It can be difficult, to say the least to live with multiple chronic illnesses. To say that I have literally been sick since the day I was born would be the understatement of the century because my illnesses began before I even made it out of my mother’s womb. In the past on this blog I have written about one of my illnesses at a time as I slowly shared my life story with all of you. As with recent developments and severe declines in my overall health I have chosen to tie it all together for you now. For any of you that are interested in more details search for Born Cursed, in my archives.
In short, I was born with four major heart defects that just so happen to appear at the same time. This condition is congenital and is referred to as Tetralogy of Fallot. There was actually a movie made about the doctor and his student that created the very technical surgery to save a baby with my exact condition. The movie is called, Something The Lord Made.
The two men the movie is based on are responsible for saving the lives of babies born with my condition, had I been born less than a decade earlier I would possibly not be here to share my story at all, as most babies born with Tetralogy of Fallot did not have a very high success rate of survival until the early 1970s where I was not born until January of 1978 and I did not have my life savings surgery until the follow year in January of 1979. Here is a little more detail about my heart defects.
In short, I was an extremely blue baby and I had multiple “tet spells” where I repeatedly lost conciseness and nearly died several times prior to my life saving surgery. Add in the fact that my mother hated hospitals and chose to plan my birth in a doctor’s office, rather than a regular hospital and I was taken directly home a few short hours after my birth without a proper examination by a pediatrician. My mom had been proud of her choice and had found a particular joy in bragging to our neighbors that came to visit me that day, that I was zero days old.
Well baby exams were not as common back then and I would not have my first real examination until I was already four months old. It was later explained that the moment the nurse began to check my vital signs and placed her stethoscope to my beating heart, she knew instantly something was horribly wrong. It was said that my heartbeat was so loud, it sounded similar to a freight train inside my chest. I was instantly sent to UofM Mott Children’s Health Center. I was followed by a pediatric cardiologist and my health was reviewed weekly. I was definitely a blue baby. I made it until my first birthday and due to a series of unfortunate events, my mom missed a few appointments in a row. She said the winter of 1979 was horrible and that she did not have a properly running vehicle at the time. By the time she was able to make the trip I was in need of emergency open heart surgery. My recovery and side effects from this surgery alone, were permanent.
I suffered multiple infections as a child as my body was constantly fighting to compensate for my heart working so hard. This caused my immune system to be compromised, therefore any time anyone so much as coughed in my direction I would end up desperately ill for weeks at a time. A common chest cold would lead to pneumonia, which then in turn, meant multiple hospital stays for IV antibiotics and cardiac monitoring. I also suffered from chronic neck and back pain to the point that I would wake up with my neck completely locked to one side. These stiff necks, that lasted for days, also meant more hospital stays and more tests. This also made going to a public school a very difficult challenge because of the amount of germs I was being exposed to everyday. I was never allowed to play school sports or do any activities outside in the winter time. I suffered from a constant inflammation in my chest wall called costochondritis. This condition is a very painful, lifelong problem and since my sternum is literally wired together being in cold air makes this condition worse.
Asthma was my second major health issue. I most likely had asthma my entire life, but my body hid it well as my lack of oxygen was always blamed on my heart conditions. I was never officially diagnosed or treated with asthma until I was nine years old. That was when I first started carrying an inhaler everywhere I went. My asthma was the most severe kind and was near fatal too many times to count. My lungs always felt like they were on fire! On top of everything, I was stupid enough to smoke cigarettes and smoke pot as a teenager.
At the beginning of my freshman year in high school a science teacher nearly killed me when he did a sulfur experiment in our classroom and set it on fire, creating yellow smoke. When I tried to tell him I could not breathe he told me to have a seat because the bell was going to ring soon. I caused a chain reaction and everyone started asking to leave and he got angry and made the entire class sit back down. When the bell finally did ring I made it to the office and they called my grandparents who lived ten minutes away. My grandpa came as fast as he could and he put me in his car with the air conditioner blasting so he could get me to a doctor because my inhaler was not helping me. Trips like these always earned me two injections of prednisone given at the same time into each hip because the doctor could not put a large enough dose into a single injection to save my life. Sometimes these steps would have to be repeated every thirty minutes, until my airway opened. I was so sick the school actually provided a homebound teacher to come to my house for three straight months after that while I recovered. My grades began to slip from this point forward.
My cardiologist told my mom several times that I should not ever have children. Just carrying a baby in my body could kill me because of the constant strain on my heart. I did make it to the beginning of my sophomore year of high school, but I was hiding the fact that I was already pregnant at the time. When my mom and the school found out I was pregnant I was sent to alternative education six miles away. My heart took a huge hit during this pregnancy because, as predicted, my heart was not made to withstand the added weight gain, depleted vitamin levels that my baby needed and added water weight. I gained sixty-four pounds and carried my son to exactly his due date. I was married at seventeen, just weeks before my son was born. I met my second husband and filed for divorce. We were pregnant when we were eighteen with our first daughter. My pregnancy was pretty amazing this time around, but my body did not go into labor on its own. So seven days after my due date it was decided to admit me and induce my labor the next morning. I delivered her three hours later and the tests began.
