Returning from San Diego, where the Transplant Games of America was held this year, I encountered a level of inclusion that I had been missing. After years of feeling like I could not relate to those I've been surrounded by, I finally felt I belonged somewhere. This was my first time attending, and although I did not participate in the games, the experience provided healing on a level I did not expect. I heard stories that resonated with mine. I heard families of deceased donors who have lost loved ones help many through their organ donation. I heard living donors wish that they could donate more of their organs. My tears were waterfalls through every story I encountered, but I was told that was expected. These were some of the most powerful stories of grief and generosity ever told, regardless of the years when their pain started. These are stories of inspirational lives and what can happen when those hanging by a thread are given another chance at life.
It has been four years since I had my transplant. It's been four years since my dad graciously donated his kidney to me. It's been four years that I've been living this new life.
"The nephrologist said I should register for kidney donation and be on the list." I blurt out this through tears and snot when my mom picks up on the other line. Entirely in denial, but swollen and carrying 20 pounds of extra water weight my body retains, it is now mostly in my legs and feet this time of day. The water retention has collaborated with gravity and traveled from my face to my feet since I've been vertical all day at the office. I'm swollen from steroid injections and slowly walking down 5th avenue as if both legs are in casts because I can barely bend my knees. No one notices or stares; this is when I am thankful to be a ghost in a city of millions. I do not know, but my mom takes action by sending out a message to friends and family. And while I crawl into the shadows and hide from view, she becomes my most prominent advocate. Her knowledge in the medical field unknowingly develops my knowledge of it and now becomes an integral part of my life for the rest of my life. Family from immediate to extended get their blood tested for matching, and many undergo rigorous medical testing for their safety and mine. Each member going through testing leaves Weill Cornell feeling fully supported, knowledgeable and safe within the donor care team.
First day and arriving early at the dialysis center, I'd rather be home or getting treatment at the hospital. The sweet older gentleman sitting next to me in the waiting room pulls up his sleeve, revealing his fistula, and says his 'first surgery was awful, but the second one was successful' I nod understandingly but distance myself from taking his story in. Despite what every dialysis staff has told me, I do not want a fistula. Still, I am thankful he has offered me the surgeon's information from his second surgery if I need it. I get weighed on a scale as others line up behind me. This white-enclosed interior could have been a psychiatric ward if not for the casters on the aqua vinyl 80s-style recliners that snake around like airport seating. I am brought over to the middle of this room, and I wonder if it is intentional so that I don't feel outcasted, but it does not help. I am a lab rat trying to avert my eyes, so I don't make contact with the residents of the recliners behind, next to, and directly in front of me, that look just as sick and helplessly hopeful as I do. The aversion doesn't help as my eyes well up with tears. Luckily, the two attendants connecting me to the machine that now keeps me alive notice the river flowing out of my eyes and run to get mobile privacy curtains. Five hours later, I walk home from the center with a migraine that makes my eyes squint and the dread that I'll be back there again in two days. Several months later, with Dad tested twice, he received the call that he had passed his evaluation, and we set a date for surgery.
It's the AM rush hour on the six trains, and I'm with mom and dad heading to Weill Cornell for surgery. I am surprised to see a classmate from grade school I haven't seen in years across the tracks, but I look away. I am in no mood to reconnect even though I am excited as if it were the last day of classes and summer is in reach. Both dad and I are brought to our separate rooms for preparation after we sign in. The next several steps and medical staff visits include the experts I have met leading up to this day as part of my transplant recipient team, and this continuous, compassionate care brings me comfort. I think to myself, and this is what being a VIP must feel like. Then, I fall into a dreamless sleep. Then, finally, on the table in the OR room with the anesthesia kicking in.
It's the day after surgery, and my energy is back. There is pain at the site from surgery, but my scar is beautiful, and I already feel physically and mentally stronger and healthier. The first meal I crave is a parfait, and I am not a huge yogurt fanatic. I wonder if it's because it's "the kidney talking," as we now joke when there are things my dad does or says that I currently do. The weeks after surgery are some of my most memorable times. I watch one of the busiest cities across the Hudson rush around as I sip my cold brew and snack on the lunch mom and I packed. I am an observer with one job. Heal. The rush of traffic and sirens of lower Manhattan in the distance sound like soothing white noise, and the sun glistens on the water, it is peaceful, and I am hopeful.
It is a sunny, comfortable day in May. One year after the transplant, my "therapy" pup Biscuit, mom, dad, and I are at the panoramic summit of Giant Mountain, an Adirondack high peak. We celebrated a renewed life with this one peak in mind. Invigorated by the view, the burning in our legs, and the blisters on our feet, we unanimously say, "why stop here?" Since then, we've climbed a total of 19 peaks and counting, and I've discovered that hiking a peak is very closely linked to life with a chronic condition. There are a variety of ups, downs, and unexpected slaps in the face, but every step you make along the way counts. The steps' size does not matter, only that you take them.
Thank you to the NYP/Weill Cornell team for your continuous care, compassion, collaboration, and drive to advance kidney care.
- Dana Satterlee, 2018 kidney transplant recipient
