My name is Mary and I am a two-time kidney transplant recipient that was born with renal agenesis. I am now 30 with "confessions" to share. I hope they inspire you about life and inform you about organ donation/transplantationto register as an organ donor. If you are not a registered organ donor, scroll to the bottom to enroll!
My goal is to publish this as a book. If you know anyone in publishing or have anything to ask or share, my email is firstname.lastname@example.org.
Thank you for reading!
Chapter Thirty-One: Revelations
Life returned to routine after my Father’s near death’s door encounter. I went to work. I met up with my friends and spent time with my family on the weekends. I was still the dutiful and proactive patient by going to my doctor appointments and having my bloodwork done. I continued on with my advocacy work with speaking engagements, written and published articles, and making connections with as many transplant candidates, recipients, and organizations that I possibly could. Life was “normal.”
Yet, in spite of the normalcy, the way I saw my family and was with my family had changed. My family and especially my Father were more important than ever to me. My family had spent their life dealing with my health just as much as I had. Now that I was healthy and stronger than ever due to the success of my second kidney transplant, I unconsciously fell into a responsible role to be there and care for my family and particularly my Father. I eagerly scheduled doctor appointments and radiology scans for him. I battled with health insurance companies for him. I made it a point to understand my Father’s coronary artery disease diagnosis and kept up with trying to understand his medications. It was an honor to care and be responsible for my family and take all the life experiences I had gained to help my family and to give to the bigger picture of my purpose to share my story and so many other transplant stories as a way to increase the absolutely dismal rate of registered organ donors in New York. I welcomed and loved the normalcy of everyday life along with the twists of newness that I was an adult and coming into who I really was.
Then, an unexpected and exciting curveball in life was thrown my way on Thursday, April 28, 2011.
At 5:10PM on April 28th, I was counting down to another 50 more minutes of my work day when a personal email preview message popped up on my screen with the subject that read: “Remember Me? From Einstein?”
How can you remember me? You were only 3 years old!!
I thought I wrote in your blog but now I don't see my message. I tried to surprise you at the hospital that you work at, but I couldn't find you there!!
So....What happened?? I'll fill you in. I was dropping off a patient at the hospital I work at when a nurse that I know for a long time told me that she saw a picture of me when I was younger and worked with transplant patients. She was at a pediatric transplant conference and saw a powerpoint with a picture of me. She brought it back to the hospital and asked other nurses that knew me if they thought the picture was me. They all agreed but no one could find the picture to show it to me. I did some research and your powerpoint presentation was sent to me. Yep, the woman in the plaid shirt on the third slide is me!!! The nurse who saw me couldn't remember your name so I had no clue until I saw the presentation!!
I was so excited I went on your website right away! I do remember you!! It's not such a small worldnow, is it? Perhaps we could meet? I'd love to see you!
With fond memories,
I read and re-read the email message again and again, blinking my eyes and making sure that my eyes were not deceiving me. Could this be for real? A nurse that had taken care of me from over 20 years ago here who was contacting me out of the blue just from that pediatric transplant conference that I had spoken at? I was numb with shock and disbelief. Not even an hour later, I immediately replied back to her. I impatiently waited for her response, hoping that she would reply back that evening and we could and would actually set up a date to meet.
Days and weeks went by without a response. My inflated excitement deflated that I had dreamed up that email, and Josie and I would never meet. It was finally in June that I received a response from Josie that she was so sorry for the delay with getting back to me and that she definitely wanted to meet me.
On the day Josie and I decided to meet at Starbucks, I arrived overly early and was jittery with euphoric joy and my eyes scanning almost obsessively outdoors at all the cars that came zipping into the parking lot. Biting my lip and my sweaty palms gripped nervously of the childhood photo of this nurse Josie, me, and another nameless nurse, I wondered if I would recognize Josie when she finally walked in.
