Confessions of a Kidney Transplant Recipient

This latest chapter is how the side effects to maintain the kidney function led to arthritis and other joint conditions.

My name is Mary and I am a two-time kidney transplant recipient that was born with renal agenesis. I am now 29 with "confessions" to share. I hope they inspire you about life and inform you about organ donation/transplantation. If you are not a registered organ donor, scroll to the bottom to enroll!

Here is the next chapter of "Confessions of a Kidney Transplant Recipient," which is "Chapter Twenty-Eight: The Suspected Truth." 

On the day my Father and I went to meet my osteopath-to-be, the car windows were streaked with pelts of rain and there was a thick and dense fog misted over. The rhythmic sound of the windshield wipers, the raindrops, and the mechanical hum of the car as the wheels hydroplaned over the slick roads were the only noises. As usual, my Father and I were quietly lost in our own world of thoughts with yet another doctor appointment on the horizon. It was only when we arrived promptly for our 8:00am appointment at the small and red-bricked medical office building that the first burst of light was breaking out.

When my Father killed the engine to the car, there was a brief silence that we had only just begun the newest health chapter in my life. Sneaking a quick glance at my Dad, the familiar tight and drawn facial expression was back. He looked tired and aged, and that old and recognizable guilt and twinge of anger took a stab at me. One would think that we were accustomed to the same old routine and the same old nerves after so many doctor appointments and visits. It was supposed to get easier with the same endurances and over time, so why wasn’t it? Why did it only seem to get harder as I was getting older, or perhaps as we all got older?

My Father and I shook our drenched selves off as best as we could when we opened the glass door. Marching upstairs to her office, I expected the usual routine of either a perky or emotionless secretary greeting me with a clipboard of papers and hand outstretched for my health insurance cards. The doorbell rang when I opened the door. A small and cozy office enveloped me with natural health magazines lined in a haphazard organized way on the coffee table that was in the center of cushioned chairs that formed a wide semicircle around it, boldly colored and vibrant paintings on the walls, and a corner with toys and a kiddy table with chairs. A middle-aged woman with shoulder-length light brown hair and warm brown eyes stood up when my chilled Father and I approached the glassed window of the receptionist area.

My usual cheerful self was temporarily unavailable as it was too early and cold from the rain in the morning, and my immunosuppressant medications had not kicked in yet to waking me up. I muttered unhappily, “I’m here to see **Dr. Gambini.”

The woman smiled and said: “I’m Dr. Gambini. You must be Mary Wu.”

I paused, wondering if I heard her right. She was a doctor that was greeting me by my very own name rather than a receptionist? I was shocked. My Father was clearly just as surprised as me because his eyes moved to her and then to me with confusion. I croaked out: “Yes, I’m Mary Wu.”

All of a sudden, she disappeared around the corner, and then approached me directly with a robust handshake that heated my freezing hand. “I’m so glad to meet you, Mary.”

Wow. She was really a morning person.

Rather than sitting in the waiting area, she said: “Come on with me to my back office. I received your medical records from your orthopedic surgeon and also your paperwork that you filled out in advance.”

There was literally a bounce to her step as she guided us to her office.

I was still in a daze that I did not even have to wait five minutes to see Dr. Gambini. As my mind was slowly waking up and slipping into alert mode, I was convinced that this lack of waiting was because I was the first patient to kick off her day and her receptionist had not arrived yet. Either that or she did not have a large or overwhelming patient load. Unsure of what to make of this doctor visit routine that I was unfamiliar with, I just took a deep breath and followed her.

She sat down and left me nearly speechless again as she reviewed each and every single medical history form that I completed prior to this visit with her, and then when she asked further details and descriptions of every single word or sentence that I wrote or check mark that I penned off on. In my lifespan of doctor encounters thus far, all the doctors had just scratched the surface with awkwardly shuffling through my endless medical documents, and just repeating the numbers and words that I had indicated rather than asking for as much detail as I could remember and regurgitate. I even stumbled and stammered at times when Dr. Gambini asked me for more information. Never had a doctor dove under and around all the medical complications and factoids, but here was Dr. Gambini with diving and digging around in my seemingly endless medical cave of wonders with one question after another.

