It has been 3 years since Randy, my husband, received the last minute gift of a double lung transplant. Randy had been on life support for almost 2 weeks, and time was running out. His lungs had failed, but no one really knew why (after the transplant at UT Southwestern Transplant Center it was determined that Randy had Idiopathic Pulmonary Fibrosis). The past 3 years, post transplant, have been full. Full of fear, sorrow, hope, joy, and relief. I think we have run the gamut of emotion, and it has been a true roller coaster. My daughter, Alexandra, sent this to me the other day, and it brought tears to both myself and Randy. Our family of four has been very close, and the emotional devastation my children felt was heartbreaking for me to witness. Her memories remind us all that miracles DO happen.
By Alexandra Minton
My dad loves the sun. He always has and that’s a memory I have of him while I was growing up. He enjoys spending time outdoors sunbathing, scuba diving, and feeling the warmth of the sun on his skin. In August 2013, my dad was in the ICU at St. Paul’s at University of Texas Southwestern University Hospital. It was August and September in Texas as this occurred and there’s no lack of sun that time of year. I felt horribly hopeless and guilty as I walked out each time I visited and felt the sun on my skin, something my Dad loves feeling. I wondered if he’d ever be able to leave the hospital and feel the warmth of the sun on his skin again. That thought was simply terrifying to me and nearly too much to bear and I cried, sometimes uncontrollably, as I left the hospital.
My memory of this period of time is somewhat hazy but as time passes, I can look back and see things a little more clearly than before. At the time, I lived in a daze. I felt trapped and could only move one foot in front of the other, one day at a time. Dealing with illness was not something new to me. My father had back surgery when I was a toddler, my grandfather battled pancreatic cancer, my mother had reconstructive spinal surgery while I was in middle school, my grandmother slowly passed with a brain tumor, my other grandmother died of emphysema 6 weeks before my dad went into the hospital. Dealing with illness, listening to medical decisions being made and attending funerals of those I loved was a part of life that I accepted. But my father’s illness hit me hard, as it hit our entire family hard. He was perfectly healthy until one day, when he wasn’t. One day he had to be rushed to the hospital and a few days later we found ourselves listening to the doctor at UT Southwestern say that my dad had a disease called Idiopathic Pulmonary Fibrosis and the only way to save his life was a lung transplant. Hearing that was absolutely devastating and cause for hope at the same time. My dad could have a chance if he received a double lung transplant but if he didn’t have that chance, I would watch my father die.
Something remarkable about being in a situation like this is that you end up learning about yourself, your capabilities and your strength. I quickly figured out what my initial reaction to hearing upsetting news is. I become wildly hysterical and cry uncontrollably. I tried fighting it but eventually gave in and let the process flow. It doesn’t last long and then I move on to calming down and looking at the big picture and what it means. I learned that I had the strength and capability to put others before myself. I tried to stay strong for my mom even though she was our rock throughout this time and is arguably the strongest member of our family. I put on a good face in front of my dad so I wouldn’t cause him to get upset. I can’t even imagine what he was dealing with and what he had to process as he received this news. He carried on as his usual humor and sarcastic-filled self while dealing with a grim prognosis. I will always remember that, appreciate it and look up to my father for his behavior during that time.
After he was approved for a lung transplant and was number 1 on the list, all we could do was wait. The days seemed excruciatingly long and unbelievably short at the same time. Day time was spent at work and at the hosptial. Friends and family flew in from all over, stopped by, and brought snacks. I kept my closest friends up to date and they each checked in on me on a regular basis. It was so helpful for me to process what was happening by telling them what was happening. A few days went by with no news on organs and then suddenly my dad crashed and had to be taken into emergency surgery to undergo a procedure that would put him on ECMO, extracorporeal membrane oxygenation. ECMO provides cardiac and respiratory support to people whose heart and lungs are unable to provide an adequate amount of oxygen to sustain life. From this point on, he would remain in a drug induced coma. There would be no more conversing with him, hearing his voice, laughing with him.
At that point, I was working as a re-toucher in the art department of an auction house and was able to spend the first half of the day at my office and the second half of the day working from the hospital. I sat on the floor in the waiting room with my laptop on a coffee table, next to my mom, who was always there. I would periodically go in to talk to him. Sometimes I would go in and play a couple of songs we both liked. One of the last days before he was transplanted, I played him Daughters by John Mayer. It has always been a special song for us and we planned to dance to it at my wedding one day. In case we never got the opportunity, I wanted to listen to it with him one more time. I sobbed quietly for 4 minutes.
His 57th birthday came. I decorated the outside of his glass door in the ICU. My family and I joked that would hate the pageantry and the tacky decor. It was hard to see this man who raised me, loved me unconditionally and who was always there for me, my daddy whom I admired, struggling to live. The tubes and cords keeping him alive were too many to count. Machinery was doing his breathing and as each day went by with no word on lungs, I struggled more and more. Every day I would wake up, I would tell myself, today is the day he will get new lungs.
I don’t know why I didn’t consider the most obvious realization of the situation before this point. I spent time researching lung transplants, survival rates, what to expect, changes that needed to be made. I asked his nurses, who were there in his room 24/7, questions about the equipment keeping him alive, their experiences with transplants and organ transplants in general. One morning after praying for lungs, the realization hit me that the lungs my father would receive would be from someone else, someone who had passed away and whose family would be feeling even worse than I did at this moment. When the most obvious part of this whole situation finally hit me, I felt horribly guilty and selfish and was horrified to look on what my hopes meant for someone else. I collapsed on the floor of my new apartment, curled into a ball and cried. I would not wish this pain on anyone.
Today, 3 years later, my father just received an A+ at his annual check up. We are so incredibly blessed and lucky to have him in our lives. He just turned 60. Last year, he and I danced to Daughters at my wedding.
I am forever grateful to the donor, the donor’s family, my friends and family who were there for myself and my family throughout and to the staff at UT Southwestern, who were knowledgable, trustworthy and performed to the best of their abilities at all times. Thank you.
Please be an organ donor! And for more information on Pulmonary Fibrosis, take a look at PF Warriors of North Texas.