The picture I presented at my October 2010 Pediatric Transplant Conference speaking engagement
that was the catalyst to me reuniting with my pediatric nurses over 20 years later
There was no doubt in my mind as to who Josie was when this tall woman with a grinning and beaming face came running into the Starbucks, grabbed me, and stopped my breathing with a tight and enveloped squeeze. Her hands cupped my face and she squealed: “Just look at you, Mary Wu!! Oh, my God….you look absolutely amazing!!! I just can’t believe this!!”
She pulled me towards her again in a huge hug again. I inhaled her sweet perfume and scented shampoo while trying hard to conjure up memories of when I was 3-years-old at the start of my healthy journey and with her. But, I could not remember anything. Not one single thing.
“Let me look at you!” Josie exclaimed again.
We sat down. We just stared at one another. My chest was constricted and a cold chill of thrill tightened in me as I tried to match her present-day appearance with that photo and our mysterious time together from over 20 years ago.
One of my pediatric nurses and I together again over 20 years later
I was speechless. I could not believe that I was with a lady that had known me over 20 years ago and at the very beginning of my health journey. Josie did not look that different from her photo at all by face—the same warmth in the photo matched what I saw in front of me. It was only her hair that was now straight and shoulder-length that encircled her open and happy face. She wore a pink blouse, Capri pants, and her metallic and rectangular glasses glinted in the light.
“Do you remember anything about me, Mary?” She eventually asked after we caught up on our present day lives.
I paused, feeling bad that I barely remembered anything from before and post-first kidney transplant. She could tell how bad I felt about not remembering, so she immediately said: “Of course you don’t remember anything! You were so young, and it was such a horrible time.”
I asked slowly, “What do you remember about me? What do you remember about my parents?”
“Well, I was a nurse manager in that photo that was taken of you and me, and the other nurse that I unfortunately do not remember the name of. I don’t remember your parents too well. Just that your Mother was always with you. Your parents could not have been too crazy, otherwise I would have remembered them. Oh, and you had these little hands that always gripped on to the bars of the crib with a big smile. You were probably trying to get out of that crib with everything that had happened, but you were always so happy and smiling.” Josie paused for a breath and then said, “Well, I guess you can’t be too different from when you were a child, because you are still smiling. I don’t think people’s core demeanor changes very much.”
I did not know what to say. Josie continued: “I’m still in touch with lots of the nurses that took care of you. I will connect you to all of them. Hmm…I think one of the nurses is **Daniela. She was the one that took care of you immediately after your first kidney transplant. She won’t believe it when I tell her that we met, and especially how we met!”
I confessed, “I don’t remember anything about that time. I don’t even know anything about that time.”
“Have you tried to talk to your parents about it? Or maybe get your medical records?” Josie asked.
“I don’t think my Father really likes to talk about that time. My Mom left when I was 8-years-old, and I barely have contact with her now.”
Josie frowned and said, “I’m really sorry about your mother, honey. You just have to know it was not your fault. When anyone you love is sick, but especially a child is sick, it affects and changes people…especially the parents. As for your Father, it is natural that he does not want to talk about that time. It was an awful time for all the parents. There were so many children that died and did not make it. Transplantation back then in the 1980’s is just not how it is now. You should get your medical records. I bet they would reveal a lot about that time to you.”
“Do you think I could actually get those medical records? It was over 20 years ago,” I said.
“Hey, look at you and me meeting over 20 years later. I’m sure the medical records are not completely destroyed yet and they are kept in a warehouse. Now, you know that you received your first kidney transplant from Albert Einstein College of Medicine, so all you have to do is call up the medical records department there to get them. In the meantime, don’t give up, and I will connect you with all the other nurses.”
Josie continued to talk. I hung on to her every word, craving for any memories at all of her or that time when I received my first kidney transplant, but my mind was blank. The only vague memories that continued to flash like faded photos in my mind were getting intravenous needles and crying hysterically, a doctor standing above me as he was cutting stitches, a room with toys and “The Sound of Music” movie playing in the background, and me singing “Jingle Bells” in the sterile hospital hallways. Those were honestly the only memories I had of that time. It was as though someone had taken those specific time memories of pre and post first kidney transplant and magically made them disappear. My reunion with Josie made me want desperately to know more about that time, and to make my memories appear. A chill went up my spine and the goose bumps appeared all over me, with a new set determination I had: I wanted to remember and know about that time of my chronic kidney failure diagnosis and what happened thereafter my first kidney transplant no matter how painful and horrible that time was said to be. The seed was planted in my head to hunt for my medical records from Albert Einstein College of Medicine by the end of my meeting with Josie and after we exchanged more hugs and photos were taken of us all emotional, teary, and stunned.