I never had a doctor show those signs of truly LISTENING with the way she tilted her head, smiled encouragingly, and only looked down to jot notes rather than flip through the papers in questionable confusion over my complex medical history. I reasoned that she craved and needed details to not necessarily solve my problems, but rather find the root of the problem to alleviate the pain rather than opting for any surgical procedure that made me shudder and/or burst into tears. My Father was basically mute, and only chimed in to provide further details if needed and if my memory failed me of a certain tidbit.

Eventually, there was a hush as she skimmed through the results of endless radiology tests and medical summaries and reports. I checked my watch and could not believe that an hour had already gone by. I was accustomed to the maximum fifteen-minute visits with doctors who stared more at papers than me as the person. The sound of raindrops pattered on her windowsill as I observed her office. Her medical degrees glimmered on the wall. Neat piles of documents on her large mahogany desk stood tall. Monstrous-sized medical texts were lined meticulously on her shelves. In spite of an office the screamed medical science and research, there was a unique comfort that drew me in and almost made me smile. Fathom that. Smiling in a doctor’s office and, even more so, at a very first doctor consultation.

Dr. Gambini finally took off her dark-framed glasses. She folded her hands, took a deep breath, and said softly: “Dr. Wu, Mary, I have a different conclusion about your medical condition and how we can proceed to improve it and delay surgery for as long as possible.”

Her eyes moved methodically between my Father and her. She went on to explain: “To begin with, I suspect that you were actually born with a condition called hip dysplasia, which is basically deformity of your left femur head joint of the hip. Your left hip socket is also very narrow. The steroid or immunosuppressant medication, Prednisone, just worsened the hip dysplastic condition over the years. As a result of the congenital hip dysplasia and especially the Prednisone, you now have avascular necrosis, which translated in simple terms is your femur head joint is basically dead from a cut off of blood supply from the Prednisone, and severe osteoarthritis, which is a stiffening of the joints. In addition, you have osteopania of your lower back, which is a mild version of osteoporosis, which is a weakening of the bones.”

Dr. Gambini paused to catch her breath and a grim line was etched on her face. My Father and I gaped at her like two bumps on a log. I was trying to digest what in the world she had just said in a mouthful, but the information was like an overly large and tough sirloin steak that could not be chewed on or even swallowed. Was this for real that I was born with left hip dysplasia along with chronic kidney failure? All this time, I was convinced without a shadow of a doubt that it was just the Prednisone that had negatively impacted my hip and worsened it significantly over the years. All this time, it appeared as though I was wrong with this suspected truth coming to the forefront. The silence was so thick that a sharp butcher knife could not even slice into it.

My Father cleared his throat and courageously spoke first with admitting: “You know, Dr. Gambini, it is now that you mention all this that I vaguely recall that Mary’s doctors had mentioned a deformity with her hip at the time of her birth, but they did not put too much emphasis on this. More than that, anything with a possible condition of her hip was not our focus as Mary began to experience fevers and urinary tract infections since nearly birth and eventually diagnosed with chronic kidney failure.”

I gripped the arms of the chair that I sat in. Wait. My Father knew about this suspected truth? Was this for real? And, this one thought flashed like a neon sign in my head: “Does that mean that my hip condition could have been corrected when I was born and before all my kidney problems came tumbling towards my parents and me like a stampede?” A quick zing of anger zipped through me of what could have and should have been done if only my Dad and Mom had listened to the doctors that I did have some suspected or possible hip condition. If they had listened to the doctors or maybe pressed them further to understand what was going on with my left hip, then maybe I would not have spent my childhood limping, being made fun of, on crutches, eventually wheelchair-bound, and now as I struggled with chronic pain and walking every day of my life. If they had listened, I would not be in this doctor’s office right now trying to gulp down yet another dosage of reality or this supposed suspected truth that we never would have imagined to face years and years later in my life after two kidney transplants. How could my parents not have put a stop to this from the beginning?

