Chapter 6: Back to the Beginning

It was the winter of 1995 and I was 12-years-old when I found out that my transplanted kidney was failing.

I never suspected that anything was wrong. It was only when a pain unlike any other that I experienced before began in my right foot and crept up to my ankle when I tried to walk that led to this devastating truth. My Dad did not suspect anything either. I suppose both of us were accustomed to one health episode after another. It was nothing new. It was nothing foreign. I was no longer fearful or scared because all of these health problems were what I knew as my life. This was my life.

On the first night that the piercing pains in my right foot occurred, my Dad plopped a homemade bucket concoction on the tiled kitchen floors in front of me. Inside the green bucket was Epsom salt soaked in lukewarm water. He ordered me to place my foot in there. I did as I was told and hypnotically gazed at the foamy mixture. Just when I thought the pain was decreasing, it was not and only increased tenfold. Getting up, trying to stand, and walking was an unbearable pain that left me practically crawling on the floor like a little baby. By late in the evening of the second day or early morning of the third day, I had a high fever and was rushed to the emergency room. The diagnosis was simple: There was an infection in my foot that could only be cured through a hospital stay and an intravenous line with the necessary antibiotics dripping through my veins.

My doctor and Father spoke softly. I continued glancing at the doctor, waiting and wondering when he would look at me and speak to me—the patient. The doctor never once even looked at me or met my eyes. I glared at my Dad and the doctor, wanting to screech: “Why are you talking about me when I am right in the room? Aren’t I the patient? Isn’t this my body? I may be young, but I am not as stupid as you may think. Look at me, please. Speak to me about me.” They seemed to take my glares as fiery anger against the infection and the hospital stay that I was about to endure. I did not even bother to let them think differently. The doctor probably thought of me as some innocent and silly pre-teenager who did not know any better about what I was about to encounter. If only this doctor assigned to my case knew that I endured and was well aware of all the fun hospital adventures since I was a tiny tot. The truth was that I really could not care about this miniscule detail of them talking about me as if I was invisible because there was a larger picture with what was about to happen to me to fight against the infection.

I knew the routine: I was going to be put in a wheelchair. I was going to inhale the scent of alcohol, starch sheets, and sickness. I was going to see stark white walls and doctors and nurses rushing around focused more on the records and charts rather than their patients. I was going to hear the bleeping and beeping of machines and my Father’s voice consoling and comforting me. Most of all, I was going to feel the fear and fury that I was stuck in the hospital yet again.

When I was placed in the wheelchair, everything was brighter and everyone and my surroundings meshed together like a beautiful painting that no one could understand. I was like a baby discovering, seeing, and feeling the world for the first time. When I was carted off to my hospital room with the TV hanging up high in the corner, the remote-controlled bed, and on-call button just a finger away, I strangely felt at peace. It felt like I was home again—and that saddened and scared me that a hospital felt more like my home than my actual home with my family.

The next part of the routine was really what frightened me of all. The dreaded nurse who had a cart full of shiny and sterile needles, vials, alcohol pads, band aids, hospital tape, and syringes. The nurse’s job was to draw my blood or, in this case with my infection, try to create an IV (intravenous line). To do that, she would examine my highways of hidden blue veins, would stick one vein and then a catheter or tube would connect to a bag full of antibiotic fluid that hung on a shiny silver pole. The fluid would drip into the catheter/tubing, leading into my vein, which eventually traveled throughout my entire body and particularly the infected area to fight against it and be rid of it.

This nurse was no different from all the others. She came in with a pasted on smile, yet steely and cold eyes. I froze and my blood ran cold and turned into sharp shards of ice. Vague childhood memories slammed into me. I suddenly remembered being poked and prodded to find the good or decent vein as I watched helplessly at the supposed liquid cure was dripped into my weak body while it hung from the glinting silver pole. The memories were so strong that I started to cry right then and there even before the nurse took my arm to probe and prod for a decent vein. The reason I was so afraid was because it was a tedious challenge to find a good vein in me. My veins were tiny and my skin was thick with rolls of fat. For the nurse who was about to face my veins and me to combat this infection that invaded my body, it was no different. I lay in the bed paralyzed with fear and the nurse’s cheery smile had turned realistic and sad for we knew what was ahead without saying any words. She had a job to do—find my vein to stick and get the intravenous line going. I had a job to do—try not to cry and stay brave, and above all, stay absolutely still.

My Father immediately left the room as soon as he saw my ramrod straight body and me gripping on the hospital bed railings. I was no longer a little toddler that he had to hold down while I squirmed and screamed. I was no longer a little girl whose hand he held on to when I was stuck with one too many needles. I was going to be a teenager. I could handle this. I had to handle this. Seriously, what choice did I really have?

It took literally three attempts for the nurse to find that vein. By the time she found it, I was more so sore from staying so corpse-like still rather than from the needle or the black and blue indentations that were beginning to form from the two missed intravenous needle shots. As for the nurse, she looked like she just went to battle. I could have sworn that she wiped sweat from her brow. The needle under my skin and tube that protruded out from it was like an ugly little monster that pinched my left hand. When my Father returned in the room, I gave him a weak smile and chuckled: “Oh, I must have just been a pin cushion in my past life.” My Father just met my smile and pinched my cheek playfully, but I could read combined sadness and pride at how brave I was in his smoldering eyes.

