’t for the skill of the doctors and the support staff, I am certain I would not have survived all of these terrible complications.
My three-week stay lasted four and a half months. I survived, but my marriage did not. I get it; none of this was easy for me or my family. I was in a hospital two and a half hours from my husband and five hours from my kids. My daughters drove down as much as possible, while trying to work and keep their own lives afloat. Family and friends came to visit from close to faraway. Being alone is one thing; being alone in a hospital room is entirely different. I was unable to leave my room for four months. I was very lonely; my nurses became my best friends, and they still are to this day.
I chose to focus on healing and keeping a positive attitude. I focused on my new grandson, Zane, born a few days after my transplant. I focused on the new life ahead. A life with my children and grandchildren is what kept me going on the tough days, weeks and months.
When my mother collapsed from a sudden cardiac arrest in 1963, they didn’t have the technology. No one even knew to give CPR, let alone have a defibrillator implanted. She lost a life with her family, and we lost a life with her. Today I am here to say I enjoy each day with my family. I visit my doctors regularly and take anti-rejection drugs daily. It is my new normal. The aftermath of the heart transplant is neuropathy in my leg and foot. It does not stop me from playing with my grandchildren and passing on my passion for riding horses.
Today I am retired and enjoy my days volunteering for the Donor Network, asking others to think the unthinkable and become an organ donor. I am alive today because someone made the choice to donate their organs. I think of the family of my donor daily, thankful for the gift of life, praying for their healing as they had to lose someone they loved for me to tell this story.
Because of research and technology, I survived sudden cardiac arrest, the LVAD process and a complicated heart transplant. I feel blessed to be here and watch my daughters begin their lives as adults and be present in my grandchildren’s lives every day. This life was not possible without the technology, skilled nurses and doctors we have today.
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