I felt the anger seething and boiling in me, but then Dr. Gambini and my Father began to discuss how it was more than understandable that both him and my Mom had not focused on something merely suspected with my hip when all the fevers, urinary tract infections, and eventual chronic kidney failure became my way of living and life. My grip loosened on the arms of the chair with the dawning and ultimate truth that the importance of my non-functional kidneys had weighed out more than any hip problem or anything else for this matter. I could not blame my parents and rewind to “what ifs” and a past that was over and done with as time was only marching forward. And, another truth was that my parents were not born in this country. How could they have really understood, known, and acted? All that had mattered at the time of my birth and the months that quickly followed were that my kidneys not functioning was equivalent to death, but any bone problems were equivalent to a painful, yet still living life. But, what kind of life was it to live in pain? This had been the ongoing and repetitive question that panted heavily, grew, and haunted.

A bad and chopped song on repeat began to play in my head: “So, I was born with this hip dysplasia…so, I was born with this in addition to my chronic failure….so, I was really born with this hip dysplasia and Prednisone that maintained my kidney function from my second kidney transplant worsened my hip? Uhm…so, let me break this down into one sentence: I have chronic kidney failure, congenital left hip dysplasia, left hip avascular necrosis, left hip osteoarthiritis, and lower back osteopenia? What a mouthful. Wow…does life get any better than this??” My coping mechanisms had always been tears or a completely catatonic or depressed state, and now it was as though I was totally losing my mind as this bad and blatantly honest tune in my head played in repeat mode in my head.

Then, I did something that no one and especially myself expected or ever imagined.

I half-smiled. Then, I actually chuckled.

My Dad turned to me when he heard that unexpected guffaw erupt from me. He looked at me quizzically, with his expression asking: “Are you okay?” And, what did I do? I continued to smile and nod like a complete idiot.

I waited for the waterworks of tears to turn on at full blast, but I did not cry. The overboard opera singer was non-existent. The blender of emotions was at pause rather than pulsate. I did not feel as though my whole world was crashing around me. It was not the end of the world. Why wasn’t I reacting as I always had with dramatic anguish and bitterness? Maybe I was so accustomed to bad news. Maybe it could not get any worse. Maybe the string of other diagnoses Dr. Gambini gave me were not the worst there were. Possibly I had cried all there was to cry and now it was time to grin brightly, bear it, and beat it. There were many maybes, but I finally concluded that my years of living life taught me that I could take on anything that was hurled my way. Even or especially this recent news.  In the grand scheme of things and throughout my entire life, this was most definitely not the worst news I had ever received.

Even more indescribably surprising, I felt this surge of energy injected and flowing freely in me that I could and would face up to everything head-on involved with my left hip now that I knew this suspected truth. I suddenly, irrevocably, unexplainably, and scarily felt this renewed and odd sense of enthusiasm that I would be able to tackle all of this with gusto. I poked myself with a sharp reminder that all these new diagnoses were only a suspected truth, but not an inevitable and permanent truth. However, this suspected truth made complete sense to me when I recalled the renowned orthopedic surgeons who had commented on how narrow my left hip socket was and that the hip resurfacing surgery was out of the question and option realm. The half-smile was now crawling its way up my face with an entire smile with this clarity that there comes a point that there is no space for crying, anger, or bitterness anymore, and the only space and room that there was left for me in my life was just taking on everything and anything.

Yes, I thought as I nearly burst out with a giggle. Bring. It. On.

