Updated: Sep 13
The Introduction That Is Keeping Me Alive
Let me give you a little back story on how Lorna and I met. I can tell you it was not a relationship of desire. I have been aware of my heart condition since I was 35 years old right after the birth of my youngest and surprisingly most challenging son, Darwyn.
After the excitement of childbirth, or the agony, I was in love with the thought of having my baby home and introducing him to his older brother and sister. During the first few months, I found myself to be slightly more tired than normal. After giving birth three times and being a little older than previously, I shrugged it all off. However, the symptoms never subsided.
After further discussion with my doctors and a battery of evaluations, I was diagnosed with a rare heart condition. The doctors explained that I would eventually need a heart transplant. WOW! What? What on earth does that mean at the turn of the century the idea of a heart transplant was not as technologically advanced. In that, I assumed I would be dead when they first spoke of the need for a heart transplant. I was given instructions on proper nutrition and how to prolong the inevitable, I proceeded home and to my life as a mother raising three children.
Fast forward 20 years a dozen other diagnosis that I won’t bore you with at this time. Know that those diagnosis include stomach cancer, pacemaker, and a few others I seem to forget at this point. The inevitable that the doctor spoke of some 20 years prior. I needed a heart transplant otherwise I would die.
Arriving on site at Northwestern Hospital in Chicago, Illinois, I was informed of the options I could have to prolong my life while I waited for a heart to become available. Because I often defy the simplistic, the doctors at Northwestern explained that women often build up rare antibodies during pregnancy that impact their ability to accept donor organs. Meaning, my body could very well reject a new heart if one became available.
GREAT! Yet another obstacle. The doctors performed a special surgery and implanted a unit known as an Impella. This device allows your heart to continuing functioning properly while maintaining a high priority level on the heart transplant list. After the procedure, I simply took up residence at Northwestern’s Cardiac Care Facility and waited for my body to become strong enough to handle a transplant surgery while a heart becomes available.
It sounds so cruel. I literally must wait for someone to die in hopes that I have a chance to live. How emotionally and mentally insane is that? The fun hasn’t ended. During a routine process of cleaning and prepping the Impella equipment, it stopped working. It sent my life into another whirlwind. I was rushed to the emergency room once again at Northwestern. Because of the failure of the Impella, I could no longer use this life saving device. I was forced accept the Left Ventricle Assist Device or LVAD. In theory, both
devices perform the same function. However, The LVAD is much more of an aggressive piece of equipment and is a long-term answer to the patient with a failing heart. On average, people with a LVAD survive anywhere between one to five years. Many patients have lived with the LVAD past a decade. GREAT! The problem…the LVAD installation moved me further down the list for a heart transplant.
This began my year 2020. Many people believe that the onset of the Coronavirus and the quarantined life due to the Pandemic began the tragedy known as 2020. Mine started in January. Over the last eight months, I have spent 75% of the year either at a local hospital here in my small town, at the Mayo Clinic in Rochester, MN or at Northwestern Hospital in downtown Chicago. Although I had some of the best views of Chicago’s Navy Pier, I had no desire to be anywhere other than home with my fur babies, living a so-called normal life. It was an emotional tragedy. I had and still have no desire to maintain a lifelong relationship with the device that was basically keeping my heart pumping. Without it, I would surely die.
Ignore the LVAD, I thought. Pretend it’s not there. The additional 10 pounds I had to carry around via a specially designed vest suited specifically for me made the LVAD hard to ignore. I wanted normalcy. The idea of simply driving to Costco for a walk through the never-ending aisles seemed daunting. The husband of some 17 years refused to let me out of his sight. How annoying yet lovingly committed.
Then it happened. In the warm, early morning hours, the alarm sounded on the LVAD. OH MY GOSH! Is this it? Am I dying? I felt extremely dizzy, very lightheaded. What’s happening? The husband called 911 and I was whisked off to the local hospital in Rockford, Illinois. From there, I was placed in an ambulance in route to Northwestern. What would become of me? Maybe there would be a heart waiting for me upon my arrival in the Emergency Room driveway.
Nope! My blood pressure had dropped dramatically. I was severely dehydrated. After a dozen tests, and several days in the hospital, it was determined that the right side of my heart was not in rhythm with the left side. The doctors performed a procedure to shock the right side of my heart and place the heart back in the same systematic sequence. Success! After a few additional days in the hospital I was home again. Me and the Left Ventricle Assist Device. I accepted this unannounced vehicle as part of my life. I would assume the LVAD had no more desire to be with me than
I wanted it in my life. This was agonizing. My life as a woman over 50 looked nothing like the stories on social media. There was no magical exercise program or diet that could transform my current situation to a more palatable lifestyle.
In my quietness, I often considered options that would be easier. Life without me. My husband wouldn’t be burdened with the need to care for me, work full-time, and attempt to sort through the ever-growing mound of medical debt. I had reached a low. A low and a loneliness I had never known before. Then this happened……
My son and daughter-in-law gave us the awesome news. I would soon be a grandmother. Just like that…there it was… a real reason to live. Although there were likely many more, as I would come to recognize through a few comforting sessions with a local therapist, this was the news that gave me new life…new meaning. I wouldn’t allow these life-altering medical conditions take me away from my family. MY LIFE!
Girl!!!!! You and I are in this together for the long haul. I don’t like you anymore that you do me, but we are stuck, literally stuck with each other. Let’s do this! This “Life for Desire” thing you and me. Let’s do this together. I think I shall call you “Lorna” …Lorna LVAD. Welcome to my life!