It took less than a week for the infection to go away and I cheered on my body at its combative attitude. I was so excited to finally leave that hospital yet again. I scrawled in my diary with my one good right hand how thankful I was that I was going to soon leave the hospital. After all, hospitals were not considered a fun place where you were cutting cheese, popping the wine cork, and dancing until all hours on end. Instead, hospitals were considered scary and unsettling with a sickness stamp of approval, but I must have been a weird girl because I never really thought of hospitals as too frightening. Rather, I found hospitals incredibly and utterly boring. There were only so many talk shows and soap operas that I could watch on the television. There were only so many phone calls I could take with repeating: “Yes, I’m okay. No, don’t worry about me.” I craved returning to school to fret about my exams, see my friends who stuck by me, and even encounter some teasing and taunting just to remind me that it was a normal routine of me being a funny little freak.

I did not know when it dawned on me that there was more to come and this latest hospital stay was not to be my last one. Maybe it was when the intravenous line needle was removed and those black and blue marks deepened to a grotesque royal purple shade. Maybe it was when I was packing up, grinning, and ready to leave that dreaded hospital. Perhaps it was when I played the last round of Scrabble with my aunt when she tried to distract me from what the doctors were whispering to my Dad about. Or maybe it was when I saw the jubilant expression on my Father’s face at me finally leaving the hospital fall headfirst into worry and anguish. Yes, I think that was when I knew something was wrong and the doctors and my Dad did not even have to utter one single word. Just their stares of sadness and pity towards me were words enough to form the unspeakable news. The worst news ever: My kidney from my first kidney transplant was failing. I only had 10% function of the kidney left and I had to be prepped for dialysis yet again and ultimately receive another kidney transplant to save my life. I did not really comprehend at the time that my life was hanging in a precarious balance and it would take another life to save mine.

No one ever looked me in the eyes and announced: “Hey, Mary, your life is hanging by a thread and you have to have another kidney transplant.” I think saying it was too true and too chilling to all of us. It also helped that I was thought of as a pre-teenager who did not know much of anything, when I knew more than my fair share of what was going on with my body. This latest transplant news only hit me full force when I heard my Father talking to my sister on the phone that I needed another kidney transplant. He was sitting right next to me and spoke normally and calmly as thought it was a beautiful day in the neighborhood, and so I, in turn, felt that the failure of my first kidney transplant was destined to happen sooner or later and was “normal” in its own way.

When I fully understood that my transplanted kidney was failing, I was numb. I wanted to feel something—anger or sadness, acceptance or understanding, anything at all. But, I felt nothing. All the medical facts of what I had to do to prevent my kidney function from worsening even more circled around like a vicious gang of sharks ready to attack me. I began to see my nephrologist on more than a regular basis and was pricked with one too many needles all over again to constantly monitor my kidney function through bloodwork. I was suddenly forced to watch what I ate: no to extremely low sodium because salt/sodium made the kidneys work harder to remove wastes through urine, no to low calcium products (milk, cheese—my favorite, yogurt, and more) though I was not even able to recall why. I was so preoccupied with tests, my Father and doctors monitoring me, and trying to live a daily routine with school that I did not have time to feel afraid, question, or quiver from the upsetting reality that the only outcomes that were to come about sooner or later were:

-Start on a dialysis machine to function as my soon-to-be completely failed kidney

-A living organ donor who was a perfect match to donate their kidney to me

-An organ donor who was deceased and a perfect match to save my life

If time ran out, the only remaining conclusion was death.

I could not or would not think of death. It was not an option. My only option was life, but sometimes greater and invisible forces or destiny make choices for us. This was one choice I had no control over. This was one choice that was out of my hands and into something or someone greater that I could not see, but only believe and have hope and faith in that I could only live. It was only a matter of time revealing to me IF my life was to be saved so I could live it out to the fullest or if it was maybe time for me to die.

3 comments:

Eva B said...

the part where you wrote about your dawning realisation that everything was not right and that you would need another transplant was really nicely written, I thought. As always, thank you for sharing all this with us - it was a really touching chapter.

Alice said...

Mary, this chapter was really strong, I had to skip few lines because I was feeling bad, I mean, you described what happened with the infection and your scare of the needs so well that it was like I was there in your shoes and I felt so bad. This chapter is very touching and surely one of the best you wrote for many reasons (you make understand people who never experienced your situation what it really feels like, well written etc).

Catherine said...

This chapter was very hard to read. It was hard to understand sometimes because of the medical words that I don't know (I can't speak english fluently! sorry!). It was also hard to read because I could feel how hard it have been on you. I could feel your pain though your words and you know how sensitive I am! I felt very bad reading about your experience in this hospital as a young little girl.
I hope next chapter will be more joyful!
Big hugs sweetie Mary!