I must have hit a euphoric madness upon Dr. Gambini’s news and it was written clearly on my face because she looked at me with a raised eyebrow and a puzzled face. She had expected me to breakdown. If only she and my Dad knew that I could not breakdown anymore in my life when there were only breakthroughs that remained in my life.

Okay, time to get and be serious. I bit my lip, and asked: “So, what can be done about this?”

Dr. Gambini proceeded to describe the natural, magical, and hands-on osteopathic treatments. Then she explained: “Your left leg appears greatly shorter and uneven in length to your right leg from these x-rays, but we will do a standing x-ray to find the specific measurements in the discrepancies of height with both your legs. All these years, your left leg has tried to compensate for its deficiencies by depending and putting much too weight on your right leg, which is placing an increasing strain on your right leg and causing your left leg to continue to tighten and even break down and shorten in length. I cannot undo all the damage that has been done and osteopathic treatments are certainly not miracle cures to solve your left hip and lower back problems, but we can work on leveling your left leg to right leg with the osteopathic treatments and different-sized and increased lifts inserted in your left shoe to try to even your left leg to your right leg. If we can level out your legs then we can put off surgery for as long as possible as well as try to manage to chronic pain that is affecting you every single day, but I have to tell you that it is more than likely that you will eventually need the surgery.”

Dr. Gambini explained that the lifts were of a latex or rubber material that came in different heights and slipped into my left shoe. She determined that these lifts were key to equaling out my much shorter left leg to my normal right leg by “lifting” the pelvis. However, Dr. Gambini said: “We cannot place an overly high lift in your left shoe now because that would be too much of a shock that your body just won’t be able to tolerate, resulting in even more pain and most likely a very painful muscle spasm. We will start with slow and gentle osteopathic treatments first to loosen up or undo all the tightness that your left leg has suffered and continues to suffer from. Then, once everything is loosened, we will try the lowest lift height at 1mm and then eventually going up to 9mm or even 13mm, depending on the discrepancy in height between your left and right leg. Remember these incremental height lifts and when we or even if we can use them depend on how well and how long it takes for your body to respond to the osteopathic treatments. Honestly, it is going to take a lot of time and patience to reverse all the years of misalignment and tension that your left leg has suffered from, but I am fully confident that the treatments and lifts will do what they need to do so you can manage and live each day without ongoing chronic pain and put off the hip replacement surgery. What do you think?”

It was abundantly obvious that osteopathic treatments were not a cure by any means, but they were a preventative measure for my hip from worsening, surgery, and especially alleviating all this pain so I could carry on and live a normal life. I honestly thought that I would need time to consider whether or not to pursue the methods and treatments that she had in mind for my body, but I surprised myself that I did not. I was more than sold right then and there. Looking at her and her earnest and sincere gaze and wealth of knowledge that flowed into simple and clear words about the suspected truth of this congenital hip dysplasia along with the other string of diagnoses, I had no qualms to put my health and faith into her hands (pardon the pun).

For the first time ever after a doctor consultation, I was confident and fearless to overcome this recent truth. I also reasoned that I had absolutely nothing to lose now after so many years of pain that was hidden and not rearing its ugly head, demanding not to be ignored and to be treated by any means necessary.
When you are backed into a corner and when desperation, survival, and overcoming are the tools you have in that spot you are in, there are only two choices in life: To Fight or To Flee.  Well, I was more than ready to fight.

From the moment on and after a quick confirming glance of confidence from my Father, Dr. Gambini and I shook hands into a sealed agreement that this was the alternative route that I was to follow and that we were in this together to work with my body.

I said to her simply and with finality: “Let’s do this.”

I believed in her and I, my body, and all of us working together to combat this. Our journey to try and right the wrong and damage to my body as a result of lifetime immunosuppressant Prednisone medication that had maintained my life-saving kidney transplants and suspected congenital challenges had begun.

**denotes fake name to protect privacy of individual

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 mwu82@yahoo.com. Thank you for reading!