`Every child I gave birth to was required to have an EKG and echocardiogram within an hour of birth. We really did not think much about this because I had been through the same exact thing when my son was born, but this time we were wrong. Our daughter was born with two separate heart defects than had to be monitored by a cardiologist every six weeks, until both holes closed on their own by the time she was six months old.
My divorce was final from my first husband a month after our daughter was born, and I married Ryan five months later. We were both nineteen at the time. Ryan joined the Army, and six months after that I moved to Hawaii with him when we were twenty. Our son was three years old and our daughter was one. I was already four months pregnant at the time of the move. Add in the stress of a nasty divorce exactly a year to the date of our move, and now having to see Army doctors, plus be five thousand miles away from our nearest family member, and my pregnancy was destined to fail from the start.
My body started rejecting my pregnancy at twenty-two weeks. My heart was not strong enough and I began to retain fluid to the point that my ankles were as big as my thighs at the time. At the same time Ryan encouraged me to go back to high school and get my diploma, so I signed up at the local high school in Honolulu and began night classes a couple of weeks after we moved. My new pediatric cardiologist had never met anyone with TOF so she constantly had me come in for tests. Each time I went in she had more and more people in the room. I grew up going to a teaching hospital, so the extra people did not bother me, but it got to the point where I could not even go to a regular doctor for a bee sting without extra people asking to come in the room to listen to my heartbeat, which sounds more like water flowing than an actual beat.
The local hospital did stop my premature labor multiple times, and I actually did graduate from high school that September at nearly seven months pregnant with our second daughter. I only made it another four weeks, and this time when we arrived at the hospital it was too late. I was already dilated to five and in full-blown labor. At almost thirty-six weeks along a decision was made to follow the plan of my two previous deliveries. I was given an epidural and a resident broke my water. I was given IV medication to induce my labor, which ended up lasting for over thirty-one hours. Our daughter was born in severe respiratory distress and spent her first seven days of life on a respirator and feeding tube. She remained ill and was unable to gain weight until she was three months old. I finally gave up on the idea of having anymore children and had a medically necessary tubal ligation the week before my twenty-first birthday.
My health was pretty stable for a few years after that. We had moved back to Michigan after Ryan suffered a career ending injury to his shoulder. I started a job as soon as I moved home with our children, and Ryan followed seven months after. I was in and out of the hospital a few times a year with asthma and pneumonia, but we handled everything pretty well. I missed multiple days a year at work, but never exceeded twelve total weeks in a year so my job was protected. I worked for four years as a supervisor at a retail/ grocery store until my grandpa came to live with us on hospice. I then had to quit my job to take care of him full-time. He only lived four more months and after he died in August of 2004, with Ryan and I right at his side until his last breath. I was admitted to intensive care for ten days with pneumonia and pleurisy right after he died. It was decided that I would take a break from working and attend college instead.
In June of 2006 I had finally graduated and had been working for six weeks for an oncologist, when my mom became sick. I missed two days of work for my mom to have surgery and I was fired, which did not matter because my mom was too sick to be left alone either way. She died in our home on hospice six weeks later. Ryan was attending college at the time working on his bachelor’s degree.
We actually even became foster parents in early 2009 and housed eight children through our home over two years time. Some of the children we cared for were siblings sets. We had as many as seven children in our home at a time total. Michigan state law only allows for a maximum of five children, but we were willing to take more than one sibling set at a time. The state allowed us a court order to bypass this law to avoid siblings being split into multiple homes. We also had six bedrooms and four bathrooms. This meant we had plenty of space for all of our children. We even purchased a twelve passenger van so we could take all the children everywhere we went. These two short years were some of the best years of my families lives!
By the time Memorial Day weekend came in 2011 we never knew what hit us when tornadoes tore through our small town, and multiple other cities in Michigan that Sunday. That tornado marked the beginning of the end for life as we knew it! My life and my health would be on the line from that day forward and my family would never be the same again! In less than fifteen minutes, we lost most everything that had taken nearly fifteen years to gain.
By the time Memorial Day weekend came in 2011 we never knew what hit us when tornadoes tore through our small town, and multiple other cities in Michigan that Sunday. That tornado marked the beginning of the end for life as we knew it! My life and my health would be on the line from that day forward and my family would never be the same again! In less than fifteen minutes we lost most everything that had taken nearly fifteen years to gain.
I was not home when the tornado hit the corner by our house. I was running errands and preparing for a Memorial Day cookout with our friends. We ended up at a hotel that night because our house was flooded and smelled musty from all the wet carpet and drywall. The second day at the hotel was when we made our near fatal mistake. Have you ever looked back on your life and picked out one single event in time that started a chain reaction that could not be stopped? This moment in time was one that I have torn to shreds repeatedly over the past four years since it happened. Just one bad choice changed our lives forever and completely flipped us upside-down. We as a family still have not fully recovered from what happened to us. On that day Ryan and I decided to leave our children and drive the thirteen miles back to our now flooded house and pick up a few things that we needed. We spent just fifteen minutes in our house. We both took pictures of all the damage and walked around our house getting a few things that we needed. After that we headed back to the hotel for a night of fun in the pool. For more on the tornado read Life Support and When Two Hearts Beat As One on my blog.