I began the hunt of my childhood medical records immediately after meeting Josie. I tracked down the medical records department of Albert Einstein College of Medicine, wrote a heartfelt and in-depth letter that was notarized to try to track down the medical documents from over 20 years ago for my own personal reasons, and continued to follow-up and try to have the records delivered to me. In the midst of the hunt, Josie kept her word with emailing me a list of all the nurses that had known me and taken care of me at one point or another. I found almost all the nurses on Facebook, and emailed each one I located with intense curiosity about that time of my first kidney transplant and what each nurse remembered about my family, my health, and me. None of the nurses that I reunited with again through Facebook said anything specific about me, but each nurse replied back with enthusiasm and showering praises of: “You were always smiling!” or “You were so cute and so brave!” As flattering as all these responses were, I imagined that all the nurses felt this way about their pediatric patients that suffered under the wrath of unfair and unforeseen health circumstances. Therefore, I continued to keep in close contact with Josie. She was my one major link to really knowing what happened in my childhood during that time. I kept her updated with my medical record search. At first, she replied with enthusiasm, but as the weeks went by, she eventually questioned: “Honey, what are you trying to find out? Can’t you talk to your Father about this?”
I had only mentioned in passing to my Father that I was trying to find out and learn about the start of my health journey through locating my medical records for years ago and he just said: “Okay, but sometimes it is best to leave well enough along and just move on in your life. Why revisit the past that is over and done with?”
I explained as calmly as I could, “Because I want to know. Because that time obviously made me who I am today and what will happen next in my life.”
I was only briefly distracted from my medical records search when I received another email message in July from this nurse named Daniela who was apparently the infamous nurse that had taken care of me in the immediate days that followed after my first kidney transplant. Her initial email was laced with infectious enthusiasm and disbelief to reunite with me after over twenty years later just from one presentation and the one right audience member nurse who happened to be there at the right time to then tell Josie about me and now Josie connecting me with all my other childhood nurses. Daniela said that she wanted to meet with me as soon as possible. We agreed on a restaurant to meet at, and I wistfully could not help but end my email reply to her as the wait for my medical records was finally getting to me: “Daniela, what do you remember about me? What do you remember about that time? Do you remember anything about my parents?”
I had no idea why I had suddenly become so infatuated with my unknown and unremembered childhood health problems through connecting with these nurses and trying to obtain my medical records. Everything in my life was going so smooth and swimmingly, so why try to dig up the past that was over and done with? Part of it was indefinitely curiosity, but I was certain that the majority was that I could not truly know who I had become and all that I could do for and with my future without knowing what had happened in my past and as a little girl. The truth was that I never really knew what had happened to lead me medically requiring a kidney transplant in the first place when I was a little girl. I never really knew when my health challenges started. I never really knew what had truly happened until after my first kidney transplant. When I tried to remember, my mind went blank. There was a void that had to be filled. Other people remembered and knew more about my past medical history than I did, and that had to stop. I had to know.
Daniela quickly responded back with:
I have such wonderful memories of you as a child. You were this beautiful china doll with chubby cheeks that I just LOVED TO squeeze. You were ALWAYS SMILING and such a great patient even when we knew you weren’t feeling well. You were a very popular little girl on 7S so I was one of your primary nurses, BUT , you had many nurses names written in your chart, so you had multiple primary nurses. I loved taking care of the renal transplant patients, it was so exciting for me to finally see urine in the foley catheter bag that I would just start clapping and cheer it on!
After a renal transplant we would just take care of that one patient for 3 days so I was always in your room, just you and me, we got to know you very well, you were my one and only patient for 3 days, what fun! I really miss 7South, it was the best unit I have ever worked on. It was patients like you that made my job so rewarding and one of the best times of my life. I read what you wrote in your blog, of how you got attached to your patients when you were working in the nursing home, that reminded me of myself on 7S, I got attached to each and everyone of you.
You became my heroes. You never complained and bounced right back no matter what happened .
I agree with **Josie, you were too young to remember all of us, but I can honestly say it was an absolute honor and delight to be part of your journey to good health
I am so happy to see what a wonderful young woman you have become
Continue your great work, stay healthy, and lots of HUGS!!
I shut my eyes, trying hard to remember Daniela. Nothing. I did not even know what she looked like now, or even then. Why couldn’t I remember? Did I have some kind of memory blockage because that time was too painful for my family and me? There were no answers to these questions. All I knew was that I somehow felt so close to Josie and now Daniela even after all these years and without a morsel of a memory of either of them. I painstakingly waited until I met Daniela and continued my search for my childhood medical records with following-up on a weekly basis.
On the day that Daniela and I finally met in her neck of suburbia woods at a small diner with the usual booths and jukeboxes, the skies were gray and the raindrops fell methodically and steadily to the pavement, making the ground glossy and full of puddles. I had taken a wrong turn and was running late. When I finally arrived, I clumsily dug out my umbrella from the backseat of the car. Pitter-pattering to the entrance of the diner, I saw an image of a small and petite woman with chin-length and tousled brown hair from the rain that then looked at me. Piercing and bright blue eyes met my eyes. She said softly: “Mary?”
I nodded. Rather than shriek and squeal like Josie did, Daniela just reached over to me wordless and wrapped me up in a warm and motherly embrace. She then burst into an excited and giddy burst of joy and kept saying over and over: “I just can’t believe this! I just can’t believe this! Look at you! Look at you, Mary Wu!!!”
She ushered me into the restaurant and we chose a cozy and small booth in the corner to pour over menus. There was so much to say that we kept inadvertently interrupting one another.
“Mary, I don’t think you know how much it means to all of us nurses to see you and just any of our patients completely healthy and transformed from a time that was so physically painful and emotionally and mentally stressful. That time was so painful for your entire family, and to see you here so healthy and all that you are doing in the transplant community…it is just a miracle and makes our jobs completely worth everything. I am so proud of you, all that you doing, and all that you will continue to do.”
“That is incredibly sweet,” I said, “I just wish I remembered. It frustrates me that people remember my life, and I can’t recall anything from that time.”
“It was a bad time,” Daniela said gently, “All that matters is now.”
“I know, but I am just also curious about that time, and what really happened. I never really thought about it until now and after meeting with you and Josie after all these years have passed. Now, I think about what really happened when I was a little girl all the time when I am at a transplant event, writing an article, or whatever else I am doing that is related to my transplant advocacy work. I want to know what really happened so when I do speak or write…it is because I really know it and not based on what others told me. That time is a huge and blank mystery to me, and finding you and Josie who were clearly there at the start of my health journey has me wanting more than ever to know.”
Daniela said softly, “I can understand that, sweetie. But, don’t force it. If you are meant to know what happened, then it will happen—just like it was meant for you to meet with Josie and me again.”
Here is a shot of the pediatric nurse that took care of me three days immediately after my first kidney transplant.
Reunited over 20 years later.
Her warm smile soothed me. Her kind eyes calmed me. Right then and there, I almost imagined how Daniela was with me when I was a little girl that just received my first kidney transplant. I could see how caring, loving, and genuinely in love she was with her job and patients. I could see how lucky I was to meet these two beautiful, strong, and remarkable women again who had been there for my family and me at the start and now at the pinnacle of my health journey. My life had worked out in the most bewildering and astounding of ways of so much joy and meeting so many incredible people from so much heartache, suffering, uncertainty, and pain from my childhood. Meeting again with Josie and Daniela and finding so many other nurses that cared for me on Facebook from when my health journey began made me believe that there were certain people meant to come and even stay in our lives and that everything in life happened for a certain reason. Nothing was accidental. Nothing was a coincidence. Everything and everyone was meant to be. So, I believed Daniela when she said that if I was meant to find out about what truly happened with my health when I was a little girl, then it would certainly happen.