New York State Organ Donor Registration [click here]

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

J Philip Faranda January 23, 2012 at 10:45 PM
My late brother was a kidney/pancreas recipient in 1998. I believe that donors are, literally, angels.
Mary Wu January 24, 2012 at 02:53 AM
Thank you for taking the time to read and comment! That is amazing that your late brother received a kidney/pancreas in 1998, Mr. Faranda! I know a couple kidney pancreas recipients and it is so unbelievable to learn that they no longer have diabetes after such a transplant. could not agree more with you that donors are, most literally, angels. I certainly think of both of mine every single day!
Colleen Nunes January 24, 2012 at 12:07 PM
Wow! As an occupational therapist, I cannot believe that all the medical care and no one noticed your leg length discrepancy and need for a lift. Such a simple fix to give you relief! Glad you have found some one to help. Wishing you good health!
George Datino January 24, 2012 at 12:58 PM
Colleen, Believe it. I just lost my Dad where he was in the hospital with multiple things wrong with him and as each specialist paraded in and out, their only focus was on the "system" that they specialized in. As I questioned how one thing might be affecting something else, I would usually get this non-answer with a condescending attitude and out the door they would go. It wasn't until the final morning that I got one of the doctors to even consider the fact that a problem that none of them were even looking at might be the cause of many of the issues. Unfortunately he didn't survive the morning while the test was scheduled in the afternoon. Our society has turned medical care into a conveyor belt. A visit with a doctor has turned into " Please keep quiet and don't try and tell me how you feel, I need to read the results of your tests (given by staff members) and I will tell you what is wrong with you". The best doctors appointment I ever had was when my doctor (at the time) was leaving the practice and didn't care about running over the allotted two minutes and we actually had a full fledged discussion. I spoke, she listened and asked questions. She spoke, I listened and asked questions. It was amazing, I was actually able to answer questions about my health when my wife asked me when I got home.
gail burlakoff January 24, 2012 at 02:25 PM
Thank you, Mary, for sharing your story. You are a courageous young woman with lots of heart and I hope that this course of treatment will bring you ease. Good luck to you...and keep writing! I remember you and your lovely smile when you would check out books at the Mt. Pleasant library.
Mary Wu January 24, 2012 at 11:21 PM
Colleen, I have a very complicated medical history that goes back to when I was a baby! Feel free to go to http://kidneyconfessions.blogspot.com, which has previous chapters that I wrote of when my chronic pain and left hip problems started. My pediatric orthopedic surgeon starting at when I was age 10 did notice the significant leg discrepancy and first attempted a shoemaker, then crutches, and finally a wheelchair to alleviate the pain, but nothing really helped. It was after the success of my second kidney transplant that the leg and hip problems seemed to disappear, but returned in the last five years or so.
Mary Wu January 24, 2012 at 11:23 PM
Gail, thanks so much for taking the time to read and for commenting!! I haven't been at Mount Kisco Pleasant Library since last year, but I'll surely be visiting soon...probably this weekend! :-) I would probably know you by face rather than name, so I hope to see you at the library!! I still remember when my biological Mother use to work at Mount Pleasant Library! Fond memories! :-)
Mary Wu January 24, 2012 at 11:25 PM
George, I am so sorry to hear what your Father and your entire family went through as a result of such a negative encounter and endurance with the U.S. healthcare system! I really do feel for you, and many of my previous chapters at "Confessions of a Kidney Transplant Recipient" at http://kidneyconfessions.blogspot.com go into the various and unfortunate doctor-patient encounters. It is completely amazing and a breath of fresh air that you had with that doctor who listened to you...fathon that, A REAL CONVERSATION!! Makes such a world of difference!! :-)


More »
Got a question? Something on your mind? Talk to your community, directly.
Note Article
Just a short thought to get the word out quickly about anything in your neighborhood.
Share something with your neighbors.What's on your mind?What's on your mind?Make an announcement, speak your mind, or sell somethingPost something