My airway sealed closed for the first time in my life at four am the next morning. What started out as a pretty basic asthma attack quickly turned into days on a ventilator and feeding tube. I still have very little memory of exactly what happened to me because I was placed in a drug induced coma and was given a medication to paralyze me from head to toe. It was later explained to me that this was done to allow my body time to heal. The only explanation we were ever given at the time was that I may have had an allergic reaction, possibly to mold, from going into our house after the tornado that caused my airway to suffer anaphylactic reaction. After I was finally released from the hospital I was given nurses and physical therapists to come to my house to assist in my twenty-four hour care, only to end up in an ambulance to a different hospital just a couple of days later when my airway closed again. This time the epinephrine given worked and my airway opened again only requiring me to stay in intensive care for a couple of days. All five of us were staying in the two bedroom apartment over our garage which was the only part of our house not affected by the tornado. Life quickly became nothing but bed rest, nursing care and forty-two different medications to keep me alive. We completely stopped living and our lives felt over. I was dying with no explanation as to why. Six months went by, and by the grace of God I had survived. We went back to a normal life as best as we could and six more months went by. I tried my best not to think about how awful that first six months had been. All I knew was that I never wanted to experience it ever again and then the nightmare began once again.
We thought 2011 was one of the worst years of our lives, but we were wrong because 2012 was far worse! Ryan’s younger brother, Brad was murdered on April 23, 2012. I was holding my grandmother’s hand when she took her final breath the day before Mother’s Day. My ex husband’s body was found in the Flint River on Father’s Day which was June 17, 2012. My son was so angry the day he found out his biological father, Jason, was now gone in an accidental drowning. My son was seventeen at the time and had not seen Jason in fifteen years. Ryan adopted my son when he was three and we wanted him to wait until he was eighteen to meet Jason again on his own. Life was pretty awful at our house in the couple of weeks after Jason died. Our son wanted nothing to do with me at all and did not even want to speak to me half the time. He blamed me that Jason had died before he ever had a chance to meet him as an adult. Ryan was his only source of comfort at that time so I let our son heal whichever way he chose. We still had a crazy summer ahead of us and school sports were once again getting ready to start. Once again, one wrong move would send our lives even further off track.
I drove my youngest daughter to her local high school to make her cheer payment just a couple of weeks after Jason died. Her coach was running late so I went inside the school. The janitors were stripping wax off the cafeteria floors with a chemical floor stripper. I spent about fifteen minutes waiting for the coach and started having a little trouble breathing. I decided to hurry home and take a breathing treatment. By the time I made it home it was too late, once again. My airway was closing and I could feel it happening. The paramedics gave me epinephrine and rushed me to the local trauma center. This time the medications bought me a little time. My pulmonologist just so happened to be on call that day, and already at the hospital. He actually beat the anesthesiologist to my room when I arrived and he quickly intubated me himself just as my airway closed, like concrete, around the breathing tubes. This was how I finally received an actual diagnosis as to why my airway keep closing. My pulmonologist would later explain that he witnessed my vocal cords swell and he stated that this is exactly what had been happening all along.
My official diagnoses, after thirteen months of waiting, was Vocal Cord Dysfunction (VCD) and Vocal Cord Paralysis. In short, my vocal cords swell when irritated by anything I breathe that I am allergic to.
This single diagnosis of VCD would be far worse than any other diagnosis I would ever receive in my lifetime. Through trial and error Ryan and I finally came up with an actual list of what I was allergic to. That list includes, but is not limited to, Bleach, Ammonia, Lysol, most chemical based cleaning agents, any and all aerosol products, and most perfume or cologne products. I am also severely sensitive to a combination of heat and humidity in the air. Ryan researched everything repeatedly and has constantly come up with ways to improve my quality of life. Ryan single-handedly became my advocate for all my chronic illnesses over the years. All our cleaning supplies from our house were given away to people who could still use them. We bought Borax powder and vinegar that we mixed to clean everything from laundry to bathrooms and kitchen counters. Unfortunately I hated Borax because the coarse powder was harsh on the skin.
As time went on Ryan would obsessively check the local weather reports just to see if we could escape my safe zone to go outside. We ran the air conditioner even when it was cooler outside, because it kept the humidity low as well as my core body temperature. I was so hypersensitive to anything I would breathe in that I thought my quality of life was over. I became severely depressed and all I wanted to do was sleep. At times it felt like I was even allergic to oxygen. Something had to change and soon! Within six months of being removed from life support for the second time I decided it was time to break free from every single restriction any doctor had ever given me and I returned to work full-time in the medical field. I even fully gave up my Social Security Disability and fought to have a normal life again, but as with everything in my life, nothing stayed normal for long!