And, it did happen.
It was clear that my past had already come back into my life in the most breathtaking way when Josie and Daniela returned, but the truth about my past health and what had actually happened over 20 years ago came sealed in a thick white envelope from Albert Einstein College of Medicine on a random day when I had just returned from work.
With my hands shaking and breath held, I clutched the thick envelope for a few silent moments. I let out my breath, slit open the envelope, and began to haphazardly flip through the medical records that I had hunted for ever since April when I first met Josie. I was not sure what I expected or if I even had expectations. I was not sure what I felt or what was going on. All I knew was I was finally going to find out the truth and fill the missing memory pieces of my medical history to form a clear-cut and finished conclusion.
The thick and crisply xeroxed sheets were held cleanly together by one single staple. The very first page was a summary or demographical sheet in neat and blocked font. I slowly turned the pages and skimmed through each sheet. I realized that the records were only from 1989 to 1990, which was post-first kidney transplant in 1987. The medical documents of pre first kidney transplant and what had led to requiring a kidney transplant were missing. Page after page were paragraphs of hurried scrawled and loopy handwriting and the careful stamped information of my name, date of birth, medical record number, and account number. I was unaccustomed to the variety of handwritings from the numerous nurses and doctors, because of the 21st century that we lived in that now had every document typed meticulously. I squinted and scratched my head, trying to understand each technical and medical written word that was abbreviated with shorthand that I was unfamiliar with.
As I began to read through each page, a short movie of my health journey began to move in slow motion in my mind.The images came to life.I could see myself as a little pig-tailed baby as I was being examined endlessly by nurses and doctors, my parents beside themselves, my sister pouting with confusion as to how come her baby sister was lethargic and weak rather than active and wildly rambunctious. And, after all these years with my medical records as my proof in front of me, I could see that I had been completely wrong about my health. I had always believed or been under the impression that my chronic kidney failure was a sudden onset at age 3 or 4 when a spiked over 103 degree fever sent me to the emergency room, but the documents told the facts that opposed what I had been told after all these years.
The records revealed that my health journey actually originated between 7-10 months when I experienced many high and scalding fevers and urinary tract infections that sent me to the emergency room and hospital. I was born with a defected urinary tract, one atrophic (or shrinking) kidney, and one dysplastic (or deformed) kidney, but it was unknown as to when this was really discovered. I was 2-years-old in early 1985 when I underwent one of the first major surgical procedures out of many that was a urologic reconstructive surgery, and then I was put on peritoneal dialysis in October 1985 (3-years-old at the time) due to complete chronic kidney failure or end stage renal disease. I was on dialysis from then until January 30, 1987 when I received my first kidney transplant from a deceased donor at the Albert Einstein College of Medicine. Most of the medical record documents were about my frequent hospital or emergency room visits from over 100 degree fevers, bladder issues, and urinary tract infections before and even after my first kidney transplant. Because of all the problematic health complications that resulted even after my first kidney transplant, I made the assumed conclusion then and there that my first kidney transplant had succeeded in giving me the gift of my childhood to the best of its extent. But, my first kidney transplant had not saved my life in the long-term.
Reading about all the hospital visits and stays and surgical procedures while trying in vain to understand the extremely complicated medical jargon, my throat and the walls began to close in. I swallowed hard and shuddered with disbelief. An ache spread throughout my body. So, here it was in black and white, stacked, clean, and with one single staple. My past revelation. The truth. I never even knew that I was that sick and in and out of the hospital so many times. The hospital really was my home away from home. It was no wonder why I barely remembered anything about that time when I was a little girl. It was the time of uncertainty, pain, shock, sadness, happiness when I finally received my first kidney transplant, and then the roller coaster ride as to if this first kidney transplant would truly save my life. Yes, of course my family had made every attempt to block out and erase those memories. Of course my Father’s body stiffened and his sad eyes stared at me with emptiness when I questioned him about my medical history. Naturally my sister abruptly changed the subject when I mentioned my health. And, my mother. My estranged relationship with my overly religious and beautiful Mother with her high-pitched voice that raged with Chinese intonations. The medical records revealed that my Mother was the emergency contact, and that she was the one by my side to bring me to the emergency room and then when I was hospitalized. A sharp pang plummeted in my chest, and I struggled to catch my breath. The papers in front of me could not have been more clear that my Mother had loved and cared for me in the best ways that she could during that time of heartache. I thought back to when my Mother had said to me at the Grand Central Train Station when we last met:
“When a child is sick, it affects everyone…”
How in the world did my parents and sister deal with all of this? How did my Mother deal with everything, especially when she was not college-educated and both her and my Father were not born here in the U.S. and when English and most definitely medical language and kidney disease were not their first languages? I could not begin to imagine what my Dad, Mom, and sister went through, and when I tried to, I just physically hurt all over again.
Yet, in spite of all the shock as to how sick I truly was, there were snippets of written words from faceless nurses and doctors that made me smile. The social history documents stated that I was a smiley, happy, chubby, laughing, friendly, talkative, and obese girl after my first kidney transplant. I could not recollect how I was as a little girl through all these health obstacles, but these documented words and what my Dad had told me while I was growing up about how I was a happy and positive survivor and what Josie and Daniela had told me gave me a warm comfort that I hopefully made my family and the healthcare professionals’ lives a little bit easier with my cheerful and grateful disposition whenever a health situation occurred. None of us had choices with what had happened. Life was not fair. No one and no child or family should have gone through what my family and I went through, but there were those choices of how we dealt with what was given to us. If I could give a little bit of joy and just touch people’s lives with my family and my story to act and make a difference in the organ donation and transplant community and larger healthcare industry, then all the pain and all that had happened was worth everything.
Two years of my life in a white envelope. Two years of my life found and captured through copies and through the words and handwritings of doctors and nurses that took care of me and observed my family, my life, my body, and my health. I swallowed hard again and brushed away the wetness that clouded my eyes. Now that the truth was revealed to me, a mixture of immense relief and aching sorrow overwhelmed me. I slipped the thick packet back in its envelope. Yes, the past was over and done with, but it had made me who I was today and would be in the future. I placed the envelope on the shelf, but my resolve to forge forward with my advocacy work was only ignited further. I knew my past and would learn from it. I lived for now. And, I would be the master and creator of my future.
About the same time that I finally discovered the truth about my health, an opportunity was presented to me in a message from my mentor of the TRIO Youth Circle that I was a co-leader of and also the local chapter president of the Transplant Recipients International Organization (TRIO) of Philadelphia, **John:
Mary, I immediately thought of you in regards to the below opportunity as a float rider for the annual Rose Bowl Parade and Donate Life Float. UKRO is expecting a call from you…
UKRO ORIGINAL MESSAGE:
It appears that Natalie Cole is not a viable candidate to be our Rose Parade Float rider this year. As discussed today, do you have any kidney and/or kidney pancreas transplant recipients that you can recommend to UKRO as potential float riders?
Basic requirements area as follow:
• Articulate on their transplant experience.
• Knowledgeable on the cause and treatment of the kidney disease that caused their ESRD
• Be physically able to ride the float for 3 to 4 hours.
• Available to participate in the pre-parade activities that begin December 28, 2011 and end on January 2, 2012.
• Travel support includes airfare, hotel, meals and ground transportation for the float rider and guest.
Let me know ASAP as the dead line to get the background information and biography of the float rider into One Legacy by August 1, 2011.
I read the email over and over again, trying to digest if I was really comprehending it. Was I really being considered for this true chance of a lifetime to be in the annual and nationally broadcasted Rose Bowl Parade as a float rider for the Donate Life Float, and to REPLACE Natalie Cole? Now that I finally knew the truth about what happened in my past with my complicated medical history, I had the most eerie feeling from the email before me about the Rose Bowl Parade that I was about to embark on my greatest feat to date to create my future.
**denotes fake name to protect